Friday, August 28, 2009

Friday, August 28, 2009

As I review my blog this afternoon contemplating whether I had anything of value to share I couldn't help but notice the advertisements which automatically appear on the side of my blog. You should be aware that I have little control regarding what is posted, they are simply advertisements which according to my understanding are based on information possibly contained in my blog i.e. if I wrote about a subject chances are the advertisements would reflect the subject.
I may lose the blog for saying this yet without prejudice in my opinion the majority of the advertisements regarding cures or treatments are bogus, hocus-pocus cures at best. If finding a cure or treatment was so easy why would I choose to continue living with this disease, why would anyone? Am I so naïve to think that a cure would exist unknown to the medical community or as some conspiracy theory suggests they are simply withholding a cure for fear of losing their employment? Come on now let's get real.
Having lost a friend who participated in the bone marrow transplant study which appears quite similar to the stem cell procedure Ia assure you it is not as simple as it seems. In the bone marrow transplant study after harvesting bone marrow and irradiating all traces of MS the patient is given high doses of chemotherapy to the point where their immune system is literally destroyed. Then in the hopes of regenerating their immune system with no traces of MS the cleansed bone marrow is reintroduced intravenously. For my friend the chemotherapy drugs were so strong they affected his liver, he died as a result.
Diet while important has never been proven to have any impact on MS, acupuncture, bee sting therapy and a host of other so-called treatments have no scientific basis to prove their effectiveness. Since MS is so unpredictable it lends itself to a host of unproven cures or treatments, in some cases the success we attribute to one of these treatments may be due to a cause and effect not fully understood and potentially dangerous. Take the bee stings an example it is believed that stinging oneself with bees causes the body to produce an anti-venom if you will in this case a chemical that mimics a steroid.
The relief it provides is a byproduct far removed from the sting itself, medication such as Solu-Medrol or prednisone are available today if judged necessary by your physician and you don't have to rely on bees to achieve the same results.
I am pleased for those with MS who believe they can take hold of their situation and control the disease with no medical intervention, usually in their opinion a positive attitude is all one really needs. The most common quote is "I have MS, MS does not have me." That's very well and dandy yet when the disease strikes I don't care how positive you are you will succumb to its power the humiliation and everything else this disease represents, stay positive yet try to remain realistic.
My opinion only, yet feel free to share your comments. Have a great weekend

Thursday, August 27, 2009

Thanks to A and W

To everyone who took the time to enjoy a Teen Burger at A&W today a huge thanks for supporting our cause. Many thanks to A&W for caring and providing us with much-needed funds.

Difficult to beat that root beer along with those fries and that Burger!

Monday, August 24, 2009

Monday, August 24, 2009

Good Afternoon
Wanted to post this before I forget.
"Thursday is MS day at A&W" for every tean burger sold A&W will contribute one dollar for MS"
You must eat, might as well make it for a good cause.

Wednesday, August 19, 2009

Wednesday, August 19, 2009

Yesterday was a total waste of time. They did not have the belt I required not even certain if they had the correct hardware, after searching for several hours they came up empty-handed. Oh I had an appointment yet the mechanic was sick that day and instead of calling me to reschedule the appointment well they didn't hoping to come up with the proper devices to finally put this modification nightmare to rest. Unfortunately it will live for another day another appointment which I trust will yield more positive results.
As a personal rule I value a person's time, if I am unable to make an appointment it's a simple matter of making a phone call if they were that may be cannot meet their engagements I expect no less than the same respect I am expected to reciprocate.

I won't say anymore about this I'm frustrated enough as it is.

Monday, August 17, 2009

Friday, August 14, 2009

What a day, it began at 6 AM paratransit “STO” picked me up at 7:30 AM so I could have my manual wheelchair fitted with a different cushion.
Not having used the manual chair for quite some time, why bother when you can sit back and simply move a joystick to go where ever you please. The way I saw it, things are difficult enough as they are anything to make my life easier I will gladly accept and incorporate into my daily routine. Over the last several years my manual wheelchair was only utilized occasionally usually at the airport to board the aircraft and go from the airport to the hotel where I usually end up carrying pieces of luggage on my lap while my spouse pushed me along, upon arrival I normally have a rental electric chair waiting for me at the hotel. I prefer to rent one instead of taking my own there is less hassle with preparation i.e. removing batteries etc. and if I ever encounter problems during my trip it's the rental companies problem not mine.

