Hi All; I've been struggling and wrote something that I hope helps;

Below. I’d like to get it published, but just writing it has really helped me comes to term with being PPMS. Thought it best to reveal something about myself. Any thoughts, criticisms or suggestions you might have would be gratefully recived. Many thanks;

"When the pint glass smashed on the stone floor of some gastro pub one early spring evening, splattering various posh frocks in the process, I knew something must be done. I had only had two sips of beer, was completely sober and engaged in a slightly stilted conversation with some chap about the England cricket team. The glass just disappeared from my left hand, and the ensuing noise generated unwelcome attention and lots of ‘how many’s he had, bit early isn’t it?’ looks.

I eventually toddled off to see my GP in November 2012, roughly six months later. I then catalogued over six years of symptoms including problems balancing and walking in a straight line, stiff leg, keep tripping over and knocking into stuff, climbing stairs becoming a nightmare, needing the loo all the time, problem raising my left arm above my head, occasional vertigo etc… Yep, 6 years of this and not one GP visit, but this was the first glass smashing incident and I was not keen for a repeat performance. I know plenty of doctors and surgeons, all of whom advised me politely that this is all part of getting older, and my line of work processing insurance claims means I know too much about the travails, aches and pains of the ‘worried well’. So I thought why bother the GP when I can just do more stretches and let nature take its course. And like most young blokes I have an aversion to going to a GP surgery and would rather just battle on than fret about anything sinister that might or might not be happening to me. Things never got better, cue 3 different private physiotherapists who all did their best, but ended up scratching their head and suggesting I see my GP. In the meantime my wife, who works in a hospital, finally caved in to my moaning and arranged an x-ray of my hips, as she suspected this might provide the answer. It revealed mild osteoarthritis. Hurrah, I said to myself. Now I know what the problem is I should just stop worrying, get back down the gym and do even more stretches, perhaps take up Pilates. Eat more fish, take supplements, that kind of thing.

Except that having hip arthritis doesn’t make glasses slip from your hands or your legs to spasm all night so that you can’t get any sleep. Or make it impossible for you to run for more than 30 seconds (I used to run marathons), jump or stand on one leg without falling over, or pull so hard with your right hand when on the rowing machine that both sides of you go all numb. Nor does arthritis, or any other middle-aged bloke generic joint pain, mean that doing up your tie, buttons or shoelaces becomes impossible, and that you keep having to apologise when out for dinner because of ‘issues’ to do with cutting food.

A four month round of GP and hospital appointments, MRI scans, lumbar punctures and interminable literature searches finally confirmed what I had I recently come to suspect: primary progressive multiple sclerosis (PPMS). That makes me one of the 10% of MS sufferers who have this sub-type of the condition, and one of the 0.0001% of the UK population to have it. Fifty/fifty male-female split, age of onset typically 35-50. So I’ve probably had it since I was 36 even though I was not formally diagnosed until I was 43. As the name indicates, the condition gets progressively worse with no drugs or medication yet available for cure. It’s all about symptom management with us 10%ers, rather than cure, meaning we start to rely on certain types of pills so that we can sleep, walk and eat. I’d be a wreck without baclofen!

But what still troubles me is the feeling of isolation. As any MS sufferer will tell you, the ‘take care, see your GP if anything new happens, and I’ll see you for a follow-up in 12 months ’ line given by most Consultant Neurologists on newly diagnosing someone does leave you feeling very alone. Nearly one year post diagnosis I have yet to meet in the flesh anyone else with MS, let alone PPMS. Online stuff is great, especially for practical advice, but it’s not the same. I’ve heard lots of ‘friends of friends’ stories about people with MS, usually involving youngish females who keep blacking out or have difficulty speaking.

In other words they belong to the other 90% of MS sufferers, ‘mostly’ women under the age of 40, with Relapsing Remitting MS (RRMS): as the name implies they can be fit as a fiddle one week, bed bound the next. Jack Osborne is a celebrity example and the media tends, quite understandably, to portray this sub-type as the norm.

