OPCA - SCA - MSA Support Forum

hello question

feeds@yuku.com (iceteezz2008) — Tue, 03 Nov 2009 21:03:01 GMT

I would ask in other post but I thought I would make this one.

About ataxia I was at the computer and got up and of course I had a gait but during it trying to get to small couch from longer one
I felt myself twisting,my boyfriend had to help me even,fell off the couch once but once there I just laid to get my feelings back.
Then after I was able to sit up. That was something, never twisted before. took a antivert a little later.

Has...

Balance and walking

feeds@yuku.com (Sailor George) — Sat, 31 Oct 2009 21:11:50 GMT

Hi folks,

As my symptoms progress, the one symptom that is really adversely affecting me at this time is walking. If I use only my cane, I must hang to someone's arm or use the wall and door frames or anything that is within reach (hopefully stable).

For most walking around the house, I use my rollator. It's use is very helpful. Once I get into my van, I have no trouble driving, thank goodness. I even have clearance from the Ministry of Transportation to drive...

Active Members

feeds@yuku.com (Sailor George) — Tue, 27 Oct 2009 20:12:39 GMT

Hi Fellow Members,

With over 400 members, one would think that there should be many members posting on a regular basis. Even at 10%, this would mean 40 of you could become active. And why not? Even if you do not like the messages being sent, you can participate and tell others what is on your mind. If you have found another site dealing with Ataxia in all its categories, and that you like better than this one, why not express your views.

Yes, I am guilty of not...

High Cholesterol

feeds@yuku.com (masanthony) — Fri, 23 Oct 2009 09:25:55 GMT

This is completely unrelated, but does anyone have this problem, what meds are you taking and what are the side effects? Also, Roberta sorry for your loss.

hello all

feeds@yuku.com (iceteezz2008) — Fri, 16 Oct 2009 23:31:52 GMT

hello all haven't been around lately or when I check in no new posts
today just received a note to mention about an ataxia meeting.
Oct. 24,09 ( and am ok and now just nerves tonight about going.....first time).. Going to Harper Hospital for a speaker
they wanted me to be there a rock n' roll for ataxia but it was too far
...

Lindy & Roberta

feeds@yuku.com (sportschick12) — Thu, 15 Oct 2009 20:29:36 GMT

Gals...........

I wanted to be sure you received my invitation. It's on the thread "neglect of the chat room" in the chit chat cafe.

Take Care,

Maria

Bragging

feeds@yuku.com (Sailor George) — Tue, 06 Oct 2009 20:10:45 GMT

Hi folks,

I just sent Ed an e-mail to his private address, and then thought that the same message could be sent to this site. Here it is:

George in Toronto, Canada

Hi Ed,

Another good day. Cooler but sunny. The grass in the backyard was wet this morning, but after lunch, it was dry enough to mow. After mowing, I decided to hoe the front garden, and then to pull weeds in the backyard. I then came into the house and had a nap.

Upon...

Contact with E-Cousins

feeds@yuku.com (Sailor George) — Mon, 21 Sep 2009 21:02:25 GMT

Hi E-Cousins,

I have just sent an e-mail to the 16 Cousins stating that the only ones with whom I make contact are as follows: Len, James, Debbie, Allie, Dori, and until she dropped out, Jenny. If others are seeing this message, would you please attempt to contact me on the E-Cousins contact list as soon as possible. I will attempt to rectify this problem and if I don't, I will probably drop out and communicate only on this forum. Thanks.

George in Toronto, Canada

Anti-Anxiety Pills

feeds@yuku.com (sportschick12) — Mon, 21 Sep 2009 10:29:24 GMT

Being that after well over 7 months Len still has not found a job & we are looking at possible foreclosure, I tend to go into panic attacks. My neuro gave me Buspirone to calm me down. However the 7.5 mg even cut in half made my vertigo much worse & for the first time was accompanied my nausea.

How have you folks dealt w/ this medication? Understanding that my vestibular system is extremely sensitive to medications I was wondering if trying a 5mg pill & cut that in...

weakend muscles

feeds@yuku.com (phatbuns) — Thu, 10 Sep 2009 21:03:10 GMT

My husband, who was diagnosed in November '09, has deteriorated quite rapidly. It is still questionable as to whether he as OPCA or something else. He refused any more testing. His muscles in his arms and legs have atrophied greatly and he is having an increasingly hard time walking. Is the muscled wasting normal? He actually wears long sleeve shirts, even in the heat, to hide his arms so that no one sees them.

