Rob the builder, from eclipse property services has had his baby - called Tia, he is back at work now, and with his faithful assistant also called Rob, the building is back on track. The internal walls are nearly complete now, so over the next few days the facing bricks will be laid. Estimated completion of the total project is around 22 April. One thing that is shocking me is the price of the bifold doors - I think I got a bit carried away with the design of it because they are going to cost in the order of £7000!
As some of the people close to me know having motor neurone disease is getting the better of me now, so today I was invited to have a look around St Margaret's Hospice in Taunton. I must admit I was worried about this, but when we arrived we were greeted in a warm and kind manner, the whole place had the lovely feel, we both had a guided tour of the establishment, and were invited to stay for lunch which we did, and I was also treated to some physiotherapy whilst I was there too. I must admit this has dispelled the myth of hospices, as most people think these are the places you go to die. Although they do have a inpatients Department which can cater for situations where you cannot cope at home. All in all though a good day.
well it's only been a week and a day that I have been waiting for my wheelchair cushion, and at lunchtime today it arrived. You don't realise how much you rely on a wheelchair when you need one to go out!
eventually everyone with motor neurone disease will need some form of environmental control in their house, and it's getting that way with me. I'm finding it difficult holding a telephone and dialling the numbers, operating remote controls, opening doors. I wanted to get someone out to see if there was anything that I had missed with the design of my extension electrically. But I think I've thought of most things from what they said. They use systems from RSL steeper who make these devices, there are things operated from my iPad and when you lose the ability to use the iPad you can use a switch to control it. These things can control most things in your home, like television, curtains, door openers, telephone the list goes on but only the essential bits are available on the NHS - let's see what end up with!
one of the hardest things to come to terms with with having MND is the eventual inability for you to swallow. Recently I have started choking when drinking thin liquids like water and beer! so today a speech and language therapist came to visit me she gave me some techniques like dipping your chin when swallowing to close off your our way to prevent choking, and gave me some advice on things to avoid like, chips, steak, crisps, and very low viscous liquids like water. There is a thickener that can be added to drinks to make them more viscous but she did not think I was ready for that yet, but no doubt I will need it soon. they are going to keep me under observation every month from now on.
the following the barrage of referrals performed by my doctor recently when he came to visit, today I had a podiatry appointment. Not really my idea of fun but needs must I guess! when the people were poking around with my feet and lower legs I did think what makes someone want to do a job like this!
when I got back today, I noticed a wet patch on the wheelchair cushion that I had been sat on for the last couple of hours - I thought I must have had a sweaty backside until I felt it it was a sticky gunge - the Gell and of the cushion had leaked!
I rang up the people that service and repair wheelchairs saying that I did not have a spare cushion and would be housebound until it could be replaced - they said they would scour their store cupboards for a temporary one whilst my prescribed one would need to be ordered. I urged them to get on with it so let's see?
We went to the MNDA meeting at Monkton Elm garden centre, where people affected by this devastating illness meet up. We found out that another fellow sufferer lost the battle over Christmas, so I send them my sincere condolences.
On a more positive note our friend Neil who did the photography at our Christmas party came along, so it was nice to see him again.
We are now into the third week of the building itself now, and it's finally starting to take shape, the two Rob's from eclipse property services did a grand job today laying got all the insulation ready for pouring the concrete tomorrow. The floor is insulated with 4 inches of Celotex rigid insulation.
Went to the orthotics Department in Bridgwater, to see about the viability of having some leg splints made up to enable me to keep on two legs for a bit longer - luckily because I have been doing tendon stretches he said we could try some dynamic carbon fibre splints - which sound pretty high-tech - that's hope they work!