Which is why being a sporty bloke in early middle-age does not tend to fit into the public stereotype of an MS sufferer. This sense of otherness I am used to, as being a house husband in your 30s looking after two young children whilst being married to an Orthopaedic Surgeon hardly makes me an everyman either. But warming on the Australian beaches this Christmas (heat I crave, cold I can’t tolerate anymore, yet another symptom) led me to the conclusion we are all, as MS sufferers, totally unique. No one case of the illness is the same and whilst I might still be able to drive and do some stuff at the gym seven years after my symptoms started in earnest, there will be others whose glide-path to severe disability has been more rapid and pronounced. I’ve been moved by stories of folk who’ve found themselves needing a wheelchair only two years post diagnosis, and I’m not sure I’d be able to cope with the sensory hell that RRMS sufferers have to deal with.

We MS sufferers all have weird stuff going on in our brains. Every time I’m on a train platform and the tannoy announces delays caused by signal failure, I allow myself a wry smile because that is basically what the disease is, regardless of subtype. I often try to picture my big lump of grey matter re-configuring itself to produce a new me because, in all honesty, I’m still in mourning for the old me. Anger wells up every time the man goes red when I’m only half-way across the road, when I can’t even manage being goalkeeper in a kickabout with my son, or having to avoid concerts, plays and other events because I worry about needing the toilet all the time. All the while, friendships get neglected and I feel increasingly trapped. Even trying to return to my old profession of teaching was not possible; I couldn’t even hand out bits of paper and kept tripping over and knocking into desks, getting increasingly paranoid about creating an ‘incident’. Yet more reminders that I am now a very different person.

So, slowly but surely the gremlins inside my head are chiselling the old me out of the grey cranial matter and I now speculate about what sort of raw material is going to fill the gaps. A more reflective, rational and intellectual being, I hopefully predict. Less testosterone, perhaps a dash more empathy. A chronic illness affecting your movement naturally creates a laser-like focus on the workings of your mind; it’s just as well that I’ve always loved reading, history, politics, religion, economics, arts and culture more generally, as these passions can’t be taken away from me (yet). Nor my sense of humour, which is now so deeply ironic that most Americans would probably find me just plain rude.

I’ve no idea what the future holds but, hopefully soon, the new me will finally blossom along with some new friends and others who can clearly relate to what I am, and have been, going through. We could meet up for drink. I promise not to use my left hand…."

Clucker Pigeon, January 2014

That is such a wonderful piece of writing, from the heart and I think we will all be able to relate to. I feel very blessed that I have friends with ms who understand, although they have rrms so we do have different views & symptoms. I also have a brilliant local ms society with a fb page & reguarly meet up ( although I have yet to attend an event ) I wish you luck and hope your grieving for the old you ends soon and you embrace the new you x

Perfectly said, and so apt!

I too have ppms based in Nz -Ihaving trouble writing this e-mail so will keep it short and have a go in the am whenn hopefully I will function better.

Hi Clucker… I saw your post earlier this morning and put it off until I could give it a proper read… which I just did. I’m very impressed by the writing and extremely moved by the content. Trying to think of suggestions but none come to mind… it’s very readable, it gets the points across in a sharp way, uses humour to just the right degree and really does get across what a weird and frustrating thing PPMS… and MS in general… is. I think you certainly need to look at getting this published. How about MS Matters (magazine of MS Society)? I’m sure they will be interested and readers often complain that there’s not enough about PPMS, but on other hand maybe it would be better for readers who know nothing about MS. The Guardian do a supplement called ‘Society’… might be worth looking into that. Whatever you decide I think you should definitely get it published! Best of luck with it Clucker… and please don’t stop at this one article… you have a talent there! Maybe a blog? Thanks, Pat xx


Perfectly said, and so apt!

I too have ppms based in Nz -Ihaving trouble writing this e-mail so will keep it short and have a go in the am whenn hopefully I will function better.

[/quote] Hi Jam and welcome to the gang! It will be very interesting to hear how PPMS is treated in the NZ health system… like how often do you see a neurologist? Come back and tell us more about yourself. We’re a friendly bunch and always more than happy to welcome a new member. Pat xx

I like the idea of a blog (good thinking pat) may help you have a positive focus and help find the new you One of my friends is the branch manager of the ms society Teesside branch he may be able to help you get it published x

Hi Clucker,

Wow, what a brillliant piece of writing, you sure do have a talent there, perhaps thats the way for you to go in the future. Such a truthful heartfelt piece, and I can relate to lots of it, difference being that I have had ppms for yonks and find it difficult to remember not having it, and I suppose, because of the time difference, just think now as this is my"normal".

I wonder if you got in touch with your local ms branch if they could have it published?. It gives people a good insight into what having this frustrating disease is like. Whatever you decide I wish you all the very best.

Pam x

Your tale is rather similar to mine only much shorter. Mine started in the late 80’s, a man in his early 30’s with a wife and 2 kids, always sporty, rugby, squash, fishing, gardening, earning a decent wage in a responsible public service profession, with accomodation provided. I worked from a week after my 16th birthday.

Things are now slightly different. Age now fast approaching 60, still have a wife and 2 grown up children, can manage about twenty steps with two sticks otherwise it’s a wheelchair or mobility scooter. Thank god for sky sports, I’m now an armchair sportsman who, to take my mind away from the constant torture of my M.S., which I believe now to be secondary progressive, now uses the self torture of watching England’s Cricket squad in action to amuse myself! Finance-wise I’m currently watching Channel 4’s latest masterpiece ‘Benefit Street’ which is providing me with lots of money making tips. Job and house went many years ago.

Like yourself I am heavily into politics. However, over the years and due to my changes in circumstances, my main interest in this area is how am I going to get underneath the Houses of Parliament with a barrel of gunpowder and make a quick getaway on a bloody mobility scooter!

As for your love of reading, get on with it while you can. I amassed a huge library of books which I intended to read when I retired and can’t concentrate long enough or have the strength to read a newspaper, and haven’t for donkeys years.

What I do still have is a sense of humour, although I have developed a tendency to tell people exactly what I think of them with a hint of bad language thrown in for good measure.

Good luck on your journey to God knows where or why 'cos I’m beginning to wonder what the point of it all is, and one thing is for sure, the people in charge at the minute don’t give a damn about any of us. We are costing the country a few quid and if gas wasn’t so expensive we would all be getting an invitation from this government to a free evening lecture at the O2 arena with the promise of a warm welcome, if you get my drift!

Clucker, a very good read Weirdly, you just reminded me about the glass drop… I picked up a pint glass of water and dropped it, when asked “what happened?” I blamed the condensation but I think you more likely have the answer.

I am still thinking thru things and I think it’s even possible, that I may have had the odd occurence a long time ago, maybe even before I got fit and qualified as an instructor! I joke that was clumsy before MS raised it’s ugly head but, I don’t know, it makes your head hurt sometimes doesn’t it?!

Hope you get it published

Sonia x

Hi Guys

Many thanks for your kind and supportive comments. Much appreciated.

It’s strange how just writing stuff down honestly can help you feel better, and nice to know there are folk out there who care. While I still can, I do intend to do more writing. As my article intimated, I think this a better use of my time that huffy tantrums over my impaired physical state.

Had a very good first session of NHS physio today. Lovely physiotherapist and great support team in the Ward. Ran to time and I felt valued and respected. I know it’s fashionable to bash the NHS, but South Warwickshire physio team seem pretty top notch. It’s not all bad.

Oh, Robin of Sherwood: I’ve had similar thoughts myself re gunpowder in the Houses of Parliament. Gettaway on mobility scooter, 02 arena filled with carbon monoxide…surely I should try and produce an adult comedy script around this?

