I was diagnosed with Primary Progressive Multiple Sclerosis on the 22nd Feb 2019. My neurologist believes I may have had it from birth. Can you guys with MS and in particular PPMS give me advice please and 'Problems me and my wife are going to experience with our journey with PPMS'
I am totally heartbroken, lost and confused by my partner with MS who ended the relationship a week before our anniversary of being together a year. Can anyone explain what may be going on in his head? He was diagnosed with PPMS a couple of years ago a short time before I met him. He is turning 37 very soon, and again, just prior to meeting me, was forced to take early retirement from a job he adored and never stopped talking about while we were together. He told me about the PPMSon our first date, as we just clicked right from the start, and after doing some research on PPMS, and falling hard for him, I assured him that I would never walk away from someone because of ill health, and I would be there through thick and thin.
He was in denial I believe our whole relationship, telling me (and beleiving it himself) that he was a bit of a mystery in that the specialist told him he would never suffer mobility issues or end up wheelchair bound. I feel sure that no healthcare professional would ever guarantee this to someone with MS, but he insisted. Until recently, his symptoms were not affecting him too badly, some memory issues, restless leg syndrome, lack of ability to smell, and twitches. What I noticed from early on, was that he was inconsistant in his treatment of me. One moment I was the love of his life, the next he was a little distant and moody. I was his first g/f in a decade and I noticed some social awkwardness, and self absorption, and started to wonder if he had mild aspergers or something similar. He assured me there was no depression, and could not understand my feelings of his behaviour with me being inconsistant. He was also a bit of a sponge financally, leaving me to pay for nearly all of our shopping when he stayed with me, and any social time out we had was paid for by meon every occassion except where it was clearly out of order for me to do so, such as my birthday, but I figured that even though he had been given a healthy pension from work, he was likely scared about his financial future so I made allowances. Even with his flaws, I adored him as he is the loveliest and most gentle man I ever met.
We had a few rough patches, as he had no idea how to be in a relationship, but with patience and understanding from me, we got over our hurdles and for a few months, we were an idilic couple. He had stopped being weird and distant and appeared absolutely committed and besotted. He became very loving and affectionate and we were happy. Nauseatingly so!! It did not last. He suddenly started withdrawing from me, all the affection was being initiated by me, he was moody and made the odd random nasty comment out of nowhere, which was not at all like him. We went on holiday and it was awful. I felt so alone watching all the other couples being loving and laughing, but I could barely get a converstaion out of him. When I asked him what was wrong, he said that he wasn't "feeling" the holiday, but assured me that there was no problem with us, and that he had been like this on a previous holiday. He asked that I stay patient. Often when I would ask what was wrong over the year we were together, he would say that he could not explain it as he did not know himself.
I should mention that at one point my OCD started to get difficult as I was stressed, and I did start seeking re-assurance for my silly worries, but he assured me that he would never leave me because of it as he loved me and wanted only me.
When we came back from holiday, out of the blue he ended it. He gave the reason as my OCD and said that he was now having mobility issues and blames the stress my OCD put him under. I told him that was unfair as he has a degenerative condition - symptoms would occur anyway at some point. He now says that it is not the OCD, but rather his inability to cope with simple things, and his failing health. He says that he loves me, I'm as perfect as it gets, and I make him happy, but his health will not allow him to be with me. I told him that makes no sense as I am willing to stand by whatever the MS brings, and plenty of folk with MS have relationships that work. He apears to be very confused, and not know himself why he can't get back with me, even though my OCD is under control now. I asked him should I close the door and try to move on, he said no - he may change his mind as he misses me so dearly.
I am so devasted without him. I feel like I lost my future and my best friend. I cannot understand why he would end things like this, when I would be there for him no matter what was in store. He says I am everything he was ever looking for.
Anyone advise me what has happened to him? Thanks.
Taken from John's (Heste) post here:
I too have PPMS. Personally I prefer it to RRMS as it means I don't have to take medicine every day or inject myself. I know that tomorrow I will have the same symptoms as I have today. It's consistent, I think this makes it far easier to manage.
