It's All In How You Look At It

I realize it's not appropriate to post from a private support group onto a public blog, so I'll just post my own response.

A lady posted on an online support group about entering into a relationship with a man several years her senior who had been recently diagnosed with PD. There were some supportive replies and a lot of not-so-supportive replies. Here is mine, copied and pasted:

I know all too well the apprehension and trepidation of entering into a relationship with a man who has PD. My dh is 23 years my senior. We each have a child from previous marriages, and have decide to start a family of our own. We have a two year old and are trying for another. The nay'sayers and flame-throwers are limitless. You have to develop a thick skin to be in our shoes.

I have to agree with pretty much everything ---- said. I couldn't have said it better myself. The best advice I can give at this point is to base your decision on what you DO know, not on what you DON'T know.What you DON'T know is regarding what ---- addressed - children.

1. Yes, your innocent children may be afflicted with PD. It is no secret that PD can be and in many cases IS, inherited. But so can a slew of other illnesses. No one wants to risk passing on such a horrible disease to their children. And it is a huge risk, no doubt. But you don't know that you will pass it on. If we based our decision to have children on what we could potentially pass on to them, no one would have kids. Alcoholism, mental illness, cancer, diabetes, alzheimers, down's syndrome - the list goes on and on. You could try to adopt, yes, but that could prove to be very challenging. There are not many agencies out there willing to give a child to a family with PD. The decision to have children with this man will be a hard one to make, but base it on what you know will happen, not what 'could' happen.

2. You will essentially have to be a single mom at some point. Because you don't know how the disease will progress, you don't know when that time will come. Hopefully, not until the children are grown, or at least up in size. But you do need to be prepared for the possibility that you will be the sole provider, financially, emotionally, physically. Having said that, again I have to say that you don't know what will happen. Your loved one may be perfectly capable of helping you with the kids. It's not an all or nothing thing either. If you are able to think outside the box and be a little creative, you should be able to work around many of the PD issues. Example - I make sure to purchase clothing and shoes my dh can put on my daughter. Elastic waists, loose tops, lots of dresses, velcro shoes. And we co-sleep, which gives him a ton of close, physical bonding time with her each day that he would otherwise not be able to do. Also, because PD affects his voice and facial expressions, singing and reading to our daughter with great expression and exaggerated emphasis is a good way to incorporate voice exercises into a normal play routine. So you see, there are many creative ways to work around these issues.

3. Yes, children need both parents. No one is going to argue that. But a disabled parent is not an absent parent. Yes, all children would prefer to have both parents healthy, and yes there are a million ways to teach compassion, empathy, kindness and understanding without imposing this situation on them. BUT, each child's reaction to PD has much more to do with their own personality than anything else. How else to you account for the parents who raise their kids to be persons of strong character, yet the child ends up in jail? Or the parents who are total losers and abuse the kids, but one grows up to be president? You can only raise your child in the best way you know how - the rest is up to them. That is true whether you have PD in the family or not. Yes, this does present a special challenge to children. I see it everyday in my own home. I am not blind to the fact that PD affects children. But the fact is, kids grow up to be angry, resentful and pissed off for a lot of other reasons besides having a father with PD.

As I said, base your decision on what you DO know. You DO know that PD is a progessive, degenerative, neurological disorder. You do know the symptoms and how they can affect your loved one. Get as much information as possible. Join online support communities, as you have done here. Network, network, network - join local support groups, make friends with PD patients and their carepartners. Surround yourself with a group of individuals who truly understands your situation. These are the people you will need to be able to fall back on to help you through, whether it be emotional support for you, helping you take care of your spouse and/or the kids, or helping you get some housework done. You will find that there are many people out there willing to help if you open up and let them in.

If you venture into this relationship, keep in mind that most people are not going to be supportive, at least in the beginning. You may feel very much alone at times. But if you truly love him, then go for it. We all want someone to love us, even those with PD. And loving a man with PD is no cakewalk for sure. But you need to be able to find the good in it somehow. Take what is good, hold it close and run with it. Don't let PD dictate how you live your life.

Prepare for the worst but hope for the best. If you need to make financial arrangements, then do so. You may need to move to a house more handicapped accessible, or downsize to a one-story. You may need to give up the extra vehicle to pay for extra insurance. Like most of us, I am sure you are not rich, so you will need to prepare for the future. But that doesn't mean you have to live your life as if you can't make a single move because of PD. PD can rob you of so much, so live your life to the fullest while you still can.

My dh worries all the time about not being able to provide me with the kind of life that he feels I deserve. I think that is inevitable of anyone with PD - most feel at some point as if they are a burden. You will need to give him a ton of encouragement and support. What you say to him matters much more than you may realize. This is where you will need to get creative and think outside the box. If he is worried about not contributing equally, especially if you have kids, then this is the time to show him how he can contribute in ways that he may be unaccustomed to, things that may be unconventional. Go out of your way to prove to him that what he is able to do is very important to you and very helpful.

Most of all, tell him every single day how much you love him, and why.

Good luck in all you do! My prayers are with you and yours!

Explaining and Asking

Lately I have found myself in a bit of a quandary. It has become more difficult to explain Keith's physical limitations, in turn making it more difficult to ask those around us for help. How do you explain a person being "in between?" Keith is not physically disabled, yet he is definitely on a downhill slope. If you can't make others understand the physical limitations of one not yet disabled, how do you explain the need for help?

I have always been proud of the fact that my husband was one of those urban legends or myths you hear about. You know - the guy that doesn't mind washing dishes, changing dirty diapers or throwing a load of laundry in the washer. When my girlfriends and I get together the conversation usually rolls around to whining about husbands and why they never help out around the house. I have always been able to boast that MY husband will do anything I ask. I did not need to nag or badger him - I simply asked. But recently things have changed. I don't mind that things have changed as I understand why. The PD is progessing and Keith just can't do what he used to do. I rarely ask him to help around the house anymore because I feel so guilty asking him to do anything other than rest. So now when I get together with my friends I try to explain to them that Keith can't help out anymore. They roll their eyes and get quiet. I know what they are thinking - if he can work 50 hours a week then he should be able to take out the trash. Hell, I've had that very same thought many times. I have since come to understand that once Keith reaches his limit, he's done. He has a certain amount of time each day when he feels energetic and productive. Once that time is up, it's up. He needs to rest from that point on or he'll be in worse shape the next day. I know it. It's not so easy for others to see it.

Keith and Bryan recently attended a PD educational conference. During the Q&A a man asked how he could get his family and friends to help him. The answer - ask. Ask for help. Seems simple enough, especially for a PWP much more progessed than Keith. But this solution presents a couple problems for me. First of all, I have never been good at asking for anything, especially help. Call it being stubborn, call it having too much pride, call it what you will. I just don't like asking for help, particularly from my family. Second, a large part of me still believes that if they really cared they would see for themselves that Keith needs help, and then I wouldn't have to ask.

