I have not written this past week because quite frankly I'm tired, nothing special or change to report other than I've spent a few nights tossing and turning making day times difficult.
Every morning I get up at the same time my spouse does as I require her assistance to get ready, once I'm sitting in my chair that is where I remain for the day. On some days I'd love to be able to get back to bed for a few hours yet I am unable to lift my feet onto the bed so it's an impossibility, luckily my chair has a tilt function which allows me to tilt back far enough it resembles a La-Z-Boy.
The arrangements for our trip to Vegas in September are finalized, that alone will provide me with a break. You wouldn't believe the number of things required in order to make my trip enjoyable, certainly not as much preparation compared to Christopher Reeves yet there are quite a few things which I cannot leave to chance. We were extremely fortunate on one of our trips south to have a crew whom had just taken care of Mr. Reeves on a previous flight. They went above and beyond to make our flight enjoyable, my wife and I were treated like royalty the company I'm speaking of is "Sunquest" I made it a point writing to the company president I was pleasantly surprised to receive a reply.
On a trip like the one we will take in September everything depends on our preparation before departure, once the plane leaves it's too late to make changes. Our seats are 1A and 1B, this way I can take my manual chair aboard the aircraft grab a hold of someones arm to stand turn and sit. This means we travel business class and while sitting in the front makes my life and the crews much easier Air Canada does not offer any type of discount or incentives for disabled passengers. On one hand it's unfortunate compared to Via Canada who with a "disability travel card" automatically upgrade you to first class in addition your spouse or person accompanying you travels free of charge.
If you do not have your disability travel card and would like information on how to obtain one send me a note with your e-mail and I'll provide the details.
Getting back to our trip to Vegas. Once the airline and seats are booked I need to make sure the hotel has rooms for the handicapped it's quite enlightening to see what some establishments consider adapted. On one of our trips actually to Québec city we rented a room that was totally unappropriate yet according to them it had been retrofitted. For one thing the toilet was a regular toilet not a raised one as required and in terms of support or grab bars they had one mounted on the back wall which served no purpose whatsoever. There were a few grab bars in the bath tub yet you had to be able to get into it in order to use them.
I need a room with a wheelchair accessible shower, a raised toilet, an opening under the sink to make it accessible and those are only a few things I can think of offhand. The shows we see must have accessible seating which seems obvious yet if you do not ask you may be unpleasantly surprised.
Using my manual wheelchair for the travel portion of the trip I arrange to have an electric wheelchair at our destination usually waiting at the bell desk upon our arrival. It costs a bit yet you don't have the hassle of dealing with a potential breakdown i.e. flat tire, if something ever happened you simply pick up the phone it's their problem. Almost forgot about getting to and from the airport in addition to any other travel, accessible transportation is a must not a would be nice to have.
One last thing about the trip and it's probably one of the most important and that is if you can not walk you cannot use the facilities, now you have two choices you can either withhold fluid intake for several hours before and during the flight and that doesn't mean you will not necessarily have the urge to go. The second option and the one that I use is a catheter, not a folley catheter although they are part of our medical suitcase along with antibiotics should I develop a UTI during the trip.
What I use is a condom catheter with a leg bag, it's not the most comfortable thing yet it takes care of the necessity to use the facilities.
On that note have a great afternoon.
Tuesday, June 23, 2009
Thursday, June 18, 2009
Are They Getting Close ?
Genes Behind Multiple Sclerosis Identified
An international team of scientists have discovered two genetic variants that could increase the risk of multiple sclerosis (MS). The genes could also reveal links to other autoimmune diseases.
The study was published 15 June in the prestigious scientific journal Nature Genetics.
Professor Matthew Brown, from The University of Queensland's Diamantina Institute for Cancer, Immunology and Metabolic Medicine, said a gene identified by the research consortium could lead to simple preventative treatments for MS.
“One of the two genes is most likely a gene which controls metabolism of vitamin D,” Professor Brown said.
“Previous research has already shown that levels of vitamin D influence the risk of people contracting MS.
“For example, people have a higher risk the further they live from the Equator.
“This instantly suggests that a possible preventative treatment for MS is vitamin D.
