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Ataxia Support Network

Something that could help some of you


#1

I didn’t know that there so many that aren’t being offered the medication that has helped me. …

There are medications that may help you with your ataxia symptoms! I have been on them since 2003. They were a godsend for me. I was able to continue working and sinemet took care of my balance issues quite well. Oh I knew I wasn't perfect but it was a whole lot better than not having the meds. I guess I have been naive to think that everyone else was offered the same treatment as me. I understand each of us is an individual situation and what works for one might not work as well for another. But if a patient is being denied meds because they don't have Parkinson's, that is a big mistake.

My Mom was told there was no treatment for her- in 1980 they hadn't discovered and identified ataxias yet. Her diagnosis: a “spinocerebellar degeneration”, cause unknown. She read an article stating that Sinemet (carbo/levodopa) , known as the miracle drug for Parkinson's, seemed to be helping restless legs as well- one of her symptoms. Her doctor was willing to try it, and then she could get up from her chair so much better! She was THRILLED with the improvement!! Are we all familiar with the multiple attempts to stand up from a seated position?!

I have been fortunate in tolerating meds without side effects. Therapy may be helpful, but I was able to continue working for 12 years because of sinemet, gabapentin and also azilect. I took 1 tablet sinemet twice a day at first and was maintaining a pretty normal life. Now, 12 years later, I take 1 and a half every 3 hours, but I can still walk around home without a cane most of the time. Gabapentin helped with neuropathy (painful twitch in my leg). Azilect kept the annoying tremors at bay for a long time. I wanted quality of life, as much as possible, and for as long as possible! Now the increased sinemet still calms the tremors most of the time.

It may be helpful to some of you to learn more about this medication and discuss it with your doctor. It is routine treatment for ataxia at the clinic for MOVEMENT DISORDERS where I go. I didn't know how lucky I was to get referred there. Like I said, each case is different, but it worked well for me.


#2

Thank you, Sharon! I'm going to shown your blog to my neurologist, as my next appointment is in June. I'm especially iterested in

I found it, thank you, Sharon! I'm going to show your blog to my neurologist, as my next appointment is in June. I'm especially interested in Sinemet, as my balance is REALLY compromised! I'd LOVE to find something to help that! I don't have any constant pain, and I have a bit of intention tremor in my hands/fingers, but it's really not a problem. Balance is my worst issue! So glad all these drugs help you function better, and that you don't have any side-effects!!! Hugs, Rose ;o)


#3

You are verywelcome. The balance is one of the biggest issues for many of us with an ataxia. I pray that it can help all who try it. You are taking the first step! I hope your docor is as open to suggestions as my mother's doc was. HUGS!


#4

Thanks for sharing..


#5

I'm hoping my sharing will help some others get some relief from their symptoms :-)


#6

I googled Sinemet and Ataxia. Then followed the link to the National Ataxia Foundation.

It gives a list of medications helpful to the symptoms of Ataxia.

Sinemet is on the list.


#7

Thank you Beryl…verification! :slight_smile:


#8

Hello again,

I have been on Carbidopa/Levodopa for seven weeks. in two weeks it will be full strength at one half pills three times per day.. A friend's husband loves it. He takes it for Parkinson's. My doctor was willing to have been try it.

I am not sure if it's helping me or not. It Imay be delaying the inevitable .

. What I wanted to ask you. was How long it took to take affect ?


#9

Michelle, It was a long time ago, so I don’t remember really. it took maybe a month to know for sure it was helping me. that’s just a guess. and for my mom’s situation that was a very long time ago, but I think she may have only been on it a week and she was so much different than she had been for some time. And yes it does only delay the inevitable, but that’s the whole point: a better quality of life for as long as possible! At least that’s my take on it :slight_smile:


#10

Thank you, Sharon! I am going to ask my neurologist if he will give me a trial prescription of Sinemet.


#11

Book Lover,
Please just keep in mind that it doesn’t work for everyone. It depends on your symptoms and other factors…


Our stories are important. Will you share yours?
#12

Thank you so much for sharing, I’m going to ask my doctor


#13

Thanks for the information