Speaking strictly of my family, I hear a lot of Oh he's fine! or He's still getting around okay. He'll be alright! or Don't worry. He's a tough guy! Every once in awhile when I try to tell it like it is, I get Oh man! Hmmm . . . yeah, that's too bad. What a shame! I know they mean well. I know they are trying to make me feel better, make me believe that he will in fact, be just fine. But I wish they would finally stop trying to gloss over the reality of what actually IS. What they see is a man who works 50+ hours a week and is rebuilding a 69 Camaro. They see a man doting on his children, planning to have another. They don't see the full picture and trying to explain it to them is next to impossible. Seeing is believing, so they say. And because of what they see, they simply do not believe how difficult it is for Keith to do so many different things. Maybe he will have to be in a wheelchair before anyone else gets it and offers help. Maybe I just need to suck it up and learn how to ask for help.

Consider the film SHAKEN as a holiday gift!

Deborah Fryer of Lila Films is offering a HUGE discount for all PWP and their family and friends who wish to order the film SHAKEN. If you order online the price is $150, which is the price for medical schools, PD organizations, libraries, doctors, etc. But if you are a PWP (or a family member or a friend) you can contact Deborah directly to get SHAKEN at just $29.99!! That is quite a big savings!!! Support groups can purchase SHAKEN at a discount as well, for $75.

Because every 9 minutes someone is newly diagnosed with PD, Deborah will donate 9% of proceeds back to the PD cause! How wonderful is that! (Be sure to reference "Life With Shaky" or "Mary Sullivan" when ordering).

Click on the SHAKEN link to the left of the screen for more information, or contact Deborah at -

shaken@lilafilms.com
303-442-1966

I am putting together a list of institutions and organizations that I will soon contact to purchase SHAKEN. If you would like to add yours to my list, please contact me through the comments section of this blog, or by email -

keithandmary_3@yahoo.com

We are looking forward to lots of sales!!!!!

Can We Ignore Parkinson's?

Don't we all wish we could ignore Parkinson's? Wouldn't it be nice if we could simply pretend that it doesn't exist? How difficult or easy would it be?

I am usually up to my neck in PD - research, support groups, conferences, fundraising, blogging. Sometimes I get tired of dealing with it all, so I just stop. I stop blogging for awhile. I don't read PD related emails. I ignore all the invitations to PD events. When it becomes too much I simply pretend like it doesn't exist. I drop it at the door like a muddy pair of boots. But as much as I would like to simply turn it off, I never can. I have spent a lot of time online recently doing pretty much every thing I can think of except anything having to do with PD. (well, okay - I have exchanged a few emails with PD friends and my partner working on the charity ball) I made a point to see how long I could go ignoring PD. I wanted to find out how stressful all my extra curricular PD activities actually are, and if ignoring them would somehow, in some way, return my life to "normal," the way if was before PD. Turns out, you can't ignore PD.

While I may have been able to temporarily turn my back on blogging, support groups, etc., I can never turn my back on my husband. It is virtually impossible to ignore what PD is doing to Keith. I can not ignore his exhaustion, the tremors, the stiffness, the reminders to take his medication on time. I certainly could not ignore the guilt I felt over my little experiment. Who am I to turn my back on PD when Keith will never be able to? If anything, he will have to devote more and more time to it as the disease progesses. Trying to reconcile that difference has been more stressful and more painful than actually facing PD head-on.Since Keith's diagnosis, always in the back of mind are two words repeated over and over - do something. I hear it constantly. Do something, do something, do something, do something, do something. While I can't stop the progession of PD in Keith and I certainly can't make it all go away, much as I'd like, I CAN do something. I can do a lot of something. Through blogging and activism, I can reach out to others in similar positions. I can educate those that may know very little about PD, or help their loved ones and caregivers understand that they are not alone. I can help raise awareness and put together events to fund more research for a cure. I can (I hope) inspire others to continue living their lives, PD and all, to the fullest, never taking one day, one moment, for granted. If I ignore PD then I put an end to what Keith and I feel is our mission - to educate, advocate and inspire, and that just won't do.

I realized that I genuinely enjoy all that I do in the PD community. It has become such a part of me that to ignore it would be attempting to ignore a large part of who I am. To turn my back on PD is to turn my back on Keith, because every single thing I do related to PD is ultimately for him. So to answer my own question - no, I can not ignore Parkinson's, nor do I want to.

Just A Reminder

We only have two months left of shopping at Life With Shaky to bring in more funds for The American Parkinson's Disease Association!

Come on guys! Let's give the APDA a hefty chunk of change this year!!! Shop, shop, shop!!!!

For Those Interested -

From Kathryn M. Martin, Public Affairs/Patient Advocacy Manager at MediciGlobal -

“In 5 minutes or less, your input can help us help others. We’re creating materials about an upcoming Parkinson’s Disease (PD) clinical study, and we'd like to know how you rate the headlines and designs. This survey is anonymous, so we won’t ask for any identifying information. By clicking on the following link you will be connected to our questions: https://www.surveymonkey.com/s.aspx?sm=_2fbQTKCMj5hJsShlmxJjsWQ_3d_3d. We appreciate your feedback!”

Sacrifice and the Things I Thought I Knew

Last night I was sitting on our large front porch thinking about sacrifice and how it relates to PD and our situation. I always go back and forth on this one. Some people, I know, feel I am sacrificing a lot to be the wife of a PWP. Do I feel that way? Well, yes and no. Last night while sitting on the porch I was specifically thinking about the porch itself, and how much I love it. I love that huge, covered, wrap-around porch. I love the house attached to the porch, and I really love the view from the porch. It is a fact that one day we will have to give it all up. Financially there is no way for us to pay off the house and build an addition. We need a larger house, but we also need a paid-for house. Not going to happen here. While there are several other options available to us, we know with certainty that the first house we purchased together, the house our daughter was born in, we will have to give up. Our house has fallen victim to PD.

Sacrifice. We will sacrifice our house, our home, to ease the financial burden of the future. I will be sad to leave the home I so dearly love, but as always, I will be okay. We will be okay. But it's just a house. I can make any house a home for us. What about all the other sacrifices made in the name of PD? Can I list them all, one by one? And if so, would it be a wise thing to do? Would it embitter me and make me angry? Would it make me sad and depressed? I don't think so . . . .

See, here's the thing about sacrifice - it's not always about what you've lost. I have found that sacrifice is much more about what you gain. In Mitch Albom's book The Five People You Meet In Heaven, the character named Captain says this of sacrifice -

" . . . Sacrifice is a part of life. It's supposed to be. It's not something to regret. It's something to aspire to. Little sacrifices. Big sacrifices. A mother works so her son can go to school. A daughter moves home to take care of her sick father. . . . That's the thing. Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."

