Webster's Dictionary describes apathy as 1. absence of emotion, and 2. lack of interest or concern. Dr. Wooten, the PD specialist, tried to prepare me for this. I just didn't know it could get so bad.
One of the biggest issues I face as the spouse of a PWP is dealing with the wonderful PD symptom known as apathy. Keith has always been a very laid back kind of guy. He is even-tempered (except at the Wendy's just down the road - they always mess up our order!) and not normally an excitable person. Add PD to the mix, and you've got yourself one "emotionless" and "non-caring" guy. Only, not really.
I woke up this morning in a blue funk. I was depressed and ticked off. For some reason (maybe I had a dream I don't remember???) I was mad at Keith. I spent most of the morning mad and depressed, feeling like he just doesn't give a damn. Sometimes I think that he doesn't care about me or the kids. I think he isn't happy, or that he could care less about our family and what goes on it. I feel this way because I can rarely read my husband's face anymore. He never gets visibly excited. His face hardly ever lights up. He doesn't seem to be truly passionate about anything anymore. This is the one thing about PD that I stuggle with the most.
I know Keith cares. I know he loves each and every one of us. Why, just a few weeks ago he gave me a card with all kinds of mushy stuff in it, just because. The following week he left a love note on the bathroom mirror. The other day he brought me flowers. He is very interested in our kids and what goes on in their lives. He is actively involved. But when he literally shows no emotion, it's hard to believe it all. I have to remind myself constantly, like this morning, that he can't show emotion.
I've spent the better part of this afternoon talking myself out of feeling angry and depressed. I know my feelings are normal, but they really should not be directed at Keith. I've talked to him several times today on the phone. I can hear the love in his voice. I hear the concern and the passion. Why is it easier to believe over the phone??? Is is because I am not looking for facial expressions? Is is because I know I have to focus on what he's saying, which automatically tunes me in to the heart of him? Can I actually hear more when I see less?
Monday, July 28, 2008
Voicing A New Concern
One of the biggest differences I've noticed in Keith since his PD diagnosis has been that his voice has changed considerably. More specifically, it's his voice volume that has seen the most change. He speaks much softer now and tries to speak as if you are standing right next to him, even if you are in another room. This is one of two PD related issues (I'll blog about the other one next) that seems to affect us the most. It's gotten really bad lately. It may be that I deal with this more than others because of the noise volume in our house. We've so many kids here all the time that it gets pretty loud. We need to find a way to deal with it more effectively.
The other day I was sitting here on the computer. Keith and I were having a conversation and he turned away from me to leave the room. He was still talking as he was walking away. I couldn't hear him, so I said, "What?" He repeated what he had said, still turned away from me, still walking away. I got a little irritated. "WHAT?!" I said, a bit more loudly. Then he got irritated. He stopped, turned to me, and practically yelled what he wanted to say. I felt bad and apoligized. Then I felt even worse when he said that he "can't help it!" to which I replied, "I know you can't help it. But you KNOW you have PD. You KNOW your voice has changed. You KNOW I can't hear you. If I ask you to repeat yourself or say 'what' that means you need to make a point to make sure I can hear you. If you keep your back turned and keep walking away, how am I supposed to hear anything you say?" "Well, it already feels like I'm yelling everything I say," he said.
Hmm . . . . it feels like he's yelling already. That alone speaks volumes. What does that say about how the disease has progressed in the verbal sense if he feels like almost every time he talks, he's yelling? Especially when I (and most everyone else) can barely hear him?
There are many times when Keith is in the kitchen talking and I am in the other room. I hear him speaking though I can't actually hear well enough to make out what he's saying. Sometimes I have to ask him several times to repeat himself. That really frustrates him. He hates it when I do that, but what else can I do? This is a difficult one for me. I am so busy that at times I know I am a bit harsh. I know I need to slow down and speak more calmly. I think "Good grief! With all these kids here all the time, how can you NOT yell everything anyway??" I have to remind myself that his voice has changed - is changing - because he has PD, which makes me feel even worse, because how can I "forget" that he has PD, when he never can?
