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On our web site the other day one of our members told me that his hairdresser have to give up work due to having Parkinson's and her tremor. Like every one else the member thought Parkinson's was just a tremor, so seeing as I was diagnosed with Parkinson's (PD for short)  I thought I would just give members some details about it.    Parkinson's an illness not seen. (Somtimes apart from tremor)

 

After a good afternoon of playing bowls, I sat with master having a glass of wine in the sunshine. 

I had a slight tremor in my right leg also in my right arm, joking i said to master maybe it's too much wine that I have drunk.

Went to see GP he said he would refer me to QMC as he was not sure what my problem was., he would not say any more.

My appointment came through to go and see a Dr Sawle on 8th April 2010.

This is how i was diagnosed!!!!!

Dr Sawle  "Walk up to the door !! Walk back again!!"   

Sit down please right "I will tell you now what you have got you will not die with it"  "You have Parkinson's" which is a slow progressive illness. 

"How do I know "   "Well when you walked to the door your right arm did not swing it stayed still" 

Dismiss !!!      make an appointment to see a PD Nurse

With that both master and myself came out of the room in a daze. 

There was a stall out side with a lady passing out information lealets on PD. Don.t know her name, she had PD for 13 years, well she did not look to bad, her advice was great she explained lots of questions rhat i needed to know, when i was looking though the leaflets i came across a DVD  straight away the lady said you don;t want to look at that, take this leaflet instead. Left QMC after booking in to see a PD nurse  On getting home could not wait to look at the DVD. She was right I should not have looked at the dvd as it was people with advanced Parkinson's. The next thing I found out, was, that went I wanted to turn over in bed, I could not remember how too.

 

To be continued -------------- 

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My mum was diagnosed in precisely the same way, Mary! I think it is ridiculous.

 

Parkinson's cannot be detected via a brain scan.  I read recently that as many as 50% of those diagnosed with this condition don't actually have it.

 

Mum was started on the Levadopa drugs: Madopar to begin with, which had horrendous side effects,  fits, convulsions, etc but no discernible benefits; then Sinemet which, likewise, had no effect. Eventually, I asked that she be allowed to try Amantadine which isn't one of the Levadopa drugs. It's an anti viral which has been found to have beneficial effects for some Parkinson's patients. Again, no effect at all.

 

The consultant was worse than useless but there was a very clued up specialist Parkinson's nurse who said to me quite early on that she didn't think mum had Parkinson's. She felt it was either PSP or Progressive Supernuclear Palsy or MSA or Multiple System Atrophy. Both are caused by the destruction of the substantia nigra of the brain. There is no cure and no treatment as the standard Parkinson's drugs have no effect. We already knew that.

 

She was right. It was MSA.  This condition and PSP can be detected via a brain scan but since there is no treatment, this is rarely done.

 

Basically, MSA is a gradual shutdown of the body's organs and functions and a very unpleasant illness.

 

In this day and age, it's astounding that there isn't a more high tech way of diagnosing, although there is a protein test in the pipeline, developed from the ability of a retired nurse to smell those who already had or were going to develop Parkinson's.

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Sorry to hear that Mary, we have a friend that has Parkinson's. We phoned him the other day and he said he was ok but his daughter said he wasn't able to work out a mobile phone. We wanted to do a video call with him. He's had it for quite a few years. He lives in Arbroath and had a restaurant there. He used to play the guitar and sing but I don't know if he still does because he sold his restaurant a few years ago.

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  • Cliff Ton changed the title to Parkinson's

My mother had Parkinson's. I learned a lot about it by watching the way she changed over a number of years.

 

The strange thing is that whilst you - the observer - are seeing her change, it's increasingly difficult to know or see if she realises she is changing.

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You don't get years with MSA or PSP and no one who has it would want years!  My mum deteriorated in a matter of months to the stage where nothing worked. She was still pretty sharp, mentally. She knew what was happening and hated it. She just wanted to be gone and in the end, after a fall, pneumonia carried her off. A blessing. Wouldn't wish it on anyone.

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Jill sorry to hear about your mum. My mum had dementia  and it was hard to get any help, like your mum she knew something was not right . The master and myself looked after her for 8 years and then it got to the state that we could do no more.

nonnaB , i just stated this Topic so people can get to know more about the condition. I thank any member who would like to add anything to this topic. 

Hi Cliff your right living with  or knowing some one close you don't always see changers.

 

Topic. Parkinson's a Better Understanding.

Parkinson's is a slowly progressive disorder of movment. It is caused by damage to the substantial nigra, the area of the brain thats responible for smoothing out muscle movment; as cells die the levels of dopamine (a chemical messenger ) fall, muscle control and co-odination gradually deteriorates.

EXAMPLE    We all know Billy Connally  but have you noticed in the last TV programs that he did not smile had he found it had to put his hands to-gether.

 

To Be Cont-----

 

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I can sympathise with you. We looked after my mother who had dementia for ten years. It was a difficult time. We had to put her in a home eventually as she was getting just too much for us to manage. She only lasted a couple of weeks after that. It was ten of the most difficult years of our life. I wouldn't wish it on anybody.

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Watched a Brit drama last night, Elizabeth is Missing, Glenda Jackson played a lady with dementia. It really bought home to us, how difficult it is to deal with or live with, a person like that. She played the part very well.

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The bride in this photo passed away in her sleep yesterday, aged 91.  She’d been in a local care home for around 10 years suffering from dementia.  She was my aunt and I’m the little bridesmaid, I was 5 years old!  I haven’t seen her all the time she was in the home as she didn’t recognise her 4 children so she wouldn’t have known me.  Very sad and frankly rather frightening.  
B7-EB7801-0-AA2-4-F7-E-8977-B7948-A8-C96

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Sorry about your. Auntie, Lizzie.  She was very beautiful and you were a cute little bridesmaid

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And from me Lizzie   x

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My mum was in a home of the last few years of her life she was 99 when she passed away wirh Dementia. The thing is by the time the illness has got hold nothing works any more, My real mum passed away long before. This  person in the home was a stanger to me she was in the home for about 3 years  When we went to see her she would aways give you a big smile. Even if she did not know who you were. One day I took the photo album to show her, all of a sudden she said that's my dad what time is he comming home from work? So there was still a little bit of mum in there.

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That's the thing about dementia. You cannot tell how much recognition is still there and sometimes, I think, quite a lot is but the person cannot physically express it. It's a nightmare condition for anyone to deal with.

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Similar to how I felt with my mum and Parkinson's.

 

In the last couple of years it was like talking to an intelligent 4year old. I couldn't decide if she was happy in her naive innocence, or if she was frustrated at not being able to do what she used to do.

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Parkinson's a better understanding.

Most of us with PD manage it well wilth help from our PD nurse. When you have being dianosed with PD you are allocated a Nurse  who specialise in  PD. Depending what PD you have (as there are quite a lot ) see with see you in 1month 6 months or when she feels that you need her. My nurse is Jenny and she is more lik a friend and has a way of explaining every thing that is going on with your PD. in simple terms. 

 

Symptons

People with Parkinson's notice that their movements become slowe, muscles feel stiffer and less flexible and/or they may develop shaking (tremor)that improves with movment. Everthing is hard work getting out of a chair, walking,turning-dressing (particulary buttons or laces) and actions such as writing and using cutlery.  They may start to shuffle, stop swinging their arms, develop balance problems, or fall.speech and facial expressions may become flatter (remember Billy Connolly) chewing and swallowing (could choke on food) more difficult. Many of these symptoms are embarrassing if they occur in public because they can be mistaken for other, less socially. Such as being drunk, (a friend of mine was actually arrested by police because they thought he was drunk) which why it's important for us all to know more about Parkinson's. It makes life much easier for people with Parkinson's.

To be cont-----------

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It Was a member on the forum suggested that i put it on as a topic, because not much is known about the condition. Sorry if I have affeneded you OZ but its life so to speak.  

So I will not write any more about the condititon just one last word though  More men get PD than women. 

 

Subject closed 

SMD1947

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It was my Hairdresser who has Parkinson's.

 

I see no need to close the subject Mary.  If people want to discuss it.. then they can.  I'm certainly interested as I've recently found I have another couple of friends diagnosed with it.

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10 hours ago, mary1947 said:

Sorry if I have affeneded you OZ but its life so to speak.  

You did not offend me at all Mary I just thought that putting a like against someone writing about and suffering from PD was somehow not the right response.

I sometimes wish the were other options.

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OZ you say suffering from PD not sure what you mean, as most of us that have PD take each day as it comes. I do not wish it on others the hardest thing is when you get pains, can't move and you speak to your GP asking is it PD? all they most times say is well it could be.

What most of us do is keep moving any way any how but keep moving,  seeing as you have sent back a post I will contiue with just a little more about PD. 

OZ  I started this post just so people might see that PD is not just a tremor, but more.  I play indoor bowls with a gent who has PD really bad, it takes him about 1 hour in the morning to get dressed but he is always cheerfull when you meet him. His PD was so bad they offerd hin DBS (deep brain stimulation) and it worked allthough they said it might not be permanent. Another one of my friends who doe's Tai Chi same day as myself has also been offered DBS but then this virus came along and they will only do DBS up till you are 70, and Peter my friend was 70 Jan 2021. 

 

 

 

 

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