I am here, and I matter

If you feel really strongly about something.......

My name is Randy Wilcox and I am a PARKIE.

I was never one who wanted to join the old boys clubs. 
I actually avoided the Board of Trade events, was just as happy to not belong to the Rotary Club, the Y"s Men Club, etc. While I know who some of the members are, and do business with a few, and they do a lot of good work for the community, my personal worth was not based on what club I was part of and who I knew from those clubs. I have always felt like I did not fit in.

I was never one to get politically involved. I pretty much ignored anything political.
However I did, and do, continue to vote.
I found for the most part the decisions that were  made by our Federal and Provincial politicians did not directly affect me. Business wise and personally I have flown pretty much under the radar.
I am a partner at Southern New Brunswick Office Equipment Ltd. (SNB).  We sell and service Toshiba photocopiers and Ericsson Telephone systems. We have been in business for 20 years. I have over 400 telephone systems in place that we look after.

But this is not about business, this is personal.

February 13,  2013  4 pm, my life, and the lives of those I love, changed.
As I mentioned, I got involved because I reached out for help, and no one answered .

In New Brunswick no one knows how many people are living with Parkinson's disease.
If you ask the neurologists. they don' t know.
If you ask Parkinson's Canada, they don't know.
If you ask the Province, they don't care.

The best guess is based on figures. It is estimated that there are a little under 10,000 people living  with Parkinson's in the three Atlantic provinces. Based on a rough guess, there would be approximately 4,000 to 5,000 people with Parkinson's in New Brunswick. Five thousand people, not a lot when you consider the total province. But I may, or will, be be proven wrong.
BECAUSE NO ONE FUCKING  KNOWS ........

But Parkinson's does not only effect the individuals, it effects everyone in the family unit.
The wives, husbands who get to watch the ones they love slowly slip away. Watch their future dreams go with them.  The sons and daughters who now have to put their lives on hold to tend to a parent.
Parkinson's changes lives in ways that no one on the outside can even imagine. Don't get me wrong, there are plenty of awful things out there.  But Parkinson's does not end. EVER.
It does not go away. There is no cure, no relief.  I was diagnosed at 54. I fully expect to live until I am in my 80's. But what life will I have at 80?  Worse, what life will my lover have?

Okay do I have your attention?

In New Brunswick there are no programs to assist those living with Parkinson's. There are no programs to assist the caregiver or the families.  Yes the provincial drug plan does cover most of the medications for those without Blue Cross or similar drug plans, but what we need is a full time office responsible to those dealing with Parkinson's. Someone who can make sure each community in New Brunswick has a support network; that information is readily available to newly diagnosed patients; that there are support groups available; that there are relevant exercise programs available to all; to make sure the caregivers have the necessary support network.

Did you know that Nova Scotia has a provincially funded organization dedicated to Caregivers
offering such things as Support Groups, Help lines, information on temporary relief?  Not just for Parkinson's, but for anyone who needs it.

New Brunswick has nothing.

The Provincial government has been pushing for at-home care for several years now. That is fine, in my later years I would rather be at home. But how about taking some of the money the province has saved, and giving it back to the unpaid caregivers in the form of  support?

Currently Parkinson's is supported by volunteers in the local communities. There is no one group working for New Brunswick's  Parkinson's community There are support groups in Fredericton, Saint John, Sussex, and I think in Moncton and the Miramichi. But the groups in Sussex, and Fredericton are aligned to the Michael J. Fox organization, and Saint John and the Miramichi are with Parkinson's Canada. Let me call it as I see it. Parkinson's Canada and the Fox group, while providing support materials, are primarily interested in fundraising.

Right now there is a wonderful dedicated young lady, a physio therapist, running around the province trying to establish an exercise program for Parkies. All on her own time and with the full knowledge that at any time the province can  stop it.

One of the things I noticed early on while working to fund raise is the sheer might of the Hospital Foundation. They are the fundraising bully on the block. Of all the Billions of dollars they have raised over the years not one penny has been set aside for Parkinson's. A movement disorder clinic in Saint John or Fredericton is desperately needed. This would probably cost less than any of the MRI's or whatever machine they need this year.
 
There is only a PART time Neuronurse assigned for Monday's for Parkinson's. One day a week to screen patients, provide information about support, point the person to the people who can help.  One nurse, one day...

There is a provincial election coming in the fall.

Please help me a least get the word "Parkinson's" mentioned.
Not for fundraising, but to bring awareness to the government.

HEY!!
I am here and I need a little help!

And remember sometimes...


IT'S VERY INCONVENIENT



Please share, send, tell, link as many people as you can.
Like I said, there is no organized Parkinson's group.
Let's get Parkinson's mentioned at the Political table.