The other day I was sitting here on the computer. Keith and I were having a conversation and he turned away from me to leave the room. He was still talking as he was walking away. I couldn't hear him, so I said, "What?" He repeated what he had said, still turned away from me, still walking away. I got a little irritated. "WHAT?!" I said, a bit more loudly. Then he got irritated. He stopped, turned to me, and practically yelled what he wanted to say. I felt bad and apoligized. Then I felt even worse when he said that he "can't help it!" to which I replied, "I know you can't help it. But you KNOW you have PD. You KNOW your voice has changed. You KNOW I can't hear you. If I ask you to repeat yourself or say 'what' that means you need to make a point to make sure I can hear you. If you keep your back turned and keep walking away, how am I supposed to hear anything you say?" "Well, it already feels like I'm yelling everything I say," he said.
Hmm . . . . it feels like he's yelling already. That alone speaks volumes. What does that say about how the disease has progressed in the verbal sense if he feels like almost every time he talks, he's yelling? Especially when I (and most everyone else) can barely hear him?
There are many times when Keith is in the kitchen talking and I am in the other room. I hear him speaking though I can't actually hear well enough to make out what he's saying. Sometimes I have to ask him several times to repeat himself. That really frustrates him. He hates it when I do that, but what else can I do? This is a difficult one for me. I am so busy that at times I know I am a bit harsh. I know I need to slow down and speak more calmly. I think "Good grief! With all these kids here all the time, how can you NOT yell everything anyway??" I have to remind myself that his voice has changed - is changing - because he has PD, which makes me feel even worse, because how can I "forget" that he has PD, when he never can?
Monday, July 21, 2008
Morrie Explains it All
I am reading Tuesdays with Morrie by Mitch Albom for the third time is as many months. This time I have gone through it with a highlighter and marked the passages and quotes I like best. I highly suggest you all read this book!
Lately, more so than before, I have been getting a lot of comments about WHY I am choosing to do certain things, like foster Pierre or have another baby. Certain individuals look at me cross-eyed as if I'm some kind of freak. They ask me sarcastically if I realize my husband has PD. They make rude comments and offer strange suggestions. But mostly they are baffled. So I have chosen to post my favorite quotes from Tuesdays with Morrie in explanation -
"You have to find what's good and true and beautiful in your life as it is now." Thank you, Morrie, for pointing that out. So many people forget how blessed we all are. We have a wonderful life, so why wallow in sorrow and pity? Keith and I have so very many things to be thankful for. We truly do have a wonderful life.
"You know what really gives you satisfaction? . . . . . Offering others what you have to give. . . . . Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning." Well said. That should explain plenty.
"Do the kinds of things that come from the heart. When you do, you won't be dissatisfied, you won't be envious, you won't be longing for somebody else's things. On the contrary, you'll be overwhelmed with what comes back." So true! Keith and I feel we have so much and we have so much to offer, to our own kids and those around us. Sometimes we feel we could and should do more, sometimes we feel overwhelmed with what we already do. But we are reaping in the rewards in many different ways.
So I hope that clears things up a bit . . . .
Lately, more so than before, I have been getting a lot of comments about WHY I am choosing to do certain things, like foster Pierre or have another baby. Certain individuals look at me cross-eyed as if I'm some kind of freak. They ask me sarcastically if I realize my husband has PD. They make rude comments and offer strange suggestions. But mostly they are baffled. So I have chosen to post my favorite quotes from Tuesdays with Morrie in explanation -
"You have to find what's good and true and beautiful in your life as it is now." Thank you, Morrie, for pointing that out. So many people forget how blessed we all are. We have a wonderful life, so why wallow in sorrow and pity? Keith and I have so very many things to be thankful for. We truly do have a wonderful life.
"You know what really gives you satisfaction? . . . . . Offering others what you have to give. . . . . Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning." Well said. That should explain plenty.
"Do the kinds of things that come from the heart. When you do, you won't be dissatisfied, you won't be envious, you won't be longing for somebody else's things. On the contrary, you'll be overwhelmed with what comes back." So true! Keith and I feel we have so much and we have so much to offer, to our own kids and those around us. Sometimes we feel we could and should do more, sometimes we feel overwhelmed with what we already do. But we are reaping in the rewards in many different ways.
So I hope that clears things up a bit . . . .
New Support for Keith
When we were in Richmond for Ride Against Parkinson's, Susan gave Keith the name and number of a lady close by who has just recently started a Young Onset support group. This is wonderful news for Keith, who has been attending our local support group for PD.
The problem with the "old" support group is just that - it's old. All the PWP who attend are elderly. Keith is totally out of place. He enjoys going and meeting everyone and listening to the guest speakers. But he has picked up a vibe of hostility and resentment from almost everyone else there. They are nice and polite to him, but I don't think they like someone young and active among them. It just reminds them that they are not.
