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Ataxia Support

Where are you?

#185

Looking forward to spring!

#186

This is a true INTERNATIONAL condition…Welcome!

#187

one thing that doesn’t work in Britain is LOW CLOUD, and that affects me like hell…I need Spanish sun/or Portuguese.

#188

The weather effects me. If it’s sunny I am better but if it’s cloudy or raining I am a mess. Anyone else relate?

Sue in Massachusetts

#189

Suzi, I am in England. The weather…but you won’t believe thiswhen sunny, what’s called continental mornings and eve the worst…High atmospheric pressure, here in England for me on a number of occasions showed worse. When in Algarve, Portugal till I get used to it, fine…
Always grumbled about weather here, but I caught myself desperately waiting for rain…

Sunlight and sun shine are the best…Not only on achy knees, bones basically lifts you up, energy wise…the winters are personally for me the worst…had to take a course of medicated 20,000 uc measurement vit d3.second winter, now…

#190

Linda5 Sydney-central coast 2 hour’s north Sydney.

#191

Episodic ataxia in Western Massachusetts (west of Northampton). We could start a subgroup!

#192

I am sca2, so don’t qualify, wishing you all the best with subgroup. if you extend it, let me know…

ladybird

#193

:slightly_smiling_face: If you were interested, there is an Episodic Ataxia Support Group on Facebook :slightly_smiling_face: xB

#194

Hi Beryl,

will have a look. Thanks.
ladybird

#195

:thinking: Didn’t you mention you were diagnosed with SCA2… There are several ataxia support groups on Facebook…some ‘general’ but some for specific types. Re SCA2, a different group would probably be more ‘in tune’… I’m a member of a few groups, and useful advice gets passed around :slightly_smiling_face: xB

#196

hi Beryl,

you remembered well. I am on health sthg just, remembered somehow got on the wrong section with quitting smoking, but was pointed to a right diagnosis…but none of it is specifically for sca2. I don’t mind, reading wider, then mine…

Thanks for thinking of me.
ladybird

#197

I live in beautiful Sonoma County, California–the wine country! It is slightly north of San Francisco. SCA3.

#198

Hi gabowitz, welcome :slightly_smiling_face: I live in the UK, but I’ve visited your part of the world, and it is beautiful…and definitely much warmer :wink: xB

#199

Thanks for responding, Beryl. I have poked around several of the blogs and am glad l found this resource. It’s somehow comforting knowing you’re not alone.

Let me know if you ever get out this way again!

Pam

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#200

Update - originally I was diagnosed TWICE with SCA from Athena but now had my sister tested at Cornell and we both have Niemann Pick (NPC1).

#201

:thinking: That must have caused a lot of frustration, and annoyance, I’ve read that Athena offers options of testing, and something may have been missed.

#202

excuse my ignorance, what’s Niemann Pick when at home?

thanks. my bro has ataxia sca2, but needs a genetic test to confirm…just changes on the lesions cerebellum, I am personally about 70% (he is 30%) milder form…Slovakia sounds as if NOT SO DIFFERENT as here, my case straightforward, walking difficulties, the scan and genetics confirmed he LESS AFFECTED, more open to interpretation, guess, whereas me nailed it…My Sir Watkins bld. is a par excellence place, as Sir Watkins him selffunctioned for years as a F1 doctor, did a lot of safety improvements, a helmet…for F1 drivers…in Britain…Nobody cld save A. Senna, the crush he had…

#203

Hi ladybird, I also never heard of the Gene but I hear there is a “possible” treatment. Taking Miglusta, if you have a mild to moderate type C. Check this out for more information: https://www.mayoclinic.org/diseases-conditions/niemann-pick/symptoms-causes/syc-20355887. Cornell Medicine wants my sister and I to go on a Clinical Trial. Will see…

#204

how wonderful, very brave of you both. Good luck with the result, is Niemann ataxia? or some other condition?