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Associated URL: www.selfhope.co.uk

by Dale Preece Kelly

I was diagnosed with Early Onset Parkinsons about eight years ago. It started with a tremor in my hand - my thumb actually. I went to the doctor and had all of the tests. What a nightmare. Why me?, was the question I asked, over and over again. I've now come to terms with it and am okay with it.

One of the first things I told my new girlfriend two years ago, was of my diagnosis. One day when I got home from work, she informed me that she had researched the disease on the Internet. She had looked up the symptoms and the development of the disease. I was very surprised, but delighted - it meant a lot to know that she cared enough to investigate.

After my diagnosis, I joined the local Parkinson's group. It was made up mostly of older people - those who I would associate with the disease. I went to a few meetings, but felt out of place. One thing they did do for me though, was recommend a therapy Conductive Education. which educates you to control your muscle tics by controlled movements. It was useful my mild form of Parkinson's disease to experience - I am not sure how successful it is for those with the more severe form.

My symptoms are quite recognisable. My writing is deteriorating (I have never been neat, but my writing is terrible, unless I take a lot of time and REALLY concentrate). I have problems with balance in so far as I lean a lot (my wife puts this down to wine consumption!). I can be difficult to understand when speaking. I notice people who meet me for the first time constantly ask me to repeat myself. I am anxious and at times depressed. I have difficulty understanding or accepting reason in certain circumstances. I stutter when speaking - forgetting my thread and zooming off at tangents (lots of thingumy's and watchyamacallits!). I have problems sleeping, because I am restless at night (this also keeps my wife awake), when I do sleep I have bad dreams (sometimes night terrors) and often wake screaming. All of these are symptoms of the disease.

My wife suffers these silently! She makes light of my difficulty getting words out and expressing myself. She laughs at my inability to maintain my balance. She puts up with my anxiety, occasional panic attacks and occasional depression - she understands it is due to my illness. I married a diamond. She is only 28, and yet she endures all of my short comings, knowing what the cause is. My wife can tell the difference between my disease and my insecurities, she is very astute. I am a very lucky man - to have met such a lovely person that understands and endures, despite the upset it can cause her.

I am very young at heart, and try to ignore my disease. I tend to "forget" my problem, but my wife will point out at times when a shortcoming is due to my disease. I will apologise, not understanding why I have acted in a certain way, or I will comment on how well she is coping with my personality when I know that it is unacceptable - she will simply smile and tell me not to worry. I remember once pointing out that she had been particularly understanding about something, and she turned to me and without saying directly made me realise that she understood because she understood my disease. Incredible.

I hate to think about how this will affect me in later life, and so make the best of being not too badly affected by it. I live my life to the full as much as possible, and I embrace each day with a can-do attitude. My wife knows that if I am tired, worried or ill then my disease will be more visible (I am more prone to tremors, nightmares, and restlessness at night) and she adjusts herself to cope with it. I find that very humbling. I am getting emotional now just thinking about it - I am so so lucky.

I know it is going to get worse as I get older (not sure by how much or when it will happen), and I worry about the effect it will have on my wife and step children (as they are so much younger than I), I would hate to be a burden on any of them. I know, however, that they love me and that I can rely on them to understand and support me as I do get worse - I know I will have their love no matter what and that keeps me going and keeps me happy.

In closing, I would just like to say that in coping with Parkinson's you need: a good support system (understanding within family members with whom you have regular contact); to try and ignore your illness (difficult I know if you have anything worse than my mild form); to understand the disease and where you are in the development of the disease; to know your symptoms (I sit on my hands when I can feel the tremors coming - when I'm very upset though, I cannot stop them completely); to be able to be unembarassed by it!

If you can manage all of this, then you will deal just fine with everything.

Parkinson's is part of you and you have to embrace it and manage it as best you can, your loved ones (I've found) will adapt to your nuances and treat you no differently. I hate my tremors, they are annoying, they stop me being who I want to be and I want to switch them off, but I cant, I am what I am - my family accepts this and that's why I do so well. Thank you!

Posted by Dale Preece Kelly on June 10, 2010


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