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| Show your Parkie Pride by displaying the red tulip - the international symbol for PD! |
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| This set of four Red Tulip coffee/tea mugs makes a great holiday gift! |
Monday, December 13, 2010
Parkinson's Gifts for the Holidays
You still have time to order these adorable Parkinson's advocacy gifts! And remember that 100% of all proceeds go to the American Parkinson Disease Association!
Friday, December 10, 2010
The 12 Days of Parkinson's!
In the spirit of Christmas I thought we'd have a little fun!
The 12 Days of Parkinson's
On the first day of Parkinson's my illness gave to me,
a diagnosis of PD.
On the second day of Parkinson's my illness gave to me,
two shaky limbs and a diagnosis of PD.
On the third day of Parkinson's my illness gave to me,
three Levodopa, two shaky limbs, and a diagnosis of PD.
On the fourth day of Parkinson's my illness gave to me,
four muscles cramping, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the fifth day of Parkinson's my illness gave to me,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the sixth day of Parkinson's my illness gave to me,
six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the seventh day of Parkinson's my illness gave to me,
seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the eighth day of Parkinson's my illness gave to me,
bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the ninth day of Parkinson's my illness gave to me,
nine impaired movements, bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the tenth day of Parkinson's my illness gave to me,
ten crooked walkers, nine impaired movements, bradykinesia,
seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the eleventh day of Parkinson's my illness gave to me,
eleven doctor visits, ten crooked walkers, nine impaired movements,
bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the twelfth day of Parkinson's my illness gave to me,
twelve days with no sleep, eleven doctor visits, ten crooked walkers, nine impaired movements,
bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
The 12 Days of Parkinson's
On the first day of Parkinson's my illness gave to me,
a diagnosis of PD.
On the second day of Parkinson's my illness gave to me,
two shaky limbs and a diagnosis of PD.
On the third day of Parkinson's my illness gave to me,
three Levodopa, two shaky limbs, and a diagnosis of PD.
On the fourth day of Parkinson's my illness gave to me,
four muscles cramping, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the fifth day of Parkinson's my illness gave to me,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the sixth day of Parkinson's my illness gave to me,
six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the seventh day of Parkinson's my illness gave to me,
seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the eighth day of Parkinson's my illness gave to me,
bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the ninth day of Parkinson's my illness gave to me,
nine impaired movements, bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the tenth day of Parkinson's my illness gave to me,
ten crooked walkers, nine impaired movements, bradykinesia,
seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the eleventh day of Parkinson's my illness gave to me,
eleven doctor visits, ten crooked walkers, nine impaired movements,
bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
On the twelfth day of Parkinson's my illness gave to me,
twelve days with no sleep, eleven doctor visits, ten crooked walkers, nine impaired movements,
bradykinesia, seven hopeful prayers, six monthly meetings,
FIVE MORE DAMN PILLS!
four muscle cramps, three Levodopa, two shaky limbs,
and a diagnosis of PD.
Thursday, December 9, 2010
Parkinson's Disease: It's Not Just About the Shakes
It's time we bring awareness to an often overlooked aspect of PD - the emotional toll this disease takes on its victims. Read this from The New York Times -
The Emotional Toll of Parkinson's Disease
And for those in the spousal caregiver role, check out this wonderful website -
The Well Spouse Association: Support for Spousal Caregivers
The Emotional Toll of Parkinson's Disease
And for those in the spousal caregiver role, check out this wonderful website -
The Well Spouse Association: Support for Spousal Caregivers
Wednesday, December 8, 2010
Life With Shaky Interviews!
In January I will begin conducting interviews with PWP, their caregivers, family, and friends, to be posted weekly on Life With Shaky. If you have something to say and would like to be interviewed, email Mary at keithandmary_3@yahoo.com with your name, contact information and a brief bio of you, your family, your PD situation, and why you would like to be interviewed.
Monday, December 6, 2010
Along for the Ride
In the past few years as Keith and I have butted heads over most PD related issues, I have often grumbled under my breath I'm just along for the ride! I couldn't understand why I was the one who always had to cave, always had to give in to what he wanted. From exercising to eating healthy to moving and everything in between, Keith has always won those tiny little battles. I used to think if Randy Pausch can turn all those decisions over to his wife, why can't Keith? Sadly, Randy Pausch had terminal cancer, Keith does not, but the sentiment is the same - it is my shoulders that all of this is going to fall onto some day, so shouldn't I have final say in what our long-term future plans are? I am not too proud to admit that this is how I have often felt in the past. All that changed this week after reading a PD book that slapped me around and put me in my place.
Keith and I are always reading any and all PD books we can get our hands on. Last week Keith came home from the library with a few older PD books. One of them, Caring for the Parkinson's Patient, really hit home. Chapter Three, Parkinson's Disease and the Family, Karen Boyd Worley and Raye Lynne Dippel, states this:
When an individual suffers from Parkinson's disease, it is not just a personal matter but a reality that affects every member of the family. . . At times, family members rise above the difficulties and demonstrate not only adequate adjustment but also inspiring personal growth. On other occasions, the stress becomes too much and families begin to behave in dysfunctional ways. . . What accounts for the ability of some families to struggle through hard times - to form uniquely workable solutions to their situation - while others seem to become mired in unpleasant, hurtful, or unhealthy interactions?
While Keith and I have many times disagreed on how to manage this disease and what future plans we should put into place, I have always been proud of the way we have adapted our lives, our entire way of life, to suit PD. We have provided our children with security and stability, at the same time leaving room for the flexibility that is often needed just to survive. We work hard "to form uniquely workable solutions" to our own situation. Still, there is always that side of me that secretly thinks I can do better.
Anyone familiar with me at all knows I have a love/hate relationship with Keith's hobbies, namely cars. I love that he has something to do, something he enjoys that keeps him motivated, active and happy. At the same time I hate that this passion steals him away from me and the kids. Now that the house is up for sale and Keith has sold his beloved Camaro, I can't help but hope that we will move into a house without a shop. If I'm really lucky, maybe I can convince him to move several hours away, deep into the Western Highlands of the Allegheny Mountains. Yes, you read that right. I want to take away my husband's hobby and take him away from the only home he's ever known. In doing that I can productively take care of him without any distractions and I will be close to my dear friends who always manage to put a smile on my face no matter how trying PD can be. But then I read this:
As many as half of all parkinsonian patients suffer from depression . . . If the patient's activities are severely restricted, it may necessitate early retirement along with the accompanying financial worries. New activities must be developed to prevent the onset of boredom. The fear experienced when contemplating an unknown future . . . must be faced head on. Caregivers and care receivers have noted that sorrow appears to be triggered by loss of future plans, restricted social life, and inability to travel and participate in hobbies . . . as patients become more isolated and apathetic, environmental stimulation is significantly diminished. This lack of stimulation contributes to the likelihood of depression and decreased intellectual stimulation, which in turn can cause an existing cognitive impairment to appear even more serious than it is.
Simply put, taking away Keith's hobbies and moving him to an unfamiliar environment where he won't have the social interaction he is used to is inviting depression and cognitive impairment. Not exactly what I had in mind. My selfish side wants to have it my way because I am going to be the one taking care of us all at some point. Do I not have the right to do whatever it takes to make it easier on myself when that time comes? Well, no I don't, as I have recently come to realize.
It is true that with PD I am just along for the ride. To keep Keith as healthy as possible and off the slippery slope of depression, dementia and physical decline, I need to encourage as much time spent on his hobbies as possible, and lots of social interactions in familiar surroundings. My efforts to slow down this ride may end up accelerating it instead. So from this day on I will try hard to just sit back and enjoy this ride.
For many of us, PD is a very long, slow roller coaster ride with many ups and downs, even a few loops thrown at us from time to time. For years I have assumed that as the would-be caregiver, I am the one running the controls. Instead of sitting back and revelling in the thrill of the ride, I thought I could sit front and center, in full view of the tracks and where the ride was headed, preparing all of my passengers for what was up ahead. But you know what? I am not in charge. This isn't my roller coaster. Hell, this isn't even my amusement park. I have happily paid the price to get into this park. I patiently waited for my turn on this ride and I got butterflies in my stomach as I approached that first big hill. But I need to remember that Keith is the one in charge. He is the one who built this ride and I am one of the passengers. I am along for the ride, the ride of my life. And oh boy! What a ride!
Keith and I are always reading any and all PD books we can get our hands on. Last week Keith came home from the library with a few older PD books. One of them, Caring for the Parkinson's Patient, really hit home. Chapter Three, Parkinson's Disease and the Family, Karen Boyd Worley and Raye Lynne Dippel, states this:
When an individual suffers from Parkinson's disease, it is not just a personal matter but a reality that affects every member of the family. . . At times, family members rise above the difficulties and demonstrate not only adequate adjustment but also inspiring personal growth. On other occasions, the stress becomes too much and families begin to behave in dysfunctional ways. . . What accounts for the ability of some families to struggle through hard times - to form uniquely workable solutions to their situation - while others seem to become mired in unpleasant, hurtful, or unhealthy interactions?
While Keith and I have many times disagreed on how to manage this disease and what future plans we should put into place, I have always been proud of the way we have adapted our lives, our entire way of life, to suit PD. We have provided our children with security and stability, at the same time leaving room for the flexibility that is often needed just to survive. We work hard "to form uniquely workable solutions" to our own situation. Still, there is always that side of me that secretly thinks I can do better.
Anyone familiar with me at all knows I have a love/hate relationship with Keith's hobbies, namely cars. I love that he has something to do, something he enjoys that keeps him motivated, active and happy. At the same time I hate that this passion steals him away from me and the kids. Now that the house is up for sale and Keith has sold his beloved Camaro, I can't help but hope that we will move into a house without a shop. If I'm really lucky, maybe I can convince him to move several hours away, deep into the Western Highlands of the Allegheny Mountains. Yes, you read that right. I want to take away my husband's hobby and take him away from the only home he's ever known. In doing that I can productively take care of him without any distractions and I will be close to my dear friends who always manage to put a smile on my face no matter how trying PD can be. But then I read this:
As many as half of all parkinsonian patients suffer from depression . . . If the patient's activities are severely restricted, it may necessitate early retirement along with the accompanying financial worries. New activities must be developed to prevent the onset of boredom. The fear experienced when contemplating an unknown future . . . must be faced head on. Caregivers and care receivers have noted that sorrow appears to be triggered by loss of future plans, restricted social life, and inability to travel and participate in hobbies . . . as patients become more isolated and apathetic, environmental stimulation is significantly diminished. This lack of stimulation contributes to the likelihood of depression and decreased intellectual stimulation, which in turn can cause an existing cognitive impairment to appear even more serious than it is.
Simply put, taking away Keith's hobbies and moving him to an unfamiliar environment where he won't have the social interaction he is used to is inviting depression and cognitive impairment. Not exactly what I had in mind. My selfish side wants to have it my way because I am going to be the one taking care of us all at some point. Do I not have the right to do whatever it takes to make it easier on myself when that time comes? Well, no I don't, as I have recently come to realize.
It is true that with PD I am just along for the ride. To keep Keith as healthy as possible and off the slippery slope of depression, dementia and physical decline, I need to encourage as much time spent on his hobbies as possible, and lots of social interactions in familiar surroundings. My efforts to slow down this ride may end up accelerating it instead. So from this day on I will try hard to just sit back and enjoy this ride.