“This may lead to new types of therapeutics down the track.”
Associate Professor Simon Broadley, senior staff specialist in neurology at the Gold Coast Hospital and Acting Head of Medicine at Griffith University, said the gradual physical deterioration associated with MS severely limits social and employment opportunities for those affected.
“The frustration of watching young people lose their independence because of this disease, is a compelling enough reason for my involvement in research that offers new hope,” Dr Broadley said.
“I am very optimistic that this advance in our understanding of the genes involved in MS will eventually lead to more effective treatments. The next step in the research is to pinpoint the exact genetic mutations and the functional differences they are responsible for.”
Together with over 40 investigators from 11 institutions within the Australian and New Zealand Multiple Sclerosis Genetics (ANZgene) consortium, the team investigated genes that increase a person's risk of developing MS.
MS affects some 2.5 million people worldwide and almost 20,000 in Australia. It is a devastating autoimmune disease as it occurs at the prime of life and mostly in young Caucasian women.
The three-year study involved scanning the DNA of 1,618 people with MS and 3,413 people without MS.
Professor Brown's group was instrumental in performing the genome-wide screening process which allows the entire human genome to be scanned in broad brushstrokes.
Researchers were looking at genetic landmarks in the genome called SNPs and then progressively narrowing down their search to individual genes.
After comparing over 300,000 SNPs, two genetic regions on chromosome 12 and 20 showed significant differences.
Changes in the region on chromosome 12 were discovered to coincide with an increased susceptibility to type I diabetes and rheumatoid arthritis
, whereas the region identified on chromosome 20 also coincides with susceptibility to rheumatoid arthritis and Graves' disease.
In addition, chromosome 12 encodes the enzyme that converts vitamin D, which we obtain mainly through sunlight, but also our diet, into an active form that our body can use.
“It is the first such large scale human genetics project done completely in Australasia and so is a real milestone for the Australian scientific community,” Professor Brown said.
He said it also highlighted the potential of genetics research to make really major breakthroughs in understanding what causes common diseases like MS.
The research was coordinated by Professor Trevor Kilpatrick, Director of the Centre for Neuroscience at the University of Melbourne, and Dr Justin Rubio, Senior Research Fellow of the Florey Neuroscience Institutes based in Melbourne.
The research has been funded in part by MS Research Australia, The National Health & Medical Research Council and the Australian Research Council.
Source-Medindia
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An international team of scientists have discovered two genetic variants that could increase the risk of multiple sclerosis (MS). The genes could also reveal links to other autoimmune diseases.
The study was published 15 June in the prestigious scientific journal Nature Genetics.
Professor Matthew Brown, from The University of Queensland's Diamantina Institute for Cancer, Immunology and Metabolic Medicine, said a gene identified by the research consortium could lead to simple preventative treatments for MS.
“One of the two genes is most likely a gene which controls metabolism of vitamin D,” Professor Brown said.
“Previous research has already shown that levels of vitamin D influence the risk of people contracting MS.
“For example, people have a higher risk the further they live from the Equator.
“This instantly suggests that a possible preventative treatment for MS is vitamin D.
“This may lead to new types of therapeutics down the track.”
Associate Professor Simon Broadley, senior staff specialist in neurology at the Gold Coast Hospital and Acting Head of Medicine at Griffith University, said the gradual physical deterioration associated with MS severely limits social and employment opportunities for those affected.
“The frustration of watching young people lose their independence because of this disease, is a compelling enough reason for my involvement in research that offers new hope,” Dr Broadley said.
“I am very optimistic that this advance in our understanding of the genes involved in MS will eventually lead to more effective treatments. The next step in the research is to pinpoint the exact genetic mutations and the functional differences they are responsible for.”
Together with over 40 investigators from 11 institutions within the Australian and New Zealand Multiple Sclerosis Genetics (ANZgene) consortium, the team investigated genes that increase a person's risk of developing MS.
MS affects some 2.5 million people worldwide and almost 20,000 in Australia. It is a devastating autoimmune disease as it occurs at the prime of life and mostly in young Caucasian women.
The three-year study involved scanning the DNA of 1,618 people with MS and 3,413 people without MS.
