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.
Saturday, January 10, 2009
Thursday, January 8, 2009
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.
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.
Wednesday, January 7, 2009
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.
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.
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