Category Archives: Blogging

Jan 19 2014
6 Comments
Blogging

I Think The Glass Is Half Full

Patrick

Patrick is my guest blogger today – although MS has been in his life since 1979, it was only in 1999 that it changed from mild RRMS to SPMS:

Like nearly all of you I’m an MSer. My first relapse was in 1979. I was 25 and newly married. A problem occurred, my bladder emptied itself and I had no control over the event, there was a feeling of total helplessness.

The nightmare scenario did not return. Being a typical bloke I did not go to a doctor, I put the whole thing down to stress of trying to be an antiques dealer.

Next problem was 1994 when I had double vision. I was frog-marched to my doctor who referred me to a neurology consultant. Meanwhile the double vision went away but I was in the NHS system. Six months later the consultant said I had multiple sclerosis and to book another appointment for 6 months down the line.

Back at home I looked up ‘multiple sclerosis’ in the Encyclopaedia Britannica. I learnt it was an incurable disease affecting the nervous system. I was none the wiser.

Someone at work suggested I go to the local MS Therapy Centre near Aylesbury. There I picked up pamphlets from the MS Society and slowly I learned more about the disease that was not affecting me.

In 1999 I went on a 16 mile dog walk around Ashridge estate and cooked supper for the family. Then slowly progressive MS began to emerge, maturing into something that now has a profound effect upon me, my wife, our three children and our friends.

At the start of 2014 I have severe foot drop in my left leg, I can only stumble a few yards without my rollator, my sense of balance has gone AWOL and I have to do intermittent self-catheterisation. I am not allowed to drive and In 2012 I had to give up my career as an international computer geek. What else has MS got in store for me?

Today MS has turned the life of my wife and myself upside down. She helps me to beat it. I talk MS to students, nurses, and anyone else who will listen to me. I also run the website www.aid4disabled.com. Through networking I have met a wide range of people who help and encourage me.

Yes MS has forced a complete change in our lives and yet we survive. I’m reasonably content, can still do things that I enjoy but nonetheless I’m hugely frustrated.

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Dec 15 2013
8 Comments
Blogging

The Ghost of Christmas Past

ghost of christmas past

Mike has written a guest blog post about adjusting to life with progressive MS:

On Christmas eve 2010 I was in hospital for an unrelated illness. I had already been to see my GP about a tingling sensation in my right arm and was waiting for an MRI, so they decided to do it there and then.

Then came the worst Christmas present ever. “You have over 15 scleroses of the myeloma, which indicates you have MS” said the consultant before discharging me to go home for a very uncertain Christmas.

I was 58 years old and had been retired for 3 years. I was driving double-decker buses part time and took part in long distance mountain bike challenges all over the world. Now I drive a mobility scooter with a top speed of 4 mph as I can only walk a few metres, my balance is shot to bits, my life has been completely turned upside down.

That’s the physical side, the mental side is another story. Frustration, fatigue, anger, depression, black holes, lack of confidence, I’ve had them all.

There are many aids available to help with the physical disabilities, mobility scooters, power chairs, stair lifts etc, but the mental side requires a huge amount of self-will , self-management and goal setting just to list a few and this is where I am struggling.

I have a very long-suffering and understanding wife, and Wendy, the MS nurse who is just wonderful. My wife has to put up with my frailties when I fall into the black hole and refuse to talk to her for days and am unable to give any explanation for my behaviour. I get frustrated when I can’t do many of the things I used to do and love – walking the dog, gardening, cycling etc and then become angry, get depressed and the cycle begins all over again.

Over the past few weeks, Wendy and I have been exploring ways of combating these issues and I really do believe with a lot of perseverance and talking to professionals and loved ones, there is light at the end of the tunnel. Dwelling on pre-MS activities and pleasures does not help, but instead looking at what pleasures I can achieve today. Setting realistic targets and reveling in the enjoyment when I achieve them, and always pacing myself to try to minimise the awful effects of fatigue.

Of course, I will never defeat MS, but if I can go some way to combat the pain and misery of that wretched Christmas present of 2010, I am going to give it my best shot.

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Nov 12 2013
6 Comments
Blogging

Normal Service Will Resume Shortly…

testcardI have to take a blogging break for a week – internet provider beginning with S and ending in Y is seriously annoying me now, must sort out.

I can still respond to comments from my phone, so keep writing. Back soon……..

p.s. for non-British readers, the picture is of a test card they had when I was a kid and telly was off-air. That clown gave me nightmares.

