My father has recently been diagnosed with Primary Progressive MS, he is struggling to come to terms with the diagnosis after having many years as a fit and healthy father and grandfather.
The symptoms have happened over the course of a few years, his walking mobility, the tremors in his legs and Clonus.
As a family we are very ‘blind’ to MS, how to come to terms with it and how he can live the best possible life.
My parents home is already up for sale in order to downsize to a bungalow where my father would be able to move around better with ease. We have also looked at mobility scooters, any recommendations on these would be most helpful
I have been doing lots of research on different CAMs, but i seem to be hitting a brick wall with most things.Magnet therapy was one that came up often but with little success.
I would appreciate any advice on the above, like as stated, this is all very new to us as a family.
I’m sorry to hear about your dad and the way it’s affected you all. Doing the bungalow is the first big step.
It will make a huge difference. So will a mobility scooter. If your budget and muscles are up to it, I’d suggest a roadworthy vehicle with lights etc and a small foldaway one for putting in a car.
Mentally, these are big steps but any aid to help maintain a normal independent life will have a positive effect. Whilst I know nothing about alternative treatment, I’ve found diet to be a big factor in feeling well. I’ve had PPMS for over 30 years. It’s no good trying to fight it but it’s better to play it and out-think it. That’s how I view my wheelchair and ground floor level man cave.
I’m no expert, just someone with Primary Progressive Multiple Sclerosis. Diagnosed in 2013 & told I’d had the problem for 10+ years already, judging by the damage & medical history.
I steer well clear of medication & eat healthy. Doing as much light exercise as possible. Use it or lose it, is a motto I use. Once limbs are not used, they deteriorate much quicker. Fresh air & the outdoors is where I find my cure.
The heat & cold are problems. Keeping a regular temperature is where things improve.
Green Tea, Green Veg & sleeping on a green pillow.
Don’t get too stressed & take it easy. Enjoy life!
Hi Amanda Sorry to hear about your dad. Getting a diagnosis like this is devastating at first and most people go through the grieving process just like you would if bereaved. The futures we had planned for ourselves has just been torn away. Love, patience and support are what he needs, from yourselves and the medical team. Your MS nurse can answer many questions, if he hasn’t been referred to an occupational therapist you can self refer through your local adult services. They’ll come to the house, assess his needs and make suggestions and can get equipment installed. I could go on forever but those along with my neurologist and GP have really supported me. If he’s struggling, an anti depressant might be helpful but each person is different. If you want more info, most of us have different tips so don’t be frightened to ask. Good luck. Cath
I am recently diagnosed and am in the time span of 6months between a 99.5% diagnosis of ppms and next appointment have read up and am cutting out all favourites like dairy and sugar I used to be a pastry chef trying to accept life as it is still relatively mobile but suffer from fatigue ant advice would be greatly appreciated alicia
Having been diagnosed with ppms in 2014 i have almost got my head around having it. I have met others who have had it longer than i have. They both use a walker in the home and mobility scooter. One of them is my age 52 and other lad is early 40s. The older guy did say to get things done in life before i ended up like him… slowly i am getting worse as i am now using crutches to walk. Not got my head round using a wheelchair or scooter full time but i need wheelchair for airports and shopping centres. My advice is to stay out of wheelchair as long as you can… go for walks on beach, if you fall its a soft landing! I swim as often as i can as luckily my arms dont suffer but my legs dont contribute much. Diet has changed but i still have a pint or 3 which doesnt help symptoms. Imm lucky to have a wife to keep me active but the 2 lads i know are now single and without support i think i may have been in a worse condition. Im gonna try cbd oil as nothing available from nhs im afraid. Not sure what it will do but if it takes a bit of the ache from legs im happy. Or stops the muscle in my shoulder from twitching all night long stopping me from sleeping…arghhh…so annoying. Anyways…stay positive, get an automatic car, keep active even if fatigue sets in, rest then start again. Not that i do but i keep saying i will!