Next time I see my neuro (June), I'm going to ask him about Sinemet...,thank you! I worked an additional three years (as a social worker) after my ataxian diagnosis. I retired nine years ago (after working a total of 28 years).
I asked my neurologist to try levadopa to see if it would help any of my symptoms and he refused saying levadopa is for parkinsons disease and I did not have parkinsons.
My neurologist said that it would work on ataxia, as they are similar in symtoms and are both caused in the cerebellum...Everyone is different, so I'm not claiming that all of my treatment would work well for someone else...but it doesn't hurt to ask. My Mom was told there was no treatment for her- in 1980 they hadn't discovered ataxias yet. She read an article stating that sinemet seemed to be helping restless legs- 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!!
gelu65 said:
I asked my neurologist to try levadopa to see if it would help any of my symptoms and he refused saying levadopa is for parkinsons disease and I did not have parkinsons.
OK., so some have tried Parkinson relief meds. with "some" relief, but other neuros won't permit it. So what are we to do? Are there any med. journals reporting about this? Remember, Viagra ORIGINALLY had nothing to do with/or for E.D. Just a fortunate observation. Maybe these rxs. might have an additional use not yet cleared. Let's keep reporting this and post your results. "just my 2cents-----Slky
Geez I did not mean to start such an emotional conversation about meds. 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 myself.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 drugs because they don’t have Parkinson’s that is a big mistake. and I apologize for causing such confusion but I wouldn’t want anyone to miss out on the opportunity that I have had
Sounds like we should ask our neurologist about this medication.
the movement disorder clinic that I go to considers the treatment routine. I also take gabapentin and azilect, both of which helped me in more ways…
For those of you following this discussion, I have posted a blog about my experience...
I hope this helps all that read it! Keep your chin up Carlous! Life ia still worth living! I wish you the best
Wow! Sinemet "took care" of your balance issues. This is indeed extraordinary, because lack of balance is my MAIN issue. And its a life-changer.
Sharon#3sca said:
Geez I did not mean to start such an emotional conversation about meds. 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 myself.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 drugs because they don't have Parkinson's that is a big mistake. and I apologize for causing such confusion but I wouldn't want anyone to miss out on the opportunity that I have had
Hi. About the shower; you don't mention it, but have you tried putting a shower chair in there? I did and it is a great help.----Slky
Cully said:
I was diagnosed with SCA almost 3 years ago. My Neurologist is a Parkinson's Specialist who has been a life saver. Although there is no cure, the PT that I receive is specific to my issues (balance, walking with a gait, stiffness). My husband and I had already talked with a contractor about "handicapping" one of our bathrooms because I was so unbalanced in the shower with only one small bar installed. The therapist said 80% of balance is based on your sight. I now do a series of balance exercises with my eyes closed (standing in place, within reach of a wall or counter). I replaced our shower curtain with a clear one which lets in more light and I put a washcloth on the floor of the shower, to stand on, that provides a "center of gravity" to ground me. These little changes have given me so much confidence that, even though there is no pill or operation that is going to make me better, I feel almost normal and safer living with Ataxia!
Dear Sharon, I, for one, am so glad you mentioned Sinernet, as I'm definitely going top talk to my neuro about it. Sounds like it may be worth a try, if he's willing!!! ;o)
I can only say it worked well for me. It's definitely worth a try! Fingers crossed!
rose said:
Dear Sharon, I, for one, am so glad you mentioned Sinernet, as I'm definitely going top talk to my neuro about it. Sounds like it may be worth a try, if he's willing!!! ;o)
I agree with everthing you said here. I just want to add what I have experienced. I posted a blog, if you want to read it. We are here to help each other :-)
Kay said:
Ataxia is incurable, progresses at whatever rate it wants and has whatever symptoms it wants to give you. All around just frustrating. We are here for support, but ataxia is not going to go away and it might improve with PT, OT and exercise.
The PT's you've gone to, do they specialize in neuro conditions or orthopedic. I would make sure it is neuro. They have definitely helped me with walking, how I should stand and move (balance myself). I also go to occupational therapy and they have helped with my hands and eyes.
Dear Sharon#3sca, How do I get to your blog? Thank you..., ;o)