Most scientists agree that multiple sclerosis is a multifactorial disease. Everything from the environment, place of origin, having a predisposition to the disease, diet, vitamin D, including a unique genetic code have been proposed as a possible trigger the onset of MS.
If everyone agrees with this hypothesis why does it appears so difficult for the college of doctors and medicine to accept the possibility this disease may involve more than the central nervous system. It would seem logical to implicate professionals specializing in all hypothesis brought forth so that they could lend their expertise. Unfortunately It appears the reins of power are held by neurologists who for the most part appear unwilling to accept opinions from anyone regarding this disease, you almost get the sense that they enjoy the control the power they can exercise over a targeted patient group. From my perspective their emphasis for the most part appears centered on reducing the number of exacerbations a patient with MS will experience. Once the patient's disease progresses to the point where they are considered secondary progressive or if heaven forbid they are primary progressive casualties then treatment is generally limited to asymptomatic treatment which is about all they can offer. Pharmaceutical firms offer little to treat secondary progressive or primary progressive MS, a good portion of this population quite often cannot complete the necessary tasks to participate in a trial. Wouldn't it be a good idea to have a different set of tasks for those of us with secondary progressive or primary progressive MS and not to be simply written off once we have reached this threshold.
Isn't one of the first things you do when you receive a doctorate is to swear allegiance to uphold the Hippocratic oath? Given what medicine is today with so many specialists does it mean the oath applies to a portion of a patient's anatomy more specifically if you are a neurologist does the oath apply only to the central nervous system of that patient or is it all encompassing? If it is all encompassing as I suspect then wouldn't withholding treatment for an obvious abnormality or deficiency constitute a violation of this oath ?
Wouldn't isolating a specific group identifying them and preventing them from identifying the need for treatment constitute discrimination?
In the case of the liberation treatment proposed by Dr. Zamboni is it not possible that this is but one of the multifactorial conditions required in the development of MS? More importantly, can the patient obtain a benefit from correcting a malformation or stenosis?
From my experience it appears very few who have had the procedure have not noted some type of benefit thus facilitating their activities of daily living, isn't that what it's all about? My understanding is five locations in the United States will soon be providing this treatment, a few locations in Canada can be found yet one needs to do extensive research to uncover their locations. Why the secrecy, people suffering from kidney failure have this procedure done routinely it really is not that big of a deal, certainly there are risks every medical procedure carries risks therefore it becomes a risk benefit ratio and so far the benefits appear to far outweigh the risks involved.
I'm 53 and I doubt I will ever see the results from this study, I don't mean what we are doing now which is basically repeating what has been already been proven from the study in Buffalo and Georgetown no I mean results from an actual double blinded study.
We are already questioning the ethical issues surrounding the involvement of patients taking a placebo while participating on a trial, can you imagine if this trial involves surgery of any kind. Realistically I cannot see this happening at least not in Canada, what we will do is follow in other countries footsteps. Hey let's follow Australia, Italy and a number of other countries where this procedure is fully funded and regarded as a totally separate issue from MS, it's a vascular condition that when corrected just so happens to relieve MS symptoms.
A patient suffering from kidney failure is usually followed by a urologist, a vascular surgeon, a radiologist to name a few and this is a disease we can identify and treat why not implicate all of our resources for something we do not understand, it just doesn't make any sense to me whatsoever. I'm surprised that no lawyer has jumped on this to start a class-action lawsuit on the basis of discrimination, it may happen in the future and while unfortunate it may be the only means to get this issue resolved once and for all.
I will continue searching and if I come up empty-handed I may file a claim with the human rights commission, providing them with a lengthy petition would certainly not pose great difficulty.
And that's my two cents!
Thursday, July 15, 2010
Tuesday, July 6, 2010
Depression Caused by Brain Atrophy in Multiple Sclerosis Patients
Received an article this morning which had me thinking, are the people who conduct these studies real? Seems to me they're missing the point, I certainly hope they did not spend thousands of our tax dollars in order to conduct this study.
Perhaps it would have been a novel approach to speak with people who have MS to find out the causes of depression.
You would think losing one's ability to walk, the constant numbing and tingling of extremities, the spasms, optic neuritis, incontinence could possibly contribute to cause depression?
I would think depression would be very likely to occur given these conditions. For some it is quite possible depression begins the day they receive their diagnosis.
Come on folks, and this is for you scientists, please focus on the actual issue here the cause of MS and not some research which in my opinion provides little value.
