Balance P.N.?? Ataxia ??

[lottiejemma]

Hello again, ----- I am very depressed, agitated, mixed up in my mind feelings, I wrote a message a short while ago, and I think I have mistakenly deleted it !!!, as most know, I have very bad balance, ---- I was at my G.P. last Friday, and asked if there was an answer from the Neurologist from my M R I & C T scan, and from the Bloods taken, All that was on the computer she said was That she would see me in 6 months !!!!???? nothing about Ataxia, I seen the Neurologist about 6 weeks ago, She said I had Ataxia, and told my daughter that I would not be able to walk unaided , I would be wheelchair bound --- I am that already !!! my walker is not safe enough for any length to walk. I also phoned The Neurologists secretary for results, and she said that DR White would write me a letter. Nothing as yet!!!. I am just wondering about my Balance, is it the Peripheral Neuropathy or the Ataxia ? I can stand a short few minutes with my back to the wall, but when I start to turn ---I Fall, It is very difficult to walk, I need a chair beside me to sit down, I am now finding it more difficult to dress myself, have to sit all the time, I shake, and can't balance walk with a cup of tea in my hand, even to try and stand to look in my wardrobe for what to wear, even that is becoming IMPOSSIBLE. My 77 year old brain and body feels washed out, so What causes such bad balance, not able to turn, or walk without feeling and shaking , going to fall, have to lean on furniture , oh is this Ataxia--- or peripheral Neuropathy ? my balance went bad long before effects of P.N. Thanks all again for taking time to read, I feel such a nuisance --- sorry, Love to you all, Take care

[Staggy1]

It really helps to vent any feelings and thoughts you have on this forum. Yes, you will feel very down at times. It is the frustration mainly of thinking you once could do many things so easily. Either way when you get your medical results you know you have to do things differently now. It is this realisation and acceptance that makes this silly condition hard to acknowledge. Keep strong Lottejemma we are here for you and you are not alone. 😘

[DeniseLB]

Hello to you too.

I was first diagnosed with Peripheral Neuropathy and they only changed mine to Ataxia after tests, but both conditions are so alike. It is very frustrating and I suffer with everything that you have mentioned. What will help you with balance is to have some Physio just ask your GP. I had three months worth at home and I walk so much better because of it. I use a crutch for balance although I did start with a stick but I kept dropping it! I could not get on with a walker and found I kept leaning forward and that just makes your balance worse. You need to concentrate a lot more than you did before and only try to do one thing at a time. In the early stages I pretty much knocked over or broke anything that I touched and I got very angry at myself, which of course made everything worse. The first thing you have to do is forgive yourself everything and it really helps and just treat everything like you are doing it for the first time because in a way you are.

You take care.

Denise xx

[M1tz1]

My heart goes out to you, lottiejemma. You're in my prayers.

[Veteran250 in reply to M1tz1]

Hi Lottie..... I have all of the same problems as you, I am the same indoors as you, holding on to furniture and walls etc, falling over, which I have become practised at now.....but I cant answer your question..... I used an electric wheelchair when outdoors and around town.

🤨🌹

[ddmagee1]

I am so sorry to hear this has become such a problem for you! I can relate! I have peripheral neuropathy in all four limbs, along with balance issues.Each year, it gets a little worse. This winter was the worst winter I've had. I just couldn't take the extreme cold. My fingers would have shooting pains, whenever I went out in weather, below freezing, for more than 10 minutes. Also, this year, if I lean to far forward to pick up something, or for any reason, I lose my balance, quickly, and once that happens, and I start falling forward, I can't stop myself from falling. I didn't have that problem before. I use a cane, but in the winter, with a lot of snow, that doesn't work too good. So, I have been diagnosed with Cerebellar Ataxia, and Parkinson's Disease. My heart goes out to you. It is very difficult to deal with all those issues, especially if you don't feel you are getting much support from professionals in the medical field. I have support from my family, but, in the long run, I am the one that has to deal with these issues all the time, so I try very hard to have a positive attitude, and don't dwell on what I can't do, but, instead, try to find ways to cope with living with balance, numbness, etc. Issues. I try not to get too anxious or depressed, and have found that listening to music, or watching documentaries, or movies is therapeutic. Range of motion exercises, and stretching, and some walking, are must do daily routines for me. A really big help is having my "emotional therapy" small pets! We have a Himalayan cat, and a Bichon/Havanese Mix dog! Good luck to you! I hope you will be able to find a way, to make living with these difficulties, a little easier for yourself! Thanks for sharing! There is always support here, in this forum, on Ataxia, by healthunlocked.com.😃

[lottiejemma in reply to ddmagee1]

Thank you for those beautiful encouraging words, I have tears running down my cheeks reading your post, but they are tears of Thankfulness, that I am not alone, and you with many others Care and understand, Oh it is a huge family we Ataxias Have, The support is amazing love ---- Lottie

[Litty]

Great replies from everyone. But we all get fed-up (sorry - but we so understand and have all been there).

Although it does not always work I try to remind myself what I can still do, and I am still here x

[february]

Dear Lottiejemma, Ataxia (or peripheral neuropathy) is VERY frustrating and challenging! My heart goes out to you! Especially since it's a progressive condition. I've had ataxia 20+ years and just found out (in 2017) mine is due to Niemann Pick C disease, after years of thinking it was Sporadic Cerebellar Ataxia (unknown cause). I find physical therapy has been very helpful for me (I live in the USA and we call your 'physio', 'physical therapy'). I'm assuming you live in the UK? Anyway, your message is not 'all about me' of course! Try to concentrate on what you can still do, not what you can't! Please remember, you are NOT ALONE in your journey! My best to you..., ;o)

[lottiejemma in reply to february]

thank you so much February --- I live in Scotland UK--- I like the sound of Physical --- rather than Physio, love from ---Lottie

[Rezzy3]

Hi Lottie, if I didn’t know it, your description sounded like you were describing me. Although I am 25 years younger, I’ve gone through everything you described. I’ve fallen and got stitches for a concussion to accompany a broken arm. I’ve spun around and torn my acl and that’s what led me on a path to find out why all this happened. You will go through many different emotions about how you feel. Frustration is only there because you “used” to be able to do things.

Stay on this forum and let everyone know what you’re going through. I joined only a few days ago and this is better than anything a doctor can tell you. Little accomplishments will put a smile on your face. Walking with a cup of coffee mad me the most frustrated. Yesterday I did it without even thinking and didn’t spill a drop. My wife rejoiced with me. It was a good day.

Stay positive.

[lottiejemma in reply to Rezzy3]

thank you Rezzy, it is good to know that I am not going Mad !!!! L O L , although this Ataxia would make you feel mad at times, ,Then --- ah Then, we manage to walk with a cup of coffee, and Yippy we feel the wonder of "A MIRACLE" -- it is a case of --one day at a time Hugs , Keep safe, enjoy the "Good times " and stay on this site, as we are like a big family, supporting one another GOD BLESS Health Unlocked