THE ORTHOSTATIC TREMOR UK SUPPORT GROUP
Dedicated to supporting you
Debbie and Andrew Finnerty
NHS Liaison Officer
CUE 1 Liaison
Orthostatic Tremor UK Support Group are happy to welcome anyone who has been diagnosed with Orthostatic Tremor to the support group, as long as they live within the UK and adhere to the GDPR law. (UK Data Protection Act 2018).
We are a friendly, caring group who offer help, support, advice and understanding. A 'Welcome Pack' is sent to every new member which gives further help and useful information.
A bi-annual newsletter is issued to all members, and everyone is encouraged to actively contribute articles.
Localised groups meet within their regions, organised by a member who will co-ordinate a suitable venue, for 'Coffee & Cake' or an enjoyable lunch.
THE O.T. SOUTHERNERS
It was lovely to meet with everyone again after an enforced two-year break. It was a most enjoyable time! I hope you all had a safe and stress-free journey home.
‘On a wonderfully sunny Saturday in late May, the Orthostatic Tremor Southerners’ Group met together in a charming pub in the heart of the West Sussex countryside. The Bat & Ball Country Pub and Haywards Restaurant is near the delightful village of Wisborough Green and was the perfect location to gather to enjoy a lovely lunch together.
Twelve of us came, from as far afield as Hampshire, Kent, London, as well as Sussex itself. Eight of us have a diagnosis of Orthostatic Tremor and the other four were partners who came along as valuable support. It was a great time and so lovely to chat together, make new friends and to have the opportunity to exchange experiences, ideas and coping strategies with others who understand exactly what life is like with Orthostatic Tremor, and how it affects us and our families. We enjoyed talking about our holidays, shared interests and hobbies.
I would really encourage others to meet up if they get the chance; it is such an encouragement and so worthwhile!’
We endeavour to organise an annual meeting, choosing a different region each year, to accommodate the nationwide membership. It creates an opportunity to the meet the group's committee and other members. Forward planning, issues of concern and development ideas are readily put on the agenda.
An overnight stay is possible, especially those who have had a long journey, but others stay to enjoy a sociable evening dinner.
The group's Facebook page is a 'closed' link and can only be accessed by registered members, which protects their privacy. Members have a valuable input, discussing many subjects relating to all aspects of Orthostatic Tremor, which provides an informative platform on subjects, which may include availability of benefits, coping with the debilitating symptoms, medication and helpful aids. Frequently, it alleviates the feeling of isolation, lack of understanding, frustration and depression.
HEAR FROM OUR MEMBERS
"The friendship throughout this group is such a lift at times."
"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."
"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."
"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."
A video of my shaking legs a few years back: https://youtu.be/qphV62ZAWZw
"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!"
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.