For many of us, PD is a very long, slow roller coaster ride with many ups and downs, even a few loops thrown at us from time to time. For years I have assumed that as the would-be caregiver, I am the one running the controls. Instead of sitting back and revelling in the thrill of the ride, I thought I could sit front and center, in full view of the tracks and where the ride was headed, preparing all of my passengers for what was up ahead. But you know what? I am not in charge. This isn't my roller coaster. Hell, this isn't even my amusement park. I have happily paid the price to get into this park. I patiently waited for my turn on this ride and I got butterflies in my stomach as I approached that first big hill. But I need to remember that Keith is the one in charge. He is the one who built this ride and I am one of the passengers. I am along for the ride, the ride of my life. And oh boy! What a ride!
Monday, November 29, 2010
Got Hope?
I get this question often - why bother? Why bother writing a blog when it doesn't change the fact that I am the wife of a PWP? Why bother with the hassle of selling clothing and merchandise for a measly few bucks to donate to the APDA when they need millions and millions of dollars? Why bother donating money at all when they don't have a cure? Why bother? What good does it do?
The answer is pretty simple. What other choice do I have? I watch my husband deteriorate a little more each day, progressing further and further into the depths of a cruel disease. I can't cure him. He doesn't want me hovering over him. There's not much else I can do. I refuse to sit back and watch this horrible disease take over and do absolutely nothing at all. If what I do amounts to less than a drop of water in a well that's okay because at least I am actively doing something. What I do gives me hope. Hope for a cure? Well of course I want a cure. Don't we all? But my hopes are much more tangible than that. Each morning I pray that today will be better than the one before, that Keith will have more energy, fewer muscle cramps, more strength. I hope that I will have a deeper understanding of what PD is doing to Keith. I hope each day that I will find comfort and friendship in my blogging. I hope that my fellow PD friends and their families are having good days as well. I hope that the money I contribute to the APDA will help produce more social networking for PWP, as it is so very important. I hope to somehow find enough money to incorporate my non-profit in order to help all the children with loved ones affected by PD. I hope that the words I write in this blog will reach just one more person and that person will perhaps find some comfort, if only for awhile. I hope that my regular readers, those who have PD or love someone who has it, will continue to find comfort and companionship via this blog.
My hopes are not exclusive to Keith and a cure yet the implication is that my hope is naive, that I will somehow lose it when catheters, feeding tubes, and wheelchairs come into play. Two years ago I met a young lady in an online medical community whose husband had PD. They had two young children but divorced when he became disabled. She laughed bitterly when I told her of our family and that we were trying to conceive again. After a long, heated discussion about kids and PD, I told her that for the most part, PD does not scare me, I have hope and I strongly believe that God will not give me anything I can't handle. "You are stupid then, because what is hope going to do for you when your kids are sick in the middle of the night and your husband can't do a damn thing to help?" she said. Honestly, I can't say right now what I would do in that situation but I imagine much of my life would be lived as a single mom, doing most, if not all, of the working and child rearing myself. But I had to ask her in return - is a husband in a wheelchair, one who can't help in the middle of the night, disqualified as a family member? Is he not still your husband and father of your children? Is he not still a human being, with feelings and thoughts? She refused to answer me and I have not spoken with her since.
I married Keith for better or worse, in sickness and in health, but my hope transcends my vows because it is not just my marriage and my husband I hope for. In my constant thoughts are all PWP and their loved ones, especially their children, grandchildren, nieces and nephews. My hope is for the confused eight year old who just wants to know that her mom is going to be okay, and for the middle-aged woman who can't sleep, desperately searching the internet in the middle of the night looking for answers. My hope goes out to the elderly gentlemen tirelessly and tenderly massaging the curled, cramped feet of their wives. My hope is for all those individuals who take the time to go to monthly PD support groups, conventions and fundraisers. My hope is much more universal than self-serving. Naive? I think not.
So why do I bother blogging, reaching out to others with PD, raising money for the APDA, establishing a non-profit? I do it because I can. I do it because it gives me hope. A lot of people are counting on me for that hope, especially Keith and our children. Hope keeps me strong, and I am going to need all the strength I can muster for the journey ahead.
So who's with me? Anyone else Got Hope?
The answer is pretty simple. What other choice do I have? I watch my husband deteriorate a little more each day, progressing further and further into the depths of a cruel disease. I can't cure him. He doesn't want me hovering over him. There's not much else I can do. I refuse to sit back and watch this horrible disease take over and do absolutely nothing at all. If what I do amounts to less than a drop of water in a well that's okay because at least I am actively doing something. What I do gives me hope. Hope for a cure? Well of course I want a cure. Don't we all? But my hopes are much more tangible than that. Each morning I pray that today will be better than the one before, that Keith will have more energy, fewer muscle cramps, more strength. I hope that I will have a deeper understanding of what PD is doing to Keith. I hope each day that I will find comfort and friendship in my blogging. I hope that my fellow PD friends and their families are having good days as well. I hope that the money I contribute to the APDA will help produce more social networking for PWP, as it is so very important. I hope to somehow find enough money to incorporate my non-profit in order to help all the children with loved ones affected by PD. I hope that the words I write in this blog will reach just one more person and that person will perhaps find some comfort, if only for awhile. I hope that my regular readers, those who have PD or love someone who has it, will continue to find comfort and companionship via this blog.
My hopes are not exclusive to Keith and a cure yet the implication is that my hope is naive, that I will somehow lose it when catheters, feeding tubes, and wheelchairs come into play. Two years ago I met a young lady in an online medical community whose husband had PD. They had two young children but divorced when he became disabled. She laughed bitterly when I told her of our family and that we were trying to conceive again. After a long, heated discussion about kids and PD, I told her that for the most part, PD does not scare me, I have hope and I strongly believe that God will not give me anything I can't handle. "You are stupid then, because what is hope going to do for you when your kids are sick in the middle of the night and your husband can't do a damn thing to help?" she said. Honestly, I can't say right now what I would do in that situation but I imagine much of my life would be lived as a single mom, doing most, if not all, of the working and child rearing myself. But I had to ask her in return - is a husband in a wheelchair, one who can't help in the middle of the night, disqualified as a family member? Is he not still your husband and father of your children? Is he not still a human being, with feelings and thoughts? She refused to answer me and I have not spoken with her since.
I married Keith for better or worse, in sickness and in health, but my hope transcends my vows because it is not just my marriage and my husband I hope for. In my constant thoughts are all PWP and their loved ones, especially their children, grandchildren, nieces and nephews. My hope is for the confused eight year old who just wants to know that her mom is going to be okay, and for the middle-aged woman who can't sleep, desperately searching the internet in the middle of the night looking for answers. My hope goes out to the elderly gentlemen tirelessly and tenderly massaging the curled, cramped feet of their wives. My hope is for all those individuals who take the time to go to monthly PD support groups, conventions and fundraisers. My hope is much more universal than self-serving. Naive? I think not.
So why do I bother blogging, reaching out to others with PD, raising money for the APDA, establishing a non-profit? I do it because I can. I do it because it gives me hope. A lot of people are counting on me for that hope, especially Keith and our children. Hope keeps me strong, and I am going to need all the strength I can muster for the journey ahead.
So who's with me? Anyone else Got Hope?
Monday, November 22, 2010
Confessions of a PD Wife, 3
1. I'm tired of waiting for a cure. I want to take Keith to Lourdes, France and pray for a miracle.
2. Sometimes I want to blog about certain issues that I feel are important to PWP, such as money, sex, and hygiene, but I don't out of respect for Keith's privacy.
3. I freak out every time Keith forgets something, because I think dementia is setting in.
4. I want to take over the lawn care so Keith won't have to worry with it, but I still have not learned how to operate the riding mower.
5. I am beginning to feel the pangs of sacrifice, though they are Keith's, not mine.
6. I feel guilty thinking that I don't do enough for Keith. It's difficult to accept that he doesn't want me to do everything for him.
7. I have not done a very good job in keeping up with Keith's nightly foot massages.
8. I am pleasantly surprised that Keith is able and willing to do more with two young girls than he was with just one.
9. I secretly look for physical signs of PD in Bryan.
10. I have come to realize that the cognitive issues related to PD are going to be much more difficult to manage than I originally thought.
2. Sometimes I want to blog about certain issues that I feel are important to PWP, such as money, sex, and hygiene, but I don't out of respect for Keith's privacy.
3. I freak out every time Keith forgets something, because I think dementia is setting in.
4. I want to take over the lawn care so Keith won't have to worry with it, but I still have not learned how to operate the riding mower.
5. I am beginning to feel the pangs of sacrifice, though they are Keith's, not mine.
6. I feel guilty thinking that I don't do enough for Keith. It's difficult to accept that he doesn't want me to do everything for him.
7. I have not done a very good job in keeping up with Keith's nightly foot massages.
8. I am pleasantly surprised that Keith is able and willing to do more with two young girls than he was with just one.
9. I secretly look for physical signs of PD in Bryan.
10. I have come to realize that the cognitive issues related to PD are going to be much more difficult to manage than I originally thought.
Friday, November 19, 2010
Parkinson's and Kids
I am always curious about how other couples manage their lives with kids. Add PD and I'm inclined to become downright nosey. So I thought I'd share some of the ways we have made a go of PD and kids. Mind you, this is not a How To guide on raising kids with PD. I realize that much of what we do may not work for other families, but this is how we roll -
1. Read, read, read to the kids! As any PWP knows, PD often causes the voice to become softer and quieter. Voice exercises are recommended, but who has time for that? Reading to your kids will allow time for those annoying voice exercises while spending quality time together. Keith spends a great amount of time each evening reading to the girls, using exaggerated facial expressions and voice inflections. Singing has the same effect and works well in the car. Age doesn't matter either - kids of all ages love being read to. Reading the Bible or school assignments aloud works well with my teenage son, as does learning the lyrics to and singing along with his favorite songs.
2. Co-sleep. Keith and I are natural parents, following our instincts rather than the latest books. Some call it Attachment Parenting, but we prefer to describe it as Natural Parenting. Part of our natural lifestyle is co-sleeping, or sleep sharing. Our girls, ages four and one, sleep in the bed with us and have since birth. We have queen and full mattresses pushed together to make room for everyone. This allows for some much-needed physical bonding between Keith and the girls. Thanks to PD, Keith just isn't able to hold weight for any significant length of time, so holding either one of our girls proves difficult. Co-sleeping, however, gives him that extra snuggle time that the girls seem to thrive on, making Keith one happy dad.
3. Home school. The main reason we now home school is because we need the flexibility to have quality family time when Keith is home and is responding to his medication. In the old days when my son was in public school our time as a family was limited to evenings, after Keith had put in a good ten hours at work and Joe had spent almost as many at school. By the time homework and dinner were through any chance of good quality time was buried under tremors, muscle soreness, fatigue, and the endless waiting for the medication to kick in. Now that we are homeschooling, if Keith is home and active, then we are home and active with him. If he is out running errands, then we are running errands with him. If he is off work, then we are on a field trip or at church together or just hanging out at home being a family. When Keith needs a nap, we take a nap together. Our quality of life and the quantity of time we have together have greatly increased, all due to homeschooling.
