I can remember my MS nurse telling me how unusual i was when i was diagnosed with PPMS as i was so young at the time (17) … i bought my first wheelchair 8 weeks ago (aged 25) so sadly, it is’nt a Myth for all of us 
Jemma
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quote whammel and Steve Snore:
“I’m grateful for having a normal childhood and adult life until things were starting to show”
My first post … Hello all.
I could not agree more. I’ve had a fantastic, a wonderful life. For a number of years I was even paid to ski all winter! So it turns out that I’ve had MS pp for years, without knowing it - now I know the symptoms so much is obvious, but frankly at 70, what a bit of luck! I reach my “sell by date”, seem to have survived cancer, hip replacement under local anaesthetic and to have recently had my first book published internationally - albeit by a sloppy publisher who appears to be both dislek… dislik… dyslexic and to suffer from crippling Financial Alzheimer’s, (I understand that that’s simply “par for the course” these days).
In short I have zero to complain about! I had indeed noticed that life tends to be fatal and that something was going to get me in the end. The thing certainly is to make the most of every moment to try to be kind and to enjoy! I reserve my great concern for the young who are stricken by serious illness and take inspiration from many of those young people who I met in radiotherapy who still seemed so full of life, and happy.
I agree about the difficulty of standing still, that’s a bit of a killer, but I think back to my wonderful father who had Parkinson’s disease and who could hardly move except when he waltzed around his room, then there was no stopping him! Maybe I should take up serious tango dancing? I’m in Paris so why not? As my head teacher would say on raising his cane “Shut up boy, it’s only pain”. How right the old buzzard was!
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I flew my first (used) mobility scooter as free luggage back from Manchester to Paris this week and have had a terrific time out in the freezing cold and March snow discovering the utter liberation, and that Parisians can actually be NICE to old crips like me! Good Lord… That I should see the day! By the way, hats off to ‘Flybe’ and to both Manchester terminal 3 and Paris CDG for their really generous, enthusiastic and kindly help.
I knew that Paris CDG was good, but Bristol airport had all but put me off flying forever. The management at BRS should quite simply be removed, binned. I don’t mind laughing at myself, but (and not for the first time) to be refused the booked wheelchair and refused the use of a trolly to prop myself up on, and then openly and wantonly laughed at by two spotty members of staff as I attempted to waddle through security, was an utter and surely sackable disgrace.
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Welcome to the group those of you new to the forum. As you’ve probably noticed we have lovely people here who understand and cope with all the unusual symptoms we get. This is a nice place to visit no matter what kind of day you’re having. I hope you get as much support and pleasure from the group as I have over the years. Thanks to them I reached the “I can do this and smile, there are a lot of people out there worse off than me” attitude that keeps me positive quite early after my dx.
Cath x
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Welcome to all the new people. I am having a really rough time at the moment. First time it really has been this rough so I should be grateful. Without my friends on here I really don’t know where I would be. Honestly. I am not religious. But. Bless you all or similar words. Von. I like you have been upgraded. Initially I was told I had Rrms. After a few years the docs decided their initial diagnosis was incorrect. It was changed to ppms. So we are team mates (she said holding out her hand). ANNE
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I’m sorry Anne, and concerned to hear that life has become so tough for you. Life has hit me with a whole series of “whammies” too recently: arthritis, then cancer which turned out to be masking well set in pp ms. To add to the fun I’ve just lost my mother, my mother in law and two weeks ago my dear younger brother to a brain tumour. Keith was a terrific man, gentle, charming, a very talented musician and extremely funny. Above all he was both funny and serene to the end bless him, he knew just what was coming and yet was at peace with the world, and such an inspiration really.
I think we simply have to make the most of what we can still do and ease the pain as best possible. I live in Paris where French politicians still have to grasp reality and understand that for MS sufferers cannabis based drugs are proving to be a valuable form of pain relief - the French usually are 10 years behind the rest of the world and even say so themselves. In fact they’ve just sent an MS sufferer to prison for having a very few cannabis plants for his own use. Maybe I should make a point by joining him. I’m just seeing a big project to fruition so maybe that could be my next mission? My legs are hell too, the only relief seems to be hot baths at 02:00 or 03:00 am and another at 07:00.
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