Lowering some expectations

I have been eagerly anticipating my visit with the neurologist on July 20. I hope I receive at least a “most likely” diagnosis. I have been reading about the many different diagnoses I could have. I feel the neurologist will have a difficult time determining which version of neurological motor disease I have. But that’s their job;isn’t it? I wish I could motivate myself to get in better shape and actually exercise besides doing housework. Sunshine helps. I’ve been gardening like fiend. Probably the motivation to improve my general health is more important than the actual diagnosis. And I can start doing things for that immediately. :sunny:


Improving one’s general health is hard to do when you’re so overwhelmed though, isn’t it? Best of luck to you.

I agree lin-da. I need to actually care more. It’s like I’ve already
written myself off. Not good.

1 Like

I’d love to walk. Outside & do gardening but I can no longer walk. I thank God for taking care of me each day.

I like to weed😂 Not everybody’s first choice is it😉 But it requires a lot of bending. Bending I can do, so long as I hold onto something stable. It’s the actual movement of raising my head back up that causes a problem. Dizziness kicks in immediately plus nausea and other momentary unpleasant sensations🙄 Now, I know to restrict myself as to how long I spend doing this. Plenty of breaks for rest and a cool drink👍

For some reason I’m unable to kneel in a stable fashion, or sit comfortably on the ground or even on a low seat, in order to garden😏

Stretching up and leaning back to tackle pruning makes me spin and stagger too🙄 There’s definitely a pattern.

Despite all that, if I can do it, I will😊xB

1 Like

I am so sorry you can’t walk anymore, Geri. That has to be so difficult. I
don’t understand my condition. I’m 68 now–birthday 2 days’ ago. Everything
I have seems lightweight in comparison to yours and Beryl’s descriptions. I
am appreciative about that. My brother was a minister for 40 years. His
symptoms when I first saw him again were intense. But I also have symptoms
with no particular beliefs. One religion kind of pisses me of–Buddhism. I
used to go to meditation/Buddhist lectures. But I ended up explaining to my
"guru" that karma clobbered me.

Hi Beryl. The sunshine seems so healthy. I do not care about the sun’s
radiation anymore.

Pisses me off-not of.

Oreberry, one of the major advantages of faith is being able to be angry with God. I believe He can handle it with love and understanding. I’ve gotten over that a while ago, but it did help. One of the things that happened when I broke my leg was that I realized how much of what I had that I newly lost. On one hand it is irritating to be grateful for what little I had, but I am grateful to be getting my new losses back now.

:thinking: It’s never occurred to me that in order to be angry with God, you need to have faith. I only say this because I would describe myself as not actually having faith but, I have been angry with God​:thinking: It was on behalf of my Mother, not myself​:slightly_smiling_face:xB

:slightly_smiling_face: Most of us cope with similar symptoms, to different degrees. What one person finds especially challenging, can be manageable to someone else​:smirk:
Btw, I constantly need to check spellings myself😉xB

Unfortunately your neurologist may have a grim diagnosis for you. In my experience, unless your are given a firm diagnosis via genetic testing or a definitive MRI, neurologists give you a “most likely” diagnosis.
Depending on the type of neurological disorder you have will likely determine the lifestyle you lead. We all are different even though the prognosis may be the same.
Certainly in all cases, though, diet and exercise are important, not just for maintaining physical health but mental health as well. Believe it or not studies have shown that in most cases of critical illnesses patients benefit greatly from good diet and exercise both mentally and physically.
Keep doing what feels right! (lots of sunshine)
Keep pushing forward!
Gardening can be very therapeutic.
May you have the best of luck.

Linda4, It sounds like your leg is improving and that’s definitely good news.

Beryl, I’m sorry about your mother. I don’t think I’ve been angry at a religious entity because my lifelong anger was focused at a relative who destroyed my childhood innocence. This was engraved into my brain I think, since my brain was still developing, and I “let” it destroy all my original family relationships. But, O happy day, not permanently destroy my relationships with my husband and grown children. I consider that to make me incredibly fortunate and “blessed.”


It’s okay. I’ve already shed a bucketful of tears for my misfortune after being horrified at my brother. Not horrified for him. I was never close with him and he was incredibly annoying, but for my future. And for him showing my 11-year-younger husband what his role as a future caretaker could be. Thanks for your input, I’m grateful.

1 Like

Yes, things are better. I was released from PT and the orthopedic surgeon last week, but it still hurts a little. I understand that is fairly normal. Hopefully, with continued exercises, I will be back to “normal”.

Good luck for 20 July Oreberry… diagnosis can be an anticlimax especially if not a definitive one but sounds like you are prepared.
Finding the self discipline to exercise at home is very difficult but I find if I do it first thing it helps. I cant motivate myself to do stretches but using machines such as nintendo wii games console with wii fit CD is good plan, I use this about 4 times a week and on other days I use passive pedaller and vibroplate. Vibroplate is very good and you can buy compact one second hand.

It you can get to a gym even better as you meet people too…

:blush:Patsy, your abilities​:blush: It just goes to show how variable ataxia can be​:blush: I realise you’ve probably built all this up but even so​:blush: Continue to enjoy​:blush:xB

1 Like

It’s a great shame you can’t choose relatives but then aren’t we all wiser ‘after the event’. My brother often infuriates me, he lacks basic empathy of any kind. Although he lives within walking distance, I’d think twice about contacting him for help, even in an emergency.

Best wishes for your upcoming appointment. Try not to speculate too much beforehand, virtually impossible I know. But, at least try to have a reasonably clear head when you meet with the Neurologist.

I know from personal experience, and after speaking to others, how easy it is to actually come out of that room mentally kicking yourself because either you didn’t ask something or, you have no real recollection of what was said…

This may be your only chance to speak to the Neurologist for some time, if you don’t understand something ( medical terminology) ask them to repeat it and be plainer with the explanation. :blush:xB

1 Like

Hi Beryl. Brother’s can be such jerks. Sometimes not.

I went to the bright shiny neurologist because there was a cancellation in his schedule. He looked at my MRI and said my cerebellum was actually larger in proportion to the rest of my shrunken brain but with all the spots and white-matter lesions he can see why I’d be off-balance. That I have a stroke-prone brain but no progressive neurological disease like Parkinson’s or SCA. I should exercise more and “stay off the patient forums.” You have been wonderful and so has Linda-4 and Patsy and all. You’ve really helped me and I’m almost sad I’m losing you guys. You were right in the beginning Beryl when you said it could be caused by my stroke. And I’m not following the path of my brother. Thank you, dear ones. And I wish you all the best. Emily