So listing all the sacrifices I have personally made for PD wouldn't necessarily be a bad thing. Certainly not if they are supposed to happen, as a normal part of life. But there is a big problem in listing all my sacrifices. I don't really feel as if I am sacrificing anything, except for my home. So many people have pointed them all out to me -
I am sacrificing my youth.
I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my children having a young and healthy father.
I am sacrificing my emotional and spiritual well being.
I am sacrificing my home.
Over and over again I hear it all, from family and friends with the best of intentions, to nosy strangers in the checkout line at Walmart. Everyone is wrought with sorrow and regret and an opinion about what I am sacrificing in my marriage to a middle aged man with PD.
But what about my choices? Where does choice and decision come into play? I agree that technically I may be sacrificing all of the above, but if sacrifice is a part of life and something to aspire to, and if I willingly made these choices and decided to live this life, then all these sacrifices have become noble rather than regretful.

I knew from day one there was a very high probability of Keith being diagnosed with PD. I saw the tremors on our first date. The writing was on the wall, so to speak. I decided to enter into a relationship with a man that in all likelihood, would be diagnosed with PD. I decided to marry that same man, and have his children. All the things that go along with loving and being married to a PWP have been choices and decisions I have made, WE have made, together. It really takes the edge off sacrifice when it becomes a choice.

It's all the things I didn't know that ring true of sacrifice now. For instance, I knew that one day our daughter would be too heavy for Keith to pick up and hold. What I didn't know was how disappointing it would be when that day came much sooner than expected. I knew that when my son recently bought his first guitar he would want Keith to show him how to play and that Keith would have a difficult time doing so. What I didn't know was how my heart would leap into my throat with pride at my son's loving, thoughtful and understanding reaction to Keith's inability to play guitar with him. I knew that the symptoms of PD include facial masking and apathy. What I didn't know was how difficult it would be to no longer read my husband's emotions and thoughts in his face. I knew that stress and excitement would cause Keith's tremors to become more pronounced. What I didn't know was that simply telling a story about a stressful event that took place more than five years ago could still cause his tremors to worsen. I didn't know how angry I would become at total strangers getting impatient with Keith for walking slowly in front of them at the grocery store. I didn't know that feeling Keith's tremors in the middle of the night would be gut wrenching and deeply comforting all at the same time. I didn't know that I would hate his hobby for robbing me of time with him, but still be grateful to it for keeping him happy and motivated. I didn't know that I would be so willing to sacrifice nearly every single thing I have to keep Keith healthy. I didn't know it would become so important to me to have children with this man for reasons no one else seems to understand. I didn't know I would get so little support and understanding from those closest to me. I didn't know that an elderly PWP sitting in a wheelchair could teach me so much without ever saying a word. I didn't know how much I would enjoy attending a PD support group. I didn't know I could love someone other than my children so completely and unconditionally. I didn't know that my biggest fears and greatest dreams could coincide and happen all at the same time. I didn't know that I would be given so much more than I ever hoped for.

What is sacrifice without the choice and decision that precedes it? I made the choice to live this life, sacrifices and all. Yes, there were many, many things I did not know would materialize when I made that choice. Perhaps you could call that sacrifice. On paper, or this blog, maybe it doesn't always look so good. Hell, some people could get depressed just by reading this post. But regardless of how it all looks, regardless of all the sacrifices being made, in my heart I truly feel as if I have it all. These are not sacrifices made because of PD. They are decisions made in the name of love. I have a good man who loves me dearly and adores our children, who would move heaven and earth to make us happy. I have great kids who make me proud everyday. I have a nice home in a nice neighborhood. I have the proverbial life - the little house with the white picket fence. I have a wonderful life of which no sacrifice is too great. That I do know.

So Here's Where We Are -

Activism is very important to me, especially when it comes to PD. And quite frankly, even with all the celebrity buzz surrounding Michael J. Fox and Muhammad Ali, there just isn't enough out there. Most of the information I've gathered over the past few years is the same stuff written over and over again. And what about the kids of the YO patients? There is less for them. Yeah, there are a few books (Ali's daughter, Rasheda Ali, actually has a wonderful book for kids titled I'll Hold Your Hand So You Won't Fall) but not enough. Most of them deal with grandparents, not mom and dad. And forget it if your kid has and aunt or uncle with YOPD! So that has been one of my many projects I've been working on this year. I've been writing a series of children's books dealing with the issue. There is one for each - mommy, daddy, aunt and uncle. I have not been able to work on it everyday because I've been sooooo busy with everything else, but I should have the entire series finished by the end of the year. WooHoo!!!!



Another project I've thrown myself into full throttle is planning and organizing a formal charity Christmas ball for 2009. It's just in the very beginning stages right now, and by that I mean I am currently getting all my ducks in a row and networking, getting together all the people who are willing to help pull this off and tell me just exactly what in the hell I'm doing!!!! A very nice lady named Melissa, who runs the new YOPD group Keith recently started attending, has experience with this sort of thing, so she will actually be my partner is this new venture, and together we will throw a party of the likes this town has never seen! Okay, so maybe it won't be quite that big, but it does look promising. Black tie, catered, lots of press coverage, all proceeds donated to the APDA. It will be a ton of work, but the result will be well worth it!

This Sunday we are all going to the annual "Young At Heart" Parkinson's Support Group Picnic. Keith and I will wear our matching Shaky/I'm With Shaky shirts, and because we are trying to generate as much buzz as possible about the Store, I've invited the local news to come and do a story. We'll see if they actually show up. Wish us luck on that!

I recently had one of the producers of a popular PD documentary show some interest in filming our family. Let's face it - we've got a lot going on! And with Project Baby (thanks for that term, Michelle!!) underway, we are looking forward to lots of exciting changes. It will be very fascinating to see how all of this will affect Keith and the disease, and in turn, it will be just as fascinating to see how Parkinson's affects us and what we have planned. But, I have not heard back from her in weeks, so I guess she wasn't all that interested. I'm thinking about doing it myself. There are some small production companies in the area that could do all the editing and whatnots, but I think Keith and I could do all the filming. Heck, our video camera stays loaded and ready to go anyway. So that will be a learning experience in its own right!

Well, gotta run - you know - in the name of Project Baby . . . . (wink!)

Don't Forget to Shop!

Just a quick heads up -

The holiday season is fast approaching, so don't forget to stock up on all your PD advocacy wear! I will be adding more fall and winter apparrel this week, as well as updating the site a bit.

And don't forget that ALL PROCEEDS FOR THE MONTHS OF OCTOBER, NOVEMBER AND DECEMBER GO TO THE AMERICAN PARKINSON'S DISEASE ASSOCIATION!!!

Long Time No Blog!

It's been too long! How I have missed blogging!!
Between getting Hailey ready for middle school this year, a teething toddler, a very sick little Pierre, a wedding and trying to paint and redecorate Hailey's room, I haven't had time to do much blogging. But almost everything has finally settle down some and I've caught up on most of my housework. Hailey's room should be finished by the end of the week.

Hoping to blog more this week! I have a ton of stuff to write about, so check back soon!!!!!

Toying With Emotions

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?

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?

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 . . . .

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!

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!

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.

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!

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.

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 . . . . . .

Waiting to hear back from . . .

