I have fallen three times in the last hour,the last one the worst I didn’t want to fall on my 6 month old so I fell backwards on my arm hurt so bad…Just yesterday leg gave out about twice a hour…they keep telling me that it won’t get worse but it feels like it is can’t take a shower anymore I close my eyes and I feel like I’m going to fall backwards so scared of carrying my 6 month old…guess I’m just venting and scared of falling on my little guy.

Vent all you need to honey. That's what we're here for. Of course you are freaking out a little. Falling is bad enough but when you had to worry about a baby too ? Wow, you are my hero. I can't imagine trying to take care of a baby now and I'm not even all THAT horrible yet. All I got is try to rest as much as you can. I'm wondering if you could get one of those really small lightweight strollers with just the cloth seat to take the baby around the house, and when you need to get the baby, sit down first and take him/her out. I don't know :(

Tessa what a brave woman you are with all you have had to put up with, i admire you so much. I dont realy know what to say other than i am thinking of you and hope you feel better soon. Punk

Hi Tessa. I fall quite a bit which is getting worse. Last time I knocked myself unconcious and woke up in a pool of blood. Last week I fell in the bathroom and bruised my back and my dignity. But to go through it with a small baby. Wow you are amazing. I can,t stand in the shower either and it's getting worse even though they say it's not. Keep smiling xx

For years I didn’t say anything because I was scared it was a brain tumor causing it…I used to get these extremely bad head pains. I finally.said something to find out chemo damaged my brain…I read mri report from a neurologist who didn’t care and he explained symptoms would not get worse and I’m really not that bad… Thank you all for the kind words I just feel kind of lost been trying so hard to convince everyone it’s not getting better. My dr told me why I can’t drive…I have mini seizures and I lapse plus my reactions are very slow. My three year old is going to play hockey soon I won’t be able to drive him to any of his games I’m just waiting for somegood news hoping…

Hello there Tessa

Really you are a star!! Babies are really hard work when you are fit and able. Mine are grown-ups now, but I remember how exhausting it was. Let it out on us as much as you can. Because you are tired and stressed your ataxia will be worse. I am starting to wobble more and my walking poles are not always safe when I am tired, so I have started using my wheelchair (bought for days out) as a walker in the house, when I am wobbly. I think 'pricessoffire's' idea of the stroller as a walker is great. If he can look at you too, he will soon learn to love it. Sleep at every chance you get too.

Good luck and keep us posted please XX

My Ataxia started after surgery that had post complications which had an adverse affect on my vitamin levels and triggered hereditary Ataxia. I cannot drive, have numerous falls and am clinically depressed. The medication that I take for depression makes my Ataxic symptoms worse. All I want to do is sleep and stay in bed but I work full time and am the only breadwinner and I have 3 kids 2 of which have autism.Sorry, rant over. That feels better

I would not be able to shower without two grab rails/shower seat.

Baby buggy sounds good idea - safe place for baby.

You certainly have my admiration.

In UK, the answer would be to ask GP to send social worker to assess needs - would that be appropriate for you?

I bought grab rails from ebay - the need to be removed and surface cleaned once a month to treat limescale.


Take care, Patsy

You can just phone social services yourself as they cannot refuse to assess you if you are registered as disabled. Hope this helps x

Beverley this is true. But you have to watch it with them. Tessa is doing a great job with her kids. I just went to court because my nasty ex said I could not take care of my 13 year old son. Because I fell all the time and I had ataxia. Social Serices asked me alot of questions. Of course I lied becase I didnt want my child to live with his nasty father. When you have little ones you have to watch it.

Beverley said:

You can just phone social services yourself as they cannot refuse to assess you if you are registered as disabled. Hope this helps x

Hi Tessa

Vent all you want. Ataxia sucks and you are working very hard. In the shower I stand away from the water. ( backwards I guess) Because I cant close my eyes. I would fall. Keep venting on here . It helps!

Hi Tessa,
My eyes are filled with tears of admiration for you. The ataxic symptoms robs us of energy, dignity, and mental peace. To care for your loved one amidst odds is not at all easy. God will,grant you strength to tide over this situation and my good wishes to,you. Stay strong and hope sustains life.

Thinking of you Tessa.Thought my two were exhausting but that was before I had Ataxia.I hate the shower too .