So the new YO support group looks promising. It will be held on Saturdays, which means the kids and I can attend if we like. Keith is looking forward to it, and any time that he get excited about a PD related event makes me happy!
The problem with the "old" support group is just that - it's old. All the PWP who attend are elderly. Keith is totally out of place. He enjoys going and meeting everyone and listening to the guest speakers. But he has picked up a vibe of hostility and resentment from almost everyone else there. They are nice and polite to him, but I don't think they like someone young and active among them. It just reminds them that they are not.
So the new YO support group looks promising. It will be held on Saturdays, which means the kids and I can attend if we like. Keith is looking forward to it, and any time that he get excited about a PD related event makes me happy!
Dystonia
I recently received an email from Renee on behalf of The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. I was asked to post on my blog their PSA about Dystonia, of which I said I'd be happy to oblige after doing some research on the topic. Well, there just isn't any information to be found.
Dystonia is similar to PD in that it is a neurological muscle disorder. However unlike PD, Dystonia is not well known to the public. The medical community itself knows little about the disease as research is extremely under-funded. While thousands of adults AND CHILDREN have Dystonia, most never receive a proper prognosis.
Dystonia causes uncontrollable, painful spasms in the body. It can affect the face, neck, throat, eyelids, arms, legs or torso. More people in North America have Dystonia than have Muscular Dystrophy, Huntington's Disease, and Lou Gehrig's disease combined. That is a staggering statistic!
I know what it's like to have a husband with a neurological disorder. I have spent countless hours pouring over medical journals, books, the Internet, pamphlets and brochures just to get ANY information I can. Many times I walk away frustrated because I could not find the information I was looking for. I can not imagine having Dystonia or someone I care about having it, and not being able to research it. It it just terrible that not enough is being done to get the word out about this devastating disease.
Please watch this YouTube PSA about Dystonia, and visit The Bachmann-Strauss Foundation!
Dystonia is similar to PD in that it is a neurological muscle disorder. However unlike PD, Dystonia is not well known to the public. The medical community itself knows little about the disease as research is extremely under-funded. While thousands of adults AND CHILDREN have Dystonia, most never receive a proper prognosis.
Dystonia causes uncontrollable, painful spasms in the body. It can affect the face, neck, throat, eyelids, arms, legs or torso. More people in North America have Dystonia than have Muscular Dystrophy, Huntington's Disease, and Lou Gehrig's disease combined. That is a staggering statistic!
I know what it's like to have a husband with a neurological disorder. I have spent countless hours pouring over medical journals, books, the Internet, pamphlets and brochures just to get ANY information I can. Many times I walk away frustrated because I could not find the information I was looking for. I can not imagine having Dystonia or someone I care about having it, and not being able to research it. It it just terrible that not enough is being done to get the word out about this devastating disease.
Please watch this YouTube PSA about Dystonia, and visit The Bachmann-Strauss Foundation!
Wednesday, July 9, 2008
When Is "Just Good Enough" Actually Good Enough?
As most of you know, I am constantly harping on Keith to exercise. I am always on his case about how good working out is for PWP and how beneficial the stretches alone can be. Keith does work out some on his weight machine, but not enough to really justify owning it. (in my opinion - I'm sure he would disagree) He always tells me that because of his job he is quite mobile and active and that what little he does do on the weight machine is just good enough, thank you! I've never been satisfied with that. It's just not good enough. I want daily stretches and workouts, weekly visits to the Y, maybe a membership to a local gym. Basically, I want it all - for him. But then I noticed something today that changed my mind.
Keith is off work today and spent most of the morning working in the shop. He had the garage door open so I was able to watch what he was doing. He was doing a lot more than I've ever really given him credit for. He was bending, reaching, twisting and turning to reach things, pushing and pulling various heavy pieces of something I can only assume is (or was!) a car (it had two big wheels on it, other than that, I'm lost!) He was pressure-washing stuff and toting buckets and getting a pretty good workout in general. It made me stop and realize that maybe his version of good enough actually IS good enough. Maybe I need to step back and trust my husband a little more. Maybe he really DOES know more about what his body is capable of than I do. That's really hard for me to admit, though I know how horrible that sounds. I guess I'm just way too overprotective of him when it comes to PD.
I've learned today that trust and compromise come in many forms. I have learned that I don't always know what's best for my husband, and that I really do need to let him decided what course of action he wants to take to fight this disease. Keith is very active in spite of having PD, and that is good enough for me.
