Today was much better than yesterday, no accidents and slept quite comfortably for most of the night. Problem is at six o'clock my eyes were wide open yet they were only coming to assist me at 9 AM and that made for a long wait. As for the television I gave up went back to Costco and purchased another one different brand a bit more expensive but it should do the trick. We will bring the other one back once Denise returns from her course in Toronto.
I'm lucky to have a neighbor who really cares and is willing to go the extra mile to make certain that I have everything I need. Oh I took the van today it had been quite some time yet I went for a haircut and again to pick up that TV. I thought I'd spend some time at the mall but really wanted to make it home.
I've read an article regarding plasmapheresis and its use in the treatment of primary progressive multiple sclerosis. It's hard to obtain additional information yet if anyone out there have some they would like to share please send me an e-mail as I am definitely interested.
In the meantime hang in there!
Tuesday, May 5, 2009
Monday, May 4, 2009
Monday, May 4, 2009
My spouse is on a two-week training program in Toronto, she left Sunday afternoon and today was my first day alone, although I have the support of the CLSC in the mornings and evenings to assist me in getting in and out of bed it's going to be a long two weeks!
Last night the person came by at 9:30 PM to put me to bed, they returned in the morning at 8:30 AM. Usually I'm up at 6:30 AM and hit the sack at 10 PM sharp. I must have lied in bed till 2 AM before I finally fell asleep in the meantime however I managed to knock over that urine collection bottle I utilize if I have to go and it wouldn't you guess landed well beyond my reach. After managing to get out of bed and reach for the bottle several items had gotten wet. Luckily I had decided to wear a diaper and the damage was limited to it and my pride.
Managing to get back into bed proved to be quite a challenge yet as with anything in life if you don't quit you eventually succeed you have to, after convincing myself I could do it eventually I mustered up enough strength to kick back and lift my legs onto the bed. I think I fell asleep shortly after.
Since she was leaving for two weeks we purchased a television set for our bedroom reactivated the cable in that room yet the television I purchased doesn't function. Let me describe the symptom so you can appreciate the situation, first of all the television is new and connected to a good cable box. After playing for 15 or 20 minutes the image on the television screen is lost except for the remnants of what resembles a ghostly image in the background yet you are effectively left staring at horizontal lines comprising of cyan magenta and yellow. That's not too bad you can't watch television so what it's no big deal yet when the screen turns to this a loud noise resembling feedback is emitted from the speakers. The volume is similar to what you would enjoy at 16 yet it's not music simply loud screeching feedback, the remote control doesn't work you can't turn the volume down or shut the television off. The only way you can rectify the problem is by unplugging the AC power to the unit. Oh yeah remember you can't get out of bed nor can you get back into bed. To play it safe I decided to leave the television set off and listen to the radio, I'm not going to watch the television tonight and have sent a request for information from the manufacture.
When I got up in the morning "which only took a few minutes" the first thing I did was make myself a coffee then I went and took a shower, Denise if you're reading this there were many people watching over me LOL. I had my cell phone handy and took my time and everything went well. I was hoping to wear a pair of long trousers yet I cannot put those on by myself without assistance so I decided on some summer shorts needless to say I did not venture outside not that I had the requirement to do so.
Tonight I plan on tying that stupid bottle to the side of the bed which was the major source of my grief yesterday. And to think that this is day one of two weeks, unbelievable. My neighbors have also invited me for dinner tomorrow night it's only been one night and they're already taking pity of me, not that I'm going to do any complaining.
On the bright side I haven't started talking to the walls yet mind you that's just a matter of time and what I thought would take several weeks may happen within a few days.
Keep Smiling
Counting the Days!
Last night the person came by at 9:30 PM to put me to bed, they returned in the morning at 8:30 AM. Usually I'm up at 6:30 AM and hit the sack at 10 PM sharp. I must have lied in bed till 2 AM before I finally fell asleep in the meantime however I managed to knock over that urine collection bottle I utilize if I have to go and it wouldn't you guess landed well beyond my reach. After managing to get out of bed and reach for the bottle several items had gotten wet. Luckily I had decided to wear a diaper and the damage was limited to it and my pride.
Managing to get back into bed proved to be quite a challenge yet as with anything in life if you don't quit you eventually succeed you have to, after convincing myself I could do it eventually I mustered up enough strength to kick back and lift my legs onto the bed. I think I fell asleep shortly after.
Since she was leaving for two weeks we purchased a television set for our bedroom reactivated the cable in that room yet the television I purchased doesn't function. Let me describe the symptom so you can appreciate the situation, first of all the television is new and connected to a good cable box. After playing for 15 or 20 minutes the image on the television screen is lost except for the remnants of what resembles a ghostly image in the background yet you are effectively left staring at horizontal lines comprising of cyan magenta and yellow. That's not too bad you can't watch television so what it's no big deal yet when the screen turns to this a loud noise resembling feedback is emitted from the speakers. The volume is similar to what you would enjoy at 16 yet it's not music simply loud screeching feedback, the remote control doesn't work you can't turn the volume down or shut the television off. The only way you can rectify the problem is by unplugging the AC power to the unit. Oh yeah remember you can't get out of bed nor can you get back into bed. To play it safe I decided to leave the television set off and listen to the radio, I'm not going to watch the television tonight and have sent a request for information from the manufacture.