Friday I used my arms all day to propel my chair onto then out of the bus to the clinic and back upon my return felt like my arms were ready to fall off. I'm not certain what tomorrow will be like yet I can almost guarantee the Advil or Tylenol won't be far away. I made a promise to myself that I would utilize my manual wheelchair on a more frequent basis to strengthen my arms in an attempt to regain some of the muscle mass which I have lost over the years. Not the easiest thing to do yet I don't have much of a choice I realized that by sitting back and doing nothing the old adage of use it or lose it really applies.

My seemingly endless journey of adaptations continues as the new cushion was provided and proved to be quite comfortable. Since most of the items in our condo are adapted for use with my electric wheelchair which is much higher than my manual one the next step in this seemingly endless journey of modifications is to elevate my manual chair to match the height of my electric chair. The main reason for the height being crucial are making my transfers from the chair to the shower seat or toilet facilities safer.
My sole intent was to pick up a cushion, I left with the cushion and another appointment to have the rear wheels lowered by 3 inches, the front wheels changed from 6 inch diameter to 8 inch wheels in addition to longer forks thereby raising the height of the chair.
Hopefully that will be the end of these modifications.

On Tuesday afternoon I will be visiting the mobility shop where they will replace the seat belt on my motorized wheelchair for one which has been crash tested, I'm telling you it just never seems to end.

Tuesday, August 11, 2009

The Beginning Of The End?

Public release date: 11-Aug-2009

McGill University
McGill/JGH researchers successfully reverse multiple sclerosis in animals
New immune-suppressing treatment forces the disease into remission in mice
A new experimental treatment for multiple sclerosis (MS) completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans, say researchers at the Jewish General Hospital Lady Davis Institute for Medical Research and McGill University in Montreal.
MS is an autoimmune disease in which the body's own immune response attacks the central nervous system, almost as if the body had become allergic to itself, leading to progressive physical and cognitive disability.
The new treatment, appropriately named GIFT15, puts MS into remission by suppressing the immune response. This means it might also be effective against other autoimmune disorders like Crohn's disease, lupus and arthritis, the researchers said, and could theoretically also control immune responses in organ transplant patients. Moreover, unlike earlier immune-supppressing therapies which rely on chemical pharamaceuticals, this approach is a personalized form of cellular therapy which utilizes the body's own cells to suppress immunity in a much more targeted way.
GIFT15 was discovered by a team led by Dr. Jacques Galipeau of the JGH Lady Davis Institute and McGill's Faculty of Medicine. The results were published August 9 in the prestigious journal Nature Medicine.
GIFT15 is composed of two proteins, GSM-CSF and interleukin-15, fused together artificially in the lab. Under normal circumstances, the individual proteins usually act to stimulate the immune system, but in their fused form, the equation reverses itself.
"You know those mythical animals that have the head of an eagle and the body of a lion? They're called chimeras. In a lyrical sense, that's what we've created," said Galipeau, a world-renowned expert in cell regeneration affiliated with the Segal Cancer Centre at the Jewish General and McGill's Centre for Translational Research. "GIFT15 is a new protein hormone composed of two distinct proteins, and when they're stuck together they lead to a completely unexpected biological effect."
This effect, explained Galipeau, converts B-cells -- a common form of white blood cell normally involved in immune response -- into powerful immune-suppressive cells. Unlike their better-known cousins, T-cells, naturally-occurring immune-suppressing B-cells are almost unknown in nature and the notion of using them to control immunity is very new.
"GIFT15 can take your normal, run-of-the-mill B-cells and convert them -- in a Superman or Jekyll -Hyde sort of way -- into these super-powerful B-regulatory cells," Galipeau explained. "We can do that in a petri dish. We took normal B-cells from mice, and sprinkled GIFT15 on them, which led to this Jekyll and Hyde effect.
"And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away."
MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment's efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.
"It's easy to collect B-cells from a patient," he added. "It's just like donating blood. We purify them in the lab, treat them with GIFT15 in a petri dish, and give them back to the patient. That's what we did in mice, and that's what we believe we could do in people. It would be very easy to take the next step, it's just a question of finding the financial resources and partnerships to make this a reality."

Thursday, August 6, 2009

Thursday, August 6, 2009

I may have mentioned this before yet based on what I experienced yesterday you'll pardon me if I mention it again. Personally one of the greatest challenges or difficulties in having multiple sclerosis is the isolation it inevitably brings on. Granted if you are working and mobile you may still experience some isolation on the part of your coworkers dependent on a large part of your limitations and whether they are a parent or not to others on the positive side you're still there in their face every day or at least in contact with them periodically you are part of the group therefore it is difficult for them to ignore you completely.

