How do you explain something that is almost impossible to understand yourself? When people see a smart woman who is always cheerful, how can they possibly know what is going on inside? Because I act out a part then collapse in a heap when they go. I know it could be worse but Parkinson’s is damned hard work just to keep going. It’s a condition that takes away life as you know it. Nothing will ever be the same.
How can you expect anyone who doesn’t have Parkinson’s to grasp the idea that your teeth feel like rubber, so all food feels the same texture and tastes very strange? That you become anxious for no apparent reason. That you can be OK one minute and then literally a few minutes later you can feel light-headed, experience a hot flush or be unable to carry out a simple task. It feels like you are looking in on someone else.
Your writing changes. Your voice changes due to the brain not telling the mouth what to do – and you dribble as you cannot swallow quickly enough because you are not being told to.
Parkinson’s is cruel, painful and difficult to live with. You don't get remission or time off for good behaviour. You have to wait each morning to see how you will be.
Sleep is limited. Some nights are ok, but sometimes I just cannot get comfortable. When I do manage to drift off, it’s like a surreal ‘floating’ episode when I wake up in the night to go the bathroom. I really need my tablets, but I cannot afford to sort that out first as with 2 crutches, it takes time to get to the bathroom. I lose confidence, afraid I will fall, which I have in the past.
My memory and recollection of words is not so good. I used to have an excellent memory, now I forget things. But there are those times when I am told I have forgotten something when I know darn well I haven't!
At the moment, the only physical Parkinson’s symptom I have is a small tremor in my left hand. With medication, this can be hidden and so far, my friends have not witnessed it. But if I take my medication a bit late because we’ve got visitors and I’ve lost track of time, the tremor starts and will last half an hour until the tablet takes hold.
I’m sure Parkinson's will affect me more physically as it progresses, but at the moment, my arthritis has beaten it, to the point where I am practically immobile. This has increased my anxiety tenfold. I feel trapped, sometimes in pain so badly I need to lie down. Then I am stiff when I get up so need to try and hobble about on the crutches to loosen up.
Parkinson’s is cruel, painful and difficult to live with. You don't get remission or time off for good behaviour. You have to wait each morning to see how you will be. This makes it very difficult to plan anything, so at the moment, it’s easier not to. I cannot be a wife to my husband in many ways – he is now my carer. Independence goes out of the window.
But thank god for his love, for my son and his partner and my many wonderful friends, who never tire of visiting. As Abba once sang, "Without you, what would I be?"
Parkinson’s affects everyone differently. Our helpline and local advisers can support anyone with Parkinson’s, their family or friends. Call 0808 800 0303 to get in touch.