When I got up in the morning "which only took a few minutes" the first thing I did was make myself a coffee then I went and took a shower, Denise if you're reading this there were many people watching over me LOL. I had my cell phone handy and took my time and everything went well. I was hoping to wear a pair of long trousers yet I cannot put those on by myself without assistance so I decided on some summer shorts needless to say I did not venture outside not that I had the requirement to do so.
Tonight I plan on tying that stupid bottle to the side of the bed which was the major source of my grief yesterday. And to think that this is day one of two weeks, unbelievable. My neighbors have also invited me for dinner tomorrow night it's only been one night and they're already taking pity of me, not that I'm going to do any complaining.
On the bright side I haven't started talking to the walls yet mind you that's just a matter of time and what I thought would take several weeks may happen within a few days.
Keep Smiling
Counting the Days!
Friday, May 1, 2009
Friday, May 1, 2009
Every few months I receive a magazine which is almost always distributed by a pharmaceutical firm. Informative the magazines focus on well-being, research new findings, nutrition, advances made in the past few years. Without a doubt important information which I appreciate receiving yet there seems to be one reoccurring theme which to put it bluntly turns me off and I usually end up tossing the magazine in the recycling bin.
It seems that no matter which publication you read there is always a story or a profile of someone with MS diagnosed years ago that struggles on a daily basis "don't we all" with this disease. However these people all have something in common and the publishers make certain you are aware of this by printing catch phrases comments in large bold lettering usually stating something similar to.
"I was diagnosed years ago, all I could think of was the wheelchair yet I told myself No That's Not Going To Happen To Me."
If you have subscribed to one of these publications you get to know which pharmaceutical firm publishes what and even though it may be difficult to find their name in the publication you know they are promoting their product.
First of all I'll be the first to admit that having a positive attitude is worth its weight in gold when dealing with Multiple Sclerosis or any other chronic condition for that matter. If your spirits are up it makes dealing with those inconveniences if you will much easier. In terms of being positive you would probably have a difficult time finding someone who has remained as positive as I throughout the course of this disease.
Reading how a positive attitude coupled with one of the disease modifying therapies available today will prevent or allow a person to decide whether or not they become wheelchair dependent is like giving me a slap in the face telling me that I was not positive enough and did not try hard enough.
Of course the articles are written for the most part targeting people with relapsing remitting multiple sclerosis, their symptoms would probably disappear even if they took nothing. Yet since this is the only medication we have we tend to emphasize the control that a person has over this disease.
If I could walk believe me I would and it's not for the sake of not trying hard enough. What started off as a limp progressed to the point where I required a cane then 2 canes. Eventually I had to turn to a Walker using a wheelchair to maintain what little strength I had remaining during outings or the like. Did I quit absolutely not did I give in no damn way yet when the disease decides to strike I don't care how positive you are you will fall. If you are capable of maintaining your positive attitude once you have fallen great it will only make things easier for you and those around you but don't for one second think that you can alter the course of this disease by your positive outlook because quite frankly you can't, I know because I've lived it.
It seems that no matter which publication you read there is always a story or a profile of someone with MS diagnosed years ago that struggles on a daily basis "don't we all" with this disease. However these people all have something in common and the publishers make certain you are aware of this by printing catch phrases comments in large bold lettering usually stating something similar to.
"I was diagnosed years ago, all I could think of was the wheelchair yet I told myself No That's Not Going To Happen To Me."
If you have subscribed to one of these publications you get to know which pharmaceutical firm publishes what and even though it may be difficult to find their name in the publication you know they are promoting their product.
First of all I'll be the first to admit that having a positive attitude is worth its weight in gold when dealing with Multiple Sclerosis or any other chronic condition for that matter. If your spirits are up it makes dealing with those inconveniences if you will much easier. In terms of being positive you would probably have a difficult time finding someone who has remained as positive as I throughout the course of this disease.
Reading how a positive attitude coupled with one of the disease modifying therapies available today will prevent or allow a person to decide whether or not they become wheelchair dependent is like giving me a slap in the face telling me that I was not positive enough and did not try hard enough.
Of course the articles are written for the most part targeting people with relapsing remitting multiple sclerosis, their symptoms would probably disappear even if they took nothing. Yet since this is the only medication we have we tend to emphasize the control that a person has over this disease.
If I could walk believe me I would and it's not for the sake of not trying hard enough. What started off as a limp progressed to the point where I required a cane then 2 canes. Eventually I had to turn to a Walker using a wheelchair to maintain what little strength I had remaining during outings or the like. Did I quit absolutely not did I give in no damn way yet when the disease decides to strike I don't care how positive you are you will fall. If you are capable of maintaining your positive attitude once you have fallen great it will only make things easier for you and those around you but don't for one second think that you can alter the course of this disease by your positive outlook because quite frankly you can't, I know because I've lived it.
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