Impossible can't be 54 already still don't know what I want to be.

I don't look any different, had a haircut yesterday and the same amount of gray fell on my gown. Look about the same as I did the day before. Don't suspect I'll see much change tomorrow either although I certainly wish some aspects would change, for instance getting rid of this stupid chair I've had glued on my butt now for over seven years now wouldn't that be something! Maybe this will be the year some scientist stumbles makes a mistake and comes up with a concoction to treat those of us with primary progressive MS. Turned 54 today yikes 54 I'm certain someone has the numbers reversed should probably be 35 sounds much better and I must admit I felt much better from a mobility standpoint there wasn't that much of a problem.
There was no problem taking a bath I could even dress myself by myself and eat without having to have someone cut my food.

There's no doubt that's why it's called primary progressive yet I have to admit after a while you get sick and tired of it, you get sick and tired of walking into the neurologists office for a semiannual checkup which is really just a chitchat on how you're doing because there is nothing they can offer. For the most part the visits are necessary to fulfill the insurance companies requirements for maintaining long-term disability there is also medication to relieve the symptoms caused by MS yet nothing for the disease itself.
All of you know that I'm just venting that is all apparently it's therapeutic, should've asked for a plastic dummy at least I could've kicked the crap out of it. Come to think of it I couldn't do that my legs don't work yet I'm sure I could find some unique and original way to deflate the bugger.

There I've vented and I feel better all except for the fact that in today's mail I received my personal access number from revenue Canada to file my tax return!

Happy New Year

Where Has All Our Money Gone?

In November I sent a letter to the president of the MS Society to find out why 48% of what we raise goes towards administration costs. I believe it was Newsweek which did a study of all the charitable organizations in Canada and compared the money they raised and their expenses, while we did not come out on top we were second.
Secondly our financial reports for 2009 2010 which are released annually indicates that our society allocates 18% of what we raise to research. To me that is nothing but a slap in the face, for 17 years my spouse and I have participated in many fundraising events, always under the impression the majority of what we raised was being directed towards research. Never been so wrong in my life and with primary progressive MS nothing matters more to me than research.

Finally last week I received a response "a two liner" from one of the executives asking me for my phone number so that we could discuss the issues I raised in my letter? Let's see he has my address, my name of which there are only three with house phones in Canada, obviously he has my e-mail address. Should someone show him how to use 411?

Shall we say I was flabbergasted why should I discuss figures published by the MS Society regarding their fund allocation? It's not as if a five-minute conversation would change anything it's a done deal. If you'd like to see it just do a search on Google for the MS financial reports and you'll see what I mean. My response to him followed a few days later indicating that I saw no use in discussing the figures his organization had published what would be the sense? I will no longer raise funds to support an organization where the majority of the money goes towards paying top executives. For one thing I'm tired of asking my friends and family to support me every year for our annual walk to do so this year would simply be unthinkable.

Here's the kicker, I sent the note and received an automated reply that he would be out of the office until January 24!
Now I know why we need to raise so much money.

Just for a laugh Care Canada and organizations like Shepherds of Good Hope came in that approximately 3% of funds raised being directed towards administration.

At $.18 on the dollar at least he is guaranteed employment for a long long time. At that rate how much research can we expect to conduct? It's a joke.

Makes you feel all warm and fuzzy inside doesn't it?

An interesting article was published today regarding the study of neurological disease and the possibility of a marriage between cardiovascular and neurodegenerative research.


Since I cannot post the link here send me an e-mail at ppms@hotmail.ca and I will send you the PDF document.

I am ready!

I'm ready, well as ready as I'll ever be. The gifts for our loved ones faraway have been posted a while back and have arrived safely.
We would love to be there, perhaps another year when more time is available for travel.
As for our place the gifts are wrapped thanks to the folks at our local MS chapter we do a fantastic job every year.
My spouse put the tree up on the weekend and I mustn't forget the manger too.
Odd how these little things resurrect the feelings of years gone by and the pleasant memories which are forever tied to the past.

As a young lad I recall attending church services every Christmas Eve at midnight. It must have been last year it's impossible to think it's been so long ago, these are Christmases I experienced before my teens yet I remember them vividly as if they were yesterday. Those Christmas Eves when everyone would hustle to get ready walking to our local church for midnight mass, the light snowfall was always present and it never seemed that cold just pleasant.

All the kids would sit pretending to be attentive while watching the clock waiting for this service to end and the opening of gifts to begin.

Who knew back then what I know now and what difference would it have made if I had known. Some things I would do differently others would stay the same yet that's probably the same for anyone regardless of the challenges we face and we will face them some sooner than others yet life is a circle however not perpetual there is a beginning and an end what we do in the middle is entirely up to us. Next week as we bring in the new year I'll be turning a leaf welcoming 54 this year.

For some odd reason the manger appears more important with each passing year I'm not certain why I've never been that religious yet with the passage of time one cannot help but wonder about it all.

I should devote some time to read the greatest story ever written, it is now on my computer and will be one of my goals for next year. I doubt it will inform me as to how many wise men visited Jesus "if you care to venture a guess you would be wrong" yet I hope to learn more than I know now.

God knows there must be something else for if we rely on man alone we are in trouble from the get-go, all it seems we are able to accomplish is to shoot each other. If we rely on the so-called theory of evolution which should be known as a hypothesis as it is yet unproven. Why is it that monkeys still exist, too bad Darwin isn't around to answer that one.



Wishing everyone a Merry Christmas and all the best to you and yours for 2011.

 

Seven days to shop

Well optimistically I still have almost 7 days to complete my Christmas shopping this year Yahoo.

Not that I will be doing much shopping I usually do it online but this year with my wife's trip to Mexico and our lack of real needs we decided to go easy on the gifts this year.

We would've liked to go and spend some time with our new grandson in Barrie Ontario however my spouse does not have that many days off and we're not terribly fond of driving six hours for a one or two day stay. What also makes it difficult is that I have to rent a hotel room that is handicapped accessible while we are there which is a pain but we will go and see him come springtime.

It will be fairly quiet this year last year we received everyone from my spouses side of the family for Christmas dinner and that was close to 30 people in a condo. It went off without a hitch and everyone had a good time, this year the dinner is at another family member's home which is not accessible as they are serving dinner in the basement. I have stopped trying to understand and frankly I don't give a !!! For Thanksgiving we went to a friends home which was also not accessible yet using a few pieces of lumber as a makeshift ramp he pulled me up the stairs and brought me down later that evening, oh and did I mention he has MS.

I guess with this type of situation the amount of effort one puts in is in direct proportion to one's willingness to go the extra mile.

Instead we have our godchild coming over with his family on Christmas Eve for a visit and on Christmas Day we are going to the casino with a couple of friends returning home for a traditional Christmas dinner.

Told you.
Nemo was his name, he was born long before Disney came out with the movie and we are still waiting for royalty fees LOL

Just 2 Minutes (English subtitles)

This was the final straw!

My discharge is scheduled for tomorrow morning and that will happen come hell or high water. Since residents with mobility impairments only receive one bath per week mind was scheduled for this evening which was fine as I would meet my spouse the next morning clean and refreshed.

Unfortunately the hydraulic lift for the bath broke as a result I had to pass on the bath option and resort to what I've been doing for the past week which is washing myself with a washcloth soap and towel a sponge bath really. It goes without saying I will not be looking my best tomorrow morning, I can only be thankful that my hair is short and doesn't look that bad after all but really when is this Nightmare Going To End?

Outhouses

Yesterday I needed to take my chair in to have some items installed parts which were on backorder. Of course while I was there I needed to use the facilities and after such wondered whether I should change the name of this blog to something resembling "The Bathroom Reader" except it would be specific to persons having mobility impairments. The last few months I've been in many washrooms I would certify as outhouses, some a little bit better, those I felt comfortable in and finally the five-star facilities! Possibly this would be a viable name "searching for a five-star outhouse"


This place I went to in order to have my chair repaired is run by the Québec government the same government that regulates the establishment I am in currently. Take a look at the pictures below and decide for yourselves where you would rather go LOL should be an easy decision.

Hopefully this will be the last in my installment of outhouses unless of course I haven't spoken of the one at the Ottawa airport.

My stay here is coming to an end shortly my spouse should pick me up on December 10 our 33rd wedding anniversary unless of course she has met some Mexican in Mexico and has decided to take up residence there. Can't say I blame her LOL.

