Hello, I’m Claire.
My partner has recently been diagnosed with PPMS and I’m here to get informed and see how others cope, both sufferers and their support networks. Any pointers for a good place to start (beyond reading up on PPMS, which I am doing) would be welcomed as it’s all a bit overwhelming!
Thank you
PS. I have also posted this in the “Caring for Someone With MS” forum, apologies for duplication.
Hi Claire and welcome to the club that no one wants to be in. First thing I will say is dont worry which will achieve nothing its easy for me to say but you are coming to terms with something that nobody knows how it going to end up. I have had PPMS for over twenty years and it has been a hard but fun journey. I wish you all the best and will say the best bit of advice I was ever given was “you can have MS or MS can have you and I would advise the former” dont let it rule your lives smile and laugh and take it as it comes.
We are a bunch of people on here who will be able to help if you ask so if you want to know anything ask away.
Don XXX
PS dont ever apologise what ever the question is it is important to you and you are the one coping with this news you get help from anywhere . X
Hi Claire
welcome to you and your partner to the club that no one would choose to join, but there are a lovely bunch of people here, with a wealth of knowledge between us, always willing to listen if you need to vent, or offer advice where they can.
your partner and you are at the start of a journey, and whilst we all have ppms, it can take different forms for us, it’s an individual disease, whereby we can have similar problems, to varying degrees. It takes a while to get your head around a diagnosis, so take one day at a time, and as questions arise come on here, someone will undoubtedly have an answer.
hope this helps, look forward to seeing you.
Pam x
Hello Claire,
I was finally diagnosed in 2014 with PPMS at the age of 61 after MRI scans in 2010 and 2014. I have suffered three bouts of Optic Neuritis with my first being in 1990.
As I don’t know how old you both are, or anything else about you, some of the following may not be relevant. Nevertheless, here are some things I would recommend.
Try and do as much as you are able, on the principle that if you don’t use it you will lose it. Take rests when the body tells you to.
If your husband is in work, and MS is affecting his ability to work, he should speak to his manager and HR department. As you may know, employers are obliged under employment legislation to make ‘reasonable adjustments’ to accommodate employees with disabilities. Most employers will have access to Occupational Health advisers who can recommend changes. If he is in a union, get them on board. I have been through this process with the Police, before I took early medical retirement, and they were extremely helpful.
Accept all the help that is available. You should have access to a variety of NHS services. Occupational Therapy will assess your house and provide items such as grab rails for the shower and raised toilet seats etc. Physiotherapists will help with exercises to maintain core strength and balance.
You should also have access to an MS nurse who is often of more use to you both than the neurologist. I suggest you make contact to arrange an introductory appointment with both of you in attendance.
You can apply for a PIP, which is not means tested. There is plenty of information about it on the gov.uk website.
Join your local MS Society group, an any others which might be available in your area.
I still enjoy life, but it did take me a long time to accept help and face the reality of life with MS. I use a rollator for short walks and a mobility scooter for longer journeys. I used to enjoy cycling but I can no longer do so because of balance issues and fatigue. I am looking at electric recumbent tricycles, but they are very expensive. I still go to concerts and the theatre.
I hope you both find your own way to deal with this. The Forum is very useful and someone will always answer your question.
Best wishes
Alun
Hi and welcome
I was writing a new blog last night and mentioned my relationship with hubby in that, all my relationships have changed with MS. It’s not easy and will take time for both of you to adjust. We’ve learnt how to cope with the times we’re just grumpy with each other (polite version) but know they don’t really matter.
Over 3yrs since my diagnosis and there are still the occasional weeks when I’ll be in tears most days but they are very occasional now. I think the fact I ignored so many things for so long, diagnosis was such a relief and I realised over time how many things were just so hard to deal with and I now know why but it’s still taking time to adjust.
Go easy on him and yourself. It’ll take time but hopefully you’ll get to a happy medium
I hope you find the forum helpful. We’re all like snowflakes, that’s true but there’s always someone who’s had a similar symptom or experience.
Sonia x
Thanks, Don. You are right, the unknown aspect of this is the most scary and frustrating. I feel we are bracing ourselves against things that may never happen. I am also confident that things will settle in time as we adjust.
I’m sure you’ll find me popping up with questions and asking for advice here and there, and for the rest I’ll be lurking and reading!
Best,
Claire
Hi Pam and thanks for replying - I really appreciate it. You will definitely see me here asking questions and as things progress, possibly chipping in myself.
It helps to have a warm welcome and to feel supported
Best,
Claire xx
Hi Alun and thank you so much for your detailed and informative response. I really appreciate you taking the time to write.
