Knowing how important physical exercise is to keep Parkinson's at bay, I have taken to swimming on a regular basis, in the hope this will help retain my mobility for as long as possible. The other morning as I entered the Sports Center, I was practically accosted by a woman who appeared out of nowhere.
Making a good first impression and leaving your mark is important, but sometimes circumstances dictate an outcome different from what you had hoped for. A particular incident that happened to me a number of years ago comes to mind. I don't think I left the desired impression, but I'll let you be the judge of that...
The body takes a beating from constant symptoms, yet most patients I've come across, gallantly fight Parkinson's in silence each day, so it's no wonder our emotions are also affected. We feel bound by a code of honour to put on a brave face, smile when we can, and continue to sound positive to all those around us as this degenerative disease runs its course.
A few weeks ago, a member of my family was taken into hospital for an operation. Although thankfully not life threatening surgery, I desperately wanted to jump in the car there and then, and drive straight to the hospital. Frustratingly in my physical condition this was unrealistic. I couldn't go anywhere, and a few words of comfort over the phone was all I could offer.
Having Parkinson's and making a dinner party, requires military style organisation as many things have to be thought of. I try to choose a menu where most of the dishes can be prepared in advance, sticking to simple delicious fail-proof recipes I've made before which require little work and few ingredients.
We have our work cut out for us working together with a professional trainer, and the next few months are not going to be easy, but in the long term we will end up with a well-trained companion/assistance dog who will hopefully enrich our lives, give me better quality of life and help me get through each day.
As tough as it is for a patient to receive and come to terms with a new diagnosis, it is equally traumatic on the spouse/partner, who without any prior warning or consultation, is unceremoniously thrown into the role of caregiver. Many pick up this mantle without hesitation, out of loyalty, devotion and love, take on this arduous task.
The majority of people with Parkinson's would prefer to die at home but research suggests they are more likely to die in hospital. That's why at Parkinson's UK we are calling for more work to be done to help people communicate their wishes about their death in the early stages of the condition.