Professor Brown's group was instrumental in performing the genome-wide screening process which allows the entire human genome to be scanned in broad brushstrokes.
Researchers were looking at genetic landmarks in the genome called SNPs and then progressively narrowing down their search to individual genes.
After comparing over 300,000 SNPs, two genetic regions on chromosome 12 and 20 showed significant differences.
Changes in the region on chromosome 12 were discovered to coincide with an increased susceptibility to type I diabetes and rheumatoid arthritis
, whereas the region identified on chromosome 20 also coincides with susceptibility to rheumatoid arthritis and Graves' disease.
In addition, chromosome 12 encodes the enzyme that converts vitamin D, which we obtain mainly through sunlight, but also our diet, into an active form that our body can use.
“It is the first such large scale human genetics project done completely in Australasia and so is a real milestone for the Australian scientific community,” Professor Brown said.
He said it also highlighted the potential of genetics research to make really major breakthroughs in understanding what causes common diseases like MS.
The research was coordinated by Professor Trevor Kilpatrick, Director of the Centre for Neuroscience at the University of Melbourne, and Dr Justin Rubio, Senior Research Fellow of the Florey Neuroscience Institutes based in Melbourne.
The research has been funded in part by MS Research Australia, The National Health & Medical Research Council and the Australian Research Council.
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Tuesday, June 16, 2009
Tuesday, June 16, 2009
Multiple Sclerosis is a real pain in the well you decide. It attacks the central nervous system which is similar to saying the air traffic control at the airport is amuck, all staff have left the building.
No one can predict what will happen yet undoubtedly something will that's a certainty. It's similar with multiple sclerosis in my case other than the so-called foreseeable problems caused by MS some of them tend to catch you offguard like recently people have started noticing that my eyes tend to drift and not necessarily point in the right direction, cross eyed is the nonmedical term. The muscles which control my right eye are weak apparently affected by MS. If it becomes bothersome I've been told it may be corrected surgically, currently it isn't that much of a big deal and I can manage quite easily thank you. The biggest concern is that is or can be noticeable I suspect on some days more than others.
My M.D. came over for her visit yesterday the good news is the medication I'm taking to control my blood pressure is working perfectly. The bad news, my blood sugar is creeping up slowly. I'm not at the point where medications are necessary yet I have to be conscious and careful in order to prevent the escalation of this chronic disease.
I did some reading regarding diabetes, it's great to know that weight loss and exercise are the two most important things a person can do to lessen the progression and potentially reverse this disease, wonderful news considering I am wheelchair-bound. My daily exercise routine consists of struggling to get out of bed in the morning followed by moving a joystick to control my motorized wheelchair.
Additionally one of the side effects of a drug I am taking is weight gain. Go figure I'm not certain what I'm supposed to do here.
My daily regiment currently consists of one can of Glucerna in the morning usually after a coffee with 4% cream "a thing of the past" for lunch I'll have a Lean Cuisine and a normal dinner when my spouse returns from work. Usually most evenings I will have one beer although I must admit I've had two today and frankly I don't give a damn. Now there are things which I can eliminate or reduce which would definitely help, weekends would probably be the time where I can affect the most change. We will see what my efforts translate into over the course of the next three months that is until the next visit from the vampire.
Quite frankly I'm tired and sick of the whole thing.
No one can predict what will happen yet undoubtedly something will that's a certainty. It's similar with multiple sclerosis in my case other than the so-called foreseeable problems caused by MS some of them tend to catch you offguard like recently people have started noticing that my eyes tend to drift and not necessarily point in the right direction, cross eyed is the nonmedical term. The muscles which control my right eye are weak apparently affected by MS. If it becomes bothersome I've been told it may be corrected surgically, currently it isn't that much of a big deal and I can manage quite easily thank you. The biggest concern is that is or can be noticeable I suspect on some days more than others.
My M.D. came over for her visit yesterday the good news is the medication I'm taking to control my blood pressure is working perfectly. The bad news, my blood sugar is creeping up slowly. I'm not at the point where medications are necessary yet I have to be conscious and careful in order to prevent the escalation of this chronic disease.
