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Ataxia Support

What to do

First of all, WE CARE! How do you know that tomorrow isn’t the day that the cure is found? Suicide is the most dumb thing that can be contemplated. I’m not making light of the thought because of the problems associated with Ataxia but you WOULD be missed even though you don’t think so now. Even though you might not see it here, you’re not the only one who has to face difficult times. I’m sorry to speak so harsh here but I’m only trying to set you straight.

Have you looked into trying to find an Ataxia support group? https://ataxia.org/ In my estimation, playing the stock market with “tough money” is a form of gambling. Have you looked into support with a Gambler’s Anonymous support group? Friends of mine did and it’s very helpful.

BTW, how old are you?

43 yrs old and I just need a regular routine to get into and I’ll be fine and I live in a very rural area and their is no Ataxia support group around here

You may not be physically able to attend a support group but you may be able to correspond with the leader. That person might also have some good ideas for you. You can also post here or read on a regular basis.
FYI, I was 21 now 73. when I developed Ataxia. I was also looking at a professional sports career.

My father had this and his father now me and my sister and no one in our family has lived to 60. I have seen so much death from this damn disease

Very important! Ataxia is an individual illness. So someone else’s experience is not your experience.

your right I have noticed our form of Ataxia or whatever it is, is way worse than I ever seen in my father and his brothers who died from it

Suggestion. Please stop being negative. It can only lead to bad thinking.

:slightly_smiling_face: The National Ataxia Foundation provides a variety of ways to connect with others affected by Ataxia.

Find a Local Support Group on Our Interactive Map

[Join our Facebook Group](https://www.facebook.com/groups/

:slightly_smiling_face: You would probably benefit from more interaction with others who share the same challenges. It really does help to talk. As Chas recommended, log onto www.ataxia.org and search for Support Groups, even if there isn’t one in your immediate area, you can contact the nearest. And, the NAF Facebook group is very active :slightly_smiling_face:

@majdr, I’m so sorry that you’re going through such a rough patch. I’m guessing that this is a fairly new diagnosis. You’ve had a lot of changes in your life, and it’s not uncommon to grieve the loss of your life prior to developing this. In addition, you’ve had major financial and family changes.

Please seek out help! There are crisis numbers listed here. You can also seek out a therapist locally. There’s no shame in asking for help.

Sharon

chas 521 is correct, WE CARE Suicide is not the answer. You don’t have to leave you house to get support. Even just on here you can vent. This a great place to do that. Nobody truly understands un less they have it.

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There are already good answers here to hjsgqelp you …
That you reached out for help is a good sign. My ataxia is clearly in my family, so I know wht

I know it will get better in time. just all my years of solitude is finally catching up to me and I feel like I have no one left to talk to. I chose to stay to myself through the years and now I am suffering because of it!

:slightly_smiling_face: It’s surprising how much better life can be if you only reach out and have interaction with others. You don’t even have to leave the house, once you’re on-line you have the world at your fingertips :slightly_smiling_face: And with people living in different time zones, there’s always somebody somewhere to have contact with. If you’re on Facebook, there are numerous different Ataxia Support Groups, and most are very active. It’s definitely worth taking a look :slightly_smiling_face:

The only problem with Facebook is I am in such a small area that everyone knows my business before I even do anything and everyone is too fast to judge without hearing the whole story. And fyi to ModSupport I have been disabled for nearly 5 yrs so I’m not new to this.

Thanks for the reply @majdr. I wasn’t sure if you were new to ataxia or not. Reaching out here and talking to people here is a good start to being more connected. I’m glad that you reached out to us.

Sharon

:slightly_smiling_face: I only use Facebook to post on ‘Closed ataxia support groups’…I don’t use it as a social media, no-one can read my posts other than the specific groups I’m a member of. I don’t know if you’re actually aware that anybody, anywhere can read your posts here if they just click onto livingwithataxia.org

one thing I noticed about us Ataxians is we like a routine to follow and when it is altered or broken we lose it

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:slightly_smiling_face: I tend to agree with you. With so much concentration required for multitasking we get exhausted, routine and familiarity are definitely a comfort and relieve stress. It can shake confidence being in an unfamiliar place, even meeting new people. There’s so much more to ataxia than it being perceived simply a ‘balance problem’.

We’re about to move house shortly, and I know this is going to affect me greatly. Apart from the general trauma and upheaval, I’ll have to get to grip with totally new 24/7 surroundings. Now, in my home, I’m well familiar with how many steps to take before reaching out for wall support, the stairs are dog-leg shaped and for the moment manageable, but what if I have to contend with a normal run of stairs :thinking: We’re going to have to rent, and bungalows (single storey) are very thin on the ground :roll_eyes: There’s a high probability that we’ll have to accept a house, or it’ll be a Hotel :woozy_face:

My hopes and dreams are when my wife sells my house I am going to use my share of the money and buy a portable storage building, insulate it and convert it into a small handicapped apartment then I don’t have to answer to nobody and any one can come visit me. I can make a nice handicapped small apartment for reasonably cheap.

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:slightly_smiling_face: Good idea :+1: We’ve watched several ‘home improvement shows’ where people have done just this. Imagination is the key :+1: