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Banging my head against a brick wall
My Experience of Parkinsons Disease
My Experience of Parkinsons Disease
Date: 02/03/02, updated on 12/06/02 (37 review reads)
This opinion is sans spellcheck, in fact it's straight from the depths of me because my Mam has Parkinson's (PD). If only the disease was as amiable as the talkshow host. But sadly it isn't.
It all started about two years ago. Being a psychology graduate (yes, I am mentioning that again!) I always thought a little knowledge was a dangerous thing and tried to keep what I learnt from textbooks far from the family home. But something wasn't right with my Mam, her handwriting was different, almost spidery and she seemed to have slowed down. So I read and read and urged her to press her GP for tests.
First he diagnosed depression, now this may sound arrogant, but I just knew it wasn't that. So I argued with her to demand more tests. Thankfully she did. Then at the age of 46 she was diagnosed with PD.
Things were quite optimistic at the begining, but looking back I can see that it was because my Mam was shellshocked. I however didn't take it well and found myself in floods of tears almost all the time. Having been born with cerebral palsy, I know how frustrating it can be when your body takes ages to listen to what your brain is saying. It must be doubly scary when you know that it can but get worse.
My Mam was always a very lively woman, but suddenly she had to give up her job. Her one social outlet was gone and she would cry on the phone about how lonely it was. Things went for bad to worse when my parents split up.
At the moment, my Mam is living in a semi detatched house with my 18 year old sister and three Jack Russell dogs. Living a good distance away, I go back only when I can't avoid it. I admit it, I am selfish, just to be in that house makes me climb new heights of stress.
My sister is living in some kind of illusion that if she hoovers every so often and keeps on getting her supply of beer and cigarettes that things will be alright. That may sound harsh, but I genuinely think
that she is too young to have this 24 hours a day, 7 days a week, so she copes by rebelling and generally being bolshy.
My Mam sleeps on the sofa downstairs, only changes her clothes if you offer to help or try to reason with her until you're hoarse.
She won't bathe, because she says she can't manage it. She relies on my sister to wash her hair , so that it is washed bi annually.
She cannot use a can opener and eats tiny portions of food that make Kate Moss look like a fat bloater.
I am not telling you this to get the sympathy vote, but merely to share and to see if I am not the only person in this sad and desparate situation.
My Mam's dogs deficate and urinate around the house. While I was there last week the pulled up the kitchen lino and peed underneath it. I found a pile of washing with weeks worth of excrement on it. It was then I knew I had to take drastic action.
I returned home and accepted that I must do all I can to improve the quality of life for both my Mam and sister. That may sound a little obnoxious of me, but basically things had gotten out of hand and I had to do it because no one else will.
I am hardly Saint Jo of Liverpool, I just set about making a few phone calls.
1. I doublechecked whether my Mam had a social worker. She didn't. I found this out by phoning the local hospital and the regional social work department.
2. I phoned her GP and asked him to visit my Mam at home and assess her situation. (The fact that I had to do this riled me somewhat as I had sent him a letter two months earlier expressing my concerns). I also chased up a physiotherapy assessment that my Mam had failed to follow up.
3. With a heavy heart I called the RSPCA National Helpline on (0870)5555999. I informed the representative of the situation and she informed me that the dogs could not be taken unless my Mam agreed to sign them over. There is more chance of me giving bir
th to Jarvis Cocker's child. But I agreed that a local officer could go round and have a word to my Mam about the conditions in which she was living.
4. I contacted The Parkinson Disease Association Helpline on (0808) 8000303 and asked whether there were any association to help people with PD to keep their pets. She gave me the number of an association that places people's pets in homes while their owner were in hospital Tel: (01280) 894000
These kind people then put me in touch with The Cinnamon Trust, a volunteer scheme that walks pets for those with mobility problems.
A compromise for the time being as my Mam will not give up the dogs without a fight. In fact, if I can find a solution, I hope she can keep them as she loves them so.
The Association also gave me numbers of support groups in her area. I thought this might be particularly useful as some of the people are around her age and it might show her that she isn't the only one who has to go through this, as she has never met anyone with PD before.
Maybe, she won't use all the devices I have helped her gain access to, but at least now she has the option. I think as a daughter, you can get a little bit gun ho about the situation and forget that it is still your Mam's life and the disease is part of her, not you.
I have researched the disease a lot and collected various leaflets for my Mam to look at when she feels ready. I can but be patient and wait for her to get there. But in the meantime, I have set in motion the things she will rely upon in the future. She gave me life, without her I wouldn't be here, it is the least I can do. All I have done is out of love.
The Cinamon Trust only help people over the age of sixty five, so it is worth asking your own vet if he knows of anyone willing to help out.