4. Bicycling. Biking together is something that we don't actually do yet, but really want to do once we are able to get a couple of tandem bikes. Studies show that tandem bicycling can drastically reduce PD symptoms. Our kids love riding their bikes, so what a great way to spend time together doing something the entire family can enjoy!
5. Purchase PD approved clothes for the little ones. Fortunately for us, most clothing for babies and toddlers comes in styles that are easy for PWP to use - Velcro shoes, stretchy elastic tops, wide bottom pant legs, zippers instead of buttons. It's easy to want to purchase those cute grown-up looking clothes, like the zipper and snap blue jeans for a three-month old, or the button down flannel shirt for a two year old, but I always try to remember that if my child can't get them on herself, Keith probably won't be able to either. We usually go for the elastic, wide legged pants, Velcro or slip on shoes, loose over sized tops. As a father Keith needs and wants to be able to help with the daily child rearing chores, and simple choices like these can make all the difference.
When it comes to raising kids with Parkinson's, the bottom line is that you have to be able to think outside the box. Do whatever it is you need to do in order to spend a large amount of quality time with your family. PD doesn't have to impair the relationships you have with your children if you are willing to find and seize those opportunities when they are available. If you can find some way to combine PD exercises and time with the kids, by all means, do it! Your kids will appreciate the time together while you are fighting the progression of the disease.
1. Read, read, read to the kids! As any PWP knows, PD often causes the voice to become softer and quieter. Voice exercises are recommended, but who has time for that? Reading to your kids will allow time for those annoying voice exercises while spending quality time together. Keith spends a great amount of time each evening reading to the girls, using exaggerated facial expressions and voice inflections. Singing has the same effect and works well in the car. Age doesn't matter either - kids of all ages love being read to. Reading the Bible or school assignments aloud works well with my teenage son, as does learning the lyrics to and singing along with his favorite songs.
2. Co-sleep. Keith and I are natural parents, following our instincts rather than the latest books. Some call it Attachment Parenting, but we prefer to describe it as Natural Parenting. Part of our natural lifestyle is co-sleeping, or sleep sharing. Our girls, ages four and one, sleep in the bed with us and have since birth. We have queen and full mattresses pushed together to make room for everyone. This allows for some much-needed physical bonding between Keith and the girls. Thanks to PD, Keith just isn't able to hold weight for any significant length of time, so holding either one of our girls proves difficult. Co-sleeping, however, gives him that extra snuggle time that the girls seem to thrive on, making Keith one happy dad.
3. Home school. The main reason we now home school is because we need the flexibility to have quality family time when Keith is home and is responding to his medication. In the old days when my son was in public school our time as a family was limited to evenings, after Keith had put in a good ten hours at work and Joe had spent almost as many at school. By the time homework and dinner were through any chance of good quality time was buried under tremors, muscle soreness, fatigue, and the endless waiting for the medication to kick in. Now that we are homeschooling, if Keith is home and active, then we are home and active with him. If he is out running errands, then we are running errands with him. If he is off work, then we are on a field trip or at church together or just hanging out at home being a family. When Keith needs a nap, we take a nap together. Our quality of life and the quantity of time we have together have greatly increased, all due to homeschooling.
4. Bicycling. Biking together is something that we don't actually do yet, but really want to do once we are able to get a couple of tandem bikes. Studies show that tandem bicycling can drastically reduce PD symptoms. Our kids love riding their bikes, so what a great way to spend time together doing something the entire family can enjoy!
5. Purchase PD approved clothes for the little ones. Fortunately for us, most clothing for babies and toddlers comes in styles that are easy for PWP to use - Velcro shoes, stretchy elastic tops, wide bottom pant legs, zippers instead of buttons. It's easy to want to purchase those cute grown-up looking clothes, like the zipper and snap blue jeans for a three-month old, or the button down flannel shirt for a two year old, but I always try to remember that if my child can't get them on herself, Keith probably won't be able to either. We usually go for the elastic, wide legged pants, Velcro or slip on shoes, loose over sized tops. As a father Keith needs and wants to be able to help with the daily child rearing chores, and simple choices like these can make all the difference.
When it comes to raising kids with Parkinson's, the bottom line is that you have to be able to think outside the box. Do whatever it is you need to do in order to spend a large amount of quality time with your family. PD doesn't have to impair the relationships you have with your children if you are willing to find and seize those opportunities when they are available. If you can find some way to combine PD exercises and time with the kids, by all means, do it! Your kids will appreciate the time together while you are fighting the progression of the disease.
SALE!
Huge FAMILY AND FRIENDS sale at Life With Shaky, November 20 - 23!
Use discount code Friend10 to save $10 on orders of $50 or more!
Use discount code Friend10 to save $10 on orders of $50 or more!
Wednesday, November 17, 2010
Get It While You Can!
As usual, our Shaky/I'm With Shaky long sleeve tees are going fast. Get yours now and help support the American Parkinson Disease Association!
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This ADORABLE tote makes a great gift for the holidays!
Shop LIFE WITH SHAKY now!
Monday, November 15, 2010
Words
"Hear the meaning within the word." William Shakespeare
As children we have all undoubtedly chanted the words, "sticks and stones may break my bones, but words will never hurt me!" These words are often spoken with much gusto, clenched fists, tears in eyes, facing down the playground bully, but as adults we know how utterly ridiculous this saying is. Truth is, words can, and often do, hurt.
Words - they can be written, whispered, shouted, spoken, sang and prayed. They can be truthful, painful, dishonest, empowering, enlightening, crippling, judgemental, angry, happy. Words can be given and words can be broken. Words have shaped great nations, crushed families, spawned religions. We can never underestimate the power words have over us. Whether you are an articulate orator, a Pulitzer Prize winning poet, or just bumbling along trying to get your point across, know that what you say or write can have consequences that far surpass your expectations, and not always in a positive way. Words are weapons, and sometimes we find ourselves at war with one another, slinging words back and forth like hand grenades, with explosions that can shake us to the core.
The past five months have been devastatingly brutal on me, all due to words. Months ago I had the unfortunate experience of engaging in an exchange of both written and verbal words that uprooted nearly everything I thought I knew. The opposing side consisted mostly of individuals I care for deeply, though that didn't stop my from slinging my weapons directly at them. This war of words went on for some time, with many battles being fought behind the scenes. The dust finally settled with all parties retreating to our own corners to lick our many wounds, but the damage is irreparable. The words that were used like weapons in this exchange had enough power packed into them to completely destroy several relationships, with a ripple effect that continues even now. I do not at all regret my words, nor do I wish to take them back. Though hurtful, my words were true, and I walk away from this war battered, bleeding and bruised, but with head held high, knowing I was honest and that I will somehow learn from this experience.
I will not back down. In spite of all the angry words that were said, I will not slink away like a shamed dog with his tail tucked between his legs. I stand tall and proud, walking away from certain individuals with a finality that can not be undone. There comes a time in every one's life where you learn that putting your hand near a fire will burn it, so you stop. You stay away from the fire so you won't get burned. That is exactly what I have done.
Parkinson's disease is not going to make our lives easy, and while I don't expect an easy life by any means, I certainly don't want to do anything that will make our lives more difficult. My new rule for life is this - from here on out, I will surround myself only with people I know to be genuinely supportive, loving, helpful and positive. If you don't fit that description, then you just don't fit in. As strong as I like to think I am, I have learned in these past few months that I simply don't have it in me to raise three kids, deal with PD, and manage this huge storm cloud that looms over my head.
A word on forgiveness: by no means perfect, I do try to live by Christ's example, especially regarding forgiveness. I do have forgiveness in my heart for all wrongs done, those of long ago and those more recently. However, I can not erase my memories, therefore I can not forget. Also, it my strong personal belief that forgiveness does not equal atonement. You still have to make amends, make it right. Too much forgetting paired with forgiving quickly leads to enabling. That I will not be a part of.
How does this all relate to PD and my life with Shaky? Simple - with the negative components removed from my life, from our life together, I can be a much stronger wife and mother. I am not distracted from what my family needs by the sound of thunder rolling angrily in the distance. I have removed those storm clouds, walked away from those individuals it did more harm to associate with than not. It has been a painful break, no doubt, but I am confident that I am doing the right thing for me and my family.
" . . . but words will never hurt me."
Here are a few words that have brought me comfort recently:
"To see what is in front of one's nose needs a constant struggle." - George Orwell
"Being unwanted, unloved, uncared for, forgotten by everybody, I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat."
Mother Teresa
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa
Matthew 6:14-15: For if you forgive men their trespasses, your heavenly Father also will forgive you; but if you do not forgive men their trespasses, neither will your Father forgive your trespasses.
Romans 12:19-21 19 Do not give punishment for wrongs done to you, dear brothers, but give way to the wrath of God; for it is said in the holy Writings, Punishment is mine, I will give reward, says the Lord. 20 But if one who has hate for you is in need of food or of drink, give it to him, for in so doing you will put coals of fire on his head. 21 Do not let evil overcome you, but overcome evil by good.
As children we have all undoubtedly chanted the words, "sticks and stones may break my bones, but words will never hurt me!" These words are often spoken with much gusto, clenched fists, tears in eyes, facing down the playground bully, but as adults we know how utterly ridiculous this saying is. Truth is, words can, and often do, hurt.
Words - they can be written, whispered, shouted, spoken, sang and prayed. They can be truthful, painful, dishonest, empowering, enlightening, crippling, judgemental, angry, happy. Words can be given and words can be broken. Words have shaped great nations, crushed families, spawned religions. We can never underestimate the power words have over us. Whether you are an articulate orator, a Pulitzer Prize winning poet, or just bumbling along trying to get your point across, know that what you say or write can have consequences that far surpass your expectations, and not always in a positive way. Words are weapons, and sometimes we find ourselves at war with one another, slinging words back and forth like hand grenades, with explosions that can shake us to the core.
The past five months have been devastatingly brutal on me, all due to words. Months ago I had the unfortunate experience of engaging in an exchange of both written and verbal words that uprooted nearly everything I thought I knew. The opposing side consisted mostly of individuals I care for deeply, though that didn't stop my from slinging my weapons directly at them. This war of words went on for some time, with many battles being fought behind the scenes. The dust finally settled with all parties retreating to our own corners to lick our many wounds, but the damage is irreparable. The words that were used like weapons in this exchange had enough power packed into them to completely destroy several relationships, with a ripple effect that continues even now. I do not at all regret my words, nor do I wish to take them back. Though hurtful, my words were true, and I walk away from this war battered, bleeding and bruised, but with head held high, knowing I was honest and that I will somehow learn from this experience.
I will not back down. In spite of all the angry words that were said, I will not slink away like a shamed dog with his tail tucked between his legs. I stand tall and proud, walking away from certain individuals with a finality that can not be undone. There comes a time in every one's life where you learn that putting your hand near a fire will burn it, so you stop. You stay away from the fire so you won't get burned. That is exactly what I have done.
Parkinson's disease is not going to make our lives easy, and while I don't expect an easy life by any means, I certainly don't want to do anything that will make our lives more difficult. My new rule for life is this - from here on out, I will surround myself only with people I know to be genuinely supportive, loving, helpful and positive. If you don't fit that description, then you just don't fit in. As strong as I like to think I am, I have learned in these past few months that I simply don't have it in me to raise three kids, deal with PD, and manage this huge storm cloud that looms over my head.
