Our newsletter, now named "NewsLink" has been published continuously since 1997. All available issues are published here. Browse through them using the links at the bottom of the page, or use the "search..." box above to find items of interest.


September 2011 - I’m Still Standing (Just)

During a recent conversation with Ian, our chairman, I suddenly realised I was reaching my “3 score and ten” this year and having developed what I now know as HSP type 31 from pre the NHS (1948), I was probably one of the few people who’ve had experience of the condition and the progressive disablement that goes with it for a full lifespan.

Having been born into the back streets of Tyneside during WWII; with my two elder brothers evacuated and my father dead on active service I was brought up by my widowed mother and can remember being trailed around those white tiled school clinics with my funny walk.

Subsequently, as life moved on, I believe disablement isn’t a handicap but another tool in coping with the frailties and circumstances of life thrown at everybody as social and personal change take place. Having the disablement just gives you another set of tools others don’t have, to cope with life. Nature gives you compensatory senses and skills to help with what normal life throws at you, such as patience, heightened reactions and development of the other limbs and most importantly anticipatory survival skills (I always have a 2nd or 3rd backup plan to minimise risk to me). In my case, as I grew up, I was placed in normal schooling (not pleasant in the 50’s when you’re “different”) by mother who thought it best I learn to cope; went through to grammar school and into a 40 year career in the civil services because she told me I had to get a safe job as she wouldn’t always be there.


May 2011 - Wellington Loot!

It was Friday 30th October, the day before Halloween and my daughter Kathleen and I were driving to the HSP meeting in Devon. As we got closer, the road cut through hills on both sides of the road, making it a very scenic journey. These rolling hills escalated from either side, and trees and hedges lined much of our route. We drew closer to Ashburton and turned right at the crossroads where the Dartmoor Lodge Hotel is signposted. The sun was setting behind us when we arrived at the hotel on the southern edge of Dartmoor. The following day (Halloween) at 2pm, the Region 4 meeting was conducted at the hotel. It was at the end of this meeting that I stood up and announced my crazy idea to raise some funds for the HSP Group. I suggested that we should do a sponsored wellington boot dance at our next Devon meeting in March.

When the meeting had concluded and we were all relaxing in the hotel bar it was noted that I had a big problem at remembering people’s names, so in my head I gave them another name. While we enjoyed dinner in the hotel restaurant, one of the members asked if everyone knew their nick name I had given them. I had drank a drop of wine by this time and when I mentioned each members nick name lots of laughs were heard-the atmosphere was brilliant. At this point I knew I could trust these people, I knew I could call them my friends and we could share a laugh and joke together. It made me feel as if the bizarre way to raise money, which I had announced earlier during the meeting, would work. My idea was for members to dance for 20 minutes in wellington boots and to get friends and family to sponsor them for doing so. There were to be no rules, simply to put on wellington boots, wiggle bottoms and move arms, if necessary it could be done from a wheelchair, a seat or a mobility scooter.