Thank you so much all it’s so nice to see your kind and encouraging words it really means a lot to me .

Tessa, it sounds like you are one tough cookie! I have to think you need some tools (walker, wheelchair …?). It was really hard for me to finally get a walker and a shower seat. I feel so much safer now. I should have gotten them years earlier.

I’m praying for you! :slight_smile:

Dear Tessa,

You are a gem !! Falling backwards is my biggest problem from the start. I have had it for 11 yrs.

Several Falls but usually saved by walls- furniture often ( I'm falling for people ,ha )

I have gotten a walker last mo. but even now I can't bring myself to being seen with it. Using it here at home I see any amazing difference . I walk straight and feel secure . I don't have a chair in the shower but I should but haven't gone ther.

I thought it vanity (why I resist these appliances so much) . I told my physo. therapist that it's because it is admtiting

that I"m not going to get any better. Denial & stuborn . That is tough for me. As he said "a broken hip will make that decision if I don"t" .

Well my dear for you and your baby etc. (walker & seat are a sound issue for you.

God bless You , keep up your execelent work.

Lassie Elena

I was surprised to hear your legs give out too. My knees simply give out and I go down ,

I understand what you’re dealing with regarding having a baby. When my daughter was your age I started having her in a playpen near me while I was lying down so I was able to interact with her but still rest. The idea of the lightweight stroller for inside the home I believe is excellent and I wish I would have thought of it myself. My daughter who is now almost 28 grew up helping me and she now is very comfortable with those who have disabilities. For many years I have needed to keep one hand on the wall while showering to not lose my balance when I close my eyes. I am 61 years old and I’ve had cerebellar ataxia my entire life. For the first 31 years I thought I had MS but that was clarified and changed to ataxia back in 2002. I have chosen to keep my life simple, I take many supplements including lecithin that really helps the tardive dyskinesia and I have chosen to have a positive attitude in order to keep my stress level down. Because I’m only getting weaker and less able to do what I would like to do, I make sure to live each day to its fullest letting go of noticing and missing what I used to have in my life. Eventually I will be completely dependent on others so I want to make the best of each day that I’m able to do anything for myself.
Tessa, I wish you all the best!

Hi Tessa, I think that falling is one of the biggest dangers that we who have ataxia face, and we face it many times a day. It has been helpful for me to go to physical, occupational, and speech therapy. They helped me realize that I have a certain amount of energy to work with on any given day, and this will vary depending on circumstances. But my biggest area of control is to “spend” my energy wisely, especially to pace myself, and to avail myself of all the tools that I have to make each task easier. So I swallowed my pride (a huge mouthful, because Coburns do NOT ask for help), and began using either my walker or walking stick when moving from room to room, or across the room. And I am happy to say that I have only fallen once in the last six months! I also agree with others who have posted about getting rest whenever you can, esp. since you have the baby to care for. I use a seat and grab bars in the shower, and use the handheld shower head to wash my hair while sitting. No more falls in the bathroom! I need my walker whenever I go out, and I have learned to be very grateful for it. Perhaps you could even put the baby’s carrier on the seat of the walker, and move from place to place that way. For me, the handles of the walker restore my seance of balance, & I feel almost my old self while walking.

I do admire you for your courage in caring for your little one, and wish you the best. I hope you can find some good solutions to your challenges here. Lorinn

I understand how scary that is for you! Your not alone in this! I myself have freaked out before because of feeling the fear of falling.

I got the opportunity to work with Dr Tom Clouse (he has learned how to function well with ataxia also). I talk to myself and remind myself of his words constantly so now they have become my own in my head. As I’m walking or standing holding my Grandchild (I have to focus and make sure ahead of time when I’m actually going to do this) that I put equal weight on my whole foot not more on my heals or my toes (because Ill fall off balance). If I do start to fall I notice where Im not placing my weight like I should (like too much on my heels etc so I readjust and that stops me from falling). Then I focus on putting my weight of the rest of my body in the center too. And actually lead with my knees not my feet in the direction I want to go. I know this sounds funny but try this I think you might be surprised at your results. It makes a huge difference for me maybe it will for you too!

I think the more tools we have (little tricks to help us function even a little bit better is great. Hope this helps and then the fear will go away too!

I think we seize up and walk stiffly because we are afraid of falling.I do.