A word on forgiveness: by no means perfect, I do try to live by Christ's example, especially regarding forgiveness. I do have forgiveness in my heart for all wrongs done, those of long ago and those more recently. However, I can not erase my memories, therefore I can not forget. Also, it my strong personal belief that forgiveness does not equal atonement. You still have to make amends, make it right. Too much forgetting paired with forgiving quickly leads to enabling. That I will not be a part of.
How does this all relate to PD and my life with Shaky? Simple - with the negative components removed from my life, from our life together, I can be a much stronger wife and mother. I am not distracted from what my family needs by the sound of thunder rolling angrily in the distance. I have removed those storm clouds, walked away from those individuals it did more harm to associate with than not. It has been a painful break, no doubt, but I am confident that I am doing the right thing for me and my family.
" . . . but words will never hurt me."
Here are a few words that have brought me comfort recently:
"To see what is in front of one's nose needs a constant struggle." - George Orwell
"Being unwanted, unloved, uncared for, forgotten by everybody, I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat."
Mother Teresa
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa
Matthew 6:14-15: For if you forgive men their trespasses, your heavenly Father also will forgive you; but if you do not forgive men their trespasses, neither will your Father forgive your trespasses.
Romans 12:19-21 19 Do not give punishment for wrongs done to you, dear brothers, but give way to the wrath of God; for it is said in the holy Writings, Punishment is mine, I will give reward, says the Lord. 20 But if one who has hate for you is in need of food or of drink, give it to him, for in so doing you will put coals of fire on his head. 21 Do not let evil overcome you, but overcome evil by good.
Sunday, November 7, 2010
Baby or Bust!
Today is our baby girl Cecilia's first birthday. One year ago today she was plucked, screaming, all eight pounds of her, from my body.
Keith and I had chosen a home birth this go-round for two reason: to avoid my having a third cesarean and to try and limit as much of the delivery/hospital stay stress and fatigue as possible for Keith, as it exaggerates his PD symptoms. As we learned three years earlier during the birth of our first daughter, Rielly-Anne, Keith is extremely uncomfortable staying in the hospital, and the emotional ups and downs of labor and delivery are almost as tough on him as they are on me. So we chose to go with a home water birth, deciding on Leslie as our midwife for all my prenatal care and birth, and continuing to see Dr. K, the wonderful family doctor I saw for the pregnancy and birth of Rielly-Anne. Due to my two prior cesareans, I was considered special needs, and was given top priority above all other patients. Leslie and Dr. K spared nothing to ensure a healthy baby and mom. Though we were unable to fulfill our dream of delivering little Cecilia at home, we consider her birth to be a wonderful experience with minimal undue stress placed upon Keith.
At 4 p.m. on November 6, at nearly forty-three weeks along, my water broke. I called Leslie, our midwife, immediately. She told me to do whatever prep work I needed to do for labor, take it easy and get plenty of rest. So I cleaned the house, pulled from the freezer my pre-made wholesome chicken soup and casserole, and made sure the birthing kit was in order and within easy reach. I had been having very strong contractions since my twentieth week, so we all fully expected labor to move along. At that point, contractions were mild and sporadic.
Keith arrived home with a few extra supplies we still needed. We placed a call to my sister telling her to get ready to come over at a moments notice, then made another call to Leslie. She would be there whenever we were ready; she was fairly sure that true labor would begin in the middle of the night. She was right - around 2 a.m. contractions were so strong that I could no longer stay in bed. I got up and just paced back and forth in the bedroom, finally waking Keith around 5. We went downstairs and made it through another hour before calling Leslie. She arrived at the house around 8 a.m. and was able to confirm that my contractions were becoming stronger and more regular, and also that there was meconium in the amniotic fluid. I called my sister, who arrived within the hour. She set about making the soup, taking care of the kids, keeping the house clean, while Keith and I went for a long walk to try and speed up the contractions. The walk did nothing - by 4 p.m., twenty four hours after my water broke, my labor had completely stopped. Leslie did all the things midwives do to jump start labor, from giving me organic, labor inducing herbs to belly massage. Nothing helped. Finally, during a conference call with Dr K, we all unanimously agreed that it would be in our best interest to deliver Cecilia via c-section at the hospital. Before agreeing to that, however, I made sure several criteria of ours would be met. 1. Keith would accompany me in the operating room as I was prepped for surgery, 2. Leslie would be allowed into the operating room with Keith during the c-section, 3. Cecilia would not be parted from either Keith or myself at any time, including immediately after birth, 4. I would be allowed to have her with me as soon as possible, even while in the recovery room, and 5. I would use only cloth diapers on her during our hospital stay. Dr. K agreed to all our wishes, so off to the hospital we went. My sister stayed at the house with the kids.
I would like to say that everything went smoothly after arriving at the hospital, but that was not the case at all. We had already pre-registered as a precaution, so that wasn't a problem, but trouble began with the spinal. The anesthesiologist was unable to place the needle. She stuck my back five times before getting it into place on the sixth try. It took longer to administer the spinal than to perform the surgery. During the c-section something went wrong in getting Cecilia out. We still aren't quite sure what the problem was, maybe she was simply stuck, but they had to pump my chest repeatedly, so hard my head was bouncing on the table, just to get her out. She finally made her way into the world at 8:12 p.m., weighing a little over 8 lbs. Fortunately, there was no meconium in her lungs, and they placed her into Keith's arms. He carried her down the hall and into the nursery, and along with Leslie, stayed by her side while they warmed her, measured and weighed her. After about fifteen minutes they brought her to me in the recovery room, where I was able to nurse her for the first time.
Several days later we returned home to begin a new life with our latest addition, Cecilia Mae. We struggled with bladder infections, leg quivers, back pain, several rounds of strong antibiotics, and severe food allergies for the first six months. Rielly-Anne tandem nursed during this time, which I believe helped her transition from being the youngest child to becoming a big sister. All in all, while this first year had a bit of a rough start, we have all adapted well and continue to learn every day. Keith has done exceptionally well, stepping up to help with the child rearing duties during times I know he is utterly exhausted. While the disease is more progressed than when we had Rielly-Anne, Keith is actually able to do more now. His determination to be a great father amazes me! Our children are so blessed to have him!
Happy birthday Cecilia Mae! May you be blessed with many, many more! Mommy and Daddy love you so much!
Keith and I had chosen a home birth this go-round for two reason: to avoid my having a third cesarean and to try and limit as much of the delivery/hospital stay stress and fatigue as possible for Keith, as it exaggerates his PD symptoms. As we learned three years earlier during the birth of our first daughter, Rielly-Anne, Keith is extremely uncomfortable staying in the hospital, and the emotional ups and downs of labor and delivery are almost as tough on him as they are on me. So we chose to go with a home water birth, deciding on Leslie as our midwife for all my prenatal care and birth, and continuing to see Dr. K, the wonderful family doctor I saw for the pregnancy and birth of Rielly-Anne. Due to my two prior cesareans, I was considered special needs, and was given top priority above all other patients. Leslie and Dr. K spared nothing to ensure a healthy baby and mom. Though we were unable to fulfill our dream of delivering little Cecilia at home, we consider her birth to be a wonderful experience with minimal undue stress placed upon Keith.
At 4 p.m. on November 6, at nearly forty-three weeks along, my water broke. I called Leslie, our midwife, immediately. She told me to do whatever prep work I needed to do for labor, take it easy and get plenty of rest. So I cleaned the house, pulled from the freezer my pre-made wholesome chicken soup and casserole, and made sure the birthing kit was in order and within easy reach. I had been having very strong contractions since my twentieth week, so we all fully expected labor to move along. At that point, contractions were mild and sporadic.
Keith arrived home with a few extra supplies we still needed. We placed a call to my sister telling her to get ready to come over at a moments notice, then made another call to Leslie. She would be there whenever we were ready; she was fairly sure that true labor would begin in the middle of the night. She was right - around 2 a.m. contractions were so strong that I could no longer stay in bed. I got up and just paced back and forth in the bedroom, finally waking Keith around 5. We went downstairs and made it through another hour before calling Leslie. She arrived at the house around 8 a.m. and was able to confirm that my contractions were becoming stronger and more regular, and also that there was meconium in the amniotic fluid. I called my sister, who arrived within the hour. She set about making the soup, taking care of the kids, keeping the house clean, while Keith and I went for a long walk to try and speed up the contractions. The walk did nothing - by 4 p.m., twenty four hours after my water broke, my labor had completely stopped. Leslie did all the things midwives do to jump start labor, from giving me organic, labor inducing herbs to belly massage. Nothing helped. Finally, during a conference call with Dr K, we all unanimously agreed that it would be in our best interest to deliver Cecilia via c-section at the hospital. Before agreeing to that, however, I made sure several criteria of ours would be met. 1. Keith would accompany me in the operating room as I was prepped for surgery, 2. Leslie would be allowed into the operating room with Keith during the c-section, 3. Cecilia would not be parted from either Keith or myself at any time, including immediately after birth, 4. I would be allowed to have her with me as soon as possible, even while in the recovery room, and 5. I would use only cloth diapers on her during our hospital stay. Dr. K agreed to all our wishes, so off to the hospital we went. My sister stayed at the house with the kids.
I would like to say that everything went smoothly after arriving at the hospital, but that was not the case at all. We had already pre-registered as a precaution, so that wasn't a problem, but trouble began with the spinal. The anesthesiologist was unable to place the needle. She stuck my back five times before getting it into place on the sixth try. It took longer to administer the spinal than to perform the surgery. During the c-section something went wrong in getting Cecilia out. We still aren't quite sure what the problem was, maybe she was simply stuck, but they had to pump my chest repeatedly, so hard my head was bouncing on the table, just to get her out. She finally made her way into the world at 8:12 p.m., weighing a little over 8 lbs. Fortunately, there was no meconium in her lungs, and they placed her into Keith's arms. He carried her down the hall and into the nursery, and along with Leslie, stayed by her side while they warmed her, measured and weighed her. After about fifteen minutes they brought her to me in the recovery room, where I was able to nurse her for the first time.
Several days later we returned home to begin a new life with our latest addition, Cecilia Mae. We struggled with bladder infections, leg quivers, back pain, several rounds of strong antibiotics, and severe food allergies for the first six months. Rielly-Anne tandem nursed during this time, which I believe helped her transition from being the youngest child to becoming a big sister. All in all, while this first year had a bit of a rough start, we have all adapted well and continue to learn every day. Keith has done exceptionally well, stepping up to help with the child rearing duties during times I know he is utterly exhausted. While the disease is more progressed than when we had Rielly-Anne, Keith is actually able to do more now. His determination to be a great father amazes me! Our children are so blessed to have him!
Happy birthday Cecilia Mae! May you be blessed with many, many more! Mommy and Daddy love you so much!
Thursday, November 4, 2010
Cast Away
No matter how many times I have seen the movie Cast Away, I always find myself watching the last scene over and over, trying to determine which road Tom Hanks' character takes. He is standing at a crossroads, looking around, unsure of where to go, not knowing the best road to take. This indecision comes after finally being rescued from a deserted island he was stranded on for years. Like the Cast Away character, Chuck Noland, Keith and I have found ourselves standing at a crossroads, unsure which path to take.
