Explaining Parkinson's


#1
Hello

In the next issue of The Parkinson we will be looking at the difficulties people face when explaining to others that they have Parkinson's.

We would love to hear your tips of how you approach it - do you tell people straight out you have Parkinson's? Or do you find it too complicated to explain?

Some people have told us they've been mistaken for being 'drunk'. Have you had this experience, or have people made assumptions because your symptoms are 'invisible'?

Please send your tips and experiences to publications@parkinsons.org.uk and we will include as many as we can.

Jo Chapman
Resources Editor

#2
I am 65 and was diagnosed as suffering from Parkinson's when I was 59 and a half. I retired from work soon after I was 60. At that time my symptoms were not too bad, mostly trouble with handwriting, but soon afterwards my up to then intermittent back pain became far worse and really disabling. Eventually my neurologist recognised my problem as being associated with PD and changed my medication to include Sinemet, which improved matters almost miraculously, at least for some years.
I have an unusual collection of symptoms, the most obvious of which is difficulty in standing upright. I lean forwards and towards the left. When my medication is at its optimum I can stand nearly upright and walk quite well, without a stick. This must puzzle people, as at other times I am leaning heavily on my stick and obviously having trouble standing up or walking.
Some people think I have arthritis and start commiserating with me about back pain. I do have some back pain, but it is the result rather than the cause of my difficulty.
I do explain that I have Parkinson's but not the more common, shaking kind. A surprising number of people know or have known people with Parkinson's, but it was mostly elderly relatives in nursing homes. I often explain that I can cope pretty well, provided I take my medication regularly. For some reason people think I have a problem with climbing stairs, whereas walking on the flat for any distance is my main problem.
I have not encountered any unpleasantness from strangers, which some people on the forum have reported. My friends and other people in my choir are all very helpful and I have good neighbours. I hope to be able to stay in my own home for many years yet.

#3
Hi Jo.
I told people straightaway. Most of my colleagues, close friends and family knew I was going for tests anyway, and with few exceptions they have been amazingly supportive. Thank goodness we are not living in America where we'd have to worry about the effect on our Health Insurance.

If you are interested, I put a bit on my blog recently about my experiences of telling people. http://thejellychronicles.net/2012/10/31/reasons-to-be-cheerful/#more-16

Regards

#4
very nice site jellywoman. especially like the picture. good layout and enjoyable writing style.

#5
Im 43 and had pd 12 years. When i was dx i cryedvand sobbed all the way home.i did notbno wot pd was till the neuro said im afraid you have parkinsons you are very young to have it.you have lot stiffness and tremors and there is no cure yet.here is some leaflets read them and i see you in 3 months time.i remeber me and me hubby just looked at one another and just stood there in daize.like i said i sobbed going home.hubby was very quite.we read the leaflets that nite and then sat me daughter downwho was 11 at the time andvtryed to explain.she was brilliant she new i was a mess and she got computer on and got up about pd. She was strong and hubby.i fell to pices.we decided to tell family and friends.of course a lot of questions was asked.when i was out astime went on was misunderstood to be a drug addict, shaking all the time.people talking sbout me behind my back.which hurt me so much.i looked drunk in a pub when getting out me chair to go to the loo.awful times my first part of dx.as time went on i began to relise i needed to work with the disease so i begun to fund raise for pd.and when people laughed or asked things i held me head high and explained its not catching, i shake and stumbled, but im happy. To this day mevand me family have raised thousands.and i belive now thatbeveryone who walks my path will hold there heads up high and help us rather than take the micky out of us.:smile:

#6
Thanks for sharing that story, ali. I know what you mean about how helpful it is to try and do something positive. Best wishes.

And thanks, turnip.

#7
By the way, the picture was a nightmare to take! The jellies kept falling apart just when we needed them to say cheese.

#8
enjoying the chronicles new fan

#9
Hi everyone

Thanks for your responses to my post. Would you be happy for me to use your experiences as quotes? If so, please email me at jchapman@parkinsons.org.uk

And thanks for posting a link to your blog, jellywoman. I read it and really enjoyed it!

Finally, I noticed some of you mentioned about the positive things you do that help to explain Parkinson's. I would love to hear more from you all about what you do and what you would encourage others to try. Please keep posting or email me at the above address.

Thanks

Jo Chapman
Resources Editor

#10
1999 What a year, PD infiltrated as if by magic into the most essential part of
my physiology and slowly began to destroy,oh I had symptoms long befor 99 my
workmates poked fun at my stooped posture and shuffling gait , my ability to concentrate began to fail, not good when operating Excavators of 30 tons plus so
as I had to inform DVLA they removed my licences and thus my job.
The drugs I was prescribed turned me into a 49 yr old teenager, Hypersexuality was a understatement, then there was the on off on off events each as bad as the other one shutting me down the other producing euphoria and the need to do as much as I could as quickly as possible, a drug change stopped the Hyper but created the opposite effect but it was the lessor of the two evils so I accepted it,It was when admitted to Hospital with a serious water infection that I faced the most worrying time as neither Doctors or nurses on the ward knew of the damage PD was inflicting on me, and now in 2013 I will be able to teach them the horrors I suffer , I will go to my Hospital and PD allowing educate these so important fact to the staff.
fedex

#11
I tell most people that I see regularly, I don't want thye neighbours thinking I am coming home rolling drunk! I've lived here for almost a year now, and I'm aware that the group of people living closest do keep a discreet watchful eye on me. There was a short power cut recently and one neighbour came over, an offer of shopping since the snow came and so on.

I have difficulties when I am out and have gone too far and got overtired. Starting to angrily tell someone you are not drunk when you are shaking and slurring your words............Complete strangers are very wary of offering help

#12
:sunglasses:
Well I did my talk to the student Docs and Nurses, they seemed to be intensely
interested. I did two 1HR chats, with about 15 persons in each, the second group
were lucky enough to see me shut down, in 5mins I went from 98% mobile to14% I
felt ill of course but these Brilliant Enthusiastic young Women and Men witnessed
it happening, and I had taken my drugs on time BLACKHEART pays no heed and turns
me into a virtual cabbage in just a few minutes, It will be interesting to see
the effects of the DUODOPA operation, I hope I pass the pre op tests or I wont
achieve my goal of knocking BLACKY on his arse "can I say that" this is fedex
signing off at 2.10 AM I wish you all a very blissfull nights sleep,night night
Kindest Regards fedex:sunglasses: