Monday, December 29, 2008
Our Canadian finance department recently implemented a plan to help persons with disabilities providing us with the ability to save and receive contributions from our federal and provincial government. The plan applies to persons who receive the disability tax credit for permanent/prolonged disability.
It is a great program which is long overdue and those of us would have been waiting for this type of program are disqualified if older than 49 years of age. I believed our Canadian Charter of Rights protected Canadian citizens against discrimination based on sex, color, creed, or religious beliefs, disabilities etc. etc. well age was in there somewhere but for some reason it does not appear to apply to this particular program.
I have written several letters and will post the responses I receive on this blog however if you are under 49 do not wait to apply for this program. To find out more information about this program follow the following link at the bottom of this topic.
If you're over 49, tough luck you are SOL, but please write a letter to the finance minister voicing your concern.
Now doesn't that make you feel all warm and fuzzy?
Disability Savings Grant and Bond
Tuesday, December 23, 2008
December 15 my wife and I returned from one week in Las Vegas, a week which we had planned for quite some time in order to celebrate our 30th wedding anniversary. Several weeks before leaving I developed a urinary tract infection and had to have a Foley catheter installed, it wasn't a big deal but carrying a Foley wasn't part of my plan. I only had it for a short time a few days later it was removed only to be reinstalled a few days later during a follow-up to visit with the urologist, That visit turned into a nightmare and rather than voicing my opinion which I did months later the Foley catheter was reinstalled. I was really beginning to wonder whether or not we would make the trip. Things started getting better a week or so before our departure, the Foley catheter was removed I received instructions on how to self catheterize "which later proved to be totally unnecessary." I was set to go! Then a week before leaving my wife developed bronchitis. After a visit to the doctor and a prescription for antibiotics she began to feel better and we managed to embark on our trip as planned.
We saw several outstanding shows while we were there although something happened at one of them which took me by surprise and totally blew me away. Those of you in a wheelchair will undoubtedly relate to this as I'm certain all of us have been in a position where someone will make an off-the-cuff remark about how wonderful it must be to have a chair or how they wished they could have one, a comment made when you’re usually in a lineup waiting. My standard response “you can have the chair as long as you take everything that comes along with it". They usually look at me for a moment then chuckle realizing they are better off without it as if all of a sudden they realize I'm in it not by choice.
Being in a wheelchair they normally bring you up to the doors to the theater and once opened you are ushered into place. My wife and I were waiting when a woman approaches me and asks if I could get out of her chair? I thought to myself, here we go replying with my usual answer to which she replied I'll trade! No one had ever said they would trade, frankly she caught me completely off guard, I told her I had progressive MS, she asked me how long I had been in the chair, how long since my diagnosis, the medications I had to take and finally my age. She replied "I have you beat I will still trade". I was dumb found not knowing what to say I asked her what she had? You could tell she was weak and at one point she had to kneel beside my chair because she was feeling faint.
Turns out she was at the Celine Dion concert her ticket sponsored by the Dream Wish Foundation due to her affliction with leukemia, considered stage four her prognosis was bleak she did not expect to live for more than one year and had just prior to the show received her chemotherapy treatment. She did not qualify for additional treatment there was basically nothing else that could be done for her.
At that point I wish to God I would've had the strength to get up and give her my chair, to look at her you could never tell she was so ill, she was dressed in a formal dress for an evening out alone. The dream/wish foundation offered her two tickets yet other than her caregivers she had no one so she decided to go alone. Several times while we were waiting she had bouts of weakness at one point my spouse offered her to sit on my lap while we waited she was too proud to do such a thing and left several times with the security guard only to return a few moments later. I suspect the chemotherapy treatment she had just finished was having its effects on her. When we entered it took me a while to locate her sitting near the exit with security close by in case she had to make a quick exit. Yet we were relatively close she left several times finally entering just before the show started.
My wife tells me the show was good hard for me to say what I did see I saw mostly in tears. I felt so sad for this woman and realized that I had met my match that there were people out there I would not change or trade places with. After the show she rushed over to give me a big hug and told me that she would pray for me and then hugged my spouse and told her to take good care of this guy.
