Hello,
I am looking for information/support from people who have experience of the above form of MS.
I have been dating a wonderful man who has Primary Progressive. He has told me what MAY happen in the future, so I am aware of potential problems.
There are challenges in the physical department and I have gradually accepted that things may not improve.
I am a Type 1 diabetic and so we both have a fair few things going on between us!
How do people cope with caring for someone with this form and can anyone offer any advice? I have only been dating him for four months so it is all a bit of a minefield.
Thanks.
Hi and welcome to the forum!
It could be helpful to you if you post the same post on the PPMS board. It is quite an active board, but everyone is welcome to flit twixt the boards.
As you are probably aware, MS affects diffferent people in many different ways.
Although the PP variety is considered the most severe, even that varies and not all PPMSers are hit too badly.
luv Pollxx
Hi, I have not been on here for quite a while, but I will do my best to do so again.
I am a full time carer for my husband who has ppms. When he was dx it was spms. That was 9 yrs ago.
I have to agree with Poll, everyone is different symptom wise, progression wise. But nice to “know” ppl in similar-as can be-situations.
Here (circumstances permitting) if you want to chat, you could pm me if you’d prefer?
Mel.
Hi, I have not been on here for quite a while, but I will do my best to do so again.
I am a full time carer for my husband who has ppms. When he was dx it was spms. That was 9 yrs ago.
I have to agree with Poll, everyone is different symptom wise, progression wise. But nice to “know” ppl in similar-as can be-situations.
Here (circumstances permitting) if you want to chat, you could pm me if you’d prefer?
Mel.
Hi Rocket, sorry to hear of your and your OH`s health problems.
I was diagnosed with PPMS some time back and it turned out to be a different condition altogether, with similar symptoms, so I did learn quite a bit about PPMS.
My hubby is my main carer and has had difficulty keeping up with the many changes I have and still am going through.
We cope by having a good support network form the local authority.
Please try to remember that not everyone with PPMS follows the same journey. I know there are members here, who have had PPMS a long time, but are still able to do lots of things.
Hi Mel, my hubby is my main carer…I get outside help for 18.75 hours a week plus 1 sleepover…so that leaves a helluva lot of remaining hours!
I do take a lot of looking after, so know how much you carers work and dedicate their lives to us.
I was wrongly diagnosed with PPMS a while back. Turns out it`s not MS at all, but a similar disabling condition.
Summat you said is intriguing me.
I thought spms cant change to ppms…ppms is always ppms…unless of course, the original diagnosis was wrong.
Other folk have said on here, that is how it works.
What do you reckon?
luv Pollx
Hi Poll,
Oh I don’t know, it has been years since my husband has seen his neurolgist as quote “there’s nothing more they can try, ring if you want to…” Also he has no contact with an MS nurse, it’s got to be at least 7 yrs since.
But you are probably correct and my husbands “type” was diagnosed incorrectly to begin with. We also have had direct payments and an agency in for 17 months now, previous to this it was just me and in the two years prior to the direct payments I gave up my job and was at home full time (I still am as like you say there’s still a lot of time when there are gaps in care where care still is required). My husband really did not want “outside” help and saw/sees it as my “job” however I began to suffer and with one thing and another he agreed.
We began with 17.5 hours which quickly got increased to 22 hours and since March this year it has been increased again and made as double up calls due to my husband needing to be hoisted now totalling in 56 hours per week. It’s tough but now I’d be lost without them. However we are trying to move atm to a bungalow in a different area and it is slightly concerning that we will have to be re-assessed and my OH is saying we’ll manage without…how is my question to him!
Oh anyway, I’ve wandered off track…bye for now.
Mel
Hi,
A friend of mine was diagnosed with PPMS four months ago at the age of 25. I’m trying to be of some help and support to him as I can see this is a very dauntng time for him. Can anyone living with this tell me roughly, how they live day to day with it, is it possible to continue on with work, how your disease is progessing, I know it’s different for everyone and PPMS means no relapses, but is everyday a bad day?
And finally relationships, are any of you in relationships/married?