Parkinson's online form


#1

The other day I received an e-mail asking me how I felt when diagnosed with Parkinson's.Also what or how much should I tell my family and friends. After completing the form I sat and thought about what I had put,.I thought it needed more information on the form not just little boxes to tick.

I don't mind telling people that I have Parkinson's. I was diagnosed in 2010, and medication is a wonderful thing. What  I have found when talking to friends/relatives is that what most of them know about Parkinson's is that having Parkinson's makes you shake. So what I do is not try and explained about symptoms but give them a leaflet and ask them to read it, I copied it out of a magazine, as when I was first told that I had Parkinson's I thought just as my friends did, even reading leaflets I still did not under stand then when I read the article everything became clear. The only thing I did that was wrong was look at a dvd with people who had got advanced Parkinson's so if you have just found out you have Parkinson's live each day and enjoy life don't let it get you down. What I don't like is when people call Parkinson's a disease to me it is not a disease as you can not catch it. This is only my opinion.

So to the survey form I think it needs revamping so you get a much better picture then people won't just think you are clumsy.


#2

Hi Mary

Thanks for your comment here. It's really good to know your thoughts on this. I'll pass this post along to our Media team who are running the survey ahead of this year's Parkinson's Awareness Week. In the meantime, if you would like to get in touch with them directly to talk more about your experience with diagnosis, I'm sure they would be glad to hear from you. You can reach them at pr@parkinsons.org.uk.

I hope it helps,

Ezinda


#3

Hi Ezinda


I have sent 2/3 e=mails to Joe who is part of the Media team, who, sent me an e-mail asking when would be the best time to contact me. This was after I received your reply. I have not had anyone come back to me. We have had a new laptop and now on windows 10. for some reason the first e-mail from the media team(Joe) went to my husbands e-mail address. I have replied to this e-mail giving my e-mail address, my home address, Tel number home and mobile, so they could contact me, but I have had no response at all.


Just in case my e-mail address is [email address removed]

yours mary1947  Sue Dawn


#4

Hi Sue,

I'll pass this to Joe and ask him to contact you on the email address you've given. 

In the meantime, I've removed your email address from your message for privacy. 

Thanks again,

Ezinda


#5

Hi Mary1947,

Your point about Parkinson's awareness is well made. The Parkinson's UK team do a great job but despite of that and from my experience the general public are very unaware of the problems PD causes and the range of symptoms it produces. They find it difficult to relate their view of your illness to what they regard as the standard symptoms they have in their mind. I must confess I was of the same opinion until I was diagnosed.

My dx was in 2011 and since then a number of times people have looked at me and said "you're not shaking" as if they are not convinced that I have PD. Another thing that people (all well meaning) can't get their head round is that one day they see that you are like a zombie and can barely walk and are shuffling and freezing, then another day they see you walking reasonably well and a different person. This confuses them, even close friends. The switch off, switch on element of PD is little understood.

I don't want to spend time explaining the nature of the beast we have or explaining the range of symptoms - Akynesia, Dyskenesia, Distonia, inner tremor, shuffling, excess saliva, burning legs and facial muscle pull amongst them. It's not fair on the listener.

Another thing with people (all well meaning) is there range of responses, from " I have a friend who has Parkinson's, he goes mountaineering and cycling, you wouldn't know he's got it" to "I have a friend who has Parkinson's, he was in a wheel chair within three months and is now in a bad way".

This forum is great for conveying the wide range of problems PD sufferer's have. The contributors show a remarkable degree of stoicism in spite of their problems and are an example to us all.

Like you Mary, I don't want to know about advanced PD, at least not until I'm approaching my hundredth birthday. 

As an aside - 1947, I remember it well, the year of the great snowfall, I was 9 years old and loved it.

Regards,


#6

Hi everyone

I believe positive thinking looking on the bright side is the  best way to live your life as normal as possible  It really makes me feel better to read these stories . Thanks guys.