Nov 03 2013
14 Comments
Blogging

I Choose To Laugh

Cathy ChesterCathy Chester has written a guest post on behalf of Healthline.  She’s a writer and health advocate, and writes about living with a disability during midlife at An Empowered Spirit.

The first time “it” happened I was walking as fast as I could through the Port Authority Bus Terminal in New York City.  Everyone walks very fast in Manhattan, and when you’re trying to catch a bus, they walk even faster.

They do this without looking anyone squarely in the eye. There must be an unwritten law that you aren’t allowed to look anyone in the eye if you live in the Northeastern United States.

Trying to catch my bus, I noticed my body felt very “uneven.” I would take one step and my foot would touch the ground; the next step it would not.

What was up with that?

I looked down to see I had one shoe on.  What?  Yes, one shoe off, one shoe on…(I won’t continue with that.)

I looked in back of me, and the fast walkers of Manhattan were kicking my shoe out of their way to catch their bus.

My foot was so numb I never noticed my shoe had come off.

The second time “it” happened was the following year.  I was going out to dinner with some friends to a bar/restaurant.  After waiting for our table at the bar (and one glass of wine later) we were called to our table.  Following the waiter up two short steps, I fell down. Plop.  My legs had given out.

“How many drinks did you have?” the waiter asked, smiling like I was a cheap drunk.

I could have said a lot of things, but I blurted out, “Only one.”

Not exactly clever.

The “it” I am talking about are those things that happen to us while living with Multiple Sclerosis.  Those humiliating and embarrassing day-to-day activities that happen if we fall, trip or collapse during the treadmill of our lives.  They can happen in an instant or over time, but when they happen, how will we handle it?

After 26 years of living with MS, my response to that question is to handle it with grace and humor.  After all, what are our choices?  We can either cry or laugh.

I choose to laugh.

Those of us diagnosed with an autoimmune disease end up listening to family, friends, doctors, therapists, social media and countless other well-meaning people trying to help us manage our disease.  People, in general, are more educated about MS today than they were 26 years ago.

But we still have a long way to go.

I hope we handle their education with grace and humor, while letting them know that MS is not something to laugh at, but we can still laugh at ourselves.

Today I would have told those people kicking my shoe around Port Authority that I have MS, so if it happens again they will think twice and be kind enough to tell someone they lost their shoe.

Today I would have told the waiter at the restaurant about MS, so if it happens again he would use more tact, and show more compassion.

And both times, I will continue to laugh inwardly and, outwardly, helping to spread MS awareness.

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Oct 18 2013
14 Comments
Blogging

In The Company Of Giants

ChrisThe MS Society Awards 2013 at The Dorchester yesterday were, in the words of The Teenager, just awesome.

To be in the same room as so many incredible people with so many inspiring stories and achievements is impossible to convey and to be a finalist in the same category as St Bartholomew’s Hospital and Shift.ms was humbling. I had no expectation of winning and was over the moon to receive a ‘highly commended’ certificate and bottle of bubbly.

There’s far too many highlights to mention, so here’s a flavour of how the day unfolded: we arrived early enough for The Teenager to be photographed posing next to a £1 million Bugati parked outside the hotel which he quickly tweeted to his friends.

A champagne reception was then the perfect way to meet new people and put faces to names before being ushered into the ballroom for lunch. I was thrilled to be sitting next to Joseph Carter, the Director of MS Society Cymru and on the same table as David Baker from St Bartholomew’s Hospital with whom I had a lively and illuminating discussion about Alemtuzumab.

Lunch was superlative, the surroundings beautiful, but most importantly, the awards were emotional, moving and thoroughly well-deserved. The final announcement, for the MS Lifetime Achievement Award went to our very own Stuart Nixon (hardly a dry eye in the room). The Teenager was busy having his photograph taken with as many celebrities as he could find – a big thank you to Stephanie Millward for signing autographs for him and letting him hold an Olympic torch. In all the excitement, I forgot to take any photographs myself (d’oh!), but the day passed in a whirlwind.

It was brilliant to have people come up to me, have a quick glance at my shoes and ask if I was Stumbling In Flats. To be told how much people loved my blog was an award in itself and I’m still floating on a high (possibly also due to the champagne…).

What can I say? I truly was in the company of giants. If the future of MS is in their hands – through research, through fundraising, through volunteering – then we are in very safe hands indeed.

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