THE BLOG
28/02/2018 14:00 GMT | Updated 28/02/2018 14:01 GMT

It's Only A Tremor - Living With Parkinson's

Being diagnosed with a disease such as Parkinson’s makes you question everything

Being diagnosed with a disease such as Parkinson’s makes you question everything. For some those questions disappear into the background within a few months, though for others they constantly fill their days. In truth how could it be otherwise; always making its presence known when you don’t want it to. At times lulling you into a false sense of security immediately upon which you actually believe that it isn’t really true.

“Lesley, we will probably be here having the very same conversation in five years time,” said the PD nurse as she explaining that Parkinson’s is a slow developing disease. How does a slow disease progress? I asked myself. How long will it take before it impacts my life to such a degree that I have to change things? 10, 20, 30 years? Part of me felt it was a waste of time asking (what I considered to be) irrelevant questions. After all if that’s the case I will be in my 60′s before it progresses further – as though one minute in seven years, like a bolt of lightening, it will suddenly get worse!

Technology is an advantageous way to acquire information – but assessing what applies to yourself is not easy. Day-after-day your head is filled with a myriad of details about this condition. Not only are there physical symptoms, others are of the ‘non-motor’ kind; anxiety, depression, memory problems, sleeplessness. Then the more you look the more confusing it is. They can be part of the disease or side effects of medication. Once the obsession that initially takes hold is put to one side, the reality is that it’s still only a tremor. Like fellow sufferers, there is also the pain and bradykinesia (slowness of movement in affected parts) but my life is not severely affected. I’m not going to die! I will just gradually develop more disabling effects of the disease. There is no handbook that says ‘you will get this and then in so many years this will happen.’ For every person Parkinson’s develops at a different rate and affects varied areas of their body.

If that isn’t enough, our minds have an abundance of creative potential and now it begins to see PD in past symptoms. Scanning the internet feeds this process until it almost becomes a paranoia. This only feeds the feelings of anxiety that are part of the disease. Once diagnosed with such an insidious disease, modern technology can bolster the need to believe that all those undiagnosed peculiarities you had been experiencing are part of Parkinson’s. The list becomes longer and longer. In truth many of us suffer with other medical conditions as well, which exacerbate or run along side. Talking with a specialist nurse or the neurologist can be a far more effective way of finding out what is part of this condition – striving together to piece all the Parkinson’s jigsaw of symptoms. Some areas of the country have more specialised nurses than others. They are trained in a specialist field such as Parkinson’s and are a vital link between us ‘Parki’s’ and the neurologist.

Attending the ‘Newly Diagnosed Clinic’ run by a PD nurse, did answer most of the queries lurking in my mind; dismissing others as though they had never existed. Like myself there was little, if any, indication that other sufferers sitting around the table had Parkinson’s. It doesn’t stand out like a label telling everyone. Most astounding is how many people are diagnosed with Parkinson’s every month. Three of us out of a total of eight had our diagnosis in the same month. According to the official statistics, every hour two people in the UK are told they have Parkinson’s, so that makes roughly 1440 people in one year.

That’s why most of us know someone with this disease. Some speak out about having it, helping to raise its profile while others find feel the need to keep the diagnosis to themselves. Personally, as you have certainly guessed by now, my way of coping is to talk about it, as well as researching as much as possible. I wouldn’t say I have come to terms with the fact yet, but I am getting there.