Jump to content
The MS PEOPLE UK Forum
Support, help, advice and information for Multiple Sclerosis. Ask questions and share experiences with people affected by MS.
Marina

Positive things about a PPMS DX

13 posts in this topic Last Reply

Recommended Posts

Crappy
Marina

Taken from John's (Heste) post here:

http://ms-people.com/forum/index.php?s=&am...ost&p=33895

 

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.

 

Regards,

 

John :hearts:

  • Like 3

Marina

(belated DX in June '05, SPMS)

Share this post


Link to post
SkattyBell

I think this is a great attitude to have.

Thanks, John :you-rock:

  • Like 1

Share this post


Link to post
debzsanderson

Mark has secoundary progressive ms but he certainly agrees with not having attacks and all the medication that is needed to control them.Although he has days when he feels worse than others he feels more able to live with the ms. John has such a postive outlook and if its ok to do so I will print it off as a reminder for the bad days.........

 

debz xx

  • Like 1

Mark has PP MS but I am his partner and do the posts as he cant use the computer!!

Share this post


Link to post
anna derbyshire

John,

 

I love reading your posts.

 

I wish i was as eloquant as you!

 

Anna

  • Like 1

Anna x

Share this post


Link to post
mvs

John,

 

I been finding it hard to see the positive side, however after reading your post it made me smile, going to have to start using the stick (o: thanks :hearts_circle:

 

Vivian

Share this post


Link to post
ptlike

Good for you mate, what is ppms by the way

 

Keep smiling

 

Peter

Share this post


Link to post
Heste
Good for you mate, what is ppms by the way

 

Keep smiling

 

Peter

 

Primary Progressive Multiple Sclerosis. Just like everyone else's MS but without all that Relapsing and Remitting. Things stop working and they just stay stopped. One day I was fine, walking normally, riding horses, etc, then my brain stopped talking to some of my leg muscles...permanently. That's it, instant MS.

 

Regards,

 

John :gunray:

  • Like 1

Share this post


Link to post
vertigofalling

I also have ppms and I adore your attitude. Was having a really rubbish day (facial pain) but you made me laugh out loud. Showed my husband. He says we need to take advantage of the rubbish situation. I enjoy also giving strangers the opportunity to do good. Thank you for brightening my day.

Luci

Share this post


Link to post
Rama

Wow John - I admire your positive attitude. The last couple of weeks I have been on a real downer - no particular reason I have just let my MS get the better of me. But when I read your post this morning I thought 'Come on Gill - get a grip of yourself. Wallowing in self pity is not going to do you any good." So I am going to make a real effort today. I will try and make the most of my situation - instead of being sad over all the things I am no longer able to do I will start trying to find new things to do.

 

Thanks John.

 

 

  • Like 1

Share this post


Link to post
boudica

Hi, in the years I was told I had PPMS, I learned to accept it and like you, knew I`d always have the same problems and maybe even more to add to the party.

 

I often wondered if it was, in a weird way, somehow better than being told it was RRMS...............`cos folk with that type of MS, seem to suffer gruelling relapses, which interrupt their lives with a greater impact than my symptoms.

 

Hope no-one takes offence to my observations.............dont mean any, honest!

 

pollyxx


Edited by Marina
To remove unintentional strikeout. If it was intended, please let me know and I'll strike it all out again :-)
  • Like 1

Share this post


Link to post
Reggie

Poll, As you know my ms was diagnosed nearly 32 yrs ago - and as Secondary Progressive. When you read about folk with RRMS it seems a different disease. My problems have always been there - they like me too much to go into remission. l must make them too much at home!! And your personal journey has had its excitement - 'is it' or isn't it' - you have had the pro's puzzled. Lets hope that when they find the 'missing cure' that it works for one and all!

Fx

ps reggie is my rescue rott

Share this post


Link to post
woblyboy

Dear Rescue Rottie,it took a while,but now I know

 

S xx

Share this post


Link to post
Nindancer

I can't really say I have too many good things to say about being PPMS just yet nut I'm about 5.5 months since being told likely PPMS.... so that's about 6.5 months since guessing I probably have PPMS. I say this cos I think it was probably 4 or 5 years ago that I started to randomly send flip-flops flying (and always with the right foot come to think of it!) and landing that bare foor onto the tarmac was always an annoyance as I never saw it coming.