Dr. Mark Cregon. I've tracked him down at the University of Singapore. I want to know what kind of studies are going on currently with breastmilk regading PD. Hope he responds soon.

Cure For PD Could Be Found In BREASTMILK

Michelle and I were talking recently about trying to get our guys to be more healthy. We started talking about vitamins and how Omega-3 (DHA) does wonders for many PWP, as it reportedly slows the progression of the disease. That discussion led to us joking about sneaking Keith a fruit smoothie made of my breastmilk. Funny thing is, it's not a joke.

Michelle did some more research and sent me two wonderful articles. The first article is really important to someone like me, who doesn't believe in embryonic stem cell research. According to the article, Dr. Mark Cregon, founder of the Lactation Biology Laboratory at the University of Western Australia in Perth, and member of the Society for Research in Human Milk and Lactation, discovered that breastmilk contains stem cells.

Dr. Cregon . . . . believes that breastmilk will be harvested in an effort to find a cure for Parkinson's Disease, diabetes and a host of other illnesses. [Though further research is needed, he] found that some of the cells in breastmilk have the ability to become multiple cell types.

Wow!!!! So not only does my breastmilk provide immunities and nourishment for my kids, it also has potential to cure my husband of Parkinson's Disease!

Michelle also sent me an article from Science News, dated January 5, 2008, vol. 173. no. 1 p. 13 -

Molecule from breastmilk can improve mental function in dementia

Given intravenously, a molecule found in breast milk can improve mental function in people with dementia and in victims of stroke and traumatic brain injury.

According the article, researchers at the University of Palermo in Italy tested the molecule, GPC, in 2, 044 stroke victims. GPC improved the neurological functioning by 27%, as well as improved their memory, attention and orientation.

GPC works by INCREASING THE NUMBER OF RECEPTORS ON BRAIN CELLS FOR NERVE GROWTH FACTORS, and CAN READILY CROSS THE BLOOD-BRAIN BARRIER.

Good stuff! All joking aside, I had decided I would sneak Keith some breastmilk in the form of a smoothie or milkshake, but then I got to thinking - Keith just isn't squeamish about breastmilk. So why hide it from him? I talked to him about it instead. I presented the facts, and based on our conversation and what we both know are the benefits of breastmilk, he's decided to give it a go. We haven't tried it yet - I'm currently trying to build up a good enough supply so Rielly-Anne can share with him, and still have some left over if I should get pregnant, but I'll keep ya posted. I'm very interested to see what happens.

Ride Against Parkinson's Disease

This Thursday Keith and I will be attending the Ride Against Parkinson's Disease at the Chickahominy YMCA near Richmond. Carsten Bosemann (you can find his site here) is riding across the country on his motorcycle to raise money and awarness for PD. He is heading to Washington D.C. after his stop at the YMCA. Motorcyclists are invited to join Carsten in his ride to D.C.

The Chickahominy YMCA in hosting an open house with all the donations going to the APDA and the MJ Fox Foundation. While there we will be able to participate in a PD exercise group, or try out the other cardio equipment, talk to others with YOPD and meet representatives from the Richmond Chapter APDA and YMCA. Keith and I are going to wear our "Shaky" and "I'm With Shaky" matching shirts and Rielly-Anne will have her "My Daddy Has Parkinson's" shirt. I can't wait! I'll post pics and how it all goes afterwards.

We're Back! And Other News

We are back from vacation and gradually, slowly and grudgingly easing our way back into the real world again. We had a great time at the beach. Keith took Hailey on a charter fishing boat for a half-day fishing trip. They didn't actually catch anything they could keep - a few little fish and Hailey caught a squid! But they had fun and that's what important. We also went to the water park, a go-cart speedway amusement park, got some ole' time photos done, and of course, we had fun on the beach. Rielly-Anne was sick for most of the trip, thanks to her "food allergy" thing, but she was still able to enjoy herself. So now we are all just as tired and worn out as we were before our vacation, only now it's because we had so much fun.

Hmm . . . .what else? . . . . . . Oh yeah!

Keith and I have decided that we are, in fact, going to have another baby. So we are officially trying again, though this time around we are taking the "it'll happen when it happens" approach, rather than the "charting, taking temps, actively and aggressively trying to get preggers" way we did it before. So it's a toss up as to when it will happen, especially since I am still nursing and pumping around the clock. Guess we'll see . . . . .

We'll Be Back, Promise!

Just wanted to let you all know that Keith and I will be back to blogging soon! Keith has been very busy with work and getting things down around the house for me. And now that school is out, I've got several more daycare kids, which really cuts into my afternoon free time that I normally spend blogging.

We are getting ready to go on vacation, but we will have a couple days of down time when we return, so I'm sure we will be blogging some then. I have soooo much to blog about! There will probably be about 15 new posts on here in a couple weeks. So please stick around - we'll be back soon!!!!

Mushy, Mushy, Mush

Now, I don't normally post stuff like this. I would like to think it's because I am a private person, but hell, just having this blog throws that theory out the window. Maybe it's because I'm just not that romantic. My idea of romance is watching Keith fold laundry. Ha Ha!!! Seriously, I just don't have a huge romance gene, so I don't normally post lovey-dovey stuff on here. But I came across a new blog recently and there were so many similarities between her (One Life) and I that I couldn't simply leave it alone. To quote One Life -

"I am desperate to build memories; desperate to eat all of our dessert first. There will be time enough for vegetables later, when time has run thin and this thing we're denying has finally caught up with us."

Yeah, I couldn't have said it better myself. This is EXACTLY how I feel about my life with Keith. Keith and I had another conversation last night regarding how he worries about everything and I seem to never worry about anything. He asked me why I never worry. I told that I do worry, much more than he knows. The difference between us is that I don't normally let my worries stress me out. He does. My line of thinking is more along the lines of - acknowledge the worst that can happen, accept that it can happen, plan for it happening, then live as if it WON'T happen. This is my general attitude towards life, but it is really about my life with Keith - our lives together with PD.

Yes, I am desperate to build memories. I am desperate to eat all our dessert first. I do not want to despair and throw my hands up in defeat. I do not want to live the rest of our lives together in "what if" mode. I do not want to skip dessert simply because it could eventually give me a tummy ache. In fact, I'm going to skip right over those veggies and head straight for the dessert buffet. It's just too sweet not to.

Like One Life, I too feel that "I am living my fairy tale." I don't know if it's in spite of PD, or because of PD. Probably a little of both. Keith and I do have a great love. We have one of those relationships that most people spend their entire lives trying to find. It both saddens and terrifies me to know that because of our age difference and PD, our relationship is on borrowed time. We are living on borrowed time. Because of that, I want to have as happy a life as possible for as long as possible. I want to build as many good memories as possible, because I will need those to draw strength from when things get bad for Keith. I have said on here before that Keith and I have a lot of living to do in a very short amount of time. And I would rather have a few good years - having babies, raising our family, seeking out new and exciting adventures, taking long vacations - knowing full well how fragile our time together is and how difficult it will be for us one day, than to have the rest of our life be mediocre at best because we are afraid of what could happen. I will not let PD paralyze our life.

