A wheelchair-bound Pembroke woman is banking on communi ty generousity – appealing for the use of a heated swimming pool so she might continue with the therapy needed for her rare disorder.

Tonya Symonds, 23, of North Shore Road, has Complex Regional Pain Syndrome (CRPS) an uncommon, chronic condition that usually affects the limbs.

Although rare, the disease can also affect other parts of the body and sufferers feel intense burning or aching pain along with swelling, skin discoloration, altered temperature, abnormal sweating and hypersensitivity in the affected area. It is more common among women than men, and the cause is not clearly understood.

Miss Symonds was first diagnosed with fibromyalgia while a 12-year-old student at the Berkeley Institute. More recently, the diagnosis was changed to CRPS. While her classmates were studying for maths and science exams, she was undergoing a battery of medical tests.

"I have been in a wheelchair for about eight-and-a-half years," she said. As a result she is now largely confined to the lower part of her house, because she cannot get up the steps.

"When it first came on, I was bedridden for about a month, maybe two months. Then I went to my first physiotherapy appointment. The therapist had me doing exercises on crutches and canes."

At first she coped, but in the summer of 2000, her flareups of pain snowballed. She began having attacks closer together with little recovery time in between.

"In the fall of 2000 I wasn't doing that well," she said. "The pain had gotten so great I was walking shorter distances. By mid-November I was paralysed with pain.

"It got to the point where people from home care were coming in to assess me. They said, 'Move your leg'. I would be trying and trying, but it would hurt and my leg wasn't actually moving."

In her situation it was easy for depression to set in at times. Not being able to graduate with the rest of her class came as a terrible blow.

"That was the only goal that I was really looking forward to," she said. "Whatever happened after high school I didn't know, but that had been my goal since primary school.

"When I was at school my grades were good. I wasn't an A student, but I passed things. I was on the honour roll a few times."

Now, the pain on her worst days is not pleasant, but it is not nearly as bad as it was when she was younger.

"I am very grateful for that," she said. "I have been on so many different medications, but the medications weren't a magic pill.

"Everything has just been really hard-fought. Theoretically, I should have been on my feet by now.

"I have come close many times to walking again, but my progress always seems to go backward. Some of it is due to the illness and some is because I have left in-patient therapy too soon."

There have been times when she has needed help just sitting up, but on the day Miss Symonds spoke to The Royal Gazette, she easily crossed one leg over the other, chatted, and pushed her wheelchair around her kitchen.

"I was so happy the first time I was strong enough to get back onto a bench and get into the shower," she said. "I felt running water and I was the happiest person. No more bed baths!"

During her illness there have been many gains and losses, but she is hoping that many of her recent accomplishments will be permanent. Part of it she credits to the swimming therapy that she first started when she was in a rehabilitation programme in Los Angeles, California.

The first time she did significant pool work, just having the water wash over her body caused pain, but eventually she was able to do strengthening exercises with weights.

"That was much easier in the water," she said. "Then the second time I did pool work I went to a rehab hospital in Woburn, Massachusetts. They had it fixed so I could do pool therapy there also.

"It was such a while between the two that I did have to start from scratch. It worked well. The people at the hospital in Woburn were hard to work with sometimes, but I still made progress. At that point I was walking down the middle of the pool, without anyone holding on. In the beginning, I had to hold on to something."

She also did walking exercises in the hospital, but they were hard going.

"It was painful," she said. "There was crying. In the end it wasn't obtainable."

Back in Bermuda her progress was slowed because her therapy was only a few times a week instead of several times a day.

She was overjoyed when a family friend's pool became available this summer and she was able to begin a regimen of self-directed therapy.

"It took a little while to get used to it again because I hadn't been in the pool for awhile, but I could still do more in the water than I could do on land. But it was still therapy. I still had to push myself."

She made progress that she was happy with, although she had hoped to move along faster.

"I just have to tell myself that going forward and backwards is part of the game," she said. "It gets frustrating. I do the exercises I remember doing. I stretch in the water until I feel like it is working that area.

"I started doing a few laps. In the beginning I didn't think my body would do that. At the end I was able to do a couple of laps."

Unfortunately, the pool therapy came to an end with the onset of the cooler months.

"The cold water isn't good for my muscles," she said.

She wrote a Letter to the Editor of The Royal Gazette asking for the community's help in locating a heated swimming pool.

Since that letter appeared, she has received several telephone calls. One call was from a lady who said her church was praying for Miss Symonds, the other was from a lady with Lyme Disease.

"I said I had been tested for that and it was negative," said Miss Symonds. She said she was tested four times before it tested positive.

"So that is an option. If that is the case there is a treatment that may help the pain. If the pain was gone then walking wouldn't be as much of an issue."

Miss Symonds spends most of her days now taking an on-line psychology course. She hopes to one day go to school abroad.

To contact Miss Symonds telephone 292-0221 or send an e-mail, still_onwheels@yahoo.com.