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.
Sunday, 24 June 2018
Thursday, 14 June 2018
Being Positive
"How do you do it."
I get that question from time to time.
They (could be any one) are talking about staying positive.
What got me thinking of this was a post in Facebook.
The person was venting. What all of us Parkies, at one point or another are want to do.
The rant usually starts with how tired we are. Why was I chosen to have this?
It never seems to end, what has it done to our relationships?
Where did the person I once was go? Who is this stranger in my broken body?
You get the picture.
What do you say back to this person?
"Chin up , yes... you have an incurable, degenerative disease. But things will get better."
Yeah right...
So how do you do it?
I think it is a personal thing. No one can give you the magic positivity pill.
It is so easy to just give up.
For the ladies, I imagine it's a, big heavy blanket, 3 tubs of chocolate chip cookie dough ice cream,
and a dozen romantic movies.
For the guys, it's a pile Bourne videos, a pizza, and 2 bottles of whiskey.
Either one of those sounds good, but I hate whiskey.
And we have all thought of escaping, or hiding at one point. But that won't work .
You still have to take the meds. No matter how hard you try, it follows you.
And the kids always find you.
So....
Ready or not, here are some things I (only my opinion) think will help to keep you positive.
First...
It's like any thing else, you just have to do it.
Be as positive as you can. Smile even when it hurts.
Like any other chore. You may not want to do it.
But you just have to do it.
It's not easy. You really have to work at it.
Even when it seems so fake, so insincere.
There is a term in sports " Fake it until you make it". If you say it enough, you might even start to believe it.
As much as people want to empathize with you when they ask "How are you doing ?",
most times it is because they don't know what to say. They definitely do not want to hear all the things that you, as a Parkie, are going through.
A simple "I am fine" will do. I have found nothing brings you down faster then listing everything that is going on.
It sounds too simple, and no you will not turn in to a positive person instantly. It won't make the symptoms go away.
But if you do it enough you actually start to feel it.
So that's it.
NOT!!
Being a positive person is more than just saying to yourself.... I am positive.
Your life has changed. Things I once took for granted I now struggle with.
But if anything, I now appreciate things a lot more.
You have to live in the moment. Not just live in the moment, but be in the moment.
Stop some time while the moment is happening to look around, take stock.
No mater what you are doing. Even the most simplest of events.
Or the biggest events.
Regardless of how I feel, even when I am in the middle of a sadness, I stop and look around at the moment.
Watching a humming bird outside the window. Looking at the dawn as I am coming home from the gym. Watching Cheryl sleep. Sounds creepy, but I fall in love with her every time I do.
Listening to a group of friends talk about the last round of golf.
Be in that moment. It will never come again. And that is something Parkinson's, or anything else, can not take from you.
It is easy to say "make every thing a moment". It does not work that way. Life does not work that way. There will be bad moments. Be there as well.
SAY YES
Say yes, as many times as you can.
If someone asks for assistance, you are asked to attend a function. Say yes.
Don't be afraid to go out of your comfort zone. What have you got to lose?
Ballet is not my thing, but I was asked and I went (it was awful). I don't get modern dance.
This will most likely end up coming back to haunt me.
But say yes. You might actually enjoy it.
Try new things. Just because you have not tried something is not a reason not to do it.
Yes you may suck at it, you will most likely embarrass yourself. But so what.
Every one needs a good laugh once in a while.
Deal with the bad things.
Don't ignore them. They won't go away if you turn your back to them. Everyone has had bad things happen to them. Death of a loved one, marriage break-up, Parkinson's. The list is long.
Some things take longer to work their way through. And some things never go away. But acknowledge the bad. Deal with it. Find out what you have to do to (in the case of Parkinson's) slow the bastard down.
Know what you have to do. Learn everything you can. Ask a lot of questions.
Cry once in a while. Cry with someone. Cry for someone.
Before I get too preachy,
To late...
Take a long look at yourself.
Take stock, be honest. Again, Parkinson's changes you, and continues to change you.
I know we all change over time. Look at the good and the bad.
Not just physical, but mentally as well.
I know I have changed my outlook. Things I would never have considered before, I would do now.
My attitude to a lot of things has changed. For example, one of my new motto's is "it's only money".
Don't get me wrong, the bills still have to be paid. But if I have the chance to do something unique, like taking my wife to a dream dinner at Chef Michael Smith's restaurant on PEI, it's a no-brainer.
There is not much I would not try. Except maybe bungee jumping. Me and heights don't get along, but I would do zip lines.
Take a look at your inhibitions. Are they something, that if the right situation came along, would they hold you back? It's okay if they will. That is what makes you, You.
"Be the person you are today, not the person you were" Perkie Parkie.
Accept the person you are today.
Like I have said all along, I am extremely lucky. Yes I have Parkinson's.
But ...
I can still do my job.
I can still put on my underwear myself'.
I still do the things I want to do.
It's fine for me to sit here and says these things. I am not saying I have all the answers and if you follow what I say it will make you a positive person.
It's okay to be sad once in a while. To grieve the person I was.
But I think I am a better person for the experience.