Life is sweet, and our life together is very good. It is very refreshing, exciting and full of love. Even those dull, boring days of writing bills and folding laundry are exciting when Keith is around. He truly is the love of my life. After seven years together he can still make me weak in the knees. I still watch the clock impatiently waiting for him to come home each day. And I still get that light-headed, butterflies in my stomach feeling when he finally does walk through the door. If life truly is a dessert, then I am fortunate enough to have my cake and be able to eat it, too.

A Quick Note

I haven't had time to blog much lately. We've just recently returned from a little mini-vacation over Mother's Day. We went to the beach. It was cold and windy, but heck, a short, cold vacation is better than no vacation at all! I have also planned a huge weekend - we are having a huge "girls only" sleepover on Friday, then I'm throwing my sister a baby shower on Saturday, so I've been up to my neck with planning and preparations. I'm having a lot of fun, but I don't have time for much of anything else.

I do want to quickly add that Keith has been working out! Yay!!!!!
He is still not up to the point of working out daily, but he making the effort to do it at least a few times a week. It's a start, right? And a good one, I think. I'm certainly not going to complain, especially when he is so active with everything else.

I hate to say this because I know how it's going to sound, but I am actually more at peace when I see that Keith is exhausted and worn down - but ONLY because I know WHY he is that way. Of course, it's because of PD, but I know that when he gets to that point it's because he has been very physically active, which is a good thing. I don't want him to be exhausted, I don't want him to over-do it, but it does make me happy knowing that even with PD, he is still getting around and working.

Yesterday he worked really hard on his new Camaro and then mowing and weed-eating the yard. Normally that kind of activity would leave him trembling and in terrible need of a nap, but he actually seemed to be holding up very well! I don't know why - maybe it's the workout he's now doing weekly?

I'll be back to post more on the topic next week when things settle down a bit. (now off I go to stuff party favors!)

Proud Hands

We've just received in the mail our copy of Proud Hands! I read almost the entire book standing in my kitchen with a baby on my shoulder and another tugging on my jeans. ;)
What a great book! It is very inspiring to see so many wonderful PWP determined to fight and live their lives according to their own terms. But it's not just that - so many have worked to bring attention to this disease. So many have made it their mission to raise funds for research, and help educate the public. I have found new sites devoted to supporting others- USA PD PALS and through that, Daily Strength. I have seen how much is possible with PD, from the Young Onset patients to the elderly.

Some of my favorite passages:

When Parkinson's hit,
I couldn't just sit
Like a rusty old ship docked at port.
Cheryl Majeske

I do not question why I have PD. I accept it, move forward, and gain strength from it.
Kelly Maurer

I try to stay as active as I can, but some days my body won't allow it. That might be something I may never have control over again, but my attitude is another matter altogether. I have learned that having the right attitude, and a lot of faith, makes almost anything possible.
Lou DeCaro

I know that my hands are in God's hands.
Marilyn Ferch

Who knows what the future holds, but I am making the most of the present.
Lori McWilliams

I don't know how long this will last, or what the future holds for me, but I'm determined to cherish every second of my life, take time to appreciate the beauty of the morning, the shape of clouds, and embrace those I love.
Elena Tuero

A Family Divided

After writing my last post about my dad seeing Keith for the first time in full-force PD mode, it made me wonder what he really thinks about PD. I really wish I knew what my family thinks about when they think of Keith having PD, or if they even think about it at all. I know I tend to write more about what my own family thinks and feels as opposed to Keith's side of the family, but that is only because I am very well aware of their thoughts and feelings. Keith's brother is in far worse shape than Keith is, and hopefully will ever be, so they have all been dealing with this much longer and on a much deeper level than anyone on my side of the family. The Lewis family has had PD smack them right in the face. They have no choice but to sit up and pay attention. My side of the family is new to all of this. They have no clue what they are in for.

I know that there are several members of my clan who just don't get it. They do not see Keith everyday so they can't possibly see the changes that take place when he works too hard or is exhausted. It does not affect them in any way, so they simply don't think about it. To them, Keith having PD is just another one of those little facts - like the year he was born or the type of car he drives. Keith is 52 years old, drives a Chevy, has Parkinson's. Because they choose not to acknowledge it now while they still can, they will likely be the ones to deliberately ignore it and shuffle around uncomfortably, not knowing what to say or do when my disabled husband is wheeled into the room.

Then there are those who do acknowledge that Keith has PD, they just don't know much about it. These are the family members who, though they also don't see Keith and his symptoms on a daily basis, are much more aware of the changes in his body because they are looking for them. While they might not go out of their way to get as much information as possible, they never hesitate to ask us about it. They ask about Keith's health, they check on us after a dr. appointment, they are genuinely concerned about us. These are the family members that will likely not know what to do when my disabled husband is wheeled into the room, but they will try to do something - either make a joke about PD to lift his spirits or face it head-on by talking directly to Keith about the disease. This is the group I will likely as not be much more dependant upon if things get really bad. This is the group that will care enough to help.

So, which group do you fall into?

Did You Happen to Notice?

. . . . just how bad Keith looked yesterday?

For the first time, someone other than myself, Bryan and Hailey actually saw the way Keith looks when PD hits full force. My dad was here yesterday and was able to witness what Keith looks like after working in the yard all day. Most PWP know that if they attempt anything strenuous, they are pretty much done for. Keith had been doing a few things here and there around the yard - just little projects that I had given him. It wasn't anything too difficult, but enough to make the average person feel like they'd really accomplished something. It took a toll on Keith.

When my dad showed up, all of Keith's symptoms were exaggerated. He was stooped over more, he was very shaky, he was moving very slow, and his face was nearly frozen in a droopy, saggy expression. My dad never said anything but he had to notice. How could anyone not notice that? I'm going to ask him about it and see what he says. I'll have to post about it - it will be very interesting to see how my family reacts to this disease and Keith as it progresses . . . .

He Finally Found One!

Okay, so maybe in "Confessions of a PD Wife, 2" I was a little unfair about Keith being physically active. Afterall, he does work some 50 hours a week, and he is very active around the house and yard. He certainly doesn't sit around all day. It has been pointed out to me that for months he has been searching for a good, used exercise/weight machine. So I admit to being a bit unfair about what I previously posted.

The problem has been finding the right weight machine for the space we have available. We have no space available, so it would have to be really, really small, but still have all the functions and stuff on it that he needs. Well, last week he finally found one! YAY!!

It is small, but it will fit in the shop, (and on the porch if he needs to move it there temporarily to work on a vehicle) and it has everything he needs to work his legs and arms. He's really excited about using it!

(stay tuned for the post on whether or not he actually uses it!)

An Exercise In Strength

Keith has always been pretty strong. Even now, with PD, he is still stronger than most of his PD peers were/are at this point. He likes to prove to himself and others that he's still got it by arm wrestling and participating in several other macho-chest-pounding male games. But I noticed something last week . . . .

