I have an appointment later today with a neuro physiotherapist and I am not quite syure what to expexct, I am guessing its a bit like standard phisiothearapy but for people with neurological conditions.
Has anybody else been seen by a neuro physiotherapist and what went on?
Hi Jon, I havenât seen one but have read posts where people say theyâre fantastic.
Yes I think itâs a bit like normal physio⌠but working on how the brain has affected the body rather than muscles.
Anyway be interested to know how it went.
Pat x
Hi Jon,
I had a massive relapse when my second child was born and was diagnosed pretty quickly. My neuro sent me for neurophisiotherapy. I went once a week for 6 months. I could not stand for more than 4 seconds without falling over (they timed me!).
I went through exercises at the appointment and then she gave me some to do at home. Make sure you do them as it wont help you if you dont do them regularly. Repetition is the key .
From what i understood is that by doing these exercises you could re-route the nerve pathways to help you with your particular problems. Different exercises to help with different probs.
Donât worry - the exercises are not too physical.
I had bad balance/extreme dizziness.
I had to do things to strengthen my core.
some examplesâŚ
walking up and down a small set of steps repeatedly.
looking left and right very quickly then stopping to focus and see how long it took for dizziness to go. should improve the more you practice.
walking heel to toe down the room and reching to sides to see if i could balance myself without wobbling.
used a gym ball and did reaching exercises on it to push my balance a little more each time.
balancing on a wobble board (i fell off every time - lol!)
The idea is to challenge your weakness. Feels horrible to do this at first but it did help me.
Feel free to ask if you want to know any more.
Best wishes
Teresa.x
I am just back from my triage appt which was quite strange, she tested my walking with and withou my quadraped and then tried my walking with a sorta staff. She also tried these fancy shorts that I could wear under my trousers but they were too warm.
She didnt give me any exercise to do but will be booking me in for the excercise groups when they start in Sept.
Well done you for going⌠and in this heat!
Hope the exercise group helps⌠if nothing else, itâs something to do and meet new people.
Pat x
I too have an excercise group starting September Jon, mines in Kent though. I had several 'neuro rehabilitation physiotherapy sessions, and was given some helpful things to practice doing, mainly addressed my dexterity which helped, so hopefully the excercise classes will help with my overall balance and co-ordination.
Hi everyone.
I was diagnosised with PPMS in nov last year. I have actually sufferd symptoms for around 18 years. I got fed up with doctors saying its just stress or anxiety. As soon as I was diagnosed everything fell into place. All the text book symptoms I have and they just get worse year after year. I spent so long struggling with work and just daily living really . I was told so often there was nothing wrong with me that I thought I was just fat and lazy and thats what I convinced myself that others thought of me too.
When I was diagnosed the specialist told me that steroids are used to help some ms suffers but this sort of ms wont respond to them. No offfer of any other meds thoâ just a referral to the MS Nurse.
My MS Nurse is lovely and I can ask her anything but I only see her every 3 months and all that seems to take place is a chat. I have been waiting for a referral to the urology dept.At my last appointment she told me that the referral hadnt been done and now Ive waited another 3 months and thinking maybe it still hasnt been done. feel a bit invisible sometimes. Went to physio once. was told that my balance and eyesight were too bad for them to offer me any suitable exercises etc. No further appointment!
Another thing Ive noticed is that PPMS is not really widely known about. People think there is only one sort of MS. i.e. The other day I used lloyds tsb interenet banking site to get a quote for travel insurance. I needed a quote for insurance that covers exsisting conditions. This site has a drop down menu from which to choose your condition and when I choose MS I was asked questions about relapses etc. Needless to say I didnt bother with their insurance as I cant see how they would evaluate a claim for PPMS related issues based on the questions they ask. I am in the process of writing to them to let them know about the other forms of MS, Nicelty of course. Iâm not one to push myself forward which doent help me sometimes. Does anyone else get this â invisible feeling too?
Iâm sorry about whinging on. thanks if you manage to stick it out to the bitter end.!
Gill
xxx
Hi Gill
Just wanted to say hi and welcome to our elite little âgangâ of ppmsers,
a friendly bunch with a wicked sense of humour.
Hope to see you on the forum again soon.
Pam
Hi Gill and welcome to the forum!
Unfortunately you have posted as response to another post so might not get a lot of replies (easily done!)
Go onto the Primary Progressive page (where you can see the titles to all the PPMS posts) and click on ânew postâ⌠and post again.
We LOVE having new members on here! I would have sent you a private message but you posted Anon so hope you get this.
YES in answer to your post⌠us PPMSers often get overlooked. We only represent about 10% of people with MS and often (though certainly not always) are in older age group⌠so overlooked because there are not many of us AND because we live in ageist society⌠well thatâs my opinion anyway!!!
Hope to see you on here again,
Pat x