In the four years since Keith's diagnosis, we have each found ourselves feeling as if we were alone, stranded on a deserted island. We say we are in this together, but in reality we can never fully understand what the other is feeling. I will never know how he feels as his body deteriorates, slowly becoming more stiff, slow and shaky. I will never know the heartache and frustration of a slipping memory or of time lost with my children. On the other hand, Keith will never know what I go through as I watch this disease slowly ravage his body, stealing all those little pieces that make up Keith. No matter how often we network with others, regardless of all the young-onset PWP we have become friends with, and despite all the PD support groups we have attended, it is still so easy to feel alone, stranded on a remote island named Parkinson.
This past year has been our awakening. We determined individually and together that we had enough resources to put together a raft, climb aboard, and sail off this lonely island. We knew the waters would be rough. We knew it would be dangerous; the chance of drowning in a vast sea of financial insecurity, medicinal side effects, physical disability, memory loss, and frustration was high. It was risky, no doubt, but we were determined to get off that island, and sink or swim, or even doggy paddle, we were going to get back home.
As it happened, the trip off the island was the easy part. I wouldn't exactly call it smooth sailing, but we arrived at our destination in one piece, all parts in working order, a little weary but content. Now, like Chuck Noland in Cast Away, we find ourselves standing at a crossroads unsure of which road to take. We have decisions to make about how to proceed with PD that will affect each member of our family. In the past Keith and I often let our emotions, namely fear, dictate what the outcome of our decisions were. Not any more. That's why we've decided on a counselor from here on out. Not a marriage counselor, but someone who specializes in neurological disorders and the issues they entail. Most of our interaction with the counselor will be as a couple, though I am sure there will be times when Keith and I will need to speak privately to him/her. I have been burned out, Keith is frustrated, there is potential for resentments to build on both sides, all of which we want to avoid. As we stand in the crossroads of PD, we have recognized that we need help in our decision making. We are no longer stranded on a deserted island, nor do we wish to return to it, so it only makes sense that we would surround ourselves with people we know to be supportive, understanding and helpful, counselors included. Our hope is that a counselor will help us cast away all those fears and doubts surrounding PD, and help us determine which is the best direction our family needs to turn to.
In the four years since Keith's diagnosis, we have each found ourselves feeling as if we were alone, stranded on a deserted island. We say we are in this together, but in reality we can never fully understand what the other is feeling. I will never know how he feels as his body deteriorates, slowly becoming more stiff, slow and shaky. I will never know the heartache and frustration of a slipping memory or of time lost with my children. On the other hand, Keith will never know what I go through as I watch this disease slowly ravage his body, stealing all those little pieces that make up Keith. No matter how often we network with others, regardless of all the young-onset PWP we have become friends with, and despite all the PD support groups we have attended, it is still so easy to feel alone, stranded on a remote island named Parkinson.
This past year has been our awakening. We determined individually and together that we had enough resources to put together a raft, climb aboard, and sail off this lonely island. We knew the waters would be rough. We knew it would be dangerous; the chance of drowning in a vast sea of financial insecurity, medicinal side effects, physical disability, memory loss, and frustration was high. It was risky, no doubt, but we were determined to get off that island, and sink or swim, or even doggy paddle, we were going to get back home.
As it happened, the trip off the island was the easy part. I wouldn't exactly call it smooth sailing, but we arrived at our destination in one piece, all parts in working order, a little weary but content. Now, like Chuck Noland in Cast Away, we find ourselves standing at a crossroads unsure of which road to take. We have decisions to make about how to proceed with PD that will affect each member of our family. In the past Keith and I often let our emotions, namely fear, dictate what the outcome of our decisions were. Not any more. That's why we've decided on a counselor from here on out. Not a marriage counselor, but someone who specializes in neurological disorders and the issues they entail. Most of our interaction with the counselor will be as a couple, though I am sure there will be times when Keith and I will need to speak privately to him/her. I have been burned out, Keith is frustrated, there is potential for resentments to build on both sides, all of which we want to avoid. As we stand in the crossroads of PD, we have recognized that we need help in our decision making. We are no longer stranded on a deserted island, nor do we wish to return to it, so it only makes sense that we would surround ourselves with people we know to be supportive, understanding and helpful, counselors included. Our hope is that a counselor will help us cast away all those fears and doubts surrounding PD, and help us determine which is the best direction our family needs to turn to.
Let's Get it Done, Folks!
Reminder: all proceeds from LIFE WITH SHAKY during the months of October thru December are donated to the APDA!
Sales from LIFE WITH SHAKY have been good this fall, so let's keep it going! We want a nice, fat check to send to the APDA this coming January.
Bumper stickers and canvas totes make nice holiday gifts, as do our selection of coffee mugs!
Shop LIFE WITH SHAKY today!
Sales from LIFE WITH SHAKY have been good this fall, so let's keep it going! We want a nice, fat check to send to the APDA this coming January.
Bumper stickers and canvas totes make nice holiday gifts, as do our selection of coffee mugs!
Shop LIFE WITH SHAKY today!
Wednesday, October 20, 2010
Truth or Dare?
We've all played the game of Truth or Dare. Perhaps as a child your buddy dared you to don a pillowcase and jump from the shed roof as Superman. Maybe in college you spilled the truth about a prior lover or a secret crush. The fact is, we all play Truth or Dare on a regular basis, though usually, unlike the childhood version, no one is the wiser. Do I dare allow myself to fall in love with this person? Do I dare quit this horrible, dead-end job? Often times, the most difficult aspects of Truth or Dare are the truths we must speak to ourselves.
I have dared myself to tell the truth, to finally be honest about this blog, my marriage, my family, PD. For the past year I have been trying to determine the direction I want this blog to take. I have only posted often enough to keep the few readers I have interested until I made a decision: keep the blog up and begin writing again or shut the entire thing down and walk away. I've decided to keep going, which brings me to truth numero uno:
Truth 1. I have suffered from severe PD burn out, causing me to walk away from nearly all PD related activities, including this blog. Some time ago, after nearly two years of battling Keith over whether or not to sell our house and his lack of concern for his health, I made the decision that I would no longer take it upon myself to initiate any PD related activities. That included support groups, fundraising, blogging, taking that extra step in meal preparation to ensure the best nutrition, advocating for Keith's health. I stepped away from all of it. No, that's entirely true either - in reality I ran away, as fast as I could go. I was exhausted physically and emotionally. I was drained of all my desire to do all I could for my husband. My attitude became if he doesn't care, then neither do I. Unfortunately, somewhere between letting go of being the nurturing, supportive, advocating wife I liked to be and trying to become the nurturing, supportive, advocating wife Keith wanted me to be, I lost myself. I lost the one thing I thought most valuable to a wife of a PWP - compassion. Compassion, the very thing that I naively assumed would be just as valuable to Keith, became a driving wedge between us. But to take away that which sustains me is to take away a huge part of who I am. If I can't dote on, fret over and nurture the one I love, but instead am expected to sit back and watch a slow and steady decline, what else can I do? Apparently, I can internalize, and I can do it very well. Burn out was not simply a possibility, but a certainty.
Truth 2. I have been afraid of what the nay-sayers will say. When you spend years thumbing your nose at all those individuals who tell you over and over again that you are making a mistake, it's hard to admit that you're now struggling. I do not, in any way, shape, or form, feel that I made a mistake in marrying Keith and having children with him. I'm just not up for all the I told you so's. Yeah, it's hard loving a man with PD. It's even more difficult when you have young children together. PD is a horrid disease, not one I'd wish on my worst enemy, but trying to make me feel as if I've done something wrong is not at all helpful. I have no intention of leaving Keith, so really, what is the point?
Truth 3. Nay-sayers: beware! From this point forward, I will only surround myself with positive influences. Looking into the future, I am all too aware of how difficult life is going to get if this disease progresses much further. I simply do not have the time or the energy to deal with your rude comments and hateful attitudes. I won't name names, but you know who you are. You are those folks who deem it necessary to repeatedly say to Keith and I, regarding most every decision we make, Why would you do a stupid thing like that? or What the hell is wrong with you? While I respect every one's right to their own opinion, I am the one raising a family alongside a PWP, not you. There is no room for your criticism, doom and gloom.
Truth 4. This is much harder than I thought it was going to be. I said from the get-go that I could handle the physical deterioration, but the mental part would do me in. It has definitely stomped all over me. I wasn't prepared for this. Dr. Wooten warned me about apathy, possible depression, personality changes, but not this. Keith has been having some memory issues, as well as problems with communication. Throw in the fact that we are still trying to recover from the damage Mirapex caused, and it's been rough going for the past year. Not at all what I expected.
Truth 5. I need to show my husband more often how much I love him. In spite of it all, Keith is still and will always be the love of my life. I am not going anywhere, and I'm pretty sure he isn't either. With all the trouble PD and our differences have caused, we still have a happy marriage. We love our kids, we are happy with our choices, and we are looking forward to what the next ten years will bring. Having said that, I do realize that I have a tendency to let life get in the way of showing my love. Saying it isn't always enough.
The truth is, I had to dare myself to be honest with me in order to begin the journey back to me. I'm coming around, but I think next time I'll stick with a nice game of checkers and leave Truth or Dare to the college kids.
I have dared myself to tell the truth, to finally be honest about this blog, my marriage, my family, PD. For the past year I have been trying to determine the direction I want this blog to take. I have only posted often enough to keep the few readers I have interested until I made a decision: keep the blog up and begin writing again or shut the entire thing down and walk away. I've decided to keep going, which brings me to truth numero uno:
Truth 1. I have suffered from severe PD burn out, causing me to walk away from nearly all PD related activities, including this blog. Some time ago, after nearly two years of battling Keith over whether or not to sell our house and his lack of concern for his health, I made the decision that I would no longer take it upon myself to initiate any PD related activities. That included support groups, fundraising, blogging, taking that extra step in meal preparation to ensure the best nutrition, advocating for Keith's health. I stepped away from all of it. No, that's entirely true either - in reality I ran away, as fast as I could go. I was exhausted physically and emotionally. I was drained of all my desire to do all I could for my husband. My attitude became if he doesn't care, then neither do I. Unfortunately, somewhere between letting go of being the nurturing, supportive, advocating wife I liked to be and trying to become the nurturing, supportive, advocating wife Keith wanted me to be, I lost myself. I lost the one thing I thought most valuable to a wife of a PWP - compassion. Compassion, the very thing that I naively assumed would be just as valuable to Keith, became a driving wedge between us. But to take away that which sustains me is to take away a huge part of who I am. If I can't dote on, fret over and nurture the one I love, but instead am expected to sit back and watch a slow and steady decline, what else can I do? Apparently, I can internalize, and I can do it very well. Burn out was not simply a possibility, but a certainty.
Truth 2. I have been afraid of what the nay-sayers will say. When you spend years thumbing your nose at all those individuals who tell you over and over again that you are making a mistake, it's hard to admit that you're now struggling. I do not, in any way, shape, or form, feel that I made a mistake in marrying Keith and having children with him. I'm just not up for all the I told you so's. Yeah, it's hard loving a man with PD. It's even more difficult when you have young children together. PD is a horrid disease, not one I'd wish on my worst enemy, but trying to make me feel as if I've done something wrong is not at all helpful. I have no intention of leaving Keith, so really, what is the point?