Remember IT'S ONLY INCONVENIENT
Now where did I put those movies, and where is the ice cream scoop.
I get that question from time to time.
They (could be any one) are talking about staying positive.
What got me thinking of this was a post in Facebook.
The person was venting. What all of us Parkies, at one point or another are want to do.
The rant usually starts with how tired we are. Why was I chosen to have this?
It never seems to end, what has it done to our relationships?
Where did the person I once was go? Who is this stranger in my broken body?
You get the picture.
What do you say back to this person?
"Chin up , yes... you have an incurable, degenerative disease. But things will get better."
Yeah right...
So how do you do it?
I think it is a personal thing. No one can give you the magic positivity pill.
It is so easy to just give up.
For the ladies, I imagine it's a, big heavy blanket, 3 tubs of chocolate chip cookie dough ice cream,
and a dozen romantic movies.
For the guys, it's a pile Bourne videos, a pizza, and 2 bottles of whiskey.
Either one of those sounds good, but I hate whiskey.
And we have all thought of escaping, or hiding at one point. But that won't work .
You still have to take the meds. No matter how hard you try, it follows you.
And the kids always find you.
So....
Ready or not, here are some things I (only my opinion) think will help to keep you positive.
First...
It's like any thing else, you just have to do it.
Be as positive as you can. Smile even when it hurts.
Like any other chore. You may not want to do it.
But you just have to do it.
It's not easy. You really have to work at it.
Even when it seems so fake, so insincere.
There is a term in sports " Fake it until you make it". If you say it enough, you might even start to believe it.
As much as people want to empathize with you when they ask "How are you doing ?",
most times it is because they don't know what to say. They definitely do not want to hear all the things that you, as a Parkie, are going through.
A simple "I am fine" will do. I have found nothing brings you down faster then listing everything that is going on.
It sounds too simple, and no you will not turn in to a positive person instantly. It won't make the symptoms go away.
But if you do it enough you actually start to feel it.
So that's it.
NOT!!
Being a positive person is more than just saying to yourself.... I am positive.
Your life has changed. Things I once took for granted I now struggle with.
But if anything, I now appreciate things a lot more.
You have to live in the moment. Not just live in the moment, but be in the moment.
Stop some time while the moment is happening to look around, take stock.
No mater what you are doing. Even the most simplest of events.
Or the biggest events.
Regardless of how I feel, even when I am in the middle of a sadness, I stop and look around at the moment.
Watching a humming bird outside the window. Looking at the dawn as I am coming home from the gym. Watching Cheryl sleep. Sounds creepy, but I fall in love with her every time I do.
Listening to a group of friends talk about the last round of golf.
Be in that moment. It will never come again. And that is something Parkinson's, or anything else, can not take from you.
It is easy to say "make every thing a moment". It does not work that way. Life does not work that way. There will be bad moments. Be there as well.
SAY YES
Say yes, as many times as you can.
If someone asks for assistance, you are asked to attend a function. Say yes.
Don't be afraid to go out of your comfort zone. What have you got to lose?
Ballet is not my thing, but I was asked and I went (it was awful). I don't get modern dance.
This will most likely end up coming back to haunt me.
But say yes. You might actually enjoy it.
Try new things. Just because you have not tried something is not a reason not to do it.
Yes you may suck at it, you will most likely embarrass yourself. But so what.
Every one needs a good laugh once in a while.
Deal with the bad things.
Don't ignore them. They won't go away if you turn your back to them. Everyone has had bad things happen to them. Death of a loved one, marriage break-up, Parkinson's. The list is long.
Some things take longer to work their way through. And some things never go away. But acknowledge the bad. Deal with it. Find out what you have to do to (in the case of Parkinson's) slow the bastard down.
Know what you have to do. Learn everything you can. Ask a lot of questions.
Cry once in a while. Cry with someone. Cry for someone.
Before I get too preachy,
To late...
Take a long look at yourself.
Take stock, be honest. Again, Parkinson's changes you, and continues to change you.
I know we all change over time. Look at the good and the bad.
Not just physical, but mentally as well.
I know I have changed my outlook. Things I would never have considered before, I would do now.
My attitude to a lot of things has changed. For example, one of my new motto's is "it's only money".
Don't get me wrong, the bills still have to be paid. But if I have the chance to do something unique, like taking my wife to a dream dinner at Chef Michael Smith's restaurant on PEI, it's a no-brainer.
There is not much I would not try. Except maybe bungee jumping. Me and heights don't get along, but I would do zip lines.
Take a look at your inhibitions. Are they something, that if the right situation came along, would they hold you back? It's okay if they will. That is what makes you, You.
"Be the person you are today, not the person you were" Perkie Parkie.
Accept the person you are today.
Like I have said all along, I am extremely lucky. Yes I have Parkinson's.
But ...
I can still do my job.
I can still put on my underwear myself'.
I still do the things I want to do.
It's fine for me to sit here and says these things. I am not saying I have all the answers and if you follow what I say it will make you a positive person.
It's okay to be sad once in a while. To grieve the person I was.
But I think I am a better person for the experience.
Remember IT'S ONLY INCONVENIENT
Now where did I put those movies, and where is the ice cream scoop.
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