SCA7

[patriciagrant]

Hi

I was diagnosed with SCA7 almost 20 years ago. I retired from work 16 years ago.

My condition has deteriorated, and I am now in a wheelchair, and blind. My speech is very slurred, and communication can be difficult. My dexterity is very poor, and I have tremors.

I go to the gym every weekday for about an hour and a half, and do two aqua aerobic classes a week. I find the aqua aerobics very good because I can do things in the water that I would be unable to normally. Both instructors now know that I am blind, and therefore take into account, any problems I have.

I have a PA who helps me stay independent, and is able to act as my eyes during the hours that she is with me.

I would really like to connect with anybody else that has SCA7, and has multiple handicaps. Every solution always seems to be dealing with one problem, but not taking into account, the other disabilities.

[wobblybee]

Hi Patricia, welcome😊

My own ataxia is said to be Recessive, I've been told I have a link to the mutant gene Syne1 but, not specifically a type as yet🤔

You actually put me to shame re the exercise programs, I know full well what I should be doing 😏 xB

[patriciagrant in reply to wobblybee]

Thank you for the welcome.

On reading your introduction, I don't think you should be too hard on yourself regarding the exercise - sounds like you could do with a break!

My sister works as a Clinical Psychologist at the RVI, and from what she tells me it sounds like there has been a lot of good work done on Ataxia in Newcastle, so it sounds like you are in a good place x

[wobblybee in reply to patriciagrant]

If this is of interest to you🤔 Today, someone joined livingwithataxia.org and they are hoping to make contact with other SCA7s 😊

You can browse the site without having to join. But to post, you must be a member 😊

😊xBeryl

[patriciagrant in reply to wobblybee]

Thank you very much! I will join today. What is the member's name, or where can I find the post please?

Thank you for thinking of me. I hope you are having a good week.

[wobblybee]

Hi Patricia😊

LWA has undergone a change in format, previously it was straightforward to search for a specific topic but now....

The only way I've found of leading you to the particular post is by clicking the following links.

Assuming you are on the main page, look at the grey heading boxes and click on 'general discussion' - look down for subheading 'general' and click.

Beneath that, click 'all categories' and scroll down looking at the right hand column. See Spinocerebellat Type 7 posted by Dolo25.

Apologies for this 'fiddly' instruction🙄 The site Ben's Friends has grown too big to carry on in the original format, changes have had to be made and as with any new format it can be challenging to the user 😉

There are also Facebook Ataxia Support Groups, with members asking about a wide variety of types 😊

😊xBeryl