1. ESTELLE'S STORY - MY EXPERIENCE OF ALTERNATIVE THERAPIES AND PARKINSON'S
I was diagnosed with Parkinsons in March 2005, although there is no doubt the symptoms began in 2002/3. I always wanted to go the alternative therapy route if at all possible. In all this time I have always been in one form of therapy or another alongside my medication. To rely entirely on medication is not an option for me, I like to feel I am helping myself as much as I possibly can. I suppose I am in a fortunate position that I can afford to do some of these alternatives as they do cost money and not many of them are available on the NHS. It is a great shame that many others diagnosed with Parkinsons are not always in the same position and paying for alternative treatments is sometimes out of the question.
Some of the many therapies I have tried are Alexander Technique which I continued with for about a year. This helps greatly with posture and getting in and out of chairs. I still continue to do some of it at home such as semi supine which is laying on the floor with knees bent and helps to keep the body and back straight. Massage is another very helpful therapy, it can ease out aching muscles and creates a good feel factor which is essential in Parkinsons.
One of the most helpful alternatives which I have been using every day for about 3 years since I went to Israel to try it out is, Gyrokinetics. It is all to do with free dance, keeping in rhythm and conducting in a rhythmic way. Of course a big part of this is the music I play which is stirring and gets right into your soul making me feel great. Plus sometimes I start to dance when I may not be feeling so great but in a matter of minutes I have left all that behind and get lost in the music and rhythm and find myself moving freely. Parkinsons is greatly helped by good endorphins, or feeling good about yourself and life. If this is missing depression may set in. I can honestly say that there have been very few moments of depression that I have suffered, and when it has, has, been very short lived. I generally try to do something active like dancing or go for a walk or even a bit of gardening. Any of these activities can lift us out of ourselves and create good endorphins. Having a positive attitude is one of the best things you can do for yourself.
Another favourite activity which can have an enormous benefit towards feeling lifted, is singing. I belong to a Parkinsons singing group and we get a huge amount of pleasure from singing plus, as it is run by a music therapist, we have many excercises for the vocal cords.
One very popular alternative is Tai Chi. I joined a Parkinsons group for this and found it very helpful in its slow rhythmic and disciplined way. However I enjoy table tennis very much and they clashed so now I do a bit of Thai Chi at home in my morning exercise regime.
One of my latest therapy interests has been autogenics,which for me has been beneficial in helping with anxiety and relaxation. Not a lot is written about it that I know of, but those who use it, like myself, have found it essential in its calming and centring way.
As you can see I have tried many different alternative routes to self help and all of them have given me something positive to cling on to. One very important aspect of all these is that they give you hope and the opportunity to do something for yourself when it is needed and not just sit back and feel sorry for yourself which in itself will lead to depression. Knowing you can find something to give you a boost and a feeling of hope, that there is a way for you to keep on top of this very difficult complaint is very comforting. As I said in the beginning, many of these therapies can be quite costly which is why a lot more funding is required if we are to alleviate those feelings of depession and instead live life fully with hope and positive feelings.
Estelle Phillips March 2011
2.WENDY'S STORY - ACCIDENTS, DIAGNOSIS, DISCOVERY AND RECOVERY
I am one of the co founders of this site and I want to stress to all of you out there that there is life after being diagnosed with PD. I kept seeing depressing websites and I am determined for this site to be helpful, uplifting and positive. That is why we called it Positive Parkinson's.
It doesnt matter if you are young, old, have dyskenisia or stiffness or in a wheelchair or use a walking stick, or have other conditions . It is possible to get your life back.
My story starts in 1999 I had experienced a lot of trauma and loss. in November 2001 a car smashed into my car I got out of the car without any injury just shock within a few days I felt I wanted to take my arm and leg off I thought I was experiencing Post Traumatic Stress. By Feb 2003 I was told I had hemi Parkinson one sided after seeing various neurologists, 5 in total I had to accept that I had PD. I wouldn't take any medication and went down the alternative route. I was still working and I had tried some drug which sent me like a zombie.
