Progression

[Jacqui-A]

I feel my decease is progressing faster than I'd hoped. I could walk unaided and move furniture back in February now I wobble and wouldn't dare move anything. My legs behind the knees hurt when I stand. I moved 160 miles to be near my daughter, yet I feel so alone and she tells me to pull myself together.

[vinoddayalji]

Yes it's the same here. More wobbly than before you

[Caragh]

I know how you feel everybody thinks it is in your head but your body has lost connection

[ConfusedAtaxian]

Mine just suddenly progressed from cleaning up the house one week to needing a cleaner the next. Now I struggle to get in a cupboard and need a rollater in the house. What a horrid thing for your daughter to say!

[Jacqui-A in reply to ConfusedAtaxian]

I thought this was a slowly progressing decease but that is not the case. Good luck

[ConfusedAtaxian in reply to Jacqui-A]

And to you Jacqui 🙂

[february]

Dear Jaxqui-A, Ataxia symptoms progress at different rates depending on the cause. So sorry you're dealing with this. I have had ataxia over 20 years now and didn't know the cause. Just by a fluke, I had genetic exome testing in 2017, as my neurologist was looking for a cause he suspected. Well it was negative for that cause, but a single Niemann Pick C (NPC) gene was found. Therefore, I had a skin biopsy and then a specialized blood test (NPC is hard to diagnose) which was positive for NPC disease. My ataxia is due to adult on-set NPC disease. I not only have single NPC gene, but an unknown variant as well. My ataxia has progressed slowly over the years, although for the past several years I've had to use a cane and now also, a rollator. Anyway, try to exercise for strength and balance. Keeping your core strong is most important now! You can lie on the floor (getting down and up can be a challenge, at least for me...,ha!), or be close to a sturdy object in case you need to grab on, as you don't want to fall (falling IS NOT my idea of a good time...,lol!) You can even exercise while sitting in a chair, as there's disabled exercises for strength and balance online. Also, eat as healthy as possible...,lots of fresh fruit and veggies! Physical therapy is helpful too (for me), as I try to go for a few appointments yearly. I'm, by no means, trying to tell you what to do, just suggestions that work for me! My best to you...,;o)

[Jacqui-A in reply to february]

Thank you February, your support means a great deal and I don't feel so alone. I did fall over today, really shook me up luckily no damage done and I was able to get up. Once again thank you. Jacqui

[Driven1]

First major fall last week, broken arm, hospital, operation.

6 weeks incapacitated.

Found Pizza cutter good for cutting rather than knife and asking someone else to do it

[february]

Hi Again Jacqui-A, I'm glad you weren't hurt when you fell today! I've taken some pretty nasty falls over the years, fracturing my pelvis, cutting open the back of my head, requiring 9 staples to close the wound, tearing the meniscus in my right knee, requiring arthoscopic surgery and fracturing two ribs, as well as large bruises on various parts of my body and in my most recent fall, I hit my head and nursed quite a painful egg for several days (I determined I must have a really hard head, which in my case is a very good thing...,geez!!! I've also fallen where I haven't hurt myself, as those are the BEST kind of falls...,ha! Anyway, you're NOT alone in your journey!!! One of my favorite mantra's is, "a woman is like a tea bag, as she never knows how strong she can be until she gets into hot water"...,lol! ;o)

[Jacqui-A]

Hello February, you have had a lot of tumbles and repairing surgery you take care, I fell down the back patio steps and broke my shoulder, that was back in May and apart from that a couple of falls both of which I landed on soft grass so I've been fairly lucky. I find I'm better walking in the house than outside. I am trying to find the best excersise s to do, I have read that swimming and Pilates could be good.Take care ,Jacqui

[benning]

Ataxia creeps up on you when you least expect it,like me I advise you to learn to find ingenious ways around it,most importantly DON'T LET IT BEAT YOU,GOOD LUCK.

[Jacqui-A in reply to benning]

Thank you for those encouraging words benning, it is a difficult road we all take. Good luck to you too.

[margieboo22]

I know exactly how you feel,I was told in August,it was ataxia, already use a wheelchair,and sticks,my arms hurt with the stick,more wobbly and more scared!,take care xx

[Jacqui-A in reply to margieboo22]

Scared!! It is a very scary decease and no one knows how quickly it will progress and what symptoms we will get I was diagnosed in October so it's still quite raw, I spend a lot of time in tears as I live on my own with my two dogs I would give anything for a Companion

Keep fighting and take care x