Touching concern from Parkinson Alberta Society (PAS), Calgary
 

We had a visit to our home by two wonderful ladies from PAS, Harle and Tania.

I had seen the website of PAS (http://www.parkinsons-society.org/) for some time and got an idea about the services it provides for the Calgarians wpd’s. Being a home bound animal and an introvert, I thought that PAS is not for me because of the fact that most of PAS work like the support groups, lectures and advocacy events all require the PDer to go out and meet people. It is a fact that since I got my PD diagnosed, my social life shrank dramatically and even my wife who is a chronically happy and sociable person could not drag me into the world.

About two weeks back I was looking for an affordable option for speech therapy and it occurred to me to contact PAS. Harle was on the telephone and she suggested that they come to visit us. I was pleasantly surprised.

Soon enough the two ladies were welcomed at our home and it proved the point that the telephone and the internet are poor substitutes to face to face human contact. The ladies were very eloquent in explaining the benefits of participating in the support groups, lectures and many other events and what was strange to me throughout the visit that I was actually talking and being understood. Harle indicated that my speech was good and perhaps what would be more useful to me and my wife is to join a PD support group. I readily agreed and so we will.

Goosebumps!
 

Imad, I get goosebumps when I hear touching stories such as this one. Some people "run" from support groups -- not sure why, but it happens.

I have been involved in the leadership of our local support group for many years (115?) and would not trade the friends I have made there for anything. It just helps to talk to someone else who is living this same "hell" as you are.

You know the World Parkinson Congress will be held in Montreal inn the fall, 2013. Wouldn't it be great to meet up face-to-face with many of the posters here?
:)
Peg

glad that happened
 

There is an instant relief and euphoria when you talk with people just like you. Does this mean the animal is coming out of his cave?:)

the middle way
 

Peg: Meeting internet friends may be great but could also be disappointing ! but I see you are ready to take this risk :)
Paula: Now I am trying the middle way. We all need each other and there is no paradise without the others (as said by an Arabic proverb) but ideally we should be happy and content while being alone!

Meeting other people with PD has been for me an amazing thing. Initially, because I fell neither into the late onset support group bracket (these were really old people) or the young onset, 30's and early 40's, I found all the support that I thought I needed online, especially here. But also at the edge of the forest, and places like PWLP, PWP, and Braintalk. I really resisted meeting people with PD, and now I cannot really remember why! Maybe it was because some of the voices I found online were so compelling, and I didn't want to be disappointed by their real life presence. Or perhaps that they might be disappointed by me...

In the event, a few years ago I took the plunge, first here in the UK, and then in Glasgow at the WPC. I have met some incredible people. We are so diverse, so different, and yet share things that are so similar....... It was good to be recognized without having to go through that PD filter that sometimes creates a puzzlement or a barrier with people who have no knowledge of PD, and it was certainly great not to have to explain my idiosyncracies! The best thing of all for me was the feeling of being understood, this is something that doctors and hospitals and even family and friends can sometimes diminish, because it is hard to 'get' what PD is about if you do not have it.

I would recommend it to anyone, if it works for you you will have gained a lot, and if it doesn't then it is like any other social situation, you can choose to leave it if you want.

PS I haven't met Peggy, and dearly want to, and have met Paula and am so glad that I did!

My first encounter at the PAS support group
 

Well, I was out from the cave (borrowing Paula’s metaphor), following Lindy and Peg valued advises and thanks to my wife who constantly encouraged (or should I say: pushed) me to do it.
PAS (Parkinson Alberta Society, Calgary) organize several support meetings every month grouped according to the severity of symptoms and the location in town.
The meeting we attended was allocated to mild and intermediate symptoms Pders held in a church hall about 15 mins drive from my home.
The meeting was held round a big rectangular table and the Pders were there and continued to arrive, few alone but the majority were accompanied by their spouses.
I must say that I felt instantly comfortable and at ease. I don’t know the exact reason for this feeling. One thing which stuck to my mind was that Pders present were not bothered with PD and acted with assurance and confidence and this surprised and pleased me. The other thing which I noticed was the quiet, unspoken but visible intimacy between the Pders and their spouses. I know that I may be imagining things but one thing I am sure of was that Pders had the Parkinson’s personality which I know so well.
The high light of the meeting was the presence of one Pder who told us his experience with DBS which was inserted in his brain since 2005. The man was articulate and very pleasant and kept answering the flow of questions which fell on him. He said that DBS lifted him from the wheel chair to an almost an ordinary life. Personally, I was excited to meet in person somebody who undertook this frightful operation.
The meeting was managed skilfully by Harle who knows so much about PD.
Thank you PAS.

Even way out here in the East, I have heard a lot of good things about the Parkinson Alberta Society in Calgary. Active, and very aware of the details of what we suffer. University of Calgary is a hotspot too; linked with some Brain Institute - . U.Calgary is also connected to PD research in China.
Dr. Bin Hu of the University of Calgary and the Military hospital in Shanghai did some of the early research into music & dance & PD, and toured China setting up PD clinics. He lives in Calgary.

Lots of PD things happening in Calgary.

imark3000, I am saying this in all seriousness. Go out there and be one of their leaders! You have the knowledge, the communication skills, and most of all, the humanity, and they are one of the more advanced and sensitive PD organisations

a must read
 

Thank you Bob for your post and I am very curious to know about Dr. Bin Hu work which I will try to find.

And by the way, I just finished reading chapter 7 on your blog. I think it is a very enjoyable and practical guide to any body with or without PD on how life should be lived and not be wasted.
cheers
Imad