UK Support Group

I received an unwelcome letter at the beginning of the year. It informed me that I had been chosen at random for a reassessment of my DLA award and that a staff member would be visiting me at home. This made me apprehensive as my original assessment had been made ten years before and I had no idea how the regulations had changed. The man arrived carrying a 36 page questionnaire. However, he was very helpful and after two hours, we had completed the form. Hence, the next letter from the DLA office was a surprise; they had insufficient information and now needed an examination by a doctor! In due course, a private doctor arrived from 40 miles away bearing another 36 page questionnaire. Two hours and a physical examination later, it was all completed. If you are singled out for reassessment, don't be too alarmed. My allowance ended up being doubled.

During the year we have set up a database of children in the UK who are suffering from TM. The objective is to enable parents to identify other families with similar problems whom they can contact to compare notes. If you have a child with TM and would like to be included in this database, please contact me. Note that the information is only available to others who are on the database and it is not available over the internet.

Geoff Treglown
geoff.treglown[AT SIGN]btinternet.com
015394 34 677

In an earlier Newsletter I described members' experiences with alternative forms of treatment. Sandy Smith has contacted me to share his experiences with acupuncture which I include below.

Treatment with Acupuncture

My initial attack of TM occurred in 1988 and recovery during the next year involved a wide variety of different sensations. These included pins and needles and muscle spasms amongst others, but the worst, by far, was bouts of very severe white-hot pain. The bouts of pain lasted for approx 20 - 25 minutes and occurred up to four times a day over a period of several months. The pain was so intense that I often passed out for a few minutes. Doctors tried various combinations of drugs to control the pain, but nothing seemed to work.

About nine months after the initial attack, despite having no feeling in the lower half of my body, I was able to drag myself around on elbow crutches for short distances. I then saw a consultant neurologist who told me that my walking probably wouldn't improve further and I would "just have to learn to live with the pain." I was then referred to a different hospital as this prognosis might be easier to accept from a second source.

My wife and I both refused to accept this situation and, as I had used acupuncture for back pain, long before it was officially recognised by the health service, I decided I had nothing to lose by trying it again. I attended a private clinic for two years. Acupuncture did not take the pain away completely, but it certainly reduced it to a more manageable level and I never did pass out again. Because the pain level was reduced, I was more able to concentrate on learning to walk again.

I eventually almost had to force our GP to have me referred to a pain management clinic at our local hospital. The staff at the clinic is exceptionally good and I now have 20-minute sessions of acupuncture on a monthly basis, which is as often as the hospital budget will allow. I am one of the few people who suffers from recurrent bouts of TM, and have actually had a home visit from the pain clinic when acupuncture reduced the tension in my spine within 15 minutes of the needles being inserted.

I realise acupuncture isn't a cure and it certainly doesn't take the pain away completely, but for me, it keeps it at a more manageable level and this, in turn, helps me to remain mobile. All I can say to other TM sufferers is, don't give up, even when the doctors appear to give up on you. Anything is worth a try.

If you would like to discuss this with Sandy, his phone number is 01333-311 671.