Keith and I had purchased some baby furniture for my sister. Since Keith had to leave for work, he unloaded it off his truck so that my dad could pick it up and deliver it to my sister's house. I noticed that Keith struggled a bit to unload the furniture from his truck. I don't know that it was an issue of strength alone - I think it was a combination of having become a bit weaker and struggling to get his left hand and arm to do what he wants it to do. So I helped him unload the stuff and off to work he went. Half and hour later my dad showed up ready to load his own truck with everything. At that point, I hadn't even thought twice about helping Keith - it's just something I do. I know he could have done it himself, but I love him and wanted to help, especially since I could see that he was struggling with it. So I asked my dad if he wanted my help, and of course, he said no. Then he quickly and effortlessly picked up both items and placed them in the bed of his truck. It dawned on me for the first time then just how different Keith is from other guys.

Now, I realize that most men don't want to be compared to their fathers-in-law, and it really could have been anyone. My dad just happened to be the available person with a truck that day. But it really hit home to me that Keith's strength is declining. He really does have to struggle more than everyone else when it comes to even the simplest things. It doesn't stop him, but it does slow him down. I really need to make sure that I am available to him if he needs me, but without compromising his dignity. Hope I can pull that off . . . .

Confessions of a PD Wife, Part 2

1. I'm really getting worried about Keith's memory, because it seems to be getting worse.

2. Sometimes I set Keith up with situations that require him to remember something just to see if he can actually remember it.

3. I'm beginning to feel that Keith is becoming more selfish with his free time, because he has PD.

4. I feel guilty for thinking Keith uses PD as an excuse to use his free time on his hobbies rather than with his family.

5. I feel guilty for being jealous of Keith's free time.

6. I feel stupid for blogging about how much improvement Keith has made regarding physical activity when he hasn't done one damn thing to improve it.

7. Sometimes I feel I'm the only one in this house who cares that Keith has PD.

8. I resent the fact that I'm the only one trying to get everyone else to eat healthy and exercise when I'm the healthiest one in our family.

9. I don't like knowing that one day I will be in charge of all the vehicles and the maintenance they require.

10. I worry about being in charge of the vehicles because I hate doing anything with a car and I know virtually nothing about them.

11. I don't want to have to learn to mow the grass with the riding mower.

12. I worry that someone will see me mowing incorrectly and think I'm an idiot who doesn't even know how to mow her own lawn.

13. I'm uncomfortable with the fact that we don't have long-term care insurance.

14. It really bothers me that Keith feels long-term care insurance is a waste of money.

15. Sometimes I think Keith puts too much effort into stupid crap like his race car and not enough effort into things that could help him feel better, like exercising or quitting the cigarettes.

We Are So Different!

Keith wants a new lawn mower. One of those fancy ones that has handles you push and pull instead of an actual steering wheel. I know they have a name, but I don't recall what it is, mainly because I don't care about stuff like that, so I don't make a point to remember.

He said he can get a small one for "around $65 a month."

"Around $65 a month" is a lot of money that could go towards a gym membership or martial arts instructions, or a personal trainer or a home gym . . . . . all things that would help with his stretching and exercises, which will help with the PD.

SIGH

Prayer Request

Please find it your hearts to pray for the Brewer family. They are our neighbors and friends, and their youngest son is Hailey's best friend. They lost their teenage son recently. He died suddenly and unexpectantly in his sleep Saturday night. The cause is currently unknown, though he did have a seizure disorder.

Please keep them in your prayers!

Thank you.

A Lesson in PD

The other day I was sitting here in front of the computer uploading new photos to our family website. Rielly-Anne was nursing, so I had to do everything with one hand - the left hand. As I am right-handed, this proved to be a bit challenging. I was not only using the mouse, but I was typing a few things here and there as well. After a couple minutes it dawned on me - this must be how Keith feels when he tries to type, or do anything at all with his left hand!

Every movement I made with my left hand, whether it was clicking the mouse or typing or even taking a sip of coffee, had to be slow, deliberate and directly planned out. I had to think about each action I wanted my hand, arm and fingers to do. I had to make a conscious effort to move them properly and place them where I wanted them to be, and to click or type exactly how I wanted them to. I decided to take it a step further and try to write my name with my left hand. Most of us have done that at some point, at least when we were kids. It is surprising just how difficult that is, especially when you make a point to observe the differences between the two.

After that, I decided to spend the rest of the day using that hand as much as possible. Every time I needed to do something like get a glass of water, use the phone, brush my teeth, I used my left hand. I was amazed at how fast my entire arm, from the shoulder to my fingers, grew tired. And I was exhausted from the effort and the mental concentration it took just to get my arm to cooperate the way I wanted.

I know I will never fully understand what it's like to have PD. Some PWP are affected just on one side of their body, others are affected throughout. There is a huge difference between that and my experiment with just one arm. But it gave me a very small glimpse into what life with PD is like, and because of that, I think I am much more understanding of Keith and what he is up against.

MDJunction

I found a new site! I think it was Dan's blog that I found MDJunction on (sorry, I can't remember!) They have a new PD support group. It's only been up and running for a few months, so it's currently kinda slow, but I'm hoping to generate a little more traffic on there.

Check it out!

MDJunction PD Support Group

Working Through "How Long"

Keith recently posted on Shaky's World about the question "how long?" He is constantly worried about how long he has until his symptoms worsen, until he can no longer work, until he is physically disabled. The list goes on and on. Honestly, it really frustrates me when he starts talking this way.

It really bothers me that he wants to know exactly when everything is going to go all to hell, IF it even does. I'm not sure why it bothers me so much - maybe because I can't give him the answer. I don't want to be able to give him the answer to that. I don't want to know the answer to that.

The older I get the more I become the exact opposite of the type of person I once was. Whereas I was once very pessimistic, I am now very optimistic. I was once grumpy and moody - now I am happy and cheerful. (okay, not ALL the time, but I try) And I am extremely hopeful. Hope is what drives me now. It's what keeps me happy, because it gives me the ability to believe in something more. Okay, I'm having a really bad day, but hopefully, tomorrow will be better. The washing machine just gave out, but hopefully, I can get a new one on sale. Keith is more shaky and tired than usual today, but hopefully, it's because he had a long day and not because his symptoms are getting worse.

HOPE n. v.
1. the feeling that what is wanted can be had or that events will turn out well.
2. a person or thing in which expectations are centered
3. something hoped for
4. to look forward to with desire and reasonable confidence.
5. to believe or trust

Because I have such a strong sense of hope, I have no desire to know just how long until anything happens. (well, I really do want to know how long until the laundry can do itself!) I don't need to know. I have hope that our lives will turn out well, PD and all. I have hope that our lives will be full of caring family and friends and love, cheesy as that may sound. I am excited to live the rest of my life, even knowing full well that it could be scary, tragic and sad. You see, it's the NOT knowing how long that gives me hope. It's NOT knowing how each day will begin and end that allows me to believe it will be a very good day.

