Go to I'm Still Standing; My Walk with Parkinson's
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The Other Side of the Coin
I was so touched by your blogs. It kinda sounds like you have dyskinesia a side effect of the sinemet. My husband has Parkinson. At first he was diagnosed with dementia until at one Dr. visit there was a poster about Parkinsons on the wall. When the Dr. came in, I said this is Richard. The Dr. of course chided me for diagnosing again.(I'm a nurse but my specialty is OB) He said he would humor me and give Richard Sinemet and if it helped he had Parkinsons and if it didn't it wouldn't hurt him. Within 24 hours his tremor was gone. He was 74 when he was diagnosed but I have since found out that he hid the tremor for a long time before he told me about it. He falls into the subset of right sided tremors so he doesn't have all the symptoms. He does have body/brain disconnects when he has any physical insult and then will progress to peumonia. He has always exhibited punding since we met 15 years ago. He is on 1 and 1/2 of sinemet 5x/day and Meripax .5mg twice a day. Any increase makes his symptoms worse.
I have fibromyalgia and CFS and when he was put on Meripax last year, I tried it because research has shown fibro is caused by a decrease in dopamine. It worked wonders for 8 weeks. no pain, energy, make plans and not worry if they could be kept. Then my cardiologist talked me into taking Niaspan for cholesterol but didn't tell me it could cause severe muscular skeleton pain. I'm still recovering.
Richard now has Alzheimer's and caring for him is my full time job 24/7 He is now 80 and has an abdominal aneurysm, prostate cancer, and congestive heart failure. We decided a couple of years ago for quality of life over quantity at this point. We have hospice coming in now and I have a care giver assist for 4 hours a day, 5 days a week to help with housework, cooking and laundry. I've been up for nearly 3 weeks so tomorrow He is going to a nursing home for a 5 day respite stay so I can rest and sleep. He doesn't know me sometimes anyway now and he doesn't remember where we live somedays. I promised him I would not put him in a nursing home and I plan on keeping that promise as long as I can get periods of rest from time to time. I have written a story called Am I Dying Today that describes our routine.
I went to school with a girl who now has early onset Parkinsons. Her name is Peggy Willocks and has a website called grassroots.com. She was a school principal. She does a lot of research and posts it. She communicated with Mort Kandracke's wife before she died. There was a movie made about his wife and early onset Parkinsons
I wish you well and may you and your family be surrounded by the Light of Love and Healing skye
posted by
skye08
on July 17, 2008 at 2:13 PM
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Taps
I don't read my favorite blogs nearly often enough (and that includes YOURS, too, my dear.) Thank you for your most gracious comment! The pain isn't nearly as bad as it used to be. I just try not to give in to it and work around it with handy tools like the nabber grabber, my walker (with wheels and brakes and a seat) or whatever it takes. Everything in Parkinson's has alternatives. Now that doesn't apply to singing, I don't think. Someday I DO believe I'll be taken home to where there is no more pain, no more heartbreak, only joy and wisdom and many many kindred spirits!
Cee
posted by
LadyCeeMarie
on July 10, 2008 at 8:50 AM
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LadyCeeMarie, I don't get over here to read you nearly often enough. You are such a writer. I have learned so much from you about many things. I'm glad you have a nabber-grabber. Wonderful things they are. When my shoulder was bothering me and I could not move my arm up or stretch it out, son came up with one for me. I was amazed at how easy they are to use and how effective they are. I'm so sorry about all your pain. I wish I could wish it away for you.
posted by
TAPS.
on July 7, 2008 at 4:03 PM
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posted by
HollyBird
on July 1, 2008 at 8:58 AM
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Cee, you give me strength. I fight with some disabilities myself. I don't have near the drive to overcome like you! I am so proud of Jay. It was so cool for him to get the grabber so you won't have to feel wretched pain. You two are one of my favorite couples. Blessings and have a grand day. Keep the GRABBER handy! lol sam
posted by
sam444
on June 30, 2008 at 1:04 PM
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oh Dear Vogue,
It isn't for the faint hearted. Most of us have a sense of humor about it. Older people seem more devastated with it because it takes them down so fast and it's now how they planned on spending their retirement. We young pups who have had it 25 years, it different. We will have it longer and usually takes a long time to degenerate in one so young to it's managed differently because for one thing. There is a big difference in how the two groups react to the same medications. You do what ya gotta do, that is fer sure.
CEE
posted by
LadyCeeMarie
on June 30, 2008 at 2:05 AM
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You are so brave. One read of your posts and what I consıder a "problem" just vanıshes ınto thın air.
posted by
vogue
on June 29, 2008 at 11:40 PM
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