By 2006 I had to stop work and moved near my family. I could not hold knife & fork or write normally, my speech was getting quieter and depression was setting in. Then 2007 life started to change. I found an acupuncturist and deep acupressure massager, herbalist Qi Gong master (that was one person) and I was recommended to a PD Nurse who took me to see a neurologist who studies and researches PD. Within months with a little medication and the alternative treatments I started to improve. Then another accident when I slipped on my wooden floor at home and ended up with a partial hip replacement and diagnosed with osteoporosis. But with determination and a positive attitude life continued then in August 2010 I went to a 3 day workshop on Gyrokinetics that once again changed my life. As a result of Gyrokinetic training I have seen 40 PD lives changed for the better. I have not had to increase my medication and am not on L Dopa. We now have a group of 20 men and women diagnosed with Parkinson's and their partners who come to a class on Saturday mornings for 1hr 30mins which started in October 2010 and everyone of the PDs have improved and their partners also have gained so much from what we do.
What I do know is that Gyrokinetics, Qi,Gong, club swinging, dancing, have all contributed to my improved mobility, co-ordination and positive attitude.
Wendy Werth June 2 20111
3. ELAINE'S STORY SHE FIGHTS PARKINSON'S WITH POETRY
By Anthea Gerrie, September 28, 2011 This article appeared in the Jewish Chronicle on September 28th 2011
Many young women suffering from an incurable disease, leaving them debilitated and in excruciating pain, would allow their lives to be blighted with bitterness. But not Elaine Benton, who was diagnosed at five-years-old with Gaucher's disease, a genetic condition which disproportionately affects Ashkenazi Jews.
She fell in love, married, moved to Israel and had a healthy baby (albeit one she barely had strength enough to lift). She underwent excellent treatment in Israel to manage her condition and, despite the increasing pain which forced her to give up work, she lived a fulfilling life.But four years ago, when she was 44, she was hit by an even greater blow - Parkinson's disease. Her response was not to despair and ask "why me?", but rather to start writing about her increasingly difficult situation.
Parkinson's, Shaken Not Stirred is an e-book of poems which tells, with wry humour, of the daily frustrations and humiliations brought about by a disease that, as she puts it, "never lets up" and has changed every aspect of her life. "I can no longer dance, drive at night, shop for groceries or do the beautiful hand-embroidery I used to love," she says, speaking from her home in the Kadima moshav. "Even showering and getting dressed are difficult. I've become forgetful, I get exhausted from the smallest activity, occasionally choking on food or my own saliva, and am unable to sit still at a dining table, in a cinema or theatre. I walk in a sort of shuffle, sometimes coming to a halt altogether as if my legs are not listening to my brain."
So what's to joke about? "I think laughter is the best medicine," shrugs Elaine, who has touched a chord with hundreds of people since publishing her book in August. "People have emailed me from as far away as America and Australia, as well as England and here in Israel. Some of the messages - from carers and relatives of sufferers, as well as patients themselves, and doctors - were so touching that I cried when I read them."
The poems arose almost unconsciously, a by-product of the disease keeping her awake at night. She would set down themes and rhymes in a kind of automatic writing. "Words would suddenly come to me, so I would find myself scribbling down thoughts and lines in the darkness of our bedroom, not wanting to wake up Brian, my husband, by turning on the light. I couldn't stop writing - the words kept pouring out."
One of her poems is a quiet rant against her wheelchair. "Parkinson's is taking me on a road trip of my own/ Now I have a wheelchair that I'm reluctant to take home", she writes, but goes on to note that "now if my family want to go for walk along the seafront, I can go with instead of staying at home and missing out".
There are compelling reasons to be cheerful, she says. "I know there are many Parkinson's patients who have the additional problem of being depressed. I felt I had something to offer - a way of looking at the bright side, no matter how difficult and hard things are. Somehow, humour eases tension and takes your mind off the pain, albeit temporarily."
It is an outlook she acquired as a child, growing up in Potters Bar in Hertfordshire. "My mother always made the best out of a bad situation, so I guess I learned early on to do the same. I have a fierce desire to live life to the full and a strong fighting spirit. I am determined to make the best of what I have."
'Parkinsons, Shaken Not Stirred' see under BOOKS.