Hi I am new to this forum so please excuse any mistakes,my son who is 30 has had really severe balance problems now which has progressively got worse over the last 4 months he has tried a walking stick but this makes him worse he flatly refuses to contemplate using a walking frame even though he can walk and feels better balanced when in a supermarket with the use of a shopping trolley .my heart is is my mouth when I watch him struggle up our garden path nearly falling into the hedge or over balancing the other way. He cannot walk more than30/40 yards now without feeling exhausted imjust worried he might have a really bad fall he is due to see an ms specialist at the end of may with a view to getting a diagnosis for ms he has been bad for 15 months now .this last three to four months he just basically stays in watching tv and everything I suggest the only answer I get is it’s pointless or there’s no point is there anybody else out there experiencing really bad balance problems or any parent caring for their son/daughter who can give me some advice I’m also worried about the side effects of steroids if he has to have them and do they work x
I can sympathise with all your sons problems I started by using trolleys to help at the supermarket and now use crutches to get around as I feel much safer and more stable with them having used walking sticks till about 2 years ago. It is really tough trying to get motivated and I have had many other issues to deal with without my diagnosis of MS 5 years ago.If your son wants to talk I am happy to do so it may help or if you want to please let me know. I am 50 and have been getting worse since 1995 when I started with numb feet and toes and a lack of feeling in both legs.
All the best
Firstly it would be wise to wait until your son has had a diagnosis and to find out if it is MS and then which type of MS.
My wife has had this condition for over 30 years now and whilst in the relapsing remitting stage was treated with steroids. They do have potential side effects and many doctors disagree over the merit of using them - some say that over a time period of 3 months'ish there will be little difference in outcome if the person hadn't had them. However having said that your son may prefer to have them to speed up any initial boost if his symptoms are unpleasant enough.
One of the problems of having walking aids/wheelchairs is that once you have started down that road it is easy to become dependant on them before they are inevitable and I would encourage his determination to avoid them for now. When he really does need them they will still be there waiting.
Hope this helps.
First of all, welcome to our site, you'll find we are all very supportive on here.
Like your son, I have severe balance problems also and have had no let up since this started 2 years ago. On a bad day I stumble over 200 times a day. I have to use a walking stick now but have also experimented around the house with 2 sticks and shopping trolleys can give an insight into what things might feel like with other devices such as rollators which I am now considering investing in.
One thing which could be very useful to your son is to keep a balance diary. I record every day the number of stumbles I have and what I have been doing - e.g., if I have been home all day or if I've been shopping in town etc. I also found as I was much worse on my left side, recording the number of stumbles to the left and right can help his specialist identify any patterns. When I last saw my GP he actively encouraged me to keep up a diary and I take it to every appointment I go to.
Keep in touch and let us know how you get on. As you are new on here, did you know there is also a private message service? You'll find it on the forum page. If you ever want to talk to me privately, you can private message me any time. If using a stick makes your son worse, it could be that he is using his stick on his bad side - I was told to use my stick in the right hand as my balance is worse on the left side - even though it goes against my instinct to keep it in the left. This is where the balance diary would help. I just use a page of A4.
Good luck. Take care.
You have all been so kind and helpfull I will mention the diary to my son thank you he gas just recieved the higher rate DLA and med care component so this is a start I’ve applied for a blue badge now