Jill’s Story

Jill was diagnosed with Parkinson’s Disease (PD) in May 1997. Here, in her own words she talks us through the 15 years since her diagnosis.

”When I was 51 years old, I developed a pain in my shoulder that wouldn’t go away and found that I seemed to keep tripping up when I was walking. In addition, I noticed that it seemed to take ages for me to write things and I was finding it more and more difficult to express myself as my mouth and brain no longer seemed to be synchronised.

These symptoms not only continued, but started to get worse and I found that in general, life was getting more difficult because I seemed to be getting slower. I eventually went to see my doctor and was referred for an MRI scan, which showed that I had PD.”

“I was put on to medication and found that it improved my walking and my writing. This alleviated my Parkinson’s symptoms for maybe 2-3 years, before the disease began to show itself a bit more and I started to experience wearing off.”

“I started to notice that I was no longer coping in response to these problems so I went along to my Parkinson’s nurse and we talked through the different problems that I was having, that is, the slowness and the increased difficulty in coping with things.”

“We talked through the possibilities and she made suggestions for medication changes. These medication changes for me have generally been an increase in my dosage. As PD is a progressive condition, I now see my PD nurse every six months for a review”

”One of the most important lessons that I have learned during PD and the wearing off periods is that you have to continually adapt to your condition. For example if I have been doing the ironing and I suddenly start to feel tired I now know that if I sit down I may be able to manage a few more things and if this doesn’t work, then I just stop and continue later. By adapting to my condition I have found that I am able to cope with it better.

“Now 15 years on, whilst I know that the disease has progressed I know that it has been a slow progression and I am aware how fortunate I have been compared to other people. I try not to let PD dominate my life as I think that life is for living and if you feel sorry for yourself then you get into a negative frame of mind and this is harmful. I often suffer from a very dry mouth but instead of letting this get me down, I recognise that this is just related to the medication and I know that if I have a drink of water or juice then I shall feel better again. In fact I have found that having PD can make you appreciate every day and I try to maintain a positive attitude at all times so that I don’t let the disease wear me or my family down.”

Helpful information about adjusting to life with Parkinson's

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