Alex and Ginger have met Pete a number of times at the National Hospital in London. Here’s his update:

Hi Ginger and Alex - Two years ago my brother, his partner Pauline and I had a great holiday in the Lake District  which was topped off with a visit to an old friend of mine, Phil, a craftsman who makes all sorts of things out of willow. He even got us to have a go at weaving a basket - so now I am the proud owner of a willow basket made by my own fair hand ! 

In February 2023 Pauline arranged for a fantastic, belated, 60th birthday present for me. We went to a glassblowers workshop where we made glass paperweights, the type with swirls of colour and bubbles inside - that was great fun! Our holiday that year was in Devon where I hired a wheelchair with huge tyres so that I could drive along the beach and down to the waters edge. We also visited two prehistoric  stone circles at Stonehenge and Avebury, both of which were very impressive.

This year we went to Wales and to the top of Mount Snowdon, by train I hasten to add! It was a bright sunny day with clear blue skies and awesome views. Over the past three years we've to the May Day Beltane Festival of Fire at Butser Ancient Farm which culminates in the ceremonial burning of a huge effigy of a wicker man accompanied by a band of about 30 drummers all dressed in Celtic clothes - it's an amazing experience. 

I'm still enjoying going to concerts and have started going to the occasional musical. I continue to love cooking and regularly cook an evening meal for a friend, Alison, and we polish off a bottle of wine between the two of us a really lovely way to spend an evening together.

I still go to local a Huntington's Disease group every Thursday - they are a very friendly bunch and I used to love going to their allotment every week. The sad news is that they have had to give it up - mainly, I think, because of a lack of able bodied volunteers to help out. It's such a shame as that was one of the highlights of my week. ( We had hoped that whoever took over the allotment would let me carry on going to work on it. That was nearly a year ago apparently there are some insurance issues - something to do with health and safety. Still at least there might be some hope  of things getting sorted out. ) 

As far as my condition is concerned the BoTox injections I have in my face continue to work extremely well - I have not bitten my tongue or cheeks for many years now. Eating however can be slow and messy as my tongue tends to push the food out of my mouth. The clarity of my speech can be quite variable and is particularly poor when I'm tired  - but I can generally make myself understood. My mobility remains poor and I am always in the wheelchair. I have been having some physiotherapy and I was making good progress - so much so that I was able to walk the length of the corridor with the aid of a walking frame. Unfortunately, for the past six months or so I have been suffering with sciatica in my right leg and this has meant I've not been able to keep up with my exercises.

To end on a more positive note I think I am now  more able to manage the pain from the sciatica and so I am hoping to get back to doing regular exercise and we will see where that takes me.