There are plenty of positive things about a PPMS DX. Here are just a few from my experience:
1. Its not cancer. or any of a long list of other potentially fatal, life shortening DXes that you could have had. PPMS does not have a course along which you are bound to travel. It might just as well stay the same as it is now for as long as you live. It wont kill you. Just getting a DX is better than the life of limbo so many of our members are in.
2. To manage fatigue I have made a space in my life. Without a DX people constantly fill their lives with stuff. One of the worse culprits is "work". We barely have time to live. A DX of PPMS make you look at all the "stuff" and ditch as much as you need to make a little space for yourself. I now only commute to London three days a week. On the other two days I work from home but apart from not commuting so much I spend more time with my wife, dogs and cats.
3. I get pain in my legs when I walk. I don't know if you have this too. It slows me down, it wears me out, it entitles me to DLA (higher mobility allowance), it gives me a free car every three years. It gives me a Blue Badge so I can park almost anywhere.
4. I have bladder problems. I don't know if you have this too. If you don't then there is another positive. Because of this little problem I really can't travel by train anymore (the toilets are often out of order and that's too risky) so now I commute by car (free car) and park in the director's car park under my office. My company is good but really have very little option but to make these 'reasonable adjustments'.
5. I am free from all heavy work. OK some of this heavy work I have passed on to my poor wife. Cat litter bags weigh 20Kg which she now has to lug down to the cat house or carry upstairs. In the office no one ever asks me to give them a hand shifting computers or boxes of books or papers.
6. Having PPMS is a lot like being fabulously wealthy in that you don't have to work so hard and it opens doors for you (literally). People step aside to make way for me. At the office people come to me rather than ask me to go to them.
I get a private executive bathroom that is bigger and cleaner than my co-worker facilities (OK it's the disabled loo, but the effect is just the same)
7. I get free light bulbs. Yeah, I know. I don't understand this one either. Motability have sent me six now, and a power saving plug that turns off my printer and monitor when my PC is powered down. For some very good reason Motability think I need to save the planet.
8. We get discounts and privileges in many places. For example, the London Eye. I would not need to queue for half an hour and I pay a few quid less. why? I don't know. It's just their rules. OK I couldn't stand in a queue for that long, but why it should cost me less I don't understand. If I was blind it might make sense to discount the ride but I would appreciate the view as much as any full paying visitor. Just our privilege I guess.
9. I walk with a stick. It seemed daunting at first, but it was that or falling over. But what a difference it makes. Suddenly people give way to me. Shop staff are quick to carry things to the car for me. You know, I could become extremely lazy but people always want to do things for me. I have another view of this, it's a Buddhist thing. The people who I allow to do things for me, to hold open doors for me, to fetch and carry for me, also get something out of this. These people then feel good about themselves for what they did. I like to think I am creating opportunities for people to feel good about themselves.
10. I get to chat to people on this forum. Without MS I would be writing on Equestrian forums that are full of people nearly as self obsessed as me. My horses' entire lives are documented on equestrian forums. But here we talk about each other. We support each other and generally prop each other up. Good isn't it?
Now if you can't think of 10 positive things that MS has done for you then you really are not trying. Yes it would be nice if we didn't have MS but we do, so we must make the best of it.
Next we get on to the DVLA. Don't worry about them. If you feel you are OK to drive then chances are so will they. I have three year driving license. In 2009 they will ask my Neuro and Dr if I am OK and then give me another three year license.
If my insurance company even thinks about increasing my premium due to MS then I tear their arms off and beat them with the soggy ends. They cannot do that. That's discrimination.
MSers are covered by the Disability Discrimination Act ( DDA). Nobody can step onme without feeling the sting of that little firework.
my name is Phil i am 40 and just been diagnosed primary progresive ms i have major mobility problems at night my legs give up totally and i am wheelchair bound outside the house. i have bad fatigue most of the time i am receiving no help or medical treatment from nhs, any advice would be most gratefull. Phil
I am going to a dla appeal in 2012 having had my initial application turned down,I have ppms and have a wheelchair to use at work.
What are the chances of success at the appeal,is it 50/50 or less,not looking forward at all to this.
Can anyone share experience of appeals or tips of do/donts at the appoeal meeting
thanks for your help
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