Volume 6 Issue 1
TM Support Group in Scotland
My name is Margaret Shearer and I live in Prestwick, a small seaside town on the west coast of Scotland in the United Kingdom.
I awoke on the morning of Monday 31st December 2001 with terrible chest pains. I convinced myself that I had heartburn; and, by the way, I had never previously suffered from heartburn. I took appropriate meds to no avail. I was, at this time and for the previous seven months, living and working in Miami Beach, Florida. During the next hour, the pain became so severe that I found I was having difficulty taking a breath and I knew I would not be fit for work that day. As I had been feeling fine up to retiring the previous evening, my boss took me to the emergency department at Mount Sinai Medical Center on Miami Beach.
By the time we made it to the ER, I was aware that my left leg was not capable of bearing weight. The medics felt, due to the extreme pain in my chest area, I should be admitted with a suspected heart attack.
Tests came back negative. I asked if I could be allowed to go the toilet, as I had not gone since the previous evening. The fact that I could not pass urine was not as concerning to me as the realization that I could not walk properly. When trying to get back onto the trolley, my legs were collapsing from under me. I was then reexamined and told that further tests would be done on what was thought to be a stroke. That evening, despite all tests being negative, I was admitted due to the increasing pain being experienced in my breathing.
As midnight approached for the start of 2002, my thoughts were with my three sons and my extended family back home in Scotland. I was hoping that all would be okay within a few days, and that they would never know I had celebrated the New Year in the hospital! During the early hours, I called in a nurse to ask if I could go to the bathroom and she assisted me. I was still not able to urinate, and decided to return to my bed. I fell onto the floor trying to get up from the toilet. My legs were now both totally incapable of holding me up and my right arm did not have the strength to pull myself back up onto the toilet.
I was concerned that the paralysis was spreading and aware that my trunk area was also numb. My chest felt as though it was being squeezed so tightly that I could not breathe properly.
At this point, I insisted on being catheterized thinking it would resolve the discomfort. Of course, that wasn’t so. In the morning of January 1st, I was told that further tests would have to be done. A stroke was still being considered, especially as my condition was deteriorating despite my taking painkillers. I had four spinal taps done and several MRIs in the next four days. At one point, I was told that I would have to go for a surgical procedure to remove a growth on my spinal column. A second opinion was sought and further scans revealed that I had a lesion from T1/2 through to T7 and they were considering TM and, possibly, MS.
Only my left arm was functioning normally. I finally broke the news to my family about what was going on with me. I insisted that I would be back to normal and at work again in a few weeks. I was led to believe this by the consultant. I was also told that I was the first person at the hospital to have been admitted with these symptoms and concerns. Suggestions were made that perhaps I had caught a virus while I had been in Scotland a few weeks previously. This was later discounted as the lumbar punctures were returned with no evidence of a virus or bacteria.
On the 4th January 2002, I was officially diagnosed as having Acute Idiopathic TM. I was placed on intravenous steroids, gabapentin, amitryptilin and antibiotics. I continued to remain at Mount Sinai and was receiving excellent treatment, including physio and occupational therapy. My sons, who were studying Neuroscience and General Medicine in Scotland, convinced me that it would be in my best interest to remain in the States, as there were no TM specialists in the UK. My insurance company was also paying all of the medical bills and receiving weekly updates from the consultants on my progress from the rehab department that I was attending for six hours every day.
By March, I still had not reached a state of self-care. When the insurance company suggested I go into a supportive care home, I decided that I should return to Scotland. My hope was that I would continue to make progress to a stage where I could go back to work. In Scotland, I was given fulltime, around-the-clock care in my own home and attended the Douglas Grant Neuro Rehab Centre in Ayrshire where the staff were so caring and have continued to support me these last two years. I have discarded my body brace and leg splints and learned to walk again over short distances with the aid of a walking frame and an ankle splint. I have continued to need all of the meds that I was taking in the States.
