Stepping Out

10/10/2013 10:57 BST | Updated 23/01/2014 23:58 GMT


For any Parkinson's patient, stepping out, can be a stressful experience, even when invited to a happy occasion or event. Most healthy people don't realise what it takes for someone suffering any chronic condition to go out and socialise. Just showering, getting dressed, doing hair and make-up can take considerable time and precious energy. By the time I arrive at my destination, where the intention is to have a good time, I am already exhausted. Add on to this stress and anxiety at not dropping food, keeping up with many conversations going on simultaneously around me, all adds to the tension and uncomfortable feeling provided courtesy of Parkinson's! A friend so eloquently expressed this in a recent e-mail, "I even have to work hard at having a good time, it doesn't come easy". This statement couldn't be more true, and anyone suffering Parkinson's I'm sure can relate only too well.

I gave a lecture the other day at a hospital which was hosting a conference for Gaucher disease, where doctors from around the world gathered by pulling resources and sharing experiences; this is without doubt how it should be. I had to rise very early to ensure there was enough time for me to get ready, but I managed to have a catnap on the journey there. I spoke for 45 minutes, but had to keep sipping water as I could feel my voice was hoarse and not as strong as it normally is.

I have always been very talkative, coming from a long line of chatter boxes in our family. I guess this trait is hereditary! I have found that my voice has started to change which is a common symptom of Parkinson's. Sometimes when I talk, particularly if tired, it's as if someone has turned my "volume" down, sounding hoarse and often with a slow monotone voice. I heard about speech therapy for Parkinson's patients, and decided to do something about it. It takes patience and dedication, but the results can be quite amazing. If you have Parkinson's and experience problems with your voice, I highly recommend you finding a local speech therapy class especially for Parkinson's.

Finding the time to exercise, do physiotherapy, speech therapy and write, not to mention all the other normal routine things I do, there never seem to be quite enough hours in the day. Wouldn't it be wonderful if an extra hour or two could be added, after all 24 hours just isn't enough to get everything done. Insomnia is another symptom of Parkinson's, and as infuriating as this can be, it does provide extra time in the middle of the night when all is quiet, no phone calls or people disturbing my train of thought; uninterrupted I can get a lot of writing done. So maybe there are some pluses to having insomnia after all.

The only way to fight Parkinson's is to do everything you possibly can. Firstly staying positive and cheerful, and maintaining a sense of humour at all times. Eat a healthy well balanced diet. Exercise by yourself, or with others at a Parkinson's support group, and where necessary with a physiotherapist. Do as much as you can without overdoing it. The saying "no pain - no gain" is most definitely NOT applicable when suffering any chronic disease. If something hurts - pay attention and STOP! Stay well informed and up to date with clinical trials and new treatments. Take your Parkinson's medications on time, don't skip pills or self medicate. Keep up the hobbies you enjoy and can still do, replacing those you are no longer able to with a new activity. Keep occupied and busy, surrounding yourself with encouraging optimistic people who uplift your spirits. Above all, don't forget to count your blessings!

In my article last week about " Gaucher Awareness Month" I apologise that the link to the "Steps Ahead of Gaucher" web site was incorrect. Here is the correct link if you would like to take part, or have a look at the inventive ways people have come up with wearing green shoe laces during the month of October as a symbolic gesture, in an effort to raise awareness.

I have been overwhelmed with the response and support for this campaign, and would like to thank all those who made the effort to purchase green shoe laces. I have been inundated with wonderful e-mails from fellow sufferers around the world. Making contact with other patients, bringing us together, uniting our efforts to educate the general public about a rare disease that most have not heard about, has been a most rewarding experience.