How much do you weigh?

Is it common to lose weight with ataxia?

That’s not my experience. Perhaps your appetite has changed.

I think ataxia may not be the cause, but I have lost interest in food.

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And that’s why I always say that Ataxia causes more problems than just physical.

In my case, I am losing all muscle mass so typically I am losing weight but since I am always sitting I gaining weight.

I have lost about 17 lbs. I’m wondering if it’s emotional. I spent the first 55+ years of my life very independently. It’s like a whole new life!

Henry,
Exercising is VERY IMPORTANT for us. Just do the best that you can do. Here’s a link to wheelchair exercising. Suggest that you and others check it out.

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When were you diagnosed? You just need some time to adapt.

I first had some symptoms (dizziness - like someone shoved me) in 2015. Then I had an MRI. I wasn’t officially diagnosed until an ENT, 3 neurologists, and a balance specialist saw me (between then and my second MRI) in 2017. I thought “I can’t possibly be dizzy for the rest of my life.” WRONG! I’m not in a wheelchair; I do have to use a walker though for balance. I have to do many things for myself (laundry, meals, litter box…). Could that be it? I have a cleaning lady every two weeks and a driver.

Dizziness is one of the most important Ataxia problems. I find that when I get dizzy, closing one eye seems to help. I hate to say it but you’ll accept it better as time goes by. I know that it’s not the answer you wanted hear but unfortunately it is what it is.

It’s okay, Chas. You’re right. Friends say I’m handling things well, but I think that deep down, it’s bothering me. I can’t go to therapy and talk about it because (catch-22) I can’t talk!

Just know and remember that we’re always here for you.

Thank you! I feel lost sometimes.

:thinking: Have you ever tried therapy for dizziness. Quite often people diagnosed with ataxia have dizziness caused by BPPV (Benign Paroxysmal Posterior Vertigo), I have this myself.
It’s possible to try a home remedy, or watch it on You Tube, or ask a doctor to perform the manoeuvre for you.

Home Remedies for Vertigo

  • [Epley Maneuver]

The spinning sensation and dizziness you get from vertigo can limit your activities and make you feel sick. Depending on the cause, though, some simple maneuvers you can do at home might bring relief.

The most common type of this condition is BPPV (benign paroxysmal positional vertigo). It happens when small crystals of calcium get loose in your inner ear. You may feel it when you’re getting in or out of bed, or tilting your head up. People over age 60 are more likely to get BPPV. It’s also the easiest type of vertigo to treat.

Before you try to treat it yourself, see your doctor. If you have vertigo, you’ll need to know what type it is and which ear has the problem.

If you have BPPV, certain actions can move the calcium crystals that cause the problem out of your ear canal. That should bring relief.

Your doctor or a therapist can show you how to do these moves.

Epley Maneuver

If your vertigo comes from your left ear and side:

  1. Sit on the edge of your bed. Turn your head 45 degrees to the left (not as far as your left shoulder). Place a pillow under you so when you lie down, it rests between your shoulders rather than under your head.
  2. Quickly lie down on your back, with your head on the bed (still at the 45-degree angle). The pillow should be under your shoulders. Wait 30 seconds (for any vertigo to stop).
  3. Turn your head halfway (90 degrees) to the right without raising it. Wait 30 seconds.
  4. Turn your head and body on its side to the right, so you’re looking at the floor. Wait 30 seconds.
  5. Slowly sit up, but remain on the bed a few minutes.
  6. If the vertigo comes from your right ear, reverse these instructions. Sit on your bed, turn your head 45 degrees to the right, and so on.

Do these movements three times before going to bed each night, until you’ve gone 24 hours without dizziness.