I give myself a mental picture of the future - like a calender in my head, and each day is a blank canvas waiting to be sketched upon. I don't know what's going to fill up each one of those days, and that fills me with excitement. I can't wait to see how it will turn out! I can't wait to see what the outcome will be! I have so much hope that each one of those blank days will be just as good as today has been. I don't need to know how long until ____. All I need is HOPE. That is enough.

Mindless Rambles, Part 3

It's early in the morning, but the clock on this thing is off, so it never shows the proper time when I post. I was up until 1 a.m. messing around on the computer with Keith. Now it's 8 a.m. and I've been sitting her for about half and hour sipping away at my coffee and messing around on the computer some more.

Nothing like a good, hot, fresh cup of coffee!

I set up a Plaxo Pulse account this morning - thanks Darien!!! Every time I try to leave a comment on your blog I get the big, red X and the message that says "operation aborted!"
(????????) Now I can keep in touch with you better!

Hailey's not going to school today. I've got to schedule a doctors appointment for him. I figure I'd better do it this week while Alicia is out. I can take Rielly-Anne and the other two toddlers with me a lot easier than I can take all of them PLUS an infant. I'm really worried about what's wrong with him - tired ALL THE TIME. He's got really dark circles under his eyes and he's always complaining of headaches, especially when he stands up. He says he wakes up in the middle of the night and can't get back to sleep. So he's sleeping in this morning. Hopefully I can get him in to see the doctor this morning.

Alicia has surgery this morning. She's having an issue with a valve in her heart. It's supposed to be a basic, standard procedure and not at all like open heart surgery. We'll see how she does. I'm anxious for her parents to call me later to let me know how she's doing!

I Can't Believe I'm This Rich!

It all depends on where you've been . . .


Keith is a worry wart. He worries incessantly over every single thing. Me - not so much. I mean, yes, I worry about his health. I worry about PD and what it will do to him. I worry about all the things that go along with that - how it will affect the kids, do we have enough money and insurance, etc., etc. But I simply don't worry nearly as much as he does. My biggest stresses in my day to day life are more along the lines of worrying about the dishes and laundry piling up, worried that Hailey won't get his science project turned in on time, or that Rielly-Anne will plunge head-first off the sofa. I generally don't worry about the things I have no control over. There's just no point to it. No matter how bad it gets, things will always get better, and we have been blessed by God enough for me to know that the Lord will provide - we will be taken care of.

A few nights ago Keith was venting to me his worries about having PD and what it might mean for us financially in the future. He said, "What are we going to do if it gets really bad? Between just trying to pay for the cable and cell phones and the basics, we're barely scraping by!" Now, Keith says stuff like this all the time, and though I do understand what he's trying to say, and I know it IS a very serious subject, I can't help but laugh. It's just so funny to me that he really thinks we are "barely scraping by."

I said, "We are NOT barely scraping by. Believe me, I've been to barely scraping by, and honey, this ain't it! If we were barely scraping by, we wouldn't have internet, cable, two cell phones, four vehicles, a nice home on the lake, kids who couldn't want for a single thing, and the ability to go out to eat two or three times a week And we are only a year away from being completely debt free!"

"But honey," he said, "we're poor!"

Again, I laughed. "No, we're not!" We just looked at each other for a minute, then we both began laughing hysterically. We are definitely from opposite ends of the class structure!

It's not that Keith grew up rich. He just didn't grow up like I did. There are seven kids in my family. My mother was always a stay-at-home mom, and my dad was the one who earned the living. We certainly weren't destitute, but there wasn't a lot of money to spare. We were poor, but the kind of poor where you don't really know it until someone points it out to you. We had everything we could possibly want, and then some, but most of it was hand-me-downs. Our vehicles were usually used, our clothes came from goodwill. We had to wait until Christmas to get new toys and clothes. Going out to eat was a special treat, but even then, we went to McDonald's. Yes, we were poor, and looking back maybe you could say that we were "barely scraping by," especially if you compared it to how Keith and I live now.

Later, when I married and had Hailey, we really were scraping by. I stayed home with Hailey for a year, but his father only made about $200 per week. Yeah, that's right. Try raising a family on $800 a month. Yeah, we were PO', as Oprah would say. We were poor and we knew it. We had none of the little luxuries that most take for granted today. We lived in a tiny garage apartment, had one vehicle, no cable. We used food stamps briefly before I went back to work.

After our divorce I flipped back and forth between barely scraping by and rolling in the dough, depending on where I lived and worked. But I've never had as much money or as much stuff as I do now. To me, we are rich. I know we are not what most people would consider rich. All four of our vehicles are used with tons of miles on them, our house is tiny and needs fixing up. We shop at the Dollar Tree and clip coupons. We have to pinch and save to pay for our family vacation this year. But still, to ME, we are rich. I have more than I ever imagined I could possibly have.

Keith, on the other hand, is used to having way more. For most of his adult life he has worked in high level sales positions, traveling all over the world, making what I consider to be a TON of money. When I met him, he lived in a condo with an outdoor hot tub, owned a boat, a couple of jet skis, a Harley. He was used to vacationing in the Bahamas and Cancun. So, though I've "stepped up" in the world, he feels that financially, he's "stepped down." Sometimes when I go grocery shopping, he'll tell me to try and keep it down because we only have $--- amount of money in the bank. And I think, "what the hell is he talking about?? That's a lot of money, and he gets paid again in two days!" Not that I freely spend a ton of money - my upbringing has taught me to be very thrifty, but come on! (giggle, giggle)

Yes, it's all on where we've been . . .

For ME, The Worst is Over

This is a fairly sensitive post, so I need to be very careful how I word it. There are quite a few different people who could easily get offended or hurt by what I am about to post, so if you are one of those individuals, please know that I am only speaking from my heart.

Last week while Hailey was still with his father for Easter break, Keith and I met with Carolyn, Keith's ex-wife, so we could all have dinner together. The conversation turned to kids and my admittance that I had taken a pregnancy test earlier that day. (I am not pregnant, turns out I was just getting sick) Apparently Carolyn didn't know, as most everyone else does, that Keith and I are seriously considering having another baby. And by "considering" I mean that the only form of birth control we are using is a breastfeeding, co-sleeping toddler. Carolyn looked at me with a mixture of horror and grave concern and asked, "Why would you want to do that to yourself after everything you've got piled on you already?" (or something very similar to that) My response was laughing, with "This is easy! After everything I've been through this is the high-life!" I thought I should explain . . . .

I don't want to go into detail and dredge up the past. There's no point in doing that. I will simply say that if I could somehow wave a magic wand and erase my entire life up until seven years ago, I would. Not because that is when I met and started dating Keith, but because that was when I took control of my own life for the first time. I am not saying that the first twenty three years of my life were all bad - there were plenty of good, happy times. But I would gladly give up all those good memories if it meant erasing the bad ones. I know that's a bold statement to make, but for me, it's true. I have been through a lot. I have hit my rock bottom. I have had to work very hard for a very long time to get to where I am today.