 

For about a month after being told that, I tried to adjust and accept the idea that I wouldn't get better but a few weeks ago I realised I might be in denial as I STILL imagine that little things might be better tomorrow, and with the little things sometimes they are!

 

BUT, I am thankful for some of the good things and some of the things that have happened over the last year or two.

 

For example, the first time I publicly had a really bad time walking (cos it did come and go) was in July 2012 when I went to watch the World Pole Sports Championships in London, as my friend Ria said on the way home "you kind of look drunk" but by some minor miracle, I kept continued to teach Polefit at a gym for another 9 months.... before that day came that I couldn't stand properly so told the gym I was going to take a couple of weeks off. By some miracle, I hadn't returned to my classes, had been paid in full and borrowed a pole (in my dining room!) when the gym folded a couple of months later!

 

That aside, I had a fall last December doing my Xmas shopping, so I still managed to keep a semblance of normality until the Osteopath said that I needed as MRI. In my classes I would "instruct" the warm-up whilst doing squats as aerobics was getting a bit challenging. Weirdly, doing acrobatic stuff on the pole wasn't a problem but the state of things means that I can't really do much as funnily enough, something so circular does mean I get dizzy, so aerial stuff has gone by the wayside :witch:

 

Oops, sorry for waffling. MS has turned my life upside down and ambitions about managing to do the splits have turned into ambitions to try to walk in a pair of 1 inch heels!

 

I am thankful that I did some good stuff when I could and that I'm pretty unlikely to have some of those shockingly scary relapses (I take my hat off to those of you that have to cope with that!). Life's difficult and tiring now but it's still life :wink2: just not the one I expected

 

Sonia x

  • Like 1

Share this post


Link to post

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Similar Topics

    • PPMS, 10,000 people in the UK have it and I'm one

      Hi people,    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'

      in General Discussion about MS

    • Positive news for Primary Progressive ..

      Exciting news.....except the NHS may not fund it....drug is called Ocrelizumab http://www.bbc.co.uk/news/health-38392548   We shall have to keep an eye on it eh?   Scully x      

      in General Discussion about MS

    • Having A Positive Attitude With MS

      I suffer from MS and was diagnosed at 14. I am currently 20 and I found that every video related to MS is patronising. I have created a short documentary on the condition and how having a positive attitude helps. The documentary can be found here   http://youtu.be/f6zv8uzbH7o   Please share and give feedback.

      in A Survivor's Guide to Multiple Sclerosis

    • PPMS

      I have PPMS and for some reason I only get Gabapentine, I would be interested to hear about other treatments available (Scotland) and I have read very good reports on ocrelizumab (spelling) is it available on the NHS?

      in General Discussion about MS

    • First positive Primary Progressive phase III trial results

      This is from my local MS Society group...   First positive primary progressive phase three trial results   In October, pharmaceutical company Roche announced top-line results from the first positive phase three clinical trial for people with primary progressive MS.   The trial compared ocrelizumab to a placebo in over 700 people with primary progressive MS. Treatment with ocrelizumab led to a reduction in the progression of clinical disability by 24% compared to the placebo. This reduction was sustained for at least 12 weeks and was measured by the Expanded Disability Status Scale ( EDSS).   Data was also reported from two phase three trials, comparing ocrelizumab to interferon-beta (Rebif) in over 1,600 people with relapsing MS.   The results from these trials show that ocrelizumab reduced the number of relapses compared to Rebif by 46% in one of the trials and 47% in the other. Ocrelizumab also significantly delayed the onset of clinical disability compared by Rebif by 43% and 37% in the two trials.   The data from these trials will be submitted in early 2016 to the U.S. Food and Drug Administration and European Medicines Agency so that the licencing process can begin.   Read more here. https://www.mssociety.org.uk/ms-news/2015/10/first-phase-three-trial-show-positive-results-primary-progressive-ms   Scully

      in General Discussion about MS

About Us

Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.


The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
×