Neglect of the Chat Room

feeds@yuku.com (Sailor George) — Tue, 08 Sep 2009 20:22:45 GMT

Hi folks,

I have come to the conclusion that as Ataxics we find using the Chat Room too much of a challenge. Personally, as my symptoms of SCA6 progress, even the typing of this message is one that is a challenge. I find trying to keep up on a chat line very difficult since my hand co-ordination is poor. At least, when I type in a forum, I can take my time and correct or spell check accordingly.

Don't get me wrong. I am not angry. I have finally come to the...

National Ataxia Foundation Webinar - Sept. 17th

feeds@yuku.com (Bob354) — Fri, 28 Aug 2009 13:36:54 GMT

The Medical Director at the NAF -- Dr. Susan Perlman -- will be speaking on a free webinar on September 17th at 8pm Eastern Time (7:00 PM Central Time; 6:00 PM Mountain Time; 5:00 PM Pacific Time; 1:00 AM United Kingdom/London Time (following day); 2:00 AM South Africa/Johannesburg Time (following day); 10:00 AM Australia/SydneyTime (following day)). Her presentation is entitled, "Ataxia, OPCA & MSA-C Look-A-Likes of PSP, CBD & MSA". To register, copy...

msa

feeds@yuku.com (dcaughy) — Wed, 29 Jul 2009 19:32:14 GMT

Hi,
my name is doug. excuse the lack of caps, i have advanced msa and can barely functioon. i am not looking for pity, i did a very foolish thing. when i finally found out i had msa, which took docs near 3 yrs, i went into denial, they basically sent me hone to die. not in so many words. that might have been too merciful. no explaianations at all, didn't even tell me it was terminal. i found out on the net whn my daughter in law emailed me a japanese site, i soon ruled them out....

time to tell my neurology doctor

feeds@yuku.com (iceteezz2008) — Fri, 24 Jul 2009 18:25:09 GMT

hi Tammy here I have Epilepsy and Ataxia. Had epilepsy for 40 years at least. My doctor would tell me but kept quiet
my family doctor knows about the problem so all these tests but I mentioned Ataxia and was told no it isn't but my neurology doctor says I do
My neurology doctor was wanting me to talk and was but he said I had it again but I was surprised in a way
Now I still have to tell him but told my family
not use to all these problems & feelings and enough...

Scott & Mary's story

feeds@yuku.com (phatbuns) — Wed, 22 Jul 2009 08:52:04 GMT

Hi everyone! My name is Mary. My husband Scott was diagnosed with OPCA in 2008 at age 49 We live in Michigan. His is the sporadic type. It seems to be progressing quite rapidly. He is BULLHEADED and refuses to use a cane or anything else. By the grace of God he has not broken any bones yet. I thank you for this website & forum. It is (sad) but heartwarming to know that there are other people like us out there.

What's happening out there?

feeds@yuku.com (Sailor George) — Mon, 20 Jul 2009 20:14:45 GMT

Hi folks,

Is it just me? Am I too busy to post? I do keep busy and probably due to the fact that I am working on a family tree on my mother's side of the family and generally trying to keep busy around the house. I feel that I should be communication more with you people.

Healthwise, I now have trouble using a cane. To stop me from losing my balance, I have to hang on to someone's arm. You should see me working outside my house because I use my rollator to get...

wilderunn...back again

feeds@yuku.com (wilderunn) — Wed, 08 Jul 2009 06:27:11 GMT

I go through these periods where I'm convinced that I don't need any kind of support and will plow through just fine on my own, but I always end up back on here when I'm needing to find inspiration to carry on...some of the stories people have shared on here make me both sad for the present yet optimistic for the future.
I recently was dropped from a 3 year relationship because she couldn't deal with with my disorder anymore...you know what I mean...people assuming...

My Book on Parkinson's Plus

feeds@yuku.com (pdplusme) — Fri, 03 Jul 2009 14:11:17 GMT

I have joined primarily because I have been diagnosed with Parkinson's Plus and my neurologist sees both MSA-C (sporatic OPCA) or MSA (Shy Drager) as my diagnosis. I do have ataxia, swallowing, slurred speech mild cognitive, eye movement problems and trunk movement/head tremors. I progressed quickly and that is another reason my neurologist called it Parkinson's Plus.