Tag Archives: PSP

what do I do?

This week, I’ve been recovering. Yesterday was one of those days where I got up in the late afternoon, had a long hot bath, put on fresh pjs, and took my hot water bottle to the sofa, before going to bed. Once upon a time, I’d have been upset by that. Now, it’s just one of those days. Not even a surprise, after some of the busyness.

I regularly post about the importance of support groups. Ditsy and I cause chaos across the six counties as we meet old friends and new friends in a space for PSP chat. Families, carers, people living with PSP, gathering to together to share and support. Hugs and tears are frequent but optional. It takes courage to come to a support group for the first time, to cross the threshold. To admit a need. To display vulnerability to strangers. The strength of a support group is that we all know. We have all been that bewildered. We have all been that anxious. We have learned the strength we can gather from each other. It’s not about the dismissive ‘tea and sympathy'; it’s about creating a welcoming, supportive, space.  A diagnosis of PSP is baffling. It’s a progressive, terminal, neurological condition that few have heard of. Finding someone else who’s familiar with it is like finding an oasis in a desert. A resource. A relief. At last. We are not alone in this.

 with Ditsy & MrD
with Ditsy & MrD

1 in 12 of the population is affected by a rare disease, and Northern Ireland Rare Disease Partnership work to influence strategy and policy in the UK and the particular implementation in NI. Last week, a crowd of us gathered to plot, plan and create. We have things to do- redesign our website, meet the NI Assembly Health Committee, participate in a Human Rights investigation, plan a big day out at the DisabilityPride event, keep on talking to commissioners, present at conferences, be creative about telling the stories. We are all volunteers. We’ve all had to learn something about rare disease. We have differing skills and experience; we work collaboratively. There’s always more to do. We do what we can. We’re doing more than I ever thought possible without significant funding or staff. Volunteering is amazing.

Also last week, I gave a talk to the Board of the local Public Health Agency. I talked a bit about PSP, a bit about the rare disease partnership, and quite a lot about the importance of working collaboratively with patients. Our Health and Social Care systems have a legal requirement to promote Personal and Public Involvement, but too often it’s seen as an add on or somebody else’s job. So I brought my thoughts and my shopping into a meeting of the big wigs. I didn’t show off my new shoes, but I got the impression they don’t get presented with Dr Seuss images all that often. That’s the value of a different perspective.

 

the lorax

Does it make a difference?

I think it does.  To an individual, to isolated communities, to people who recognise that their voice can have an impact, to senior managers to remember that they’re talking about people, not just numbers or conditions.

It makes a difference to me. I have a reason to get out of bed. I have people to talk to. I have support and opinions and I can make the big wigs listen to me. (Pause for a moment to feel for the big wigs.)

I have a chronic illness. I lose days to sleep and vagueness. But the little bit I can do reminds me of the mouthy busy bod I used to be, and that’s quite fun. I’m me, not ME.

of dancing, rare disease, and a boy scout

I’m not so good at the ME ‘pacing’ thing. This will come as no surprise to the regular reader. I do all the things I’m not supposed to. I’m usually flat out busy or flat out recovering in bed. I want to do all the things, usually at once. I don’t recommend it, but it seems to be my way.

That means that my brain make up over the last few months has probably been:

35% rare disease events, training, support group, survey, what else can I do, of course I’ll do that

5% wee blind doggy literally bouncing off walls

5% Irish dancing things dress alterations, new dress, competitions, summer trip to France, fundraising, make the sandwiches

50% I can’t remember anything, what did I say I would do, wake me tomorrow, who, me?

5% the rest of life.

(Bloggy buddies, you fit in the final 5%. Not only I have I not been writing here (or anywhere) but I haven’t been able to keep up to date with y’all. I may have read your posts, but not commented. I may not have read anything at all.)

It’s true, for my own sanity I need to address the balance of my mind and my energy. I will, I will, I will.

In other news, Ditzy and I were out last night at a rare disease symposium at one of the universities. We did mingling and chatting and listening to talk about genetics. We may not have understood everything, but such is life. I was asked a question by a young woman who responded to my answer with ‘You don’t really know, do you?’ Harsh, but accurate. She was a biomedical scientist and my grade C in O’level biology from 1981 was no match. I need a crash course in the science bit.

bob chaos

Somehow, together, Ditzy and I attract oddness. Individually we’re sensible people. She’s a retired accountant, a proper grown up, and I’m vague, anxious and a bit mouthy, but together we operate in (create?) a world of chaos. We tried to get into the car park, but the barrier remained closed. Buttons were pressed. Nothing. We wondered if the event had started. More buttons. Still nothing. Ditzy put on her little old lady face and approached the car whose exit we were blocking. She wore the man down until he came to rescue us by pressing a different combination of buttons. Ditzy smiled and simpered and fluttered about, thanking him for rescuing two old ladies (She meant me! We spend so much time together she really thinks I’m her age!)