You certainly don't require a PhD to understand that if your brain atrophies a host of cognitive issues may arise yet suggesting the atrophy causes depression in MS patients is akin tol putting the carriage in front of the horse don't you think?
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Perhaps it would have been a novel approach to speak with people who have MS to find out the causes of depression.
You would think losing one's ability to walk, the constant numbing and tingling of extremities, the spasms, optic neuritis, incontinence could possibly contribute to cause depression?
I would think depression would be very likely to occur given these conditions. For some it is quite possible depression begins the day they receive their diagnosis.
Come on folks, and this is for you scientists, please focus on the actual issue here the cause of MS and not some research which in my opinion provides little value.
You certainly don't require a PhD to understand that if your brain atrophies a host of cognitive issues may arise yet suggesting the atrophy causes depression in MS patients is akin tol putting the carriage in front of the horse don't you think?
You can read the complete article by subscribing to
To subscribe to the auto-immune list send an E-mail to
LISTSERV@COMMUNITY.LSOFT.COM
In the body of the E-mail type
SUBscribe auto-immune "your name"
Without the quotes.
No text is required in the Subject area.
Sunday, June 6, 2010
I survived my week in respite care!
Respite care,
I survived my first experience in a respite care facility, all in all it wasn't a bad experience yet nothing comes close to the conveniences of home.
If you're curious here is a link to the facility I stayed at.
http://www.allseniorscare.com/node/4
A total of four buildings make up this care facility the other buildings are almost identical in construction and layout consisting of six floors. I was on the fourth floor West Wing which is normally reserved for people suffering from dementia or Alzheimer's, normally they would've provided me with a room in the East wing reserved for people with mobility impairments however it was filled to capacity I was in no position to argue quite satisfied just to have a place to stay.
The room was adequate yet very sparse there is no luxury here, one single bed, a dresser a small nightstand that is it there is no television or telephone. If a resident would like a television it's bring your own and contact the cable company to hook you up before your arrival. Same goes with the phone it's bring your own yet they will supply and activate the phone line for $35. I was fortunate in that the phone line in my room was activated yet connecting to the Internet using dial-up is archaic and certainly not dependable yet it was better than nothing. Had it not been for my computer I would have gone senile for certain then they could have kept me for good reason.
This respite facility is meant for temporary stays with a maximum duration of 21 days. This rule does not appear to be cast in stone as several people have been there for many months waiting for an opening in a permanent residence.
The food was not bad considering it is not "a la carte." You have no choice with the meals except for breakfast where they have a selection of cereals, toast jams and fruits. Lunch and dinner are fixed pre-planned and for the most part I was quite satisfied with the portion size and quality. There is only one meal that I really didn't enjoy which consisted of a salmon baked pie.
Things they should tell you prior to your arrival are things like the television and telephone requirements mentioned above, they provide free washing service for your clothes but you have to provide your own soap which is considered part of your toiletries. I found the employees receptive and ready to please and meet your needs, the day shift employees were outstanding yet come the evening shift the attitude of the entire floor patients including staff changed quite noticeably. It seemed as if their primary goal after serving dinner was to quickly tend to everyone's needs in order to put the patient's to bed. Later in the evening I could usually hear them laugh as they gathered in the kitchen just opposite my room. It wasn't the same as the day shift who truly enjoyed their work and that was quite apparent.
On the second evening it was very warm so I decided to go downstairs and exit the building for a bit just to get some fresh air. The elevator wouldn't respond to my pushing the button and no matter how many times I tried nothing happened until finally an attendant walked by and I asked her how to get downstairs.
My name and condition had obviously not made its way through the maze of paperwork and I was politely informed that it was not permitted for me to exit the building, when we checked the list to verify those people with this permission my name wasn't there. I smiled returned to my room thinking how is it possible for me to get upset with someone who is actually doing their job? The problem was fixed the next morning I was able to come and go as I please.
The highlight of my week had to be the visit I received from our friends who not only spent a few hours with me but also came in with a Tim Horton's in hand. Unfortunately I did not see that many visitors during my stay as a matter of fact other than my friends I do not believe anyone else received a visit which is truly heartbreaking.
