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Ataxia Support Network

Good day, bad day


#21

I’m one of the more optimistic people I know and if I’m being honest there are no good days.

The bad just range from not so bad to terrible :slight_smile:

However having a Neurological Condition that constantly has me on a fair ride followed by a red eye flight after a hangover…

If you are dealing with the loss of function or weakness you have your hands full! To add this brain vertigo nystagmus discomfort and constant body/head stress I do feel may be the reason for NO good days.

Anyone out there feel similar? I hope to make sense.

Just my thoughts xo


#22

Marjorie,

Love them in your heart and wish them understanding then let that go. They don’t have a clue. Period.

I go through so much the same. This is isolating. I feel for you xoxo

It’s always them, repeat it to yourself. God bless them and all that stuff :wink:

They are showing clearly they can’t be leaned on, don’t try to convince or WISH them to know. Just go, you’ll find the ones hopefully who can be leaned on.

It’s not fair though! Not at all.

Also, I let the house go to Hell all around me for a couple years. My brain was just like NOPE we can’t do that, feels bad lol.
My little bit of advice is get a routine, get it done, then rest. It hurts but it can help you mentally in the long run. IF you can do what you can to get mini tasks done for 3 days, see if it helps mentally which can lead to physically being better in the long run xo


#23

:slightly_smiling_face: Louise, go to Walmart or wherever, and just try walking around holding onto a Rollator. You wouldn’t believe how much it frees your mind, grounds you and enables you to focus properly on your surroundings :slightly_smiling_face: It’s gives you the same sort of confidence as holding onto a supermarket cart but with more manoeuvrability :slightly_smiling_face: I often get by using my walking stick, because like you I have an aversion to been seen using the Rollator, unless it’s I’m having a bad day and then there’s no option. And quite frankly, on those days, been seen with the Rollator is the least of my problems :face_with_raised_eyebrow:

Re getting into a routine. I think you hit the nail on the head Louise, it helps me enormously if I can get up in the morning with a plan of sorts in place. This may need to be flexible depending on how focused I feel but it definitely helps psychologically, and ultimately increases my motivation :slightly_smiling_face: Of course this is definitely interspersed with regular rest periods :wink: xB


#24

@Louise78 I have a 4 year old son who is abnormally large and strong (picture Conan the Barbarian as a little boy). He is already stronger than I am and can easily push me over.

I used to have some friends who would say to never run downhill with dogs if you had ataxia. Now I know the real danger. Bending over a bathtub with ataxia trying to wash the hair of a struggling little boy. Basically, you could do a mad libs here and insert any activity with the ending of the sentence being “…with/of/to a struggling little boy.”


#25

Thank you, I might try that. My family physician’s mother had MSA, so he knows first-hand how to treat my symptoms. I guess that makes me lucky in some ways. I will be sure to mention Adderaral on my next visit.


#26

I have to say, using a walking stick/cane/rollator lets others know we struggle to navigate entrances etc. I have made a special mental note of the kindness I have recently received in public from others. Holding doors, moving things to make room for me, and he list goes on. I am really surprised and in awe by the compassion and generosity of others. Maybe it’s just the area I live in, an area with thoughtful, kind souls. (I live 2 hours north of Toronto Ontario, Canada). What a good day is.


#27

Today was not the best of days. My balance was “off” more than usual. My normal balance [for me that is] is off normally but today it seemed more than usual. Hope it doesn’t continue.