Good day, bad day

Not sure that the alternative is the answer.:cry:

I wondered why I sneezed so much and so hard! Glad I joined this forum. In the beginning I always got better as the day progressed. Even now that happens as far as some symptoms go. I can rarely talk so people can understand me. That used to improve as the day progressed. How far will we fall? I really would rather be dead. That’s a rational conclusion. Don’t be naive and try to tell me I really don’t. I really do. I am having an existential crisis. I am calmly ready to take my own life. Being in a nursing home prevents that. I think about it every five minutes. I have for six years. I am only going to get worse. I’ts suffer a lot and then die or just die. It’s a very simple concept. I’m 66 and have had enough of life. We are all going to die. Can’t we chose when? I hope I cheered y’all up :joy:.

I think that the hardest thing about Ataxia is that most of us feel so alone since Ataxia is a very rare illness. Personally, other than here at this site, I know of no one else that has Ataxia! It’s a struggle coping with what life throws at me every day but what other choice do we have? It is what it is!

My suggestion to you would be to join an Ataxia support group so you could “voice” your concerns. It doesn’t mean speaking your concerns with others. I’m pretty sure there are support groups online rather than face to face since your situation makes you unable to travel. I see that you’re in South Dakota; let me see what I can find.

Found this at Facebook: National Ataxia Foundation | Facebook

1 Like

I appreciate your response. When I first found out I had the rare condition of neurodegenerative disease the prevalence was one in 50,000. I’m not looking for suicide prevention advice. I do like learning from all you. And I do consider this forum a support group. Thanks!

1 Like

:slightly_smiling_face: If you haven’t already had a look at the link Chas gave…take a look
There are posts several times a day, people discuss all types of subjects…sometimes it’s quite social…and reading about other people’s experiences stops you focusing on your own problems…believe me I know what I’m talking about…Not that I’m belittling your situation in any way.
There are a number of Ataxia Support Groups on Facebook, mostly closed groups, which means posts are only visible to members.

Not one of my good days today. My balance was really off.

I empathise. Just when our weather has had a turn for the better…my symptoms have taken a turn for the worse :roll_eyes: Exceptionally poor balance and dizziness have really kicked in with a vengeance…
:slightly_smiling_face: I’ve got the instinct, and energy to get on and do something, anything but sitting still…

Yesterday was not a good day for me. Balance was really off.

What are your days like?

I wish I could say I had a good day. I did get my wheelchair today! Yippee! Let’s see first was a hurry cane, then a walker, to a rollator, now a wheel chair. what’s next?

Just remember one thing, we’re always here for you. :slightly_smiling_face:

:joy: So far, I have a walking stick, poles and a rollator…so I’m adding too…I can be a hazard with all 3… I’ll need to take a proficiency test when I graduate to a wheelchair.

1 Like

A friend mine who had MSA like me passed away several weeks ago. This is a hideous disease and no joke, it ends with death with an average of six years. She was misdiagnosed with Parkinson’s at first. I think that was 2015. I started noticing a difference in things about late 2016 and after numerous tests was diagnosed in November 2018 with MSA. The neurologist specalist said 2 years with a cane, 2 years with a walker, 2 years in a wheelchair then you die .I’m in year 2 of the walker.

Like everyone on this board, I have good days and bad and i wish for a miracle every time I wake up. I am determined to beat the average
and fight going to the wheel chair. Like my mom used to say it could always be worse. It is hard sometimes to think of anything worse.

I’m going to post this in caps. EACH CASE IS INDEPENDENT OF EACH OTHER. WHAT HAPPENS IN ONE CASE DOES NOT MEAN THAT’S YOUR CASE ALSO!! Do the best you can. That’s what your experience MUST BE.

3 Likes

:slightly_smiling_face: If you didn’t already know…there are specific support groups where you could have contact with others coping with MSA.

Today wasn’t a good day. Balance not so good. Hope tomorrow is better.

:slightly_smiling_face: Yes…it can be swings and roundabouts …can’t it

:slightly_smiling_face:Hopefully you’re now feeling completely different

:thinking:It’s the same for me…Worsening balance, disorientation and other irritating stuff like tongue/cheek biting/choking etc etc…can happen in cycles, I actually expect this now…Good days (a glimpse of normality) are usually a bolt out of the blue, and gone before I can appreciate them.

1 Like

Feels better today - NOT normal but better! I’ve has this Ataxia for 55 years now and it’s getting old. :smiling_face_with_tear:

I don’t know if I was actually born with ataxia…but I do recall odd moments during childhood, and later…but nothing major happened until I was in my 40s.
:slightly_smiling_face: I always have the same thought…It would be nice to wake up and be able to get on with the day without ataxia crossing my mind…

I’m of the thinking that if one gets a good nights sleep the day before then it turns out to be a good day. Waking up numerous times during the night to go to the bathroom is not my idea of a good night’s sleep. :weary:

Your still able to get to a bathroom, night or otherwise??? I use a urinal at night to avoid getting up from bed.