My partner is 41 and I am 51. He’s used to being very fit and active and we are adjusting to his fatigue and current understandably occasionally low mood. He has been assigned his MS nurse and will be seeing his neurologist next week with physio appointment to follow. We are a way off OT but will bear that in mind.
His work are aware and are extremely supportive. He’s in the lucky position of being able to work from home a lot, which helps.
So far so good, I guess!
Best wishes to you.
Claire x
Hi Sonia and thank you so much for your reply.
Can I ask if your blog is MS related and where I can find it?
He actually said the same thing about the diagnosis being a relief - at least now we know, kind of, what we’re up against - and for a while he was worried it was something worse!
We’re both quite steady and pragmatic, plus sharing a dark sense of humour definitely helps
Looking forward to lurking, reading and interacting with you all.
Best,
Claire
Hi Clairesam, I have ppms and me and my partner deal with it by having a dark sense of humour too. We find it helps and also shocking people also gives us a laugh.
Take Care Polly xx
Hi, yes to dark humour but truthfully, I think any humour is good with this MonSter!
My blog is here http://brokendancer.over-blog.com/
It gets easier in some ways with time but lumps & bumps is how I’d put it. Having a fall, someone saying the wrong thing etc. can really turn things upside down.
I think my blog shows that I’ve fought hard against MS but maybe I’m just rebelling against the idea of it It’s a tough pill to swallow for both of you, a true game changer.
Hope to speak more soon
Sonia x
Claire,
Thank you for your reply and your kind words.
I am glad that you both fully aware of what is available and taking advantage of them. As you rightly say, so far so good.
The other areas worth reviewing are diet and vitamin supplements, to aid the immune system and myelin repair. I mainly eat a vegan diet supplemented occasionally by oily fish. I loosely follow the Swank diet.
I would also think about the following supplements; in particular, Vitamin D, B12, Magnesium and Omega 3. I take 4000iu of Vitamin D and 4000mcg of Vitamin B12. I would recommend speaking to your MS nurse or neurologist about these. There is a good Barts blog about Vitamin D and quite a lot on the MS Society website.
http://multiple-sclerosis-research.blogspot.com/2016/01/researchspeak-moderate-dose-vitamin-d.html
Best of luck
Alun
Thanks, Polly! Wishing you well xx
Reading furiously to catch up… Nice blogging and a real insight to some of the “joys” ahead lol.
Also saw you post on another thread saying you were looking for a Bauhaus t-shirt. We may have more than one thing in common … ALL together now… white on white, translucent black capes… back on the rack…
Claire x
Just one thing to add…unless it has already been said and Ive missed it!......if you are your hubbys main carer…be careful not to let that become a hidden problem…caring can change a partnership from husband/wife to patient/carer.
That happened in our case and we should`ve got carers in sooner rather than 11 years later, after damage had been done to our marriage.
Otherwise look after one another and live life as best you can!
pollx
Hi Claire,
I have PPMS & my wife is ten years older than me. So that’s two things we have in common even before I’ve started!
On this forum I’m mainly responsible for picking up/creating an amusing thread and running with it. I have an enormous affinity with the absurd and because MS is such a ridiculous ailment I refuse to take it seriously. Chat to you later, the cat wants me for something.
Anthony
I’m a huge Nine Inch Nails fan and consider myself very lucky to have watched Bauhaus support NIN in New York, Jones Beach. It was one of those things you just never forget and you’re so right, I decided quite recently that it is my favourite track ever! It doesn’t matter when it comes on, it just sucks you in and always sounds amazing It was at the start of an episode of Fringe we watched a few weeks ago, following a little later by a NIN track and my husband chirped up about Jones Beach. The poor boy has seen NIN play more gigs than any other band
I found the t-shirt in the end on US ebay
Sonia x
This is a very good point and one that we will try remain aware of as I know from past experience, sadly, that this can happen.
Thank you for the input x
I have spotted you fulfilling that function, Anthony
Looking forward to more of the above…
Hi Claire
My husband has PPMS and was diagnosed in 2012 when he was 40, we have made it our mission to enjoy life as much as we can. 
It was a relief to get the diagnosis as our biggest fear was that it was MND as they have some of the same symtoms.
I wont lie and say everything has been perfect, we have had some tough times but we have come out the other side and it has made us stronger as a couple.
The problem with this disease is its different for everyone so you just don’t know what will happen, my husband now can only walk very short distances and uses a scooter to get around.
He still works full time though and has had only had 8 days sick since he was diagnosed.
Best Wishes to you both
Carrie