August 30, 2010

I'm Going There: Young-Onset Parkinson's Disease

I started this blog in January, with the goal of writing about my life, which has a lot of good and some bad. While I have written extensively about my daughter and her medical issues, my son and parenting challenges I face, training for my half marathons and triathlon, cooking, and a host of various other topics, I have yet to write about my husband. And this is a big one.

You see, my husband has Young-Onset Parkinson's Disease (YOPD, or PD). He was officially diagnosed a few months before A was born, at the age of 35, although he was having symptoms before that.

I am not sure why I haven't written about J having PD. It's probably due to the fact that I hate it, it upsets me to no end, and I like to pretend it isn't happening to him. To us. To write about it is like opening a can of worms for me. But I think that now, eight months after starting this blog, I am ready. I will start slowly with this post....I will write about how he came to be diagnosed with a disease that usually hits people in old age.

It all started (for all intents and purposes) in 2004. I was pregnant with D, our firstborn. I went on the computer one day to get online, and was about to google something when I noticed that J had just done a search for "shaking finger" or something like that. I thought that was an odd thing to google, so I asked him what was up. He told me that his finger had been shaking recently, and he didn't know why. I urged him to go to his doctor to get it checked out. Of course, being a typical guy, J didn't go right then, and wanted to wait until his scheduled physical in the fall. I kept telling him to get it checked out sooner, but he didn't listen to me. (Note: I am not making judgements. It took me years to finally get my headaches checked out by a doctor; now I am diagnosed with migraines. I get the not-wanting-to-know thing).

Anyhow, in the fall of that year, J finally went for his physical. He came home in a good mood, saying that his doctor told him that the tremor in his finger was due to stress and was no big deal. I flipped out; I knew it wasn't stress-related. I am (in my past life) a Marriage and Family Therapist, and I know the physical symptoms of stress and anxiety. People may get a raised heartrate, sweaty palms, and decreased appetite, but a shaking finger is not a stress symptom. I urged him to go to a neurologist. He didn't want to go; he trusted his primary physician. Finally I told him that if he didn't go, I was going to call his mother and tell her what was going on. This scared him into action--he knew his mother would freak out!--and he went back to his primary care physician to get a referral for a neurologist.

Finally J saw the neurologist. As I had suspected, the shaking finger WASN'T stress related. The doctor said it could be caused by many things: Parkinson's Disease, a stroke, a brain tumor, or other diseases. I remember the next morning getting in the shower. J had already left for work, and our newborn, D, was in his bouncy seat next to the shower stall. I was freaking out, thinking about my husband possibly having a brain tumor, and here we were a young married couple with a newborn son. I sobbed and sobbed. I prayed that day for it to be PD, because the idea of some of the other possible causes were too frightening to imagine.

J soon began a series of tests to find out the cause of the tremor. Blood work, urine samples, MRIs...you name it, he had it. The thing with PD is that there is no test for it. Unlike cancer, you can't take a biopsy to diagnose it. Unlike diabetes, you can't take a blood sample. With PD you have to rule everything else out, and what you're left with is Parkinson's. A year or so later, his neurologist was convinced that he had PD. Our daughter, A, was born in June of that year, and if you're a faithful reader of this blog you know what a roller coaster we've been on with HER!

Since then the tremor in his finger has gotten worse. His whole right arm shakes now, and he is just starting to feel a bit of tremor in his left hand. His speech and gait are affected a bit. He is on lots of medications, which seem to help a bit.

I'm sure at some other point I will write more about this...my anger, my concerns, my fear....but I feel better for getting this written down now. I am hopeful that there will be a cure one day; I just hope it's in time to help my wonderful husband.

17 comments:

  1. I would feel the same way about any diagnosis of my husband. I congratulate you on a clear expression of what must be hugely emotional for you. Barbara

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  2. It's so good you're opening up about this. I hope you'll be flooded with support; with the experience, strength, and hope of others'. Great, honest post!

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  3. You have been through so much with the PD and with A. But you have such a loving family, and with that, you can get through anything.

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  4. I am proud of you for "going there". I know you and J can get through anything, as you already have, together. You are both remarkable people.

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  5. I totally understand not wanting to know!!

    Also, I am proud of you for opening yourself up enough to write about this. That means you have made progress in dealing with your emotions about the PD.

    I also hope a cure comes fast enough to help your husband.