I do not want to take away from the seriousness of my husband having PD. I am not naive enough to think it will be easy for us. I know it will be extremely difficult. There are some that would say I have no idea what I am getting into. Some would be rather offended at my (perceived) blase attitude about PD. Still, others would attribute my feelings to being young and inexperienced. They may all be correct, to some degree. However, to put it in a nutshell - I can not believe that the worst part of my life is yet to come.

I can not accept the possibility that what I have been through "in my prior life" was not the worst I have to look forward to. I can not even begin to imagine anything worse than that. For the sake of my own sanity, I have to believe that the worst is over. In my mind, there could be nothing worse than what I have already been through, so it stands to reason that a future with PD is not as grim a life as many would believe it to be. There are few people who can say "I am only 30 years old, and I know that the worst part of my life is over." I know that no matter how bad it gets, it will never be that bad. It has allowed me to live my life knowing that I can handle anything life has to offer. I am strong enough to get through anything and everything. I have been given the ability to see the silver lining of every storm cloud. And I know what matters most in life. I know it's much more about the little things - all those little things most of us take for granted every day.

Having a baby with a man in his 50's who has recently been diagnosed with PD is not what the average person would consider a good idea. But why not? I am in the prime of my life. I am happier than I have ever been. I've got a great family, great kids, a wonderful husband. I feel so blessed in so many ways, and I consider it an honor to be the one chosen by God (and Keith) to stand by Keith and help him live with this degenerative illness, babies and all.

It's Easier for Keith Now

I finally rearranged the bedroom so Keith could get in and out of bed more easily. Well, in reality I only moved two things, but it does help him. I took the old, dilapidated bedside table away and put in its place a very sturdy wooden storage box. Keith used to keep it in the closet to store all his old shop shirts. Now we use it as a nightstand and an anchor for Keith. He can brace himself on it to slowly ease into bed, pull himself up on it, and it's large enough to sit on when he's getting dressed. It has made a huge difference in how quickly he's able to get up and down!

I've Been Away

Okay, not really. I haven't actually gone anywhere. I've just been so busy and so sick that I haven't had much time to blog recently. And poor Keith has been so busy with work and a long list of household projects that he's barely had time to blog either.

We've had a new addition to our daycare family - little Alicia. Alicia has been with us for almost a month now. She is four months old is a little ball of energy and smiles. We just love having her here! Things are finally beginning to settle down, now that we've all had time to adjust to a new little one being in the home again.

Rielly-Anne and I were terribly sick over Easter, and especially the following week. We stayed in bed all day. Rielly-Anne did nothing but sleep and watch her movies and nurse. Thank God for nursing, because that was the only thing that kept her hydrated and fed! Hailey spent spring break with his dad, so thankfully he missed out on all the yucky stuff. And Keith somehow was spared as well.

So we are all mended (mostly) and relaxed and getting back into the swing of things again, finally!

Why Nestle?

I have a long standing hostility towards the Nestle Company for their blatant violations of the World Health Organization's "Code." I don't buy Nestle products and to the best of my knowledge I don't support/use/visit any Nestle Company/Nestle Foundation facilities or products. But it seems I now have one more PD related issue to be conflicted about.

The Nestle Foundation, which was established in 1966 by a huge donation from the Nestle Company, is a big supporter of Parkinson's research, and has given thousands of dollars in grants to various PD related causes, such as funding to find a cure.

So as much as I hate Nestle and will continue to boycott them, I've gotta say they've done some remarkable things for PWP. I can't deny the fact that they played a huge role (monetarily) in the breakthrough finding of the cause of Parkinson's. Still, the conflicted selfish part of me wonders why they can't just stick to candy and (gasp!) formula.

So Now We Know

From the Northwest Parkinson's Foundation:

Parkinson's Cause Identified
advance - Researchers at the Saint Louis University School of Medicine and Washington University in St. Louis, MO have discovered the key brain chemical that causes Parkinson's disease - a breakthrough finding that could pave the way for new, far more effective therapies to treat one of the most common and debilitating neurological disorders (Acta Neuropathologica, February 2008).

Currently, the main approach for treating Parkinson's disease, which afflicts more than 1.5 million Americans, is to replace dopamine that's lost when the cells that produce it die off and cause the disorder. With this new research, scientists can better work toward 'neuroprotective' therapies - those that actually block dopamine cells from dying off in the first place.

"We believe this work represents a very significant breakthrough in understanding the complicated chemical process that results in Parkinson's disease," said William J. Burke, MD, PhD, professor of neurology at the Saint Louis University School of Medicine and the lead author of the study.

"For the first time, we've identified the chemical that triggers the events in the brain that cause this disorder," Dr. Burke stated. "We believe these findings can be used to develop therapies that can actually stop or slow this process.

"Parkinson's disease occurs when some nerve cells in a part of the brain called the substantia nigra die or become impaired. Normally, these cells produce dopamine - a vital chemical that allows smooth, coordinated function of the body's muscles and movements.

When about 80 percent of these dopamine-producing cells die or are damaged, the symptoms of Parkinson's disease begin to appear. These include tremors and shaking, slowness of movement, rigidity and stiffness, and difficulty with balance.

Scientists have long known that a key protein called alpha-synuclein plays a role in the development of Parkinson's disease. Alpha-synuclein is found throughout the brain - but in some people, the protein clumps together. This causes the death of the dopamine-producing cells, which in turn causes Parkinson's to develop.

The researchers discovered that dopamine itself actually plays a role in destroying the cells that produce it.

In the process that leads to Parkinson's disease, dopamine is converted into a highly toxic chemical called DOPAL. Using test-tube, cell-culture and animal models, the researchers found that it is DOPAL that causes alpha-synuclein protein in the brain to clump together, which in turn triggers the death of dopamine-producing cells and leads to Parkinson's.

"This is very exciting," Dr. Burke said. "This is the first time that anyone has ever established that it is a naturally occurring byproduct of dopamine that causes alpha-synuclein to aggregate, or clump together. It's actually DOPAL that kicks this whole process off and results in Parkinson's disease."

The research was supported by grants from the Missouri ADRDA Program, the Nestle Foundation, the St. Louis Veterans Administration Medical Center, the National Institutes of Health, the American Federation on Aging Research, the Alan A. and Edith L. Wolff Charitable Trust and the Blue Gator Foundation.

Martial Arts and PD

Keith recently posted on his blog about new developments in boxing as a way to treat the symptoms of PD. We wondered if martial arts would have the same effect. I've done a bit of research, and as I expected martial arts is wonderful for PWP. Specifically, T'AI CHI seems to be the style that stands out as being most effective. It really helps the body relax and loosen up. Jerry Wild has some great information on his site as well as a T'AI CHI workout dvd you can order.

PARKINSON'S EXERCISES FOR PATIENTS AND CAREGIVERS