Thursday, May 28, 2009

Thursday, May 28, 2009

After a certain amount of time you get to the point where you think you know just about everything about this disease and then out of the blue you receive an e-mail about something you never knew.
Yesterday May 27th 2009 was "World MS Day."

I never even knew such a thing existed, there's a short film on the following link which shows how MS has 1000 faces, worth looking at if you can spare the time.

Have a great day!

Friday, May 22, 2009

Friday, May 22, 2009

Haven't written in some time nothing new on the MS front apart from a scheduled appointment with my neurologist. I read an article about plasma paresis being utilized to treat progressive multiple sclerosis and the results appear positive. He will probably shrug his shoulders and give me that empty look, we will go over current treatments for asymptomatic symptoms and then move on to schedule another appointment.

Today I had another evaluation regarding the restraints used in our vehicle, they don't meet the crash test requirements and work needs to be done on my wheelchair. Unfortunately it was one of those meetings where there was a lot of talking but little substance, my chair still needs modification it seems the only thing we accomplished in two hours was to determine the type of modification best suited for my application.
I hope I don't have too many of these to go to before they actually complete the work, funniest part was when the ergo therapist mentioned the Québec government may ask for a road test? I've been driving the Van now for close to a year at driving test to see how I could handle the controls or the vehicle seems a tad redundant yet again we must remember it is Québec. I once had an extension that was to be used for the instructor in providing courses on how to utilize the gas/brake handle, I looked yet I think I discarded it.

Both television sets I had purchased were returned to the store for credit as I did not see the need to have one in our bedroom, I don't watch a lot of television and would rather listen to the radio so back they went, no problems returning any of them which was nice yet you have to wonder if there's a higher power at work here.
My computer monitor failed plain and simple all it returned was a black screen. A visit to Best Buy salted that problem I now have a brand-new 22 inch monitor. Next day my DVD RW/CD writer failed as well, another trip to Best Buy, today is the first day I'm up and running since last week. On another note if you rely on software program such as Nero to backup your files try restoring one of your previous backups just to make sure. Mine have never worked and rebuilding the directories took a lot of time. If someone asks if you should back up your information on DVD/an external drive/or additional internal drive the answer is Yes Yes And Yes.

All our photos and important information were recovered the only casualties were e-mails. So if you sent me something important chances are you'll contact me again or it wasn't that important in the first place.

PS: did I mention how nice it was to have my spouse back from her training in Toronto? Kind of makes life
worth living.

Enjoy the weekend

Thursday, May 14, 2009

Thursday, May 14, 2009

This evening Denise returns from her two-week course in Toronto! I survived which is actually pretty amazing everything considered. I received help in the morning to get out of bed and in the evening to get into bed one morning I even called on a neighbor who was kind enough to lend me a hand for a few minutes. Normally my usual schedule is in bed at 10 PM and up at 6:30 AM to have a coffee, breakfast and spend some time with Denise before she leaves for work. When you must depend on others you must abide by their schedule and yours takes a backseat, on some evenings I was in bed at 8:45 PM and for the morning the worst-case scenario was getting up at 10:30 AM now that's over 12 hours in bed and quite frankly it drove me nuts which is when I called on my neighbor.

The two weeks were quite interesting and fairly expensive in that we had purchased a ViewSonic television set for the bedroom prior to Denise leaving so if I happened to be in bed early I'd have something to watch. Well there were problems with the set and although I could not return it as Denise had paid for it with her credit card I could not see myself spending two weeks without something to do especially if I was to spend 12 hours in bed. So off I went and purchased a Panasonic 26 inch flatscreen LCD television which is very nice however I wonder how much use it will get upon her return, we may just end up bringing both of them back.
On the Thursday my computer screen went black, nothing to do but make another trip this time to Best Buy where I purchased a 22 inch Samsung flatscreen blah blah blah.

I was lucky to have the Van it made traveling to the mall back and forth quite easy. One day I swear I must've scared a lady right out of her mind, she honked her horn at me since I was taking up more than one handicapped parking space leaving what I thought was needed to deploy the ramp located on the side of the vehicle. Even though it was tight she decided there was enough room to park beside the van. She parked rather abruptly looking at me as if to say "what the hell is he doing taking two spaces."
I yelled at her from the top of my lungs over and over again and it's only when she noticed the ramp was being deployed onto her vehicle did she jump into action and get the hell out of the parking sot. It was quite funny actually the look on her face was sheer terror and panic.
The ramp has a feature which causes it to retract should it come into contact with an object, it would have been interesting to see how much damage would have been inflicted on her vehicle before the ramp went into reverse, unfortunately I will have to wait until another time before finding out. If you have a disabled parking sticker and who doesn't these days be careful if you're parking beside a Van as there may be a reason why it's taking up more than the normal allotted space. Oddly enough most handicapped parking spaces are meant for people with mobility? There are not that many wide enough to accept a Van with a ramp. Other than that no problems with the van, things went rather well attended our MS luncheon and went to eat at our local restaurant. The waitress at our local restaurant was somewhat surprised when I showed up alone.

I'd like to thank my neighbors who provided much-needed support in terms of making sure I was fine and even inviting me on several occasions to share dinner with them. Something that was definitely not necessary yet certainly appreciated. Tanks also to Guy who called to see if I wanted a coffee, not a big thing you may say yet when your alone having someone come over with a coffee or heaven forbid inviting you out for one makes the time go by quickly not to mention spending less time in isolation with good company. In fact the isolation and lack of contact with others was definitely the most difficult aspect of the two weeks she was away.

If I were to total the number of calls received apart from those from my spouse I'd say I received 3 to 4 calls, not many over a two-week period.

All in all it was an experience I learned in the process my limitations and was able to appreciate the countless number of things Denise does for me on a daily basis which Iunfortunately had taken for granted.

Friday, May 8, 2009

Friday, May 8, 2009

We had our monthly MS luncheon today, the only difference was that I took the van and drove it to and from which is something I normally don't do yet since Denise is a way I've been driving more than I've had in the past.

Things are going well however I'm amazed at how quickly two weeks vacation time can fly by yet when you're waiting for someone the time tends to stand still. I'm getting some support from the local CLSC which is a help and a joke at the same time.
They come around 9 PM to help me into bed and return next morning at 9:30 AM or even 10 AM to assist me out of bed. Jesus I was up at five this morning watching television I'm not used to spending 12 hours in bed. All in all I shouldn't complain since the help is there it just doesn't coincide with my schedule LOL
I received one call since Denise has left for her training course and that call came from my mother-in-law I would've never guessed in 1 million years yet she is the one who called to see if I needed any help? You have to understand that she is 85 years old and has a hard time managing a few steps without the use of or Walker.

End result I ended up going to Laura Secord and buying her a box of chocolates for Mother's Day which I will deliver sometime Sunday. Sometimes people you never dreamt of surprise you.

I'm in survival mode and will not post unless something major happens well not to major then I wouldn't be able to post would I?

Tuesday, May 5, 2009

Tuesday, May 5, 2009

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!

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!

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.

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