Thursday, January 29, 2009

I received a request from the government for additional information from my family physician as well as an optometrist to confirm that my current condition still permits me to drive safely. I don't know how many times I've have these forms completed in the past yet it looks like this will be ongoing two years. It's not that I mind getting them completed yet by the time I factor in all of the costs associated completing these forms they actually represent the majority of my medical expenses.

Sometimes I get the feeling that they are just trying to wear you down to the point where you give in. Well I've got news for them because it's not going to be that easy with me my intent is to stand firm and maintain my driving permit for as long as possible. In a way I guess you can't blame them when they look at the prognosis they know that eventually I will have to give up my driving privileges but I'm not ready for that yet and as long as I believe to be comfortable and safe behind the wheel I'll do my best to keep my permit.

Wouldn't it be a waste if I lost them today as the modifications which allow me to drive account for close to $10,000 but I guess the government doesn't look that far ahead and to them it's peanuts since after all we all pay for it.

Made an appointment with the ophthalmologist on February 11 and just completed a letter to my general practitioner explaining the reasons why I needed the forms completed. The last time they were done I did not have a family physician they were completed by my neurologist. It should be interesting as my general practitioner doesn't know that much about multiple sclerosis and a good portion of the form deal specifically with that issue.

Tuesday, January 27, 2009

I just spoke with my daughter who mentioned her blog and it reminded me that I had not written in mine during the last few days which can be attributed to the fact that things at the moment are probably not going that bad so there's really nothing to write about mind you I will make an effort to add something every day even if it's just a few lines.

If there's one thing I miss the most from having this disease it's the isolation. There are certainly a number of groups I could join however my experience has shown that you basically get to listen to other people's problems while this can be therapeutic at least initially to show you that you are not alone I do not believe they help that much in the long run. After you have gone through grief and have come to grips or acceptance with the disease the groups to me did not appear that beneficial.

However once my wife leaves the house for work in the morning I can spend the day watching television, reading a book or even attempt some artwork at least until my fingers give out and I can hold the paint brush any longer at which point the artwork usually turns into some type of abstract painting as I inevitably drop the paintbrush on the canvas. It's similar to dropping a slice of buttered toast inevitably it will fall butter side down likewise the brush will always fall on the painting.

Every afternoon almost like clock work I need to rest for an hour or so, in the past I would either go to bed or have a seat in my lazy boy electric recliner yet with the number of falls I've taken recently I'm paranoid at getting out of my chair at least until the bruises heal and the muscles don't hurt then like everything you tend to forget. For now and the foreseeable future I stay in my electric chair which luckily has a tilt feature allowing me to lean back quite a bit I use it to rest.

Though we have the Van I am afraid to use it alone it in the winter. A few days ago I drove it to the dealership in order to have the battery replaced while there wasn't that much snow I got stuck, the ramp on the Van was down but there was enough snow that it would not make contact with the ground a 2 to 3 inch gap between the ramp and the ground. I tried to ram the ramp thinking my front wheels would force the ramp downwards which they did yet I somehow ended up sideways on the ramp with one of my front wheels off of the ramp itself.

Seems like I was there for a long time but it was probably less than 30 minutes of rocking my wheelchair back and forth until people came out of the building saw that I needed assistance. It took three of them to be able to put me back on track so that I could access the Van.

Once inside the only thing I wanted to do was get the van started and the heat going so I could warm up a bit. Unless we are down to bare asphalt which should occur sometime in April there will no longer be any attempts to take the Van alone that is for certain.

Sunday, January 18, 2009

Saturday was a good day except for the fact we had to call CAA in order to have our Van boosted. The modification was done by Braun in the US and sold by shoppers home health care in Canada. I believe one of the ways shoppers home health care increases their margin is by replacing the original Toyota battery with one made for shoppers home health care. The battery its color even has the shoppers home health care logo. First-time I've owned a Toyota and it hasn't started and to date I've owned six. Needless to say next week I will be purchasing the appropriate battery and telling shoppers to stick it well you know.

Other than that Saturday was a good day Sunday however I took a fall in the washroom while trying to stand near the vanity. Luckily my spouse was around because I don't know what I would have done by myself, my only option would have been 911 and I have used that service once before yet it makes me feel very uncomfortable to use it. Although I don't necessarily want it I think it will be time that I look at a monitoring system of some type so I can call for assistance when required. I have to tell you to date I have been damn lucky as none of the falls have resulted in any serious injuries. Oh I've got a lot of blue and black bruises but other than that I think my ego is what takes most of the beating.