How can people be so blind

So this morning I decided to voice my opinion with the person responsible for the floor that I'm on which is basically a short stay unit for persons who have had surgery or need some time away from home.
We began by discussing the fall I had taken, the reasons why and how it could be prevented in the future. I had to show the person responsible that one of the chairs utilized in the washroom was adjustable which would have made a tremendous difference. She was unaware of the adjustment and in the beginning told me flat out that it could not be adjusted, after explaining how to do it she was able to adjust the chair to the proper height within minutes.

I showed her the grab bar in the washroom and how ineffective it was being totally useless due to the placement of the toilet paper dispenser. How can you grab hold of the bar when the dispenser is in the way?

I was about to bring up other items when the conversation was cut short by being informed that the facility was not really meant for me in a motorized chair? When I mentioned that most guests were wheelchair-bound I was told that was incorrect most patients were ambulatory. Also, the building itself was meant to cater to persons 65 years or older! As well when we came right down to it they were unable to cater to my requirements or needs. Oddly during each of my meals it was fairly easy to see the majority of people were  using manual wheelchairs. Several had suffered strokes wheelchair bound taking physiotherapy for their long journey back to independence.

In my estimation at least 80% of the people that were there during my stay were wheelchair-bound.
So I questioned the installation of various items such as the installation of the mirror which is so high no one can see their face when shaving. Asked about the toilet and whether or not it met building codes, I knew it did not yet at this point I also realized my chances of ever coming back to this location were becoming less likely the more I pursued.

Finally I received the truth, it all came down to the almighty buck, the facility was built quickly with minimal funds to accommodate a growing need. There is no doubt the need is there but if you're going to build something build it correctly remember.
 "Universal Access"
This afternoon I went back and told her that the potty chair would most likely suit my needs. She was pleased yet indicated that only one existed and if I wanted to return I would have to bring my own.
I'm at a  loss for words, take a look at the pictures which follow to get a sense of what I'm speaking of.
Never would I have imagined that at my age I would have to fight for the right to crap wherever the bloody hell I wanted to especially when my condo was literally in sight and less than a few hundred yards away!



But hey it's beautiful outside what with all that white stuff arriving just in time for Christmas too

Merry Christmas

What Day is it

What is today? It is not December 2nd as that's when I arrived, it's not the 10th as I would be home so it's somewhere in the middle, actually it's December 5th another five nights to go in this facility.   One does not need to suffer from Alzheimer's or any form of dementia to become disoriented in these facilities, there are no clocks on the walls and people rarely speak about anything other than the number of days remaining until their release.  Similar to what you would find in a prison yard where inmates have nothing to do but count the number of days until their time is up.  There is occasional chitchat amongst the people staying here mind you at 53 I am the youngest and do not share that much in common other than needing a place to stay.

As my first post since arriving in respite care I cannot say I am impressed on the contrary the first few days have been pretty discouraging.  The facilities are definitely not adapted for people with mobility impairments the one thing they offer is constant supervision available by the press a button.  The staff are attentive and do their best with what they are provide. The meals are good certainly adequate by my standards.
The rooms are sparse there is one dresser a chair in one corner an a hospital bed, an electric one that seems to have a mind of its own, sometimes it works sometimes it doesn't.  The washroom is a joke yet I must admit there is one grab bar there WOW and that's it for the mobility impaired.  No phone, television not even a bloody picture on the wall they are bare.  I went home again today as it takes me less than five minutes with my motorized wheelchair and I was able to use my washroom with less effort actually the one here is totally useless and that's when I ended up on the floor, I can assure you that will not occur again.  To sum it up I have more chances of falling and hurting myself here that I have at home so why risk it? Next time providing I'm still as mobile as I am today I will hire someone to come in the morning to help me out of bed and do the same in the evening.
I recall doing this a while back in the problem there was scheduling, the attendant would show up at 7:30 PM or 8 PM at the latest to put me to bed and then the next day the other attendant would show up anywhere from 9:30 AM to 11:30 AM. That's a long time to be spending in bed waiting when you're normal routine as you in bed at 10 PM and up in the morning around 6 AM

Apparently the weather is beautiful in Mexico which is fantastic anyone who's stayed with me for this many years deserves a break from the insanity of living with this disease on 24-hour seven day per week basis.
Still you only appreciate what you had when you lose it and I can't wait for her to come back.