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  New here (Sambo1018)
Posted: 1:11:21 am on 2/2/2010 Modified: Never
  
My mother was just diagnosed with cerebellar ataxia. She will be 73 in 3 months. She is really not interested in the genetic testing since the doctors told her there was no treatment or cure. Should we push for it?
She started having gait issues a year ago, just after having a pacemaker placed. It makes me wonder if it was a problem with the cerebellum that caused the need for the pacemaker.

I moved back close to her in July because she was not getting any answers on her own and started attending doctor visits with her and pushing for information. Just from July until now her gait has doubled in severity. She is now like a toddler learning to walk when she first stands up and is frequently falling.

I am so new to this and have just started researching everything to the point that my head is spinning. She will use a cane but doesn't want a walker. She is very headstrong and I don't know what lines to cross or not. I really wouldn't want her to pass being mad at me. Right now it only seems to affect her lower extremities.

Open for any guidance.

Thank you Sandy Pope
 
  Re: New here (hamachi)
Posted: 1:33:18 am on 2/2/2010 Modified: 1:53:13 am on 2/2/2010
  
Sandy,
With your mother being 73 now it might be SCA6 it is a ataxia that hits people later in life. I have a 3 wheel Winnie Walker I got on the internet the website I bought it from is http://www.Activeforever.com I used to use a cane but a walker is so much better because ataxia patients need constant support. If you need a good neurologist Dr. Susan Perlman at UCLA Neurological Center
is a good doctor. Her e-mail address is Sperlman@mednet.ucla.edu You can ask her any questions she will get right back to you.
  Re: New here (hamachi)
Posted: 10:43:21 am on 2/2/2010 Modified: Never
  
Sandy,
If your mother has a social security card she has medicare they will pay 80% of any medical testing and consoltation and if your mother has medical insurance they will pick up the rest.
  Re: New here (Sambo1018)
Posted: 2:17:04 pm on 2/2/2010 Modified: Never
  
Thank you so much. She does have medicare and a secondary insurance as well.Sandy Pope
  Re: New here (angeline)
Posted: 8:45:43 pm on 2/3/2010 Modified: Never
  
i think you should defanitly push the isue of genetic testing. I was diagnosed in 2002 my sister was diagnosed a few months after we were told it was genetics and to have are children tested but it is possible to skip generations. I dont know if thats true. You have to be 18 or so we were told but with this i think it better to be safe
  Re: New here (angeline)
Posted: 8:45:45 pm on 2/3/2010 Modified: Never
  
i think you should defanitly push the isue of genetic testing. I was diagnosed in 2002 my sister was diagnosed a few months after we were told it was genetics and to have are children tested but it is possible to skip generations. I dont know if thats true. You have to be 18 or so we were told but with this i think it better to be safe
  Re: New here (SunnyKay)
Posted: 12:41:28 pm on 2/5/2010 Modified: Never
  
Hi Sandy and Welcome!

Is there any family history of neurologic disorders like Parkinson's, MS, ALS, Pick's, Alzheimer's, etc.? If so and there appears to be a possible hereditary pattern(Your doc should be able to determine this...If not, a genetic counselor), then I would seriously consider the testing. I would recommend testing in conjunction with genetic counseling if at all possible.

Blessings...

SunnyKay 


Everyone Deserves A Great Doc!!!
  Re: New here (Sambo1018)
Posted: 6:22:28 pm on 2/5/2010 Modified: Never
  
Yes, there is a history. My mom's mother and aunt had similar issues, but it was never diagnosed back then. She has agreed to the genetic testing. They only test for 7 though in Birmingham, AL.Sandy Pope
  Re: New here (olivia5721)
Posted: 3:35:07 pm on 2/6/2010 Modified: Never
  
http://www.activeforever.com/p-1300-pilot-rolling-cane.aspx

I have found this to be a great compromise between cane and walker. I am 35 and not ready to use a walker, but this is much more maneuverable than a cane. As an ataxian, worrying about placement of a cane is more of a hindrance than a help to me anyway. ~Olivia~
 

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