Take care all, CP.

CP I’m in agreement, you definitely do have talent as a writer. So much of what you said is appropriate to me as well. It’s very readable, descriptive of an illness that’s very debilitating but you haven’t made for a depressing tale of doom and gloom. There is so much available on rrms and so little on PP. Even my urologist asked me to explain the difference as he only saw ms as a relapsing illness until he read my diagnosis and asked about it. He couldn’t understand why I wasn’t offered DMD’S. That’s sad from a consultant, how do we expect the average person on the street to understand?

To my shame though, I was a nurse and had nursed many ms patients but didn’t know the different types until it was suspected I had the illness. It never occurred to me that I might have it, it was definitely just me being a wimp who wasn’t 21 any more. These illnesses happen to other people, not me. Few people know about MS, it would be nice if their understanding stretched to us as well, I really hope this does get published.

Cath xx

Hi Clucker Pigeon What a great piece you have written! It sums up a great deal of what I feel and have experienced! I really hope you get it published as I’m sure it will help lots of PPMSers. There are so few things published from the PPMS point of view. Most people publishing have RRMS and experience things very differently to us! Do consider more writing - I think you have a talent for it! Thanks for bothering to do this! Teresa xx

Well, after numerous attempts of having ago to replying to this thread … I really feel for your situation.

I live in NZ - not alot of help here! One visit from the MS Society and there input was to move into the city where more help would be available - I only live minutes from the city. I have lived here for 30 years and cannot imagine I would be likely to be better off considering I no longer drive, no friends now, wheelchair prodominately bound (ppms) and most have rrms anyway! If I had moved to the city the likliehood of suriving the earthquakes would have been questionanble especially when you are compromised. So no help here whatsoever!!

The pain is wearing me down, and too is much gradual decline expecially having been so fit, strange how it affects fit people.

Well it is summer here now although you could be forgiven for thinking it is end of autumn. My hands and feet are like blocks of ice - especially typing this. I think I will go and put to electric blanket on to get into bed.

I hope I haven’t complained too much but I am struggling also to see what the point of all this is. I have two teenagers who don’t really have any idea. A fantastic husband and a black pug who totally ignores me until my husband gets home to feed her!

Your post was on the button - so many don’t understand and there are those who choose not to because it doesn’t affect there lives.

As for the medical profession - don’t think I have had a good exp. yet - no neuros that are interested (not many here in the city I live in), stemcell tried in Germany and CCSVI Australia. Maybe if parkinsions is advanced then maybe we will see some movement.

So sorry for the long, negative post but I just had to vent.

I hope u do something worthwhile with your writings - take care.

Jam there’s no reason you should be struggling with pain. There are drugs available to keep you comfortable. I never thought I’d ever be pain free again but after a while experimenting with different meds and doses my doctors have found a regime that agrees with me and I’m comfortable now. Pain is unnecessary, keep insisting you are given appropriate analgesia. It improves your mood and quality of life, nobody should be left to suffer.

I agree with your logic not to move. I’m in a similar situation living outside a big town or city but have a life where I am. I have family, friends and love this area. I’m moving to a more suitable house very near my current home as I can’t bear the thought of leaving the village. We may have challenges but we’re as entitled as anyone else to a good quality of life, you can’t just consider your illness, you’re still the person you were before ms. Rant on, I would too in your situation. Take care.

Cath xx

Hi Clucker Pigeon

A superb piece of writing which I thoroughly enjoyed reading.

Best wishes and love from Tracyann xx

ps. Don’t procrastinate, just get it published anon!

Thank you SO MUCH for your informative & descriptive post PC. It helped me to realise the anger & frustration I have is possibly part of the process to acceptancee which is still a problem for me.

Your humour will stand you in good stead. I wish you well and you will hopefully get a book (or at least an article) published.