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  6. Thank you for being so strong. You are the most amazing wife and mom.

    -J

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  7. Thank you for sharing about your husband's Parkinson's disease. I understand, at least a little, as I am dealing with this challenge myself. While denial is sometimes a necessity to deal with the day, disclosure provides the opportunity to make decisions about how you and he will fight this sometimes formidable foe. PD can be a frightening thing, but once shared with others who have to some extent gone ahead it can be a lighter burden. Since being diagnosed almost 5 years ago, I have been on a learning curve. For the past year I have decided to share that process, the journey, on my blog, which you may wish to check out. You can find it at www.positivelyparkinsons.com. Like you, I have found blogging cathartic as well as a creative outlet. But in addition, I have found that by sharing my experience I can actually help others in similar circumstances.

    Keep up sharing the journey. We are not alone. Your story can provide strength to others.

    Bob

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  8. well, it's really a long journey but there are medicines that will help the chronic pain is temporary, there are places where you can watch as findrxonline.com give you very good information on medicines like vicodin, hydrocodone, lortab, among others that are exclusively chronic pain.

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  9. I am glad you wrote about this. It's a difficult subject and an even more difficult reality...but you are and your family are so strong.

    Love,
    Rachel

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  10. This from twitter:
    RT @mocost Nature Outlook supplement on Parkinson's Disease, freely available for the next 3 months http://j.mp/9EbFTq

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  11. I cannot even imagine how much you cried. My heart goes out to you. I can totally relate to this post. I don't talk about (ever, if at all) but Huntington's Disease runs in my family on my dad's side. I watched two of my aunts die from that. It was really, really hard. And as a kid you're scared and don't know what it all means. Luckily my Dad never developed it and he's in the clear.

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  12. Dear Grateful Mama. I'm grateful to read your blog! I've just started my own for exactly the same reasons. Please let me know if you'd like to see it ( I don't want to use your blog to advertise mine! ). I've found it incredibly therapeutic to remove the thoughts swirling around my head and get them out onto a blog where people have been supportive and wise and kind. My husband was diagnosed late Spring/summer and it's a long journey to come to terms with it, just as much as it is for the person who's been diagnosed. You sound very brave, as much as I'm sure you don't always feel it. I'm @mrsparkinsons and can be found on Twitter :) Good luck and very best wishes

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  13. Dear gratefulmama,
    there is a lot of help and support out there. The Young Parkinson's Network part of Parkinson's UK, has a brilliant yearly conference open for younger people to get to for a weekend. it can be incredibly daunting, but also very rewarding. This is the first time i've seen your blog, through the parkinson's connection as I'm a PD researcher and always looking for a patients perspective on the disease, and a carers too. You sound like an amazing person, with an amazing family so you will find the support. There are new clinical trials and new treatment approaches so make sure you keep up to date with them. One piece of valuable info is that deep brain stimulation is being trialed in early stage younger patients and really might be an option as symptoms progress. My heart goes out to you, and hopefully you writings, family and running will keep you going!

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  14. Thank you for your blog! My spouse is currently in the "rule out" stage due to a progressive tremor. I strongly suspect PD. I noticed there is much on the Internet for patients but little for spouses. I appreciated reading your experience.

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  15. Was wondering if you would be interested in reading Allison Smith Conway's I'm Not Contagious about her experience with PD and surviving cancer...

    Here is a link to her book for your review...http://parkinsonsinbalance.net/Purchase-Books.html

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  16. Thank you for your blog post! My husband and I have been on a good stretch of illness and what now is YOPD. We have a 2 1/2 year-old boy who is full of energy! Just by reading your posts, I see you have so much on your plate! I understand how it is just life and we keep going. That said, I really would like to know what you do to cope. It can be so overwhelming and frustrating. We are young as well, we are 26 and have been married for almost 4 years. With dating and being engaged we are going on 9 years together and I feel that sometimes because I know so much of him it is even harder because I feel robbed. I would love to know of any strategies that you have to cope. Thank you for your time and consideration.

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    1. Wow, 26 is so young! For me, one thing I do to cope is work out....a lot! It's great stress reliever for me. It's hard having your husband have it, and I STILL go through angry phases, and sad phases and bitter phases, and acceptance phases. Please feel free to email me at sugarmagnolia70@gmail if you want to talk further about it. I know it's hard to find other people who can relate to having a spouse with YOPD.

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