Keith is off work today and spent most of the morning working in the shop. He had the garage door open so I was able to watch what he was doing. He was doing a lot more than I've ever really given him credit for. He was bending, reaching, twisting and turning to reach things, pushing and pulling various heavy pieces of something I can only assume is (or was!) a car (it had two big wheels on it, other than that, I'm lost!) He was pressure-washing stuff and toting buckets and getting a pretty good workout in general. It made me stop and realize that maybe his version of good enough actually IS good enough. Maybe I need to step back and trust my husband a little more. Maybe he really DOES know more about what his body is capable of than I do. That's really hard for me to admit, though I know how horrible that sounds. I guess I'm just way too overprotective of him when it comes to PD.
I've learned today that trust and compromise come in many forms. I have learned that I don't always know what's best for my husband, and that I really do need to let him decided what course of action he wants to take to fight this disease. Keith is very active in spite of having PD, and that is good enough for me.
Saturday, July 5, 2008
Our Newest Family Member
We have a new addition to our family!
Angel Missions of Haiti is a non-profit Christian missions group that brings dying babies in Haiti here to the U.S. for medical treatment and surgery. We were asked last week if they could place a baby with us and we said yes! His name is Pierre and he is 7 months old. He has a cleft lip and cleft palate, plus several other non-life threatening issues. But he is very bright and cheerful and loves to laugh and play with the other kids. We are quite attached to him already. We feel blessed to be able to provide this little baby with a healthy, safe and loving home to heal and recover in. Please pray that he has a speedy recovery and gets to reture home to his loving mama soon!
Angel Missions of Haiti is a non-profit Christian missions group that brings dying babies in Haiti here to the U.S. for medical treatment and surgery. We were asked last week if they could place a baby with us and we said yes! His name is Pierre and he is 7 months old. He has a cleft lip and cleft palate, plus several other non-life threatening issues. But he is very bright and cheerful and loves to laugh and play with the other kids. We are quite attached to him already. We feel blessed to be able to provide this little baby with a healthy, safe and loving home to heal and recover in. Please pray that he has a speedy recovery and gets to reture home to his loving mama soon!
Ride Against Parkinson's Disease - Update
I promised and update about how things went at the Chickahominy YMCA for the Ride Against Parkinson's -
It was great!!! It was wonderful!!! Keith and I drove out there with Rielly-Anne. We were a little late leaving home so we missed Carsten's arrival, but the rest of the day made up for it. We were able to meed Carsten, who is a true inspiration, and Cheryl, whom I've emailed several times but was never able to meet until then. Susan from UVA (she is the information and referral person for the APDA) was there, along with several members of the Richmond Chapter APDA and YMCA. We were able to meet other YOPWP as well, which was really important to Keith.
I was worried on the way there that it would be depressing. I was worried that I would break down and cry if I saw someone in bad shape. I was worried that the tone of the entire event would be somewhat desperate and pathetic, for lack of a better word. Boy was I wrong! The entire place and everyone in it was happy and upbeat. Everyone was so happy to be there and meet Carsten and show support for each other. It was not at all what I thought it would be. Keith and I had such a good time. We made some new friends and were able to experience, for the first time ever, a support system of like-minded and similarly diagnosed people. It was wonderful to be in the presence of such a fine group of people!
Here is Carsten, Keith and Rielly-Anne.
Keith and Carsten.
The PD exercise class.
Keith always seems to find fellow car nuts!
Me and Rielly-Anne.
Carsten leaving for D.C.
The only part about the entire event that did not sit well with me was the article in the paper. You can find the article here. There is a beautifully done slide show, and the article itself it well written. The problem I have is that THAT IS NOT WHAT I SAID!!!! I gotta say, I'm a little disappointed in the reporter. Why she chose to use my interview over someone who actually has PD is beyond me, but the least she could have done was print what I said. What I really said had nothing to do with what is quoted in the article. Keep that in mind when you read it and think "HUH????"
;)
Other than that, Keith and I are looking forward to whatever event is next planned for the Richmond area. We've asked that Cheryl keep us posted. It's not too far a drive for us to go to something we fully support and enjoy so much.
It was great!!! It was wonderful!!! Keith and I drove out there with Rielly-Anne. We were a little late leaving home so we missed Carsten's arrival, but the rest of the day made up for it. We were able to meed Carsten, who is a true inspiration, and Cheryl, whom I've emailed several times but was never able to meet until then. Susan from UVA (she is the information and referral person for the APDA) was there, along with several members of the Richmond Chapter APDA and YMCA. We were able to meet other YOPWP as well, which was really important to Keith.