Truth 3. Nay-sayers: beware! From this point forward, I will only surround myself with positive influences. Looking into the future, I am all too aware of how difficult life is going to get if this disease progresses much further. I simply do not have the time or the energy to deal with your rude comments and hateful attitudes. I won't name names, but you know who you are. You are those folks who deem it necessary to repeatedly say to Keith and I, regarding most every decision we make, Why would you do a stupid thing like that? or What the hell is wrong with you? While I respect every one's right to their own opinion, I am the one raising a family alongside a PWP, not you. There is no room for your criticism, doom and gloom.
Truth 4. This is much harder than I thought it was going to be. I said from the get-go that I could handle the physical deterioration, but the mental part would do me in. It has definitely stomped all over me. I wasn't prepared for this. Dr. Wooten warned me about apathy, possible depression, personality changes, but not this. Keith has been having some memory issues, as well as problems with communication. Throw in the fact that we are still trying to recover from the damage Mirapex caused, and it's been rough going for the past year. Not at all what I expected.
Truth 5. I need to show my husband more often how much I love him. In spite of it all, Keith is still and will always be the love of my life. I am not going anywhere, and I'm pretty sure he isn't either. With all the trouble PD and our differences have caused, we still have a happy marriage. We love our kids, we are happy with our choices, and we are looking forward to what the next ten years will bring. Having said that, I do realize that I have a tendency to let life get in the way of showing my love. Saying it isn't always enough.
The truth is, I had to dare myself to be honest with me in order to begin the journey back to me. I'm coming around, but I think next time I'll stick with a nice game of checkers and leave Truth or Dare to the college kids.
Tuesday, May 11, 2010
Is It Not Clear Enough?
All proceeds for the months of April and October thru December will be donated to the APDA. So why is that those are the months when I barely sell enough to pay for shop?
Maybe I should change the wording . . . .
Maybe I should change the wording . . . .
Our Latest BIG News
We decided to keep it a secret first. Then we each told only a few people, those we decided were the "must-knows." Then we sort of made an announcement about it, but not officially. So today I will make a formal announcement.
We are attempting to adopt through the foster care system.
The main reason we didn't want to tell anyone was because we didn't know if we would even be considered, what with PD and all. After a very thorough home visit with a very nice social worker, we learned that we are, in fact, in the running to be adoptive parents. Because we are adopting through foster care and will end up with an older child, PD and Keith's age are not issues as long as I am in the picture. The youngest parent needs to be healthy, which I am, and needs to be no older than 45 years older than the prospective adoptive child, which I'm not. So there you have it! We begin classes soon, along with all the credit checks, home visits, background checks, paperwork. It's a long process, but also very exciting.
Please keep us in your prayers and pray that we have a good outcome to our newest journey.
We are attempting to adopt through the foster care system.
The main reason we didn't want to tell anyone was because we didn't know if we would even be considered, what with PD and all. After a very thorough home visit with a very nice social worker, we learned that we are, in fact, in the running to be adoptive parents. Because we are adopting through foster care and will end up with an older child, PD and Keith's age are not issues as long as I am in the picture. The youngest parent needs to be healthy, which I am, and needs to be no older than 45 years older than the prospective adoptive child, which I'm not. So there you have it! We begin classes soon, along with all the credit checks, home visits, background checks, paperwork. It's a long process, but also very exciting.
Please keep us in your prayers and pray that we have a good outcome to our newest journey.
Backing Off
It’s been a long time coming!
Finally, after years of being over protective, attempting to be proactive, at times becoming combative, I have learned the art of backing off, or as some males would put it, getting off his back. Backing off, or getting off one’s back, is a term used to describe a woman who is leaving her man alone. She is not nagging him or pestering him about any one thing. Many women had a hard time mastering this skill, especially women like myself, whose husbands have Parkinson’s Disease. But, ladies and gentlemen, I am please to announce that I have officially backed off!
It was long over due. For years I held the opinion that Keith had no clue as to what was best for his health. I believed that just didn’t care about whether or not the PD progressed. I cared. I believed. I care and believed a little too hard, according to some. I tried to fix PD, as if that’s even possible. I tried to fix Keith’s attitude about it - even less possible. I resented, festered, burned, yelled, begged, and cried. I did all the normal things a nagging wife would do when met with opposition. And although we have always maintained a good, healthy and happy marriage, I would be lying if I said that it did not affect our relationship. For about a year we just weren’t as happy as we used to be. I decided to take action. I backed off.
It can be hard to get off someone’s back when sometimes you don’t intend to be there at all. Often times you end up there quite by accident. You realize suddenly, usually by the way the PWP is looking at you, that somehow you have crossed the line, said something you shouldn’t have said. You are now accidentally on his back. You have nagged him, or maybe even simply reminded him of something that should have gone unsaid. Like the time Keith and I were discussing adding on to the house. I casually mentioned that a much large, wheelchair accessible bathroom would be a good idea. The look on his face clearly said Gee, thanks for reminding that I have a degenerative disease, as if I could ever forget, and for taking all the fun out of building an addition to the house! Oops! Then there was the year-long fight about moving out of the house or not moving out. I never intended to upset him each and every time I brought it up. I never intended to make him feel like an invalid or that he had nothing to look forward to. I never intended to make him feel like he had no say in his own health or in our future together. Somehow, just by being me and wanting to help and fix everything, that’s what happened. I rode his back for a solid year thinking I new better. But not anymore.
Being married to a PWP is a long and very educational journey. I never stop learning. Because the disease is ever changing and always evolving, so is our need to change and evolve with it. Sometimes that means changing what we have always believed to be, methods we have utilized in the past, perceptions of what should be. If Keith is my teacher and PD my classroom, then I have many more years of study ahead of me. As always, I am learning as I go. Though I struggled with this particular class more than any other, I am happy to know that I have finally passed with flying colors.
Finally, after years of being over protective, attempting to be proactive, at times becoming combative, I have learned the art of backing off, or as some males would put it, getting off his back. Backing off, or getting off one’s back, is a term used to describe a woman who is leaving her man alone. She is not nagging him or pestering him about any one thing. Many women had a hard time mastering this skill, especially women like myself, whose husbands have Parkinson’s Disease. But, ladies and gentlemen, I am please to announce that I have officially backed off!
It was long over due. For years I held the opinion that Keith had no clue as to what was best for his health. I believed that just didn’t care about whether or not the PD progressed. I cared. I believed. I care and believed a little too hard, according to some. I tried to fix PD, as if that’s even possible. I tried to fix Keith’s attitude about it - even less possible. I resented, festered, burned, yelled, begged, and cried. I did all the normal things a nagging wife would do when met with opposition. And although we have always maintained a good, healthy and happy marriage, I would be lying if I said that it did not affect our relationship. For about a year we just weren’t as happy as we used to be. I decided to take action. I backed off.
It can be hard to get off someone’s back when sometimes you don’t intend to be there at all. Often times you end up there quite by accident. You realize suddenly, usually by the way the PWP is looking at you, that somehow you have crossed the line, said something you shouldn’t have said. You are now accidentally on his back. You have nagged him, or maybe even simply reminded him of something that should have gone unsaid. Like the time Keith and I were discussing adding on to the house. I casually mentioned that a much large, wheelchair accessible bathroom would be a good idea. The look on his face clearly said Gee, thanks for reminding that I have a degenerative disease, as if I could ever forget, and for taking all the fun out of building an addition to the house! Oops! Then there was the year-long fight about moving out of the house or not moving out. I never intended to upset him each and every time I brought it up. I never intended to make him feel like an invalid or that he had nothing to look forward to. I never intended to make him feel like he had no say in his own health or in our future together. Somehow, just by being me and wanting to help and fix everything, that’s what happened. I rode his back for a solid year thinking I new better. But not anymore.
Being married to a PWP is a long and very educational journey. I never stop learning. Because the disease is ever changing and always evolving, so is our need to change and evolve with it. Sometimes that means changing what we have always believed to be, methods we have utilized in the past, perceptions of what should be. If Keith is my teacher and PD my classroom, then I have many more years of study ahead of me. As always, I am learning as I go. Though I struggled with this particular class more than any other, I am happy to know that I have finally passed with flying colors.
Wednesday, March 3, 2010
New Hope For A Cure
This news is a few months old, but still worth posting -
Researchers at Iowa State University have found an essential key to possibly cure Parkinson's disease and are looking for others.
Anumantha Kanthasamy, a distinguished professor of biomedical sciences and W. Eugene and Linda R. Lloyd Endowed Chair in Neurotoxicology at the ISU College of Veterinary Medicine, has been working to understand the complex mechanisms of the disease for more than a decade and thinks he has found hope for the cure.
Parkinson's disease sufferers lack a sufficient amount of a brain chemical called dopamine.
Kanthasamy's research shows that there is specific protein that is naturally present in human brains that -- for no known reason -- kills the brain cells that make dopamine.
The cells that are being killed are the ones that produce the needed dopamine.
"We have millions of cells in our brains," said Kanthasamy, "In Parkinson's, about 10,000 of these brain cells die; no one knows why."
Kanthasamy discovered that a novel protein -- known as protein kinase-C (specifically PKCδ) - is killing the dopamine-producing cells.
Kanthasamy and his research staff discovered a compound that neutralizes the cell-killing kinase-C and allows the dopamine-producing cells to survive and function.
"With a lot of hard work, and little bit of luck, we found something important," he said. "And when you find something like this you say, 'This is great because it can be a target for developing new drugs.'"
Now, Kanthasamy's group is looking for additional compounds that also can serve to neutralize protein kinase-C. By identifying more compounds that perform the function of neutralizing kinase-C, researchers are more likely to locate one that works well and has few side effects.
This discovery is expected to provide new treatment options to stop the progression of the disease or even cure it.
The study is being funded by a Grow Iowa Values Fund grant. The goal of the grant program is to support development of technologies with commercial potential and to support the growth of companies using those technologies. Kanthasamy is working on this research with PK Biosciences Corp., an Iowa-based startup company. Funding was also provided by the National Institutes of Health.
"Once we find the compound, we need to make sure it's safe. If everything goes well, it could take about 10 years, and then we might be able to see something that will truly make a difference in the lives of people with this disorder," said Kanthasamy.
Source: Anumantha Kanthasamy
Iowa State University
Researchers at Iowa State University have found an essential key to possibly cure Parkinson's disease and are looking for others.
Anumantha Kanthasamy, a distinguished professor of biomedical sciences and W. Eugene and Linda R. Lloyd Endowed Chair in Neurotoxicology at the ISU College of Veterinary Medicine, has been working to understand the complex mechanisms of the disease for more than a decade and thinks he has found hope for the cure.
Parkinson's disease sufferers lack a sufficient amount of a brain chemical called dopamine.
Kanthasamy's research shows that there is specific protein that is naturally present in human brains that -- for no known reason -- kills the brain cells that make dopamine.
The cells that are being killed are the ones that produce the needed dopamine.
"We have millions of cells in our brains," said Kanthasamy, "In Parkinson's, about 10,000 of these brain cells die; no one knows why."
Kanthasamy discovered that a novel protein -- known as protein kinase-C (specifically PKCδ) - is killing the dopamine-producing cells.
Kanthasamy and his research staff discovered a compound that neutralizes the cell-killing kinase-C and allows the dopamine-producing cells to survive and function.
"With a lot of hard work, and little bit of luck, we found something important," he said. "And when you find something like this you say, 'This is great because it can be a target for developing new drugs.'"
