My 17 year old son is missing school due to ataxia episodes, he has never fallen, but stumbles a lot and walks leaning on walls to keep himself upright, Between episodes he is fine. He is doing year 12 (we have opted to do over 2 years due to missing school) and this morning I had to drive him to school as he was stumbling all over the place as he was trying to navigate our hallway. I am tempted to buy a folding walking frame he can keep at school so he can get to classes when he is "wobbly" and stay at school rather than the school ringing me to get him. My issue is by him using a frame are we only taking away more of his ability, Is struggling to do what he can better for his long term mobility than helping him with aids?
History
Diagnosis of severe sleep apnea July 2015
neurologist suspicious of episodic ataxia, or similar August 2015
Due to untreated sleep apnea we have not run blood tests, and the decision was 3 months on cpap to see if the sleep apnea is causing the ataxia. So far see improvement with cpap, in other areas, but not the ataxia.
His ataxia is worse during school term. Both at home and at school.
Episodes last from 5 minutes to a couple of hours.
We have had MRI, but it showed nothing. Dr wanted to wait on blood tests due to sleep apnea. See if improved with treatment. Due to cost of testing and possibility the lack of stage 3 sleep may be causing the ataxia symptoms. The issue is we still have lots of ataxia episodes. He wont go for his licence, he wont ride a bike, he has had wobbly attacks crossing a road and in the pool. An episode means he cannot walk without using a wall to keep upright. He is constantly tripping and cannot walk in a straight line. He sort of swings his leg around too in a circular motion, and sometime he has a gait a bit like a goosestep. I thjink a walking aid may allow him to stay at school for longer, but I dont want to make him worse.
I would do whatever he needed to help. If a cane will keep him in school then I would do it. I would have him go to physical therapy (one that deals with neuro patients NOT orthopedic) and they will get him whatever is the best suit for him.
Hi Pudel:-)
These ‘worse episodes’ could be stress related. The situation can’t be easy to manage, and he’s using a lot of concentration, both on keeping himself safe and keeping up with his studies.
Whatever tests are in progress, in the short term he has to be confident about moving around safely. Try him with a lightweight rollator, rather than a walking frame. Before you actually commit to anything expensive, search for local companies who may hire aids/equipment:-)xB
Go get your boy a 4-legged walking aid. I have been using one on and off for years. It will make him feel secure and get him where he has to go by himself without the help of others. Independence is a major thing, even more so for people with ataxia who have to ask a lot. To your boy: GO for it son!