Hear from our Members
“The friendship throughout this group is such a lift at times.”
Susan
“The support that our group gives us is invaluable, I will always be grateful for finding them, knowing that there are people who understand what you are going through and what you are talking about removes the isolation that O.T. produces.”
Patricia
“My POT started in 1986 when I felt a slight wobbly feeling whilst waiting for our son to return from an Air Scouts trip. I had to go and sit down. I had no more wobbles for a few months but then very gradually, the urgency to sit down became more intense over the years.
I was diagnosed by Dr. Peter Bain in Charing Cross hospital in London in about 2010 and this was verified by a doctor at Addenbrooke hospital a few months later. Since then the progression of the symptoms has been slow but in the last few years it has got a lot worse to the point now where I can no longer stand to do anything, without holding onto something and housework is almost impossible. I have been referred back to my neurologist as I had a second fall in the garden. I had no bad injuries luckily; just a scraped elbow and possible bruising to my hip/back which is causing sciatic pain. I’ve also been referred to a movement disorder specialist and in addition, I am having a Dexa scan on my back on the 1st August 2022, which may be affecting my walking ability. I take 2 Clonazepam 3 times a day for my leg tremors. We try to keep smiling though and stay positive.”
Jackie H
“It has and still is a difficult journey but we all know that so here is something to make you smile. Every Christmas I used to visit the family grave but the last time I fell prostate over the grave looking as if I was grief stricken. I managed somehow to get myself to a sitting position and then shuffle on my bottom to the nearest headstone and managed to pull myself to a standing position holding onto the headstone. It was nearly closing time and there was nobody around then I spotted a lady walking her dog I waved frantically and she cheerily waved back thinking I was being friendly! Eventually she realised I was in trouble and came and helped me to my car at that stage I could manage with a walking stick now I have a walker and a wheelchair.”
Jacky C
From previous journeys I discovered booking assistance through the airports is either a brilliant service or a very restricting one. I therefore decided to purchase a foldable walking seat which tucks easily under my arm and I find it gets me through the queues in a fairly normal way. Sometimes just carrying it is enough to save any anxiety, knowing that a rest is to hand if and when needed.
The comments and looks I receive whilst using this chair is a story on its own but I really wanted to tell you about my travel experience in two different airports.
In the Spanish departure lounge a long queue was waiting to actually board the plane, I was wearing my sunflower lanyard and happily using my foldable seat. An airport attendant approached me and asked if I needed special assistance. I smiled and explained that as long as I had my seat I was happy to wait in the queue. “Are you sure?” She replied, offering me a chaperone past the queue. I was happy to wait my turn.
She then disappeared but within two minutes she was back saying please come with me, I’m going to take you straight through to the passport check desk and onto the boarding corridor. Wow! Impressed or what….and my husband was allowed with me too.
We landed at the UK airport and the queue through passport control was rather slow even when an attendant allowed myself and my husband to join the queue avoiding the standing booths. I don’t know why I was behind everyone else, but hey ho, out came my folding seat again to save the day.
A young assistant was observing the queues, pointing people in the right direction and as I drew level with her she looked down at me and said “I could do with something like that.” I asked her how long she had to stand and she said it was a 12 hour shift and could do with a seat now and again. I smiled and informed her where I had bought the seat. “Oh, I don’t think I’ll be buying one of those, I’d look a bit silly on that!” She replied.
I turned with a grimace to look at my husband who was looking back at me biting his lower lip. “Just don’t go there” he said and we laughed it off.
Patricia D
A video of my shaking legs a few years back: https://youtu.be/qphV62ZAWZw
NB. OT UK Support Group does not endorse any added advertising on media platforms
Martin W
“I have had OT for 39 years, it was identified at the old JR in Oxford about 30 years ago and they were very excited about it! It is only now I have deteriorated quite a bit and resorted to using a walking stick after pressure from my family!”
Cynthia M