As the disease progresses you may reach a point where you are unable to work and find yourself confined to your living space. As a result your interaction with other people decreases and eventually you lose touch with most. When it comes to friends you no longer share those things which forged a common bond. If it's impossible for you to walk going camping is difficult to envision riding a bike is out of the question as are most activities you may have shared, I loved fishing yet lost that yearning when I could no longer hold the rod with my hands.
So you join your local MS chapter or a support group with the hope of meeting others, developing friendships basically filling the void which was created once you lost touch with those surrounding you, let's be frank chances are if MS affected you to the point where you have left work your friends outside of work as well as most family members have for the most part drifted long ago.

That's the route I chose to deal with the isolation support groups from our local MS chapter consisting of monthly get-togethers and biweekly sessions offered by another group of pofessionals providing various types of therapies.
It was very difficult for me to find anyone positive at these functions, the majority were living through tribulations in their relationships mostly due to their sickness and the changes this inflicted on their family members. Others simply have a difficult time with the disease itself so I found myself in a negative environment one that I could not support. My way of coping with the disease is to surround myself with positive people anyone negative I will purposely push away and not socialize wityh. In a nutshell that leaves very few persons, a select few which interact on a consistent basis. Unfortunately they also tend to be people who suffer from the same affliction yet who really cares they understand and know they need for interaction, getting out of the house, having a good time. Matter of fact I am shortening this entry having just received a call from a friend "with MS" who is going to eat at one of our local Pizza Hut's, I will join them in a matter of minutes.
You have to take advantage of those times when they become available to you if not you'll be spending a lot of time at home by yourself.

My intentions were not to write about this today yet my spouse met someone yesterday and during their conversation she casually asked them why they never stopped by to see me? Their reply, they didn't want to be a bother! Come on just because we are disabled does not mean we're stupid, you can call ahead to make certain we are home, if you receive a message from an answering machine leave a message don't simply hang up it is possible you know that the person requires more time to reach the phone.

That's my venting for the day, it's beautiful and sunny outside time to go join my friends for pizza.
Have a great day

Tuesday, August 4, 2009

Tuesday, August 4, 2009

Don't you just love those ads appearing on the side of this blog, I can't help but chuckle when I see something like "reverse the symptoms of MS."
If it was so easy who in their right mind would choose to live with this?
Another good one is treating MS naturally, you know the homeopathic way my opinion and mine only,please give me a break. There's a program that plays on the radio during the night I listen to quite often when I cannot sleep, it would not be fair to mention their names since they are not in a position to defend the claims they make.
Every disease or symptom is treatable using homeopathic remedies vitamins, supplements remedies for everything including emptying your wallet. Every product they endorse they appear to take on a daily basis not having done a tally I would estimate somewhere in the neighborhood of 50 different supplements.
Certainly I've taken and continue to take my share of vitamins and supplements that are supported in some way by scientific research such as vitamin D, Primrose Oil, Omega-3, Vitamin C yet that's about it anything else is prescription medication. I'm no scientist that is for certain yet doing a search using Google for quackery medical treatments homeopath comes up fairly often, makes me wonder?

Had a very good weekend no falls actually did the tourist thing in my own town Ottawa Ontario. Had breakfast with some friends then went to busker fest which was so popular it was impossible to see any of the acts, we went and had a real Polish hotdog sold by a street vendor you know the kind a real hotdog!
We then went to the local market and purchased all the vegetables and fruits we needed to last us of the week, I don't know why we don't go there more often a lot of the produce is grown locally and you can purchase broccoli at two-for-one dollar something you'll never see in the supermarket.

We then visited the Royal Canadian mint, at the end of the tour you have the opportunity of lifting a solid gold brick. Let me assure you it is fixed to a table with a chain beside the table stands a armed guard not that you could run away with the brick it weighs a ton. My wife lifted it I did not even attempt to do so I was satisfied just taking a glimpse at something so small worth close to $500,000

Without doubt that amount of money would be nice yet it's amazing how it loses its appeal when you realize you could do very little with it even if you had it. The most likely outcome would be keeping my wife home which would be primordial yet after that who knows, okay I'd be willing to give it a try.

Take good care

PS: the travel card I mentioned a few days ago is definitely worthwhile. Our visit to the mint should have cost us $20 we ended up paying just over $7.

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