Come back everyone I miss you, I’m the first to ‘post’ for Progressive MS today!! This is not good where are you? I’ll end up ranting and rambling again and you know I will. Have I mentioned recently MS sucks?
Have a good weekend, M
Hi Sarah, i`ll be checking in here regularly too.
luv Pollx
Can I join you please?
DX with PPMS 3 weeks ago and have been posting on this site since then. I do get a little depressed when I read that PPMSers are a forgotten breed as I hope I still have a life to lead even though my walking is pretty much gone. Id like to think I am not on my own when it comes to getting support!
I have my first appt with an MS physio on Tuesday and a MS nurse appt on the 25th. It sounds like I have been quite fortunate so far, but not sure where it will go from there.
Look forward to fighting this physical and emotional rollercoaster with you guys.
Tony
Hi there,
Yes, you’re right. I’ve been looking in on the everyday living forum because there seems so little activity on this forum since the change. We ppmsers know that change is not good and I guess the forum change reflects this with the ppms site. We’ll get back into gear in time. This forum is a real help since this disease is so complex and nobody else seems able to understand. Am in purgatory since last Thursday with crappy nerve pain and losing my patience at this point. My darling dog sits with me everywhere I am and gets up in the night with me to keep me company. What a pooch! Hope you’re all managing. Don’t despair of the forum, we need each other
Ciao
Lucy
good day everyone, why moan or complain about being 1 in 10,000 or so in G.B. or indeed invisible, are we not special then, anyone can get MS, but we, the PPMSers, are a rare breed, let us be proud of that, we are the chosen ones, brian
hi all u ppms sufferers x i have just rejoined site 2day after many months of thimking i will! 2day a message caught my interest re walking as silly as it may seem i found it rather comforting! 2 read i am not alone there seems to be rather a lot of us suffering out there with our walking just like to say i hav got a motorbility scooter its b dy wonderful! if any of u r thinking of getting one please do because if its a choice between walls and wheels i no wat i prefer! please let me no if any of u fello sufferers use one and wat u think about it r u embrassed? i sometimes do find myself wondering wat others think silly isnt it same as i wonder if people think im drunk coz i shuffle around sometimes
I went to Florida 10 years ago and noted the amount of Americans who were using these scooters at Disney. I remember saying to my wife that if I ever find myself in one of those then shoot me!
Little did I know that it may be the only way I will get about in the not too distant future.
Fortunately we don’t have a gun!
Tony
Hi Tony, only just read your post and noted your username…my grandson is called Oscar and he`s our no. 1 grandson!
Sorry if we on here have worried you with our comments. But yes, there is still oodles of life after a dx of PPMS. We may be broken, but we``re still very much here!
Some PPMS folk do find less meds/neuros interested in us.
luv Pollx
Thanks Poll,
My Oscar is a large white Samoyed (dog).
I have my first appt with my MS nurse this afternoon. My wife has had to borrow a wheel chair from where she works to get me from the car park to the appt as my walking has given up on me. I have been going down hill noticeably since the beginning of the year, but over the last 2 mths the change has been drastic. As I have only been DX a month I have no support network in place and it has all come very quickly. I have had the DLA forms for 3 weeks and I have been too frightend to fill them in as I dont need any more knock backs. I was told that the CAB had an advisor who would help, partially funded by the MS society, but this has been stopped.
I was told I had to write to them with my contact details so that they could give me a review over the phone.
Why is it made so bloody hard to get help when mentally you are all over the place when diagnosed with something that has changed your life, not in a good way, for ever.
I will take the forms with me to the MS nurse this afternoon and hope for the best.
Tony (Unimpressed from s/Glos)
Hi Tony
You are more than welcome it can get a bit ‘heavy’ reading some posts BUT there are a few of us who are a little mad! Who like to rant and rave/iight banter, scream at fate and use the occasional swear word at how much MS sucks. This may well be the place for you?
Take care, M
Welcome to “our club” oscar and good morning to all my fellow ppmsers.
Sun is shining and I feel good after reading Poll’s good news about her hoist.
Three cheers for “our club”.
Pam
[quote=oscar1]
I went to Florida 10 years ago and noted the amount of Americans who were using these scooters at Disney. I remember saying to my wife that if I ever find myself in one of those then shoot me!
Little did I know that it may be the only way I will get about in the not too distant future.
Fortunately we don’t have a gun!
Tony
Hey Tony,
You’re not the same as those people in America who have mobility scooters because they are too fat to walk. My legs gave up on me because I have this disease, I didn’t give up on my legs 'cos I couldn’t say no to fast food and cream cakes. This may be discrimination but I don’t care 'cos I would give anything to have my legs back and they can’t even cut down on their calorie intake, it makes my blood boil!!! You can’t possibly compare yourself to that. I know it’s crap but at least it’s a comfort to know that I didn’t do anything to make myself this way.
Ciao,
Lucy
Hi all sorry I’ve not been on 4 ages cos Ive had problems getting on!!! & even now I’m just a number not being computor friendly its the best I can do 4 now at least I’m back my name is Helen Iwas DX in 2009 with PPMS at the grand old age of 48 aint life a bitch?!
Join the club Helen or rejoin? It’s just like us to persevere through ALL trials, whether computer or health. Wellcome back
I’m going to try and wobble out for lunch on my own!
Take care, M
Thanks Lucy,
I am on the larger side of things but not that big.
Thanks for the support it means a lot at the moment.
Tony
I am undx’d but pretty sure I have PPMS, I do always look in here, but don’t feel ‘qualified’ to be in here yet. Hopefuly (is that the right word!!!) I will have some news regading my dx very soon! If I do get dx’d with PPMS, I will be frequenting in here.
Even looking generally on the net, there isn’t a great deal of info about PPMS, it’s such a shame.
Julie x
Hi Julie, you are more than welcome on here while waiting dx. It can be daunting enough waiting for dx of MS but even more so for PPMS. We only represent about 10% of MSers, so an exclusive little group! And yes, not a lot of info about it and not much research either.
Please feel free to post on here and ask questions.
Hope you get some answers soon. It really is so much better once you know what you’re dealing with.
Pat x
Hello all you PPMSrs,
I,m Back !!
Been in Spain and it has been wonderfull. Lots of warm weather, not to many steps to cope with. No cooking and may be just to many brandy coffees ! I have looked forward to this holliday so much. The best thing is i coped with my MS. Once i had to come down some steps on my bottom, but so what! This time last year i did not think that this holiday would have been possible. My insurance was very expensive but it covered all my MS needs so it gave me peace of mind. Still its good to be back home.
domesticgoddess
Jane xxx
So gald that you are back AND had a super holiday, ‘come down some steps on your down’ not enough brandy coffees!!
How resilent and brave are we? You know what we just are, we get on with living no matter what.
Take care , M
Hi everyone, i don’t come on here as much as i used to, i much prefered the old site as at a glance you can see if your buddies are online
i may be missing the obvious ways of navigating the site so like a lot of people that used to visit the boards i am not a frequent visitor anymore.
Mark.