Hi everyone,
I am curious to know if - what has happened to me - has happened to you as well.
In August 2013 I was diagnosed with SCA1 in July 2015 I started using one crutch in June 2016 I got an indoor walker because I was falling at night when I went to toilet, etc.
Now in May 2017 I can't balance well and am wobbling on the crutch. Plus I get jerks in my ankles and the my legs give way.
Is this normal?
Thanks in advance for all your replies.
Hello there
I too have SCA1. I am having a lot of trouble with my knees. I had a fall onto them about 8 weeks ago. I was lucky not to break anything but they have been really sore. My physio said it would just take time! Not a patient person but it has knocked my confidence and I am frustrated because I want to be like I was. When hurt ice, raising and rest good.
I think all you can do is make them as strong as you can and try to relax. The bottom of our stairs is a good place to practise on one leg. I think the exercise bike helps too (cycling backwards is good). I use a walker but it it high, you to try and be upright, and just hang on if you lose it. Oh try and go backwards and as fast as can on the flat.
Its annoying but you have to try and keep pushing yourself when healthy! : )
Yes, all those and that progression. A 3/4 wheeled walker helps. To alleviate "jerks" try doing some walking exercise as soon after as possible. Try not to be embarrassed by using a 3/4 wheeled walker. It is an overtly visual clue what is going on and gets massive help from others. Better than a hero bandage.
With SCA1 you will deteriorate, so prepare for that day. Stair lift or bungalow, wet room and 3/4 wheeled walker. Helping hand grabber is also very useful. All via OT.
Hi Amynah, I went from working, freedom, to walking stick, medically retired, wheelchair, and will shortly be getting a power chair.....have balance problem and often fall over indoors.
Hi Amynah,
yes exactly the same for me went through them all over the years, each year a bit worse than the year before, been in a power chair for the last 6 years you've just got to make the most of things take care.
Hi Amynah
I totally empathise with you.
Having cerebellar ataxia (diagnosed with ataxia in '93/'94 - genetic but not specifically identified as yet & may never be!)
Ataxia is horrible but we have no choice but to get on with it!
I used a walking stick for a long time but it wasn't enough (too wobbly) so I then progressed to two sticks (i tried crutches but they were no good for me. I even used a quad cane which was useless for me).
Two sticks were still insufficient. I now have two walkers. One with 4 wheels & one with 3 wheels. I tend to use the 4 wheeled one more as it has a seat. I use both inside & outside for very short walks ie in the garden. For long journeys I use a scooter or wheelchair.
The walkers are invaluable. They give us more confidence when walking & more independence. You may find the walker helps your instability as your weight is more evenly distributed.
Try to sit up straight & wait for a few minutes before attempting to walk, especially when you have been led down. I find it helps with equilibrium. Might save falling if unstable but do ensure you keep using your walker.
A walker doesn't stop falling 24/7 but definitely helps. If i do fall I just go, as there's no way of preventing! I definitely feel more stable using my walker though. Using any equipment isn't giving in just assisting!
Keep smiling 🤗
Thank you all for your replies, I certainly feel better about progressing from Crutch to Walker.
I have an appointment with Dr.Paula Guinti on Thursday and will discuss my situation. Do you have her as your consultant.
I also wanted to know from you all what exercises are good? I was looking at my ataxia file and noticed that from 2013 December until March 2017, I have had 5 physio therapists and they all have given me different exercises. Every physios seems to think that I have a 72 hour day and can do what they suggest.
Al I would like is to do a few things everyday that work. I was constantly tired and in pain, so last week I did not go to gym and today after 10 days my knee and body pain is less.
You all have more experience than me, can you suggest somethings that have helped you?
Also the Speech Therapist gave me so many useless exercises - I read somewhre that reading loud is good - So I just read at the top of my lungs - and do feel tired but my voice is not too slurred yet.
Thank you again - I don't know what I would do without: healthunlocked.com
Walker/wheelchair
Late Walker Discovery
Visit to the Neurologist
Knees 