As for the facilities specifically the washrooms in each room they are not I repeat they are not accessible for handicapped individuals. As you will see in the pictures provided the first morning when I sat in my chair in front of the mirror getting ready to shave the only thing I could see was the top of my head. The mirror is mounted very high and not even at an angle. There is a shower in each room however the sill is quite high there is no bench and finally the toilet is a standard toilet with a plastic booster seat and one grab bar mounted on the wall. This applies to all rooms on this floor which in my opinion is totally unacceptable. The only reason I can see the government giving this location accreditation is for the simple reason that they have one large room with a huge bathtub and a separate room with a totally accessible shower. This allows them to provide patients with a weekly bath or shower and this appears to meet the standards set forth by the government. A picture is worth 1000 words I'll let you decide.
My wife spent an enjoyable week with my daughter, son-in-law and our grandson which made it all worthwhile.
I survived my first experience in a respite care facility, all in all it wasn't a bad experience yet nothing comes close to the conveniences of home.
If you're curious here is a link to the facility I stayed at.
http://www.allseniorscare.com/node/4
A total of four buildings make up this care facility the other buildings are almost identical in construction and layout consisting of six floors. I was on the fourth floor West Wing which is normally reserved for people suffering from dementia or Alzheimer's, normally they would've provided me with a room in the East wing reserved for people with mobility impairments however it was filled to capacity I was in no position to argue quite satisfied just to have a place to stay.
The room was adequate yet very sparse there is no luxury here, one single bed, a dresser a small nightstand that is it there is no television or telephone. If a resident would like a television it's bring your own and contact the cable company to hook you up before your arrival. Same goes with the phone it's bring your own yet they will supply and activate the phone line for $35. I was fortunate in that the phone line in my room was activated yet connecting to the Internet using dial-up is archaic and certainly not dependable yet it was better than nothing. Had it not been for my computer I would have gone senile for certain then they could have kept me for good reason.
This respite facility is meant for temporary stays with a maximum duration of 21 days. This rule does not appear to be cast in stone as several people have been there for many months waiting for an opening in a permanent residence.
The food was not bad considering it is not "a la carte." You have no choice with the meals except for breakfast where they have a selection of cereals, toast jams and fruits. Lunch and dinner are fixed pre-planned and for the most part I was quite satisfied with the portion size and quality. There is only one meal that I really didn't enjoy which consisted of a salmon baked pie.
Things they should tell you prior to your arrival are things like the television and telephone requirements mentioned above, they provide free washing service for your clothes but you have to provide your own soap which is considered part of your toiletries. I found the employees receptive and ready to please and meet your needs, the day shift employees were outstanding yet come the evening shift the attitude of the entire floor patients including staff changed quite noticeably. It seemed as if their primary goal after serving dinner was to quickly tend to everyone's needs in order to put the patient's to bed. Later in the evening I could usually hear them laugh as they gathered in the kitchen just opposite my room. It wasn't the same as the day shift who truly enjoyed their work and that was quite apparent.
On the second evening it was very warm so I decided to go downstairs and exit the building for a bit just to get some fresh air. The elevator wouldn't respond to my pushing the button and no matter how many times I tried nothing happened until finally an attendant walked by and I asked her how to get downstairs.
My name and condition had obviously not made its way through the maze of paperwork and I was politely informed that it was not permitted for me to exit the building, when we checked the list to verify those people with this permission my name wasn't there. I smiled returned to my room thinking how is it possible for me to get upset with someone who is actually doing their job? The problem was fixed the next morning I was able to come and go as I please.
The highlight of my week had to be the visit I received from our friends who not only spent a few hours with me but also came in with a Tim Horton's in hand. Unfortunately I did not see that many visitors during my stay as a matter of fact other than my friends I do not believe anyone else received a visit which is truly heartbreaking.
As for the facilities specifically the washrooms in each room they are not I repeat they are not accessible for handicapped individuals. As you will see in the pictures provided the first morning when I sat in my chair in front of the mirror getting ready to shave the only thing I could see was the top of my head. The mirror is mounted very high and not even at an angle. There is a shower in each room however the sill is quite high there is no bench and finally the toilet is a standard toilet with a plastic booster seat and one grab bar mounted on the wall. This applies to all rooms on this floor which in my opinion is totally unacceptable. The only reason I can see the government giving this location accreditation is for the simple reason that they have one large room with a huge bathtub and a separate room with a totally accessible shower. This allows them to provide patients with a weekly bath or shower and this appears to meet the standards set forth by the government. A picture is worth 1000 words I'll let you decide.
My wife spent an enjoyable week with my daughter, son-in-law and our grandson which made it all worthwhile.
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