Now, Kanthasamy's group is looking for additional compounds that also can serve to neutralize protein kinase-C. By identifying more compounds that perform the function of neutralizing kinase-C, researchers are more likely to locate one that works well and has few side effects.
This discovery is expected to provide new treatment options to stop the progression of the disease or even cure it.
The study is being funded by a Grow Iowa Values Fund grant. The goal of the grant program is to support development of technologies with commercial potential and to support the growth of companies using those technologies. Kanthasamy is working on this research with PK Biosciences Corp., an Iowa-based startup company. Funding was also provided by the National Institutes of Health.
"Once we find the compound, we need to make sure it's safe. If everything goes well, it could take about 10 years, and then we might be able to see something that will truly make a difference in the lives of people with this disorder," said Kanthasamy.
Source: Anumantha Kanthasamy
Iowa State University
Thursday, February 25, 2010
Our Shop Has a New Look!
We've updated the Life With Shaky Store!
Check us out by clicking the link at the top of the page or in the sidebar!
Check us out by clicking the link at the top of the page or in the sidebar!
Monday, February 15, 2010
Before and After
Keith is not going to be too happy about this, but I wanted to do it anyway. I wanted to show the difference in his face just a few months after getting his PD diagnosis, and now, three years into it.
Today we were discussing what happened at his doctor's appointment, and he told be that he and Dr. Wooten had talked about depression. I have often asked Keith over the years if he felt depressed, mainly because he looks depressed. Dr. Wooten believes, and rightly so, that I worry about Keith being depressed because of facial masking. Facial masking - one of those wonderful PD symptoms. His face basically freezes, or in unable to register much emotion. It is so difficult to read Keith emotions and expressions anymore. I sometimes cannot tell if he is happy, sad, depressed, or angry. They all look pretty much the same to me now.
I told Keith today that when I look at picrtues of him with Rielly-Anne three years ago, I can see the happiness in his eyes. Now, looking at him with Cecilia, though I know he is happy, it is as if someone has turned out the light, so to speak. If you can imagine there was once a light behind his eyes, and now it is gone.
The first picture was taken while Keith was holding Rielly-Anne. She was about five months old at the time. He was so happy with her, and you can see it in his eyes. The bottom picture was taken about a month ago, while Keith was holding Cecilia. I know he was just as happy holding her as he was holding Rielly-Anne, but you really can't see it. The smile is the same, but the eyes are very different. His expression, to me, anyway, looks more like a dead stare with a fake smile. I just don't see the emotion here that I can clearly see in the top picture.
I hope that by seeing these pictures next to each other, Keith will understand why I always ask him if he's happy. Things are so different now than what I am used to, and not being able to read my husband's face is just one of many adjustments I need to keep making.
Just an Update . . .
Keith had his bi-annual appointment with Dr. Wooten today. I wasn’t able to go this time because it was so early in the morning, and getting two babies ready that early is not my idea of a good time! Still, I hate to miss appointments with Dr. Wooten.
This appointment was important. Keith has gone off Mirapex and re-adjusted his other medications. Lately he has been having a very difficult time sleeping, and we’ve noticed a few other physical and cognitive changes as well. There was a lot to discuss, and Doc particularly likes to hear the spouses/caregivers point of view. Sometimes we are able to see things the PWP is unable to see, or give a point of view to yet told. All in all, it turned out well – Dr. Wooten adjusted the medication Keith is on, and put him on Neurontin, a drug approved for nerve pain, and commonly used as an anti-seizure medication. I am a little nervous about the side effects (suicidal thoughts!), but I promised months ago to back off a little, so I will. Well, I’ll try to, anyway.
Dr. Wooten also told Keith that he is a good candidate for DBS, deep brain stimulation. I had always thought it was most helpful to those that have severe tremors, which is mild in Keith, but Wooten said that it works wonders on the symptoms Keith does have, namely rigidity and stiffness, and muscle cramps. Keith has never been a fan of DBS, but after talking to Dr. Wooten about it today, he seems pretty eager to learn more. He is open to the idea, which is taking a big step in the right direction. I have to admit; I am a little excited about the thought of Keith not having all those horrible physical symptoms. Imagine Keith not being in pain, or struggling to put his shoes on, or not having a stooped posture at all times! Even if Keith decides against the surgery, it really is nice to know that we have another option. If things get unbearable for him, he can always play that card. I know, of course, that it is not a cure, but it will help, and when it comes to PD, any and all help is beneficial.
So once again, we have found hope in what seems to be a hopeless disease. Thank you, God!
This appointment was important. Keith has gone off Mirapex and re-adjusted his other medications. Lately he has been having a very difficult time sleeping, and we’ve noticed a few other physical and cognitive changes as well. There was a lot to discuss, and Doc particularly likes to hear the spouses/caregivers point of view. Sometimes we are able to see things the PWP is unable to see, or give a point of view to yet told. All in all, it turned out well – Dr. Wooten adjusted the medication Keith is on, and put him on Neurontin, a drug approved for nerve pain, and commonly used as an anti-seizure medication. I am a little nervous about the side effects (suicidal thoughts!), but I promised months ago to back off a little, so I will. Well, I’ll try to, anyway.
Dr. Wooten also told Keith that he is a good candidate for DBS, deep brain stimulation. I had always thought it was most helpful to those that have severe tremors, which is mild in Keith, but Wooten said that it works wonders on the symptoms Keith does have, namely rigidity and stiffness, and muscle cramps. Keith has never been a fan of DBS, but after talking to Dr. Wooten about it today, he seems pretty eager to learn more. He is open to the idea, which is taking a big step in the right direction. I have to admit; I am a little excited about the thought of Keith not having all those horrible physical symptoms. Imagine Keith not being in pain, or struggling to put his shoes on, or not having a stooped posture at all times! Even if Keith decides against the surgery, it really is nice to know that we have another option. If things get unbearable for him, he can always play that card. I know, of course, that it is not a cure, but it will help, and when it comes to PD, any and all help is beneficial.
So once again, we have found hope in what seems to be a hopeless disease. Thank you, God!
Saturday, January 30, 2010
I'm Learning as I Go
It should come as no surprise that I am a bit of a hypochondriac when it comes to Keith and PD. Any change I see, whether real or falsely perceived, becomes reason to almost attack Keith with my mountain of medical jargon, books, and exercise dvds. I am hit with a barrage of emotion – everything from sadness that the disease is progressing to deep motivation to keep going and do what I can for him. I say a little prayer thanking God for one more sweet day, and I ask that he slow the disease down as much as possible, that we might have many, many more sweet days together. Lately, more often than not, I have been adding a prayer; a prayer for myself; that I may have the strength to endure what I know is to come.
Hebrews 11:1 tells us that Faith is being sure of what we hope for, and certain of what we do not see. And in Proverbs 3:5-6 -
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
My Faith in the Lord has never wavered. I trust the He knows what He is doing. I trust that I can lay my troubles at His feet and He will bear them for me. Trust in myself, however, is another matter all together.
Try as I might, I can not understand why Keith has Parkinson’s Disease, nor can I understand why I was chosen to be his lifelong mate in his journey. I cannot understand my own reactions to it, both positive and negative. I get angry sometimes, sad as well. Oftentimes I am confused as to how I should respond to any given situation. Parkinson’s Disease is an uphill battle, a continuous roller coaster ride that runs the gamut of every possible emotion. Sitting in the front car of this roller coaster, in the deepest, most secretive places of my heart, I sometimes give in to the doubt that resides there – will I have the strength to finish the ride, or will I cry out to the man in charge, begging him to stop the ride so I can leap off? Will I have the strength to patiently and kindly endure the steep hills and topsy-turvy twists of this ride, or will I sit white knuckled, hanging on for dear life, screaming for the ride to end?
I don’t often admit these thoughts, even to myself. It’s a scary place to be. But every time there is a new symptom, a slight progression, a questionable situation, I am back on the roller coaster. A once-removed hypochondriac, that’s me. I freak out in a series of what-ifs, shoulda-coulda-wouldas and the ever present if-only-you-would-do-this mantra, all of which lead to that dark place deep inside that I only very secretively visit.
I am learning the hard way to have more Faith. I am very slowly coming to a place where I can lay not only my troubles, but also my self-doubt, at my Masters feet. I am learning to leave all of it, including Parkinson’s, in His hands.
Nahum 1:7 The Lord is good, a refuge on the day of distress; He takes care of those who have recourse to Him. . .
Hebrews 11:1 tells us that Faith is being sure of what we hope for, and certain of what we do not see. And in Proverbs 3:5-6 -
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
My Faith in the Lord has never wavered. I trust the He knows what He is doing. I trust that I can lay my troubles at His feet and He will bear them for me. Trust in myself, however, is another matter all together.
Try as I might, I can not understand why Keith has Parkinson’s Disease, nor can I understand why I was chosen to be his lifelong mate in his journey. I cannot understand my own reactions to it, both positive and negative. I get angry sometimes, sad as well. Oftentimes I am confused as to how I should respond to any given situation. Parkinson’s Disease is an uphill battle, a continuous roller coaster ride that runs the gamut of every possible emotion. Sitting in the front car of this roller coaster, in the deepest, most secretive places of my heart, I sometimes give in to the doubt that resides there – will I have the strength to finish the ride, or will I cry out to the man in charge, begging him to stop the ride so I can leap off? Will I have the strength to patiently and kindly endure the steep hills and topsy-turvy twists of this ride, or will I sit white knuckled, hanging on for dear life, screaming for the ride to end?
I don’t often admit these thoughts, even to myself. It’s a scary place to be. But every time there is a new symptom, a slight progression, a questionable situation, I am back on the roller coaster. A once-removed hypochondriac, that’s me. I freak out in a series of what-ifs, shoulda-coulda-wouldas and the ever present if-only-you-would-do-this mantra, all of which lead to that dark place deep inside that I only very secretively visit.
I am learning the hard way to have more Faith. I am very slowly coming to a place where I can lay not only my troubles, but also my self-doubt, at my Masters feet. I am learning to leave all of it, including Parkinson’s, in His hands.
Nahum 1:7 The Lord is good, a refuge on the day of distress; He takes care of those who have recourse to Him. . .
Snow!
It’s another huge snowstorm. I worry how Keith will handle shoveling snow. I worry how the cold will affect his PD symptoms. I worry about being snowed in with a man as restless as Keith usually is.
They say absence makes the heart grow fonder. In my case, absence makes the heart grow less overprotective. I know it sounds strange, but the more I am around Keith, the more I see of his symptoms, the more I see of the disease’s progression, the more I worry about him, and about us.
I just need to chill out and enjoy the snow.
They say absence makes the heart grow fonder. In my case, absence makes the heart grow less overprotective. I know it sounds strange, but the more I am around Keith, the more I see of his symptoms, the more I see of the disease’s progression, the more I worry about him, and about us.
I just need to chill out and enjoy the snow.
Monday, January 11, 2010
And The Book Says . . .
Luckily, I already knew about most of the "natural cures" for PD. Here are a few I have recently been enlightened about:
From Alternative Cures by Bill Gottlieb:
Nutritional Supplements Can Help Slow Parkinson's Disease
THIAMIN: Boost Your Dopamine
High levels of the B vitamin thiamin may help the brain produce dopamine, says Dr. Brauer. He recommends 3,000 to 8,000 milligrams daily.