On the whole, I no longer need constant care. I have superb support from my GP, the Urology Department and all of my family and friends. In 2002, I met my challenge of learning to drive again and now have a specially adapted car that takes me and my wheelchair, as well as passengers. Last year I read of Cody Unser going scuba diving and decided that would be my challenge for 2003. I started training with a physio at a local swimming club for people with disabilities and increased my stamina so that I could swim the 25 lengths of the pool. I then had to convince my consultant to allow me to try out the scuba equipment, as I needed a medical certificate. In August, I completed all of my ocean dives in the Mediterranean to gain my Open Water Scuba Diving License. The fact that I was in a wheelchair did not make a difference to my instructors and I managed to enter the boat at the harbour side on each dive.
At the present time, I am still in constant pain which permeates my upper back area. It is very sensitive to touch. I receive a course of acupuncture at various times which helps to reduce the pain to a point of acceptance and allows me to continue with exercises. I can walk for short distances with my walker, but use my wheelchair outdoors as I constantly fall without any prior warning. My left leg has regained mechanical function, but remains numb to touch. My right leg has no feeling in it at all. My right arm has regained 6/20 strength, but goes into spasms when I use it too much. I have had numerous UTI’s, which knock me back a bit. I experience daily spasms, shooting pains, tingling sensations, headaches that range from crushing and throbbing to aching and feelings of nausea. I am on a lot of medication, including herbal and also have become a vegetarian since reading a book ‘Foods That Fight Pain.’ I have learned to self-cath and need suppositories for my bowel to empty. I still have the banding feeling in my trunk area and, at times, the spasms there still take my breath away. Recent urology tests show no improvement in that area, but I tell myself that it could be worse. I have had no accidents!
During my initial stay in Mount Sinai, my neuro told me that I would be able to find out more about my condition on the Internet. On going in to the TMA web site, I found that there was a UK contact and I emailed Geoff Treglown that I was returning home and would be interested in any information from him. Within a few days of my arrival here, Geoff contacted me on the phone and has been supportive ever since.
In October 2003, I took up his invitation to attend a support group meeting in Manchester. For the first time, I met people with the same condition as me, including Sandy from Fife in Scotland who, like me, had driven more than five hours to attend this meeting. I was thrilled to hear so many stories from such a courageous group of fellow human beings. Aware that no such group existed in Scotland, I asked Geoff to see if any people in Scotland were interested in a group meeting.
With the wonders of email and the telephone, the first Scotland Support Group for TM met in November in Glasgow. We had ten people who have TM come from all areas of Scotland to attend that meeting with several caregivers. There were seven people who could not attend, but hoped to do so at the next meeting in January 2004. Since then, our numbers have grown to twenty people. They range in age from 22 to 68 years and the members of our group have been diagnosed with the condition for time spans of three months to 54 years. There are 15 females and five males in the group. Two of our members have Reccurent TM, one has Devics, one has ADEM and 16 of us have TM. All of us have attended various hospitals in the UK, take a variety of medications and are at different levels of recovery.
Our meeting lasted for over four hours. We each introduced ourselves and discussed how the condition had affected our lives, both personally and professionally. Like Sandy and I, this was the first time that any of them had met another person with TM. We discussed the benefits of our various medications and what types of treatments we were getting from the various medical personnel and departments. At the close of the extended meeting we agreed to meet again after the holidays.
TM has changed my life in so many ways, but the people I have had the privilege to meet because of it has been both gratifying and joyful. No words could express the level of kindness, care and support that has been shown to me these past two years. I hope that our Support Group will be the beginnings of getting the word out to our medical community and to encourage them to perform research on TM. We will continue to share our experiences, showing empathy and compassion, and making others aware we are here to assist anyone who contacts us.
Future meetings will be held in the Neuro and Spinal Rehab Centre at Southern General Hospital, Glasgow. Announcements of our meetings and other information about our support group will be posted on our web page; please check our page regularly. (www.myelitis.org; click on the link ‘support groups;’ click on the Scotland Support Group page). If you are interested in the Scotland TM Support Group and want to know more, please feel free to contact me.
Telephone: 01292 476758
Email: margaretshearer[AT SIGN]hotmail.com
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