Quantcast

Ataxia Support

What's the point in coming here

… if nothing can be done anyway? If that’s your thinking, then your thinking needs some adjustment. Sure, medically might not happen YET but psychologically might be just as important for now. You can vent here because we understand or even learn something that you didn’t know before. Also, it’s a great place because as I recently said we didn’t all come here on the same ship but we’re all in the same boat.

1 Like

Good morning. I am the mother of a daughter with Spino Cerebellar Ataxia who was advised by her GP not to follow this site as it would be too depressing for her. She is in a long term placement facility in Quebec as she also has Osteoporosis, has fallen numerous times and has broken her hip, knee etc that required several surgeries over the past 3 years. My heart breaks for her. She was a great teacher, with a brilliant mind. She is now vegetating in this facility as the patients there are mostly mentally challenged.
Really do not know where to turn for any help for her.

I would like to recommend that she take vitamin D3 for her bones and vitamin B12 for her SCA unless the doctor says no. Also I have to disagree with his suggestion not to come here. She would “meet” other people that would understand and not just sympathize. If anything, doing so would be a plus. The worst thing is doing nothing and just dwelling on your situation. Just my opinion and thoughts.

:confused: Sadly, it’s often the case that people with complicated types of ataxia need to be looked after in long term care facilities. I know from reading other posts just how difficult it can be to find the right kind of facility, you are not alone with this dilemma. Looking after a person’s physical needs is important, but it’s important to stay mentally active too. From what you say your daughter does have access to a computer :slightly_smiling_face: it’s a great way of passing the time, there are links to so many diverse subjects, and it’s possible to strike up friendships online too.
I’m a member of several ataxia support groups, they’re not all the same because people themselves are different :slightly_smiling_face: Some doctors do actually try to dissuade patients from contacting support groups, it’s a shame because to be in touch with other people who totally understand your challenges can be so helpful. Members live in various countries, and time zones, and we have a few laughs as well as empathising :slightly_smiling_face:

We have just found out that our beautiful daughter, Nadine has Covid 19. Hoping & Worrying,

Best of luck. Fingers crossed.

:confused: I’m so sorry to hear your news. Sincere best wishes. Does she also live in Canada?