I was worried on the way there that it would be depressing. I was worried that I would break down and cry if I saw someone in bad shape. I was worried that the tone of the entire event would be somewhat desperate and pathetic, for lack of a better word. Boy was I wrong! The entire place and everyone in it was happy and upbeat. Everyone was so happy to be there and meet Carsten and show support for each other. It was not at all what I thought it would be. Keith and I had such a good time. We made some new friends and were able to experience, for the first time ever, a support system of like-minded and similarly diagnosed people. It was wonderful to be in the presence of such a fine group of people!
Here is Carsten, Keith and Rielly-Anne.
Keith and Carsten.
The PD exercise class.
Keith always seems to find fellow car nuts!
Me and Rielly-Anne.
Carsten leaving for D.C.
The only part about the entire event that did not sit well with me was the article in the paper. You can find the article here. There is a beautifully done slide show, and the article itself it well written. The problem I have is that THAT IS NOT WHAT I SAID!!!! I gotta say, I'm a little disappointed in the reporter. Why she chose to use my interview over someone who actually has PD is beyond me, but the least she could have done was print what I said. What I really said had nothing to do with what is quoted in the article. Keep that in mind when you read it and think "HUH????"
;)
Other than that, Keith and I are looking forward to whatever event is next planned for the Richmond area. We've asked that Cheryl keep us posted. It's not too far a drive for us to go to something we fully support and enjoy so much.
Dr. Cregon's Reply
I heard back from Dr. C just hours after sending him an email. He was precise and informative. According to Dr. C, breastmilk has been proven to prevent and lessen illness and disease in individuals whose immune systems are not fully developed - infants. It has not been proven to have this affect in adults, though some swear of its healing powers. Dr. C believes that in cases of adults benefiting medically through the use of breastmilk, it has much more to do with the placebo affect than anything else. But, just as they can not prove its ability to heal adults, they can not actually disprove it either. And because there are about 100 elements in breastmilk that are currently unknown or have yet to be discovered, scientists continue to study it and its many benefits, and how it all can be used medically. He would love it if Keith and I could participate in any one of his clinical trials.
Keith and I would love to participate in his trials, but they are all in Australia. And while I respect Dr. Cregon and admire the work he has done, I think I disagree with the whole "placebo affect" idea. I have seen breastmilk calm nausea, clear up pink eye and ease a painful ear infection. I just don't think the placebo affect theory works when children are involved. If I squirt a drop or two of breastmilk into a 5 year old's ear, you'd better be sure he's going to let me know if his ear still hurts an hour later. The same with pink eye. You can physically see that. You can physically see the breastmilk "cleaning" the eye and clearing the infection. But after all that, I'm just not entirely sure that it would do anything for Keith aside from pumping him full of natural vitamins and antibiotics. I really am undecided on this. He's game for it and I really want to try, but . . . . .now I know that breastmilk itself can't cure PD. The stem cells would have to be remove from the milk and harvested and grown according to what is needed. But a huge part of me firmly believes that because there is so much still unknown about it, there is a good possibility that it could benefit him in some significant way. I'm just not sure it I want to do all that pumping.
Guess I'll have to get back to ya on that one . . . . . .
Keith and I would love to participate in his trials, but they are all in Australia. And while I respect Dr. Cregon and admire the work he has done, I think I disagree with the whole "placebo affect" idea. I have seen breastmilk calm nausea, clear up pink eye and ease a painful ear infection. I just don't think the placebo affect theory works when children are involved. If I squirt a drop or two of breastmilk into a 5 year old's ear, you'd better be sure he's going to let me know if his ear still hurts an hour later. The same with pink eye. You can physically see that. You can physically see the breastmilk "cleaning" the eye and clearing the infection. But after all that, I'm just not entirely sure that it would do anything for Keith aside from pumping him full of natural vitamins and antibiotics. I really am undecided on this. He's game for it and I really want to try, but . . . . .now I know that breastmilk itself can't cure PD. The stem cells would have to be remove from the milk and harvested and grown according to what is needed. But a huge part of me firmly believes that because there is so much still unknown about it, there is a good possibility that it could benefit him in some significant way. I'm just not sure it I want to do all that pumping.
Guess I'll have to get back to ya on that one . . . . . .
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