|My son, Eric, and I.|
The Marie Curie Hospice in Hampstead has, without a doubt, vastly improved my quality of life with MND. When I was diagnosed in April 2000, my neurologist gave me a leaflet about the MND Association. I was too frightened to phone. When I finally summoned up the courage on a Friday afternoon, there was only an answer machine. I didn't leave a message. Now there is MND Connect to help.
I was blundering around, becoming progressively weaker, without any support. My GP had told me that I probably wouldn't live to see my children grow up. The therapist at her surgery said that she couldn't help me, but could offer me a shoulder to cry on. I decided to cry on my own shoulder. Eventually, a friend contacted the MND Association, because I was really struggling.
I was given an association visitor and she told me about the hospice. I was only 34 and couldn't imagine hanging out at a hospice. I told her that I wasn't interested. Luckily, fate seemed to intervene. I had become painfully thin, couldn't sleep and was very depressed. My brother made an appointment for me to see a doctor at the hospice. I was too weak to protest.
The doctor was extremely kind and understanding. She suggested that I start attending their day therapy unit, to use the gym and have some massage. I agreed, and before long the hospice became part of my weekly routine. I started to see the Medical Director, Dr Adrian Tookman. He provided the medical support that I desperately needed. Having worked with terminally ill people for a long time, he seemed to understand how I felt. I was comforted for the first time since diagnosis. Unfortunately, I couldn't see him when Harry came with me, but this is an old photo of us together.
Adrian helped me through a nasty divorce, to manage the changes that MND forced on me, and treated my depression. I wonder if I'd still be alive, if not for him. Adrian's my hero! I have to mention a nurse who works with Adrian, called Aisyah Scott. I've had poor service from my district nurses, but Aisyah has gone out of her way to help me. She's more like a friend to me now, which is very reassuring. MND terrified me at first, but I no longer fear it. I'm sure that is because of the support I've received at the hospice.
So, I've given you the background. Now I want to use Harry's photos to bring the story up to date.
I try to use the motomed bike for at least 25 minutes, to keep my legs strong. It's probably the most popular piece of equipment in the gym, so in great demand. I hope they'll have the funds to buy another motomed soon. The gym is fairly small, so finding space might also be a problem. The hospice only receives some government funding, so relies on fundraising and donations from generous individuals, organisations and income from their shops.
One of the physiotherapists, Jill Pemberton, moving my legs and hips. I've been experiencing hip pain recently, so these exercises are really helping to keep my joints mobilised. All of the physios are very experienced and I can trust them. It's pretty disconcerting when your body starts moving in a totally different way. They help me to manage these changes and also recommend useful equipment.
Several complimentary therapies are available at the hospice. I could never afford them privately, so I'm very grateful to have had the opportunity to try them. I often used the hydrotherapy pool at first. It's so wonderful to feel weightless in warm water, when every movement on the ground is such an effort. I've also had reflexology, tried homeopathy and more recently, hypnotherapy. I was quite ill last year and also depressed. Sometimes, living with MND can make me feel hopeless. Hypnotherapist, Paul Byrne, (below) helped me through that. He's patient and helps me find ways to cope with problems that crop up. Sometimes, it's just enough to have the space to forget about worries at home. Paul's also very funny and it's good to have someone to laugh with.
The hospice also offers respite and I've spent some time as an inpatient there. The staff are good and caring, although very busy. I'm glad to know that I have somewhere to go if I'm ill. I find hospitals frightening, especially since my speech is so badly impaired. There are no specialist centres for MND sufferers, so hospices really do offer us a very important service. I think that many people believe that hospices only help cancer sufferers, but they do a great deal to help patients with MND too. End of life care is also important when you have a terminal illness. It's good to know that I'll be able to pass away with dignity and peace (I hope!)
This is my friend, Alicia, whom I met recently at the hospice. Alicia has MND and can no longer drive. Hospice transport brings her to the day therapy unit twice a week. MND can make you feel very isolated, but the hospice provides an opportunity to get out and meet people. There are also several volunteers kindly helping out, so you're guaranteed to see a friendly face.
|Alicia, Eric and I, in the beautiful hospice garden.|
I'm hoping to get a team together to volunteer at my hospice for Mitzvah Day 2011.