But what else could the man do- he was an actual scout, in uniform. Toggle and all. He couldn’t ignore distressed white haired women, no matter what age, or the whirlwind of mayhem surrounding them.

 

 

driving miss ditzy and mr david

You’d be hard pressed to squeeze more driving related crises into a morning. Anxious, giddy drivers, transporting a relative stranger around the region in the rain.

It started early. Miss Ditzy, a retired genteel sort, is not used to morning traffic. The 15 minute journey to my house took 50 minutes. By the time we gathered up Mr David at 9am, she’d been on the road for an hour and a half, and was past herself. While I was distracted looking up a picture of an MP with a fetching tie, we took a wrong turn or two and headed up the busiest road in town. In the wrong direction. A slip road, another road, a roundabout, more lights, the other slip road and eventually the right way. By 9.15 we all needed a stiff drink. It had already been a long day.

We’d spent the previous day with Mr David also. We’d met a neurologist, and held a huge support group meeting. 25 people in a room designed for 12. Borrowed chairs and big boxes of Swedish biscuits. A walking stick with added laser; sadly not a light sabre. There was only a minor parking incident on that day.

Miss Ditzy and I carry on like family- we giggle, squabble and wind each other up. I felt for Mr David, dropped into the middle of a strange place, with two hyper volunteers he can’t get rid of. Maybe he can commission research, by a mental health professional, on Life After PSP?

found at: http://www.pinterest.com/pin/212865519860265448/
found at: http://www.pinterest.com/pin/212865519860265448/

The second support group meeting of the week had smaller numbers, powerful stories, and a baby. A cuddly baby who was content enough on my lap to let the group do its thing. Eventually, I gave the baby back, we gathered the light sabre and the biscuits, and hit the road. This time, I was driving.

I have driven Miss Ditzy’s car before. Once I remember about the handbrake, all is well. We knew roughly where we were going. We had plenty of time. What could possibly go wrong?

The sky was low and dark. The rain kept coming. Heavy, wet missle.  Grey, splashy roads.

I realised I’d never needed the lights on Miss Ditzy’s car. Where was the switch?

-That’s the wipers.

-No, not there, that’s the indicators.

-To your right!

-This wee twiddly thing?

-No! Turn the thing!

I did. I turned the thing on the right.

Unfortunately, it was the ignition key. In three lanes of traffic, approaching a roundabout (with no lights on), I turned off the engine.

Fearing imminent crash, chaos and injury, Miss Ditzy and Mr David had conniptions.

I turned the not light back the right way, and proceeded round the roundabout while my travelling companions quelled their heart rates and struggled to restore their breathing. When Miss Ditzy could speak again, I pulled over and she pointed me in the direction of the huge big turny knob thing on the dashboard, nowhere near the steering wheel. There was light.

There was only one stall, at a ‘tricky’ roundabout, between us and the afternoon meeting.

There is a moment in every support group meeting when I am reminded why I do this. The hassle and the tiredness fades into the background, and I know that the effort is more than worthwhile. What we do makes a difference. People connect, get and give support, and realise that they are not alone. It is an privilege to be in the room when that happens.

The long journey home was without incident. Mr David avoided further panic by closing his eyes and praying/ meditating sleeping. Miss Ditzy and I blathered on, as we do.

Next time, we’re taking the bus.

.

A possible title for this post was ‘Thelma and Louise’, but that may cast Mr David in the Brad Pitt role. Only a young Brad Pitt can do that.

snakes, slowly

Progressive Supranuclear Palsy is a terminal, degenerative, brain condition. There is no treatment and no cure.

My mother received this diagnosis in 2007. Surprisingly, it wasn’t a hard to hear diagnosis- we didn’t understand. We didn’t know enough to be freaked by “Progressive”. We’d never encountered neurological illness, so we still expected that there’d be something to be done. That delusion wasn’t helped by the fact that the consultant gave us the name and no other information. No fact sheet, no phone number, no website, no specialist nurse. We went home, happy to have a name. Eventually, with the help of Dr Search Engine, reality began to dawn. We found limited information and support. Before long, we learned that we were the experts- how could that be possible?

medusa

Medusa, Carravagio

PSP is like a series of snakes, active in the brain. Sleeked. Slowly, deliberately, without compassion, squeezing themselves round proteins and neurotransmitters, tangling the communication systems. Squashing the the ability of the brain to tell the body what to do. A slow onset paralysis.

Medusa, a beautiful woman transformed into a mask. Powerful and raging, affecting anyone who looked at her.

The eagle eyed reader may have noticed that my input to the Health Activist Writer’s Month Challenge has been, at best, sporadic. It seems I’m not yet beyond setting unrealistic targets. This post was in response to #HAWMC prompt 8 “If the health condition of a loved one was an animal, what would it be?”