There were many people in wheelchairs waiting for the doors to open to see this concert, why she picked me I will never know, if I could have gotten up and given her my chair I would have done so in an instant I felt so helpless in my inability to help her that day. Something that I took for granted was someone else's last wish and that affected me greatly. We did not even get to know her name yet I decided to call her Cathy, why? Don't know but everyone deserves a name. I will never forget her, grateful to have met her and to have spent a few moments in her presence sharing in her grief and happiness as she was experiencing one of her final wishes one which I easily took for granted.
To this day it is difficult for me to think of her without shedding a tear, as for the show I watch a bit yet each time it leaves me heartbroken.
Monday, December 22, 2008
One of my requirements, an adapted room yet it's amazing how that definition varies from location to location. In some cases having a grab bar somewhere near the toilet qualifies to some as being adapted, something we experienced in Québec city this summer.
On our Vegas trip we stayed at the Bellagio I was amazed at the level of adaptation our room had, mind you I did call them beforehand to make certain our room had a wheelchair accessible shower.
They had a motorized lift in the bedroom and one in the washroom, the washroom facilities included a wheel in shower a huge tub and a motorized lift to transport someone from the toilet seat into the shower.
It was amazing I had never seen anything done so professionally.
I began by saying that we were getting ready for Christmas, my wife did the work all I wanted to do this morning was to solidify the legs on our dining room set. It's one of those where the table is high and the chairs are more like barstools when it comes to height because of this they don't tend to be as durable.
For certain if I removed the screws added a bit of epoxy that would surely take care of the problem. Once again my brain knew very well I could perform the task yet my hands could not so while I ended up gluing one of the chairs I also ended up with epoxy on my pants, my shirt, hands etc. etc. when it comes to fine dexterity well I don't have it anymore. How can you help but not get frustrated when everything you used to take for granted slowly drifts beyond your grasp. I built a house for Pete's sake you would think that mixing and applying a bead of epoxy would be a cinch. Nope major undertaking now my back is sore my arms are sore and I'm not doing anything for the rest of the day.
To everyone I would like to wish a Merry Christmas if you don't celebrate Christmas happy Hanukkah if you don't celebrate that happy nothing at all and the best for 2009.
Friday, December 19, 2008
Hey I have a follower I'm so happy he ain't heavy he's my brother! Thanks Roger appreciate the visit and the tests to see if this thing actually worked.
I'd also like to hear from others with the primary form of this disease and see how you are dealing with it now I realize we don't have much of a choice but some tend to deal with it better than others. Recently we received our modified Toyota Van which has provided us with a great deal of freedom that was lost due to being wheelchair bound. It took a long time actually almost 3 years but I was able to conserve my driving license "I drive from my wheelchair."
Actually I had an appointment today with my occupational therapist, canceled it due to the amount of snow outside these electric wheelchairs are great on asphalt but suck on anything else, far from being four-wheel-drive if there is any doubt you'd better stay home.
Here are a few pictures of our new van.
PS: If you can drive an electric wheelchair in a shopping center without taking out fellow shoppers don't let anyone tell you your driving day's are over. It's not rocket science.
Thursday, December 18, 2008
In the beginning after receiving my diagnosis I didn't think much about this disease and I didn't think I'd spend a lot of time thinking about it. As time went on and the disease progressed it made a point of reminding me every single day that it was there.
As others I participated on the promise trial for Copaxone and injected this medication for close to four years before the pharmaceutical firm decided to stop the trial as there were no benefits found. They are bound to come out with something else yet it gets discouraging when everything you hear or read about is focused on those with relapsing remitting or secondary progressive types of this disease. It appears that little research is done to find the cause or treatment for primary progressive. Perhaps it's just me but I look forward to your thoughts on this.
Of course there are good days and bad days and at one time the good days seemed to outweigh the bad ones I'm getting to the point where I think they're on par.