Tomorrow will be a better day for one thing I don't take as many chances as I do when my spouse is here with me. When she is here I may let my guard down a tad too often.

Take care
Michael

Friday, January 16, 2009

Today at 10 AM I had a meeting with my physiotherapist or was it my ergo therapist? I don't know there's so many of them that after a while they all look the same. It was to be the final evaluation regarding my Van and of course they found some improvements that could be made. Not to be sarcastic but why don't you try solving this MS problem and then I wouldn't have to rely on these adaptations which cost a fortune and are frustrating as hell to use. I know I'm not being realistic but right now at this very moment I'm ticked off I'm tired of this plain and simple.
Both of them came ladies who are always pleasant and polite and we spent hours trying this and that in the van to come up with ideal solutions to what I interpret as trivial concerns. My seatbelt did not fit properly or exactly as it should, in a frontal collision I don't think it would matter that much considering that I am driving the vehicle from a wheelchair which has certainly not been crash tested. To them it was very important to me well it didn't carry much weight similar to flying in an airplane when they ask you to fasten your seatbelts for landing. At that speed what would it matter other than making it easier to identify the bodies.
In any case it's a done they are gone and now I sit waiting for an electrician who should be coming by between 12 and 12:30 PM mind you it is now 1:30 PM and I'm getting tired of waiting.
I should also mention not that it's a big thing but it goes hand-in-hand with ms and that is that my bladder decided it was time to empty itself just as the two therapists were leaving. This means that at this moment I am sitting in front of the computer with a diaper that is overflowing, my pants are wet and I am literally pissed off. I'm sorry to sound negative but in some cases MS sucks big time! I'll wait another half hour and if the electrician doesn't show up at least I'll take my diaper and pants off and try to clean myself as best I can. I'm afraid to take a shower when my spouse isn't around because if I fall I know it will be extremely difficult for me to get up or move in any way.
I hope you never have to live through this and I would not wish this on my worst enemy not that I have any but still I would not wish it on anyone nor would I we willing to pass it on to anyone. If this is meant as my mountain to climb I would've settled for Everest because this is one hell of a mountain.

Saturday, January 10, 2008

Pretty good day today although I did not venture outdoors and took a few Tylenol's for aching muscles from my experience yesterday.
It happens infrequently yet when it does I am totally helpless, I one time if I fell I was able to slide myself on the floor in order to get to my lift chair "one that is meant for the bathtub but I modified it" sit on it and then rise to the point where I can transfer to a chair.
Well yesterday before supper I missed the transfer from my wheelchair to my recliner by one or 2 inches not much but enough to know that I wouldn't make it so as I always do I do not try and prevent the fall but rather let it happen in a semi-controlled manner. Not bruised I ended up taking the advantage of lying sideways on the floor with a pillow and watched some television. Luckily of course my spouse was there, with her help actually she propped me up to a sitting position where we enjoyed dinner and a glass of wine.
After which she retrieved my lift chair and eventually I made it on the chair which is only about 2 inches off the floor, raised it to its highest level and slowly slid sideways onto my electric wheelchair.
There is no doubt that had she not been there I would've had to call for help probably 911 as I did probably about a year ago now. With her help everything returned to normal other than stiff muscles and a bruised ego I came through fine. That has to be one of the hardest things to come to grips with the realization that you can no longer function on your own you are dependent on someone else in the event anything out of the ordinary should happen. It's humiliating and it's so frustrating the only way to come out of that is to have a good shoulder to cry on which thank God I have and I did for quite some time, finally dried my eyes out went to bed and slept till this morning.

January 8, 2009

For the past several months I've been trying to obtain quotes in order to modify our condo to better suit my needs. As the disease progresses my environment needs to change in order to keep up.
In order to get the work done I had to submit two quotes from different contractors and forward these to the city engineer for approval. The work is subsidized so expediency is virtually impossible to attain, I actually had to wait close to three years before getting approval to have the work done and whenever one works with the government involving a subsidy two things happen, the first when the government gets involved in anything prices tend to rise. Secondly trying to get projects accomplished quickly are a figment of your imagination. Things move so slowly it's sickening, I must have contacted a dozen contractors, the majority refused because they were too busy or if you happen to mention the word government subsidy they run plain and simple. Of those that accepted to provide me with quotes well that's been an experience on its own.
Several months ago I sent in two quotes as requested by the city, the lowest bid was accepted by the city engineer yet after further investigation on my part as to the differences in pricing I found that the lowest bid did not meet certain regulations relating to our provincial fire code. When I called the city engineer to let him know that the lowest bid was in fact lower since it did not meet the fire code and required less equipment his response was "doesn't matter the lowest bid is the one we take", even after explaining that the lowest bid resulted in an installation which was basically illegal it didn't matter in the city's eyes that's the quote they would approve unless I provided them with yet another quote from another contractor. So next Tuesday another contractor will visit and I'll start the process again hopefully this time things will work out and we will be able to get things started.
It's frustrating when you encounter this type of situation where it makes no sense yet the person at the other end of line sticks by the regulations even though they are wrong. Whatever happened to guts? I mean being able to stand up going to your boss and saying hey this is wrong. Seems so simple doesn't it?
PS: stress and MS do not mix very well stress has a tendency to exacerbate symptoms which in my case leads to inpatients and great difficulty when dealing with incompetence in general.

