No input to PPMS forum for 21 hours!!! Are we asleep or what? I know I’m just as bad but I thought I’d leave things for a while and sort out an eye infection that would not go away. Finally getting better after 4 different antibiotics, not on to moan just to explain.
Take care folks and have a good day
Hi all, not been on for a while as I have been having a bit of a rough time.
Walking has gone and now use a wheelchair outdoors. Drove for, I think, the last time on Saturday as my numbness has now got to a point where I cant feel my feet.
My numbness has now progressed to my left arm fully and now numb from the middle of my back down to my feet.
Its s real struggle to keep positive at the mo!!
Tony
hi i am un dx at the moment just waiting for the offical dx of my MS specialist.
and like others have said i look on hear every day but dont feel qualified to answer some questions .
but i do give my imput on posts asking about symptoms if i can relate to them .
but this does not get the same amount of posts as other boarsd do
regards mick
Hi,
Really sorry to hear you’re having problems at the moment.
Do you get DLA - higher rate mobility? I’ve just been in touch with motability who are arranging a free assessment for me to look at adaptations in the form of hand controls. Maybe you could consider it too - there’s loads of different adaptations available, most of which are free if you get them fitted at the beginning of your contract. I dread the time that I won’t be able to drive so can understand your frustrations.
Best wishes and loads of hugs!
S xx
We put the forms in for DLA last week and so waiting a reply.
Our MS nurse told us that it seems that we will get declined at first as this is how it is going at present. I am glad that my wife is able to handle these forms as I dont have the mental strenghth at present and get down at the thought of a battle with anyone let alone people who have a say in my future.
I have been off of work for 4 mths now (I drive for a living) and have lost the hope of ever going back and am on SSP.
I have only been dx for a few months now but have been undergoing tests for some years.
It is not related but I have gone from running my own business witha good income to being disabled and uncertain about my future relying on benefits in 6 very short years.
Life loves to kick you when your down.
Tony
Thanks Sarah, I know what you mean about the sane thing.
As I used to be in finance I have re arranged our finances to elleviate the immediate effects of going down to one income, but this will only be good for a relatively short time and so DLA is a must have and not a luxury.
I always thought that I was mentally strong in most areas of my life but when this thing hits you its like losing your mental personality along with the physical one.
I have expressed cocern in the past for others who are not able to cope with this, but without the help of my wife and some friends I would be in the same boat.
I have never been one to live in other peoples pockets and have a few close friends. I have proven that the friends I have chosen have been the right choice all along as even family have proved a let down.
Not a religeous person but the old addage of “God chooses your family, thank God you can choose your friends” seems to be spot on.
Tony.
Hi Tony, I too saw someone selling Mobility Scooters a few months before I became afflicted and said that I couldn’t understand why anyone would want to use ‘one of those’ if they had two perfectly good legs!
Well less than a year l8r, altho my legs still LOOK perfectly normal, they just didn’t work the same any more.
Also when I fetched my Dad out of hospital after he had a stroke I too said 'I’ve ever I get like that you can shoot me". My boys (ever the twits) said “Shall we do it now the?”
Best of luck, Ann
Hi Guys and Gals
As a PRMS devotee …I was gonna put sufferer …but wtf…Can I join your club ? or do I have to make up my own ?#
As a PPMS’er for over 3 years, could I join the club to!
Hi folks
Everyone is wellcome here, I tend to wobble and waffle not necessarily in that order but WELLOME. I had a sad loss recently my pc died damn it but I’m back so be warned
Take care, have a good weekend, M
Sad or what ‘come back’ is now on 2 pages!!! Do I need to get a life or what? Am I too flippant, I’m not sure where serious people go but it’s not here YES it is, I’m talking to myself now be aware of imminient daftness - I was going to say madness but that’s too close to the truth some times.
Take care, I hope you have a good weekend, M
Hi again Ironman… excuse my constant state of confusion… do you mean can you join the PPMS club??? If so the answer is a big YES! All MSers of a progressive nature welcome here!
Hope you have a good day.
Pat x
Hi all, nice to see this is a home for all and inclusive of strugglers alike.
Since reporting to you all about my decline I have reported to my MS nurse of the changes and she immediately got on to my Neuro who brought my next appt with him forward from next march to next week.
I know some have had issues with not seeing nurses and Neuros enough, but it seems I have been lucky with the help I am receiving.
I have been lent a wheelchair by the lions club, who are also willing to lend me an electric scooter so I can get out and about locally.
Had a letter about DLA asking why it did not get back to them on time. (posted on time received later than it should)
Whats with the time issue?
We took our time as my mobility decreased at rapid rate and if we had sent the forms back straight away it would not have been reflective of my state two months later.
Keeping positive.
Tony
Hi Tony
There are people out there with a heart and time to listen and help, I/we wish you all the very best you can beat this damn monster. It’s amazing what we think we can’t cope with any more and then we just adapt and continue on. Indomitable/brave/resilient etc but allow yourself time to be angry/frustrated and p*ssed off because MS sucks.
Take care, I don’t always check the site because my eye is giving me jipp but there should be one of our motley crowd around…M
When you say Monster do you mean the MS or the DLA people?
Tony
Hi Tony
BOTH, but the MS never goes away.
DLA, life is a bitch ‘they’ don’t understand the nature of the beast and its difficult to explain AND the time thing is their damned rules. MS has cognitive issues and is all encompassing HOW do you explain that!
Take careM
Hello , its me again
Been talking to my MS nurses and they told me PPMS and PRMS are so close to each other in progression of this “mill round our necks” , as
not to be not kissing cousins but more like an incestious brother sister relationship…ok I got the analogy but can any body explain ? When I did a web search the explaination was to vague or soooo complicate my nose and ears started to bleed ! I’m not confused just…confused ! IS there a differance ? Am I
gonna grow a set of horns ? Do you PPMS sufferes allready have horns ? HELLLLPPPP…but if my nose and ears are gonna bleed again , thats ok !
I hope everyone is having a “good” day and the rest of the week is good for us all !
Keep the faith Guys and Gals
Pete X
Hi Pete
How nuts are we? Very… I must say I think it helps, it helps me so we are a VERY selct group maybe it could help more of us. I cut my horns off with all the other cuts it didn’t even hurt. Together we can beat this hellish disease…
Take care, M
The difference is just a different cabin on the same sinking bloody ship!!!
Tony
Just a different cabin on the same bloody ship!!!
Tony