spinocerebellar ataxia

[babygizzy223]

I do have this diagnosis, it runs in our family...I am 47 and am trying to remain as active as possible, per my neurologist's orders. There is no cure and my balance and coordination are affected.  This seems to be especially noticeable when I am tired (I swing shifts as a nurse at a hospital from day to nites in the same week)..just looking for suggestions to slow the progression of this disease..any ideas??

[TheLightSeeker]

Hey babygizzy223.

There's an interesting treatment for spinocerebellar ataxia in Japan. You can read it at: http://www.ashg.org/2008meeting/abstracts/fulltext/f20363.htm

I have worked with lessening the affects of "disturbed" circadian rhythms,
using hypnotherapy. Jet lag, swing shifts, sleep deprivation and so on. It works well.
You should look into it. Also helps with general symptom reduction. 3-5 sessions
should do it. One will not be enough in most cases. Also occasional booster sessions
may be needed a couple times a year after the initial treatment.
Blessings to all.
see you in September-  I'm taking a "Total" holiday!
Nikodicreta  

[babygizzy223]

Today I took all the paperwork required from the VA both to my primary doctor and neurologist in order to get "necessary accomodations"..it does suck to have a boss who is a nurse and couldnt be less compassionate and understanding than most rocks...I did file a grievance against her so maybe this type of treatment by her both to myself and other coworkers will stop...my neurologist seems to think right now I have a slower progression of the disease and although the ending may be the same as the rest of my family, I hope by keeping as active as possible I can be independent for several more years..thanks again for all the support...Tammy

[patientnurse]

I'm with Sarah on this one-there has to be some kind of ADA law being broken!! I would contact the labor board in your state and let them know the issue. Sometimes all the "boss" needs to hear is a "possible investigation" to set them straight.

I would hate to think that as my symptoms get worse I would not have protection from the Americans with Disabilities Act. Especially as a nurse, coordination plays a big part. I'm thinking of telling my neuro that they've got to figure out SOMETHING soon here because it's messing with my livelihood, not to mention I have no other skills-lol (I've tried but failed miserably), so without nursing I can't provide. Hmmm, maybe we should all use that line-see how far it gets us!

Hope you are feeling a lil bit better,
Chanda

[Sidesteps]

I want to welcome you to the forum as well. I am sorry to hear about your dx and it being hereditary. I have a hereditary blood disease, had a splenectomy and that has nearly made me symptom free.  My father and sister have it as well. My dad less severe. My sister about the same and I've met people with with more severe cases.  

Are there various degrees that a person can have symptoms. I mean, is it possible that your Mom may have a more serious form of the disease versus your having milder ones?  That is the case with my disease. I hope that is the case and there isn't a set "path." I'd need my hope.

Have you seen a specialist in this? I saw a specialist and they made recommendations in making lifestyle changes.

We are here to listen and support. (hugs)

[sarahw244]

Thanks for sharing a little bit more.  That s*u*c*k*s about this being hereditary.  It must be really hard to see your mother going through the same things...

I can't believe that your boss is not a little more understanding, especially with two doctors notes.  Are there any kind of employment laws being broken, like not making modifications for a disability?  

I just graduated in May with my LPN degree and have one more year until I have my associates in nursing, so I can understand your frustrations with your job, not only the problems with the shifts, but also the physical nature of the job itself.  You have to be at your best, even when you're at your worst, so you can treat others who are at their worst!

As far as the coordination/balance issues go, I am not really sure what to say.  I also have issues with these two symptoms periodically.  The coordination really gets me into trouble during school at clinicals.  

I do hope that you are able to continue with your job as long as possible!  I also hope that you are feeling well.  Maybe someone else here will come along and give you some advice, as I can't think of anything, lol!

Take care,
Sarah

[babygizzy223]

Thank you for responding...sca type 2 is hereditary, it starts by affecting coordination and balance, my mother who is 67 is totally wheelchair bound and mostly totally dependent for her self care. It causes her slurred speech, difficulty swallowing so it is easy for her to choke and numerous other related problems.. As a nurse I am trying to get off the swing shifts and work straight days, so that perhaps I can continue to work for several more years, as being active seems to help slow the progression of the disease. Unfortunately, despite having 2 doctors letters stating I should work straight days, my boss is not so understanding and I am forced to jump through hoops to attempt to make this work (I work in the VA system)..Right now my main symptoms seem to mostly be coordination and balance issues, along with horrible restless leg and some occasional sight issues.  Thanks for listening, its nice to have a sympathetic ear...

[sarahw244]

Welcome!  I, either, don't really know anything about your dx.  I did look up some things online, though.  I am sorry to hear of this dx for you.  Did you just find out?  It sounds like it is hereditary.  

From what I read, there are many different kinds of this disease.  Do you know which one you have?  I would have to agree with Chanda, you should try, if at all possible, to get onto a regular shift a your job.  As with many neurological diseases, being fatigued seems to exacerbate things...

Anyways, I just wanted to add my welcome.  I am sorry that I don't know much about your dx.  Could/would you share a little more about it, possibly how it began, what your symptoms are, etc?  

Take care,
Sarah

[patientnurse]

Hello and welcome! I do not know much about your diagnosis, would you care to share/explain the symptoms and cause?

I too am a nurse and I had a dr tell me a few yrs ago that working swinging shifts like that will take a toll on your body and health. (I work days/nights in the same week also). Just a thought, to work a set shift if at possible. Unfortunately I have to agree with the dr I had. I have had other health issues before all this neuro stuff, and alot of things were exacerbated by my circadian rhythm being off.

Hope to hear from you soon,
Chanda