ANTIOXIDANTS: E, C, and Gluthathione to the Rescue
One theory about the cause of Parkinson's disease says that free radicals (molecular monsters produced by a wide variety of biochemical and lifestyle factors) are oxidizing or destroying the receptor cells in the substantia nigra, a relay station in the brain between the body's muscles and the cerebellum, the area in the brain that controls movement.
Antioxidants can block that free radical damage and perhaps slow the progress of Parkinson's. But, says Dr. Miller, to be effective, several antioxidants must work together.
* Vitamin C: 1,000 to 4,000 milligrams daily in three divided doses with meals.
* Vitamin E: 600 1,200 international units daily in three divided doses with meals.
* Glutathione: The product Thiodox, from Allergy Research, which Dr. Miller recommends, provides a daily intake of 200 milligrams of flutathione and the nutritional co-factors necessary to make it work.
TYROSINE: Another Dopamine Booster
The amino acid tyrosine is an essential precursor of dopamine formation. Dr. Miller recommends taking 500 to 1,000 milligrams of the supplement once in the morning on an empty stomach.
Great. Just a few more things to obsessively research and pester Keith about.
From Alternative Cures by Bill Gottlieb:
Nutritional Supplements Can Help Slow Parkinson's Disease
THIAMIN: Boost Your Dopamine
High levels of the B vitamin thiamin may help the brain produce dopamine, says Dr. Brauer. He recommends 3,000 to 8,000 milligrams daily.
ANTIOXIDANTS: E, C, and Gluthathione to the Rescue
One theory about the cause of Parkinson's disease says that free radicals (molecular monsters produced by a wide variety of biochemical and lifestyle factors) are oxidizing or destroying the receptor cells in the substantia nigra, a relay station in the brain between the body's muscles and the cerebellum, the area in the brain that controls movement.
Antioxidants can block that free radical damage and perhaps slow the progress of Parkinson's. But, says Dr. Miller, to be effective, several antioxidants must work together.
* Vitamin C: 1,000 to 4,000 milligrams daily in three divided doses with meals.
* Vitamin E: 600 1,200 international units daily in three divided doses with meals.
* Glutathione: The product Thiodox, from Allergy Research, which Dr. Miller recommends, provides a daily intake of 200 milligrams of flutathione and the nutritional co-factors necessary to make it work.
TYROSINE: Another Dopamine Booster
The amino acid tyrosine is an essential precursor of dopamine formation. Dr. Miller recommends taking 500 to 1,000 milligrams of the supplement once in the morning on an empty stomach.
Great. Just a few more things to obsessively research and pester Keith about.
Tuesday, January 5, 2010
Little Shades of Gray
More than twenty years ago, I saw a beggar for the first time. We were leaving the grocery store, and there he was. He was standing on the corner holding a sign that read Will Work for Food. We've all seen it, probably a hundred times. Usually we look away or drive on, pretending not to notice. We may roll our eyes and think Get a job! Some of us may even pass along a few bucks if we're feeling particularly charitable. But to a couple of kids, this sight was horrific. Oh my gosh! Look! as we pointed our fingers at him. That's so sad. Daddy, can't we give him some money? Please? Our parents exchanged glances. This did not look like the typical street corner beggar. He was dressed rather nicely, in a clean pair of well-fitted jeans, tucked in polo shirt and work boots. He was clean-shaven and his sign looked as if it had just been painted. What to do, what to do?!?! our parents must have thought. Enter: many little shades of gray.
Our parents could have opted to teach us about street corner beggars and why they are usually there. They could have questioned why he was dressed so well. They could have used it as a lesson on why we should always work hard, and what we could become if we don't. They could have gone on and on about the government and the state of economic affairs. There were a million different scenarios that could have played out, all representing little shades of gray - those area that aren't so black and white, or cut and dry. How do you explain to a couple of kids why it's usually not a good idea to give money to beggars standing on the street? Hmm, that flies smack in the face of charity, right? With only a moment to decide before the light turned green, my father whipped the car around and parked it back in the grocery store lot. He dashed into the store and returned a few minutes later with a huge fried chicken dinner. He pulled our car up to the corner and handed the meal to the beggar, who very graciously accepted it. We don't know what his situation is, our father explained, so I don't want to give him money. He might spend it on alcohol if he's an alcoholic, or drugs if he's a druggie. But if he really does need to work for food, then a nice meal will make him happy, and we've been good Christians and have helped someone. Lesson learned. I looked back as we drove away and saw the man hungrily chewing on a chicken leg, and was satisfied that we had done the right thing.
How easy is it to help someone when there are so many shades of gray? When that person you want to help has PD, it can be very difficult.
It should be no surprised to anyone that Keith and I have had a difficult year, and most of the problems stemmed from PD. Struggles with medication side effects and the progression of the disease have caused me to wonder whether or not I'm strong enough to see this through. The physical stuff I can handle. It's all the other things, all those little shades of gray that I struggle with most.
A few morning ago Rielly-Anne tried telling something to Keith. She repeated herself about six times in a row, waiting for him to respond. I finally had to say Keith, answer her, before he even acknowledged that she had spoken. He did the same thing to me later in the day. I was changing the baby while he was eating with Rielly-Anne. I asked Keith if she was eating. He ignored me. He claims that he did hear me but assumed I would know based on what he was talking to Rielly-Anne about. So what goes through my head during moments like this? All of the following - did he hear me? Should I repeat myself? What if he did hear me but is just taking a while to respond because his reflexes are slower now? Is he ignoring me? Is he mad at me? Maybe I should check myself to see if she's eating. If I do that, will he get pissed off for interfering with something he's trying to do? Is it worth pissing him off to make sure she's eating her dinner? What if he really didn't hear me? Maybe I should just say it again, only louder. But then if he did hear me, that will make him mad for repeating myself to him like he's dumb or something. Should I ask him if he heard me? Last time I did that he got upset. What to do, what do to?!?!?!?! Oh, so many little shades of gray. I wish I could simply know that he didn't hear me.
This scene repeats itself over and over and over again, on a daily basis. It's no wonder I feel like I'm going to lose it half the time. Almost every single interaction we have presents this scenario, in some form or fashion, in my mind. I want to do everything right by him, but with a disease that moves and changes as often as the wind, how do you accomplish that without going nuts, or offending the PWP? How do I attempt to help, or offer it, without making Keith feel like he's so bad off that he REALLY NEEDS it? How do I remind him of something he has forgotten without making him feel like he is the one losing his mind? Keith has a lot of pride. He doesn't really want me hovering over him, which I can respect. However, in instances like the Is She Eating? one, what do I do?
My parents were able to find a good solution, a great solution, actually, to a problem that had many shades of gray; a problem that could be resolved different ways with different outcomes. They chose the option they felt was best for their children and the beggar on the street. Instead of giving him money that may fuel an addiction, they gave him food to fill his stomach. They chose to teach their children to be giving and charitable, but with eyes wide open.
Looking at Keith eyes wide open, I see a great man - a man who works his butt off every day to provide for his family, who loves his children dearly and will do anything for them, who would move heaven and earth to make me happy. I see a man clearly struggling to accept PD and what it is doing to him. I see a man almost desperately holding on to his pride, while his wife hovers over him doing her best to help in a caring, if somewhat annoying, way. Perhaps the most charitable thing I can do for Keith is to look all those little shades of gray right in the eye, and accept that sometimes he just doesn't hear me.
Our parents could have opted to teach us about street corner beggars and why they are usually there. They could have questioned why he was dressed so well. They could have used it as a lesson on why we should always work hard, and what we could become if we don't. They could have gone on and on about the government and the state of economic affairs. There were a million different scenarios that could have played out, all representing little shades of gray - those area that aren't so black and white, or cut and dry. How do you explain to a couple of kids why it's usually not a good idea to give money to beggars standing on the street? Hmm, that flies smack in the face of charity, right? With only a moment to decide before the light turned green, my father whipped the car around and parked it back in the grocery store lot. He dashed into the store and returned a few minutes later with a huge fried chicken dinner. He pulled our car up to the corner and handed the meal to the beggar, who very graciously accepted it. We don't know what his situation is, our father explained, so I don't want to give him money. He might spend it on alcohol if he's an alcoholic, or drugs if he's a druggie. But if he really does need to work for food, then a nice meal will make him happy, and we've been good Christians and have helped someone. Lesson learned. I looked back as we drove away and saw the man hungrily chewing on a chicken leg, and was satisfied that we had done the right thing.
How easy is it to help someone when there are so many shades of gray? When that person you want to help has PD, it can be very difficult.
It should be no surprised to anyone that Keith and I have had a difficult year, and most of the problems stemmed from PD. Struggles with medication side effects and the progression of the disease have caused me to wonder whether or not I'm strong enough to see this through. The physical stuff I can handle. It's all the other things, all those little shades of gray that I struggle with most.
A few morning ago Rielly-Anne tried telling something to Keith. She repeated herself about six times in a row, waiting for him to respond. I finally had to say Keith, answer her, before he even acknowledged that she had spoken. He did the same thing to me later in the day. I was changing the baby while he was eating with Rielly-Anne. I asked Keith if she was eating. He ignored me. He claims that he did hear me but assumed I would know based on what he was talking to Rielly-Anne about. So what goes through my head during moments like this? All of the following - did he hear me? Should I repeat myself? What if he did hear me but is just taking a while to respond because his reflexes are slower now? Is he ignoring me? Is he mad at me? Maybe I should check myself to see if she's eating. If I do that, will he get pissed off for interfering with something he's trying to do? Is it worth pissing him off to make sure she's eating her dinner? What if he really didn't hear me? Maybe I should just say it again, only louder. But then if he did hear me, that will make him mad for repeating myself to him like he's dumb or something. Should I ask him if he heard me? Last time I did that he got upset. What to do, what do to?!?!?!?! Oh, so many little shades of gray. I wish I could simply know that he didn't hear me.
This scene repeats itself over and over and over again, on a daily basis. It's no wonder I feel like I'm going to lose it half the time. Almost every single interaction we have presents this scenario, in some form or fashion, in my mind. I want to do everything right by him, but with a disease that moves and changes as often as the wind, how do you accomplish that without going nuts, or offending the PWP? How do I attempt to help, or offer it, without making Keith feel like he's so bad off that he REALLY NEEDS it? How do I remind him of something he has forgotten without making him feel like he is the one losing his mind? Keith has a lot of pride. He doesn't really want me hovering over him, which I can respect. However, in instances like the Is She Eating? one, what do I do?
My parents were able to find a good solution, a great solution, actually, to a problem that had many shades of gray; a problem that could be resolved different ways with different outcomes. They chose the option they felt was best for their children and the beggar on the street. Instead of giving him money that may fuel an addiction, they gave him food to fill his stomach. They chose to teach their children to be giving and charitable, but with eyes wide open.
Looking at Keith eyes wide open, I see a great man - a man who works his butt off every day to provide for his family, who loves his children dearly and will do anything for them, who would move heaven and earth to make me happy. I see a man clearly struggling to accept PD and what it is doing to him. I see a man almost desperately holding on to his pride, while his wife hovers over him doing her best to help in a caring, if somewhat annoying, way. Perhaps the most charitable thing I can do for Keith is to look all those little shades of gray right in the eye, and accept that sometimes he just doesn't hear me.
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