Susan’s Story

Susan was diagnosed with Parkinson’s disease (PD) 16 years ago. In her own words she tells us her story:

”I was 30 years old when I was first diagnosed with PD. A friend of mine first noticed that something was wrong whilst we were out shopping and she noticed that I had a tremor. The tremor continued and I eventually went to the Doctor to ask what the problem was. I was initially told that I was too young to have Parkinson’s disease and that there was nothing to worry about. As I had been under a lot of stress at the time, I thought nothing more about it, but the tremor continued. So, I went to an acupuncturist, who after trying a number of things all to no avail, suggested that I may have Parkinson’s disease. So, I returned to the doctor, who confirmed that I had Parkinson’s disease. I found the initial diagnosis very difficult to cope with.”

”It took me about eight years to accept my diagnosis and it was a very difficult time. My work colleagues were not even aware that I had the condition until five years after I was diagnosed. I realise now that talking was key to acceptance. By talking to your friends and your family and to your PD nurse, you learn to face your fears. I suffered by not talking about my fears for five years and was constantly worrying about how long it would be before I could no longer walk – and now here, I am 15 years down the line and still mobile.”

“I think that it is important to get as much information about the condition as possible and to self educate. PD is slow to progress and I think that it is wise to use that time to learn as much as possible about the disease and make the effort to meet people of your own age who are suffering from the same condition, so that you can talk to them and see how they cope with the disease.

I also feel that it is important for friends and family to find out as much as possible about the disease so that they can understand what is happening to you.

I am lucky that my family has coped very well with my PD and this was mainly through them learning as much as they could about the disease. In fact they have been a pillar of support to me. My husband always comes with me to my appointments to see the PD specialist, while my mum comes along with me to meet people of my own age who also suffer from PD, and my dad raises money for my local PD branch by telling family stories to local groups and organisations. They are all members of the local PD group and get involved so that they can learn as much about the disease as possible.

However, I feel that a lot of people are not aware of PD and how it affects people and this can make things difficult for the sufferer.”

“My advice to family and friends of a PD sufferer is to learn as much as possible about the disease. Listen to the person who has PD and learn alongside them about their condition. Be patient with their treatment. Support them and encourage them to socialise. Above all, don’t do everything for the sufferer or treat them any differently and don’t give them sympathy!

Obviously one of the main problems with PD is that it is a progressive disease and this can be difficult to cope with. Two years after my diagnosis I started getting dyskinesias, that is extra movements, which I found horrific. I found that my arms were flapping around like a windmill and I found this all very embarrassing. I was quite a social person but this progression made me feel nervous in front of people. To try and stop it, I would either sit on my hand or put it behind my back to make the condition less obvious. Eventually I started to go out less and less and my social life started to suffer. “

“I was also experiencing wearing off of my medication. I found that I would become stiff and was less able to move. This was extremely frustrating as my mind was able but my body wouldn’t move and I became very impatient. I have since learned to deal with this issue by sitting and entertaining my mind with crosswords, while I wait for the medication to start working. In essence it is all about being patient and understanding your medication.”

“In addition to the motor symptoms, I also suffered some non-motor symptoms during wearing off.”

”As a result of my wearing off I changed medication.”

“All in all it took me about three months for the change in medication to work. During that time I didn’t have a good mental attitude and I learnt that the most important thing was to relax and believe that you are going to get through it…. and you will, I am living proof of this!

Since I was first diagnosed with PD I have come a long way – both physically and mentally. While I am physically worse than I was at the beginning of my diagnosis, mentally I am a lot stronger. The early years were difficult but as I educated myself and learnt more about the condition I have now learnt how to cope and deal with having PD.”

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