January 7, 2009

I have just returned from my semiannual visit to the neurologist, was in his office for a grand total of 10 minutes. If it wasn't for the documentation I require periodically to keep the insurance companies at bay there would be no need to visit him any longer.

Every asymptomatic symptom I have brought up he has countered with medication which has proven effective, in this most important regard he has been a tremendous help yet I am afraid he has done all he can that's why my visits to his office are so short. After exchanging some pleasantries he inquires as to any changes in my status I confirm gradual deterioration as to be expected with progressive multiple sclerosis. Usually the conversation ends when I ask him if he has come up with any miracle cures as of yet? Of course he hasn't, nor has anyone if they did the news would spread like wildfire so I leave only to return in six months.

Today was not exactly the ideal day to venture outdoors the weather is horrible it's snowing abundantly with a predicted accumulation of 25 cm which is a lot of snow. For certain I thought the paratransit bus would be late picking me up from home and late for the return trip cking me up for the return trip yet things worked out well probably because it was early in the day. I wouldn't even think of going out this afternoon.

Recently I've received a number of publications from the MS society and others who claim or rather predict a cure for MS in the next 60 years or so. Great I will only be 112 and then all they will have to do is figure out how to fix the areas in my central nervous system that were damaged, reestablish some form of movement in limbs I haven't used for over half a century, rebuild muscle mass and all that fun stuff.
God dang it I'll be as good as new NOT!

Since those of us with progressive multiple sclerosis represent the minority of people affected with multiple sclerosis we have to search the articles or magazines to see if they even recognize the minority unfortunately they don't speak of this form of disease very frequently. As a matter of fact some doctors are convinced that while it may be similar in nature to MS it has its own unique entity which makes me wonder if participating in the walk every year makes any sense? Sometimes I feel as if walking for cancer would be just as effective.

Our MS walk ah yes it comes up every year as a reminder that hey you haven't done enough you've got to be able to do more we need more to help you, right. Every year at this time we are bombarded with e-mails regarding the walk. I have a luncheon this Friday and I can guarantee you we will be reminded of the date the amount raised last year our new objective and to get our forms in quickly.
My wife and I have participated and walked in the last 14 of them. That's 14 years which I calculate translates into an estimated contribution of close to $10,000.
It pales in comparison to what some other people raise yet it is what we could do to help the cause, it's been a long time and I believe that this year we will be taking a break from the walk and fund raising activities. Don't get me wrong I'm all for raising funds yet I am tired knowing that out of every dollar I raise over 95% will go towards research with the vast majority targeted to find a cure or medication for the relapsing remitting version of this disease.
If that's not what I have, if it is a different disease let's identify it as such and raise funds specifically targeted to that group today from my perspective all the emphasis is being placed on a form of the disease I do not have. During the past years I have accumulated an ample supply of T-shirts, sweaters, jackets, watches to last me a lifetime thank you.

I'm also tired of feeling alone during the walk, oh there are hundreds of others who walk yet in the 14 years I can remember on one occasion where someone who had sponsored me actually walked with me. That was the only time and it was in Milton Ontario many years ago. Since that time Denise and I have walked every year with friends and family of people who have multiple sclerosis of course there are people in the walk who have MS yet the majority of those who participate appear to be family and friends. In some respects there is a sense of loneliness that accompanies us at every walk and I don't wish to relive this any longer. If you are someone who supported us throughout the years my deepest heartfelt thank you for providing the funds the society so desperately needs. This year I will not be soliciting think of it as a sabbatical if you will and we'll see what happens next year. Should we decide to walk the year after do me a huge favour by pledging half the amount you normally would have and foin us for the walk.