Tag Archives: friends

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.



thump, thud, bash

Thud, thump, crash.

That’s the sound of a newly blind dog manoeuvring his way around the house. Head down, he barges on, into walls and doors and chairs.

We talk to him, rattle keys, wave food under his nose and attempt to steer him around furniture.

“Should we move the seats?”

“Where would we sit?”

As the insulin takes effect, we have fewer puddles to clear up. Had we a choice, we’d take the puddles anytime. At least we could clean the floor. We all have a lot of getting used to it to do.

In the meantime, I browse the internet for enlightenment.

from: http://www.halosforpaws.com/our-dog-head-protection-product.html
from: http://www.halosforpaws.com/our-dog-head-protection-product.html
from: http://muffinshalo.weebly.com/photos-and-videos.html
from: http://muffinshalo.weebly.com/photos-and-videos.html

Of course, what our girls really want is a guide dog for Jake, because it would be ‘cute’. Apart from having to take 2 dogs out for walks, lifting what needs lifted and all the other tasks that girls find objectionable…

rounding up the troops

Ditzy is our Commander in Chief. She does all the organising- booking the rooms, chasing up participants, bringing the cups, the biscuits and the leaflets. Driving around the region to help people gather together to help each other.

It’s PSP support group time.

It’s easy to underestimate how important support groups can be. Some groups focus on ‘doing’, fundraising and the like. At the minute our three small groups view the room as a few hours of respite. A chance to just be. A chance to share. Sometimes the combination of raw emotions in the room can lead to tense situations, More often there is an outpouring of recognition, ‘me too’. Validation. That very powerful feeling of ‘belonging in uncertainty’. Talking to people who understand what they hear. Asking the questions you don’t want to ask of people who know those questions, who’ve had to work out their own answers. Managing to laugh, despite yourself.

It is humbling to be part of conversations with people about loneliness, isolation, being dismissed by doctors. To hear people ponder how their loved one may be better of if s/he had a form of cancer. To be with people as they cry in despair, as they cry for their spouse, as they cry for the life they have lost. People grieving as their loved one lives. People talking about being abandoned by family, by friends, by health professionals. And the odd celebration- a neurologist or a physio or a social worker who was helpful; a technique or an aid that worked for a while.

#rdd14IRL #rarediseaseday

When I wonder, through my brain fog, what I’m doing, I consider the support groups. When I talk to medical students, allied health professionals, government Ministers and civil servants, commissioners, I’m talking for all the people at the support groups. People like Herself, or my aunties, or Ditzy. I’m doing it for us all.

You know who to blame!

Contact the PSP Association

Telephone: 0300 0110 122

Email: helpline@pspassociation.org.uk

If you or your family live with a rare condition (or have done within the last 5 years) please consider completing the LIving Every Day with Rare Disease survey: we need your knowledge and experience to shape the way that treatment, care and services are managed and delivered.

survey homepage


When I talk about rare disease issues, I always give a bit of personal context. The issues I raise and the reflections I make are only effective because they’re based in the family’s experience. Me pretending to be a confident lecturer only works because I spent the time being lost and bewildered, battling for, and with, Herself. I start with a picture of my mum, looking happy and well at The Brother’s wedding (the crutches are hidden- the progression was underway but we didn’t know it).

I talk about all the things we learned- the limits of medical expertise, wheelchairs, therapists, the dread of a late night phone call.

But we also learned about the power of someone saying “I know about PSP. I can
help.” A connection. Someone who understood the issues, and who walked with us.
We learned the power of asking questions, and of being asked.

I show a slide of two Edwardian ladies, walking sensibly side by side. They have hats and gloves and look like they are good living. Just like their real life counterparts…

driven to drink

We all need support. It’s important that we work together, that we build on each other’s learning and experience.

I have made real live actual friends through blogging. The bloggy buddies I’ve met, I feel like I’ve known for ever. Most of you I may never meet, but we connect, we are friends. I was delighted when Debra from breathelighter contacted me last week. She’d come across a film, thought about rare diseases, thought about me. How cool is that?

The film has it all- cute child, rare disease, a wonderful dog, love, friendship. The power of connection. The importance of having someone to walk along side, to share the load. Love. Be prepared to sniffle when you watch it.


Everybody deserves that connection. Let’s do what we can to support each other, to ensure that we all get that chance. Edwardian hats and gloves are optional. Blue drinks may be compulsory.