I did some reading regarding diabetes, it's great to know that weight loss and exercise are the two most important things a person can do to lessen the progression and potentially reverse this disease, wonderful news considering I am wheelchair-bound. My daily exercise routine consists of struggling to get out of bed in the morning followed by moving a joystick to control my motorized wheelchair.
Additionally one of the side effects of a drug I am taking is weight gain. Go figure I'm not certain what I'm supposed to do here.
My daily regiment currently consists of one can of Glucerna in the morning usually after a coffee with 4% cream "a thing of the past" for lunch I'll have a Lean Cuisine and a normal dinner when my spouse returns from work. Usually most evenings I will have one beer although I must admit I've had two today and frankly I don't give a damn. Now there are things which I can eliminate or reduce which would definitely help, weekends would probably be the time where I can affect the most change. We will see what my efforts translate into over the course of the next three months that is until the next visit from the vampire.
Quite frankly I'm tired and sick of the whole thing.
Monday, June 15, 2009
Monday, June 15, 2009
There are vast amounts of information regarding multiple sclerosis on the web today, the problem is deciphering the good from the bad. I find articles from the following to be informative and factual. Subscribing is free which is why I have copied the complete article, you have the subscribing information at the end of the article.
I really believe they are on to something with vitamin D, it's probably not the sole factor yet it may play an important part in the development of the disease.
Medscape Conference Coverage, based on selected sessions at the:
Consortium of Multiple Sclerosis Centers (CMSC) 23rd Annual Meeting
This coverage is not sanctioned by, nor a part of, the Consortium of Multiple Sclerosis Centers.
From Medscape Medical News
Vitamin-D Levels Inversely Correlated With Disability and Disease Progression in Multiple Sclerosis
Emma Hitt, PhD
June 2, 2009 (Atlanta, Georgia) — Vitamin-D deficiency may be associated with a higher disability score and increased rate of disease progression for patients with multiple sclerosis (MS), new research findings suggest.
Allison Drake, a researcher with the Jacobs Neurological Institute at the State University of New York (SUNY) Buffalo School of Medicine and Biomedical Sciences, presented the findings here at the Consortium of Multiple Sclerosis Centers (CMSC) 23rd Annual Meeting.
Vitamin D has been implicated as a risk factor for MS, the investigators note. In addition, preclinical in vivo studies have demonstrated that vitamin D may inhibit experimental autoimmune encephalomyelitis and prevent disease progression.
In the current analysis, the researchers collected data from 349 patients with MS included in the New York State Multiple Sclerosis Consortium (NYSMSC). Patients' mean age was 50.5 years. In addition to the Expanded Disability Status Scale (EDSS), the Multiple Sclerosis Severity Scale (MSSS) was used to measure the rate of disease progression. A patient was considered to be deficient in vitamin D if serum levels were < 20 ng/mL.
Of the patients evaluated, 21.8% of patients were deemed deficient in vitamin D. "It is important to note that the majority of patients had less than sufficient levels of serum vitamin D," said Ms. Drake. "Even during 'peak months,' few patients were able to reach sufficient levels. This observation was especially apparent in patients with severe disability," she said.
Linear regression analysis found that vitamin-D deficiency (P < 0.001) and MS disease subtype (P < 0.001) were the only factors that significantly predicted MSSS. Other factors evaluated were sex and age, and these did not show an effect.
"The results of this study are consistent with previous reports, including a population-based study, a case-control study, and longitudinal studies, demonstrating that serum vitamin-D levels are associated with MS," Ms. Drake told Medscape Neurology & Neurosurgery.
According to the researchers, vitamin-D levels may have a protective role in MS if levels are sufficient or a detrimental effect if levels are insufficient.
"This study raises the question of what's the chicken and what's the egg," said Stuart D. Cook, MD, a professor in the departmentofneurology and neuroscience at the University of Medicine and Dentistry, in Newark, New Jersey, who attended the presentation. "People with MS have heat sensitivity, or they may be disabled and less inclined to go outside, so they may have a decreased exposure to the sun and lower vitamin-D levels as a consequence of their disability."
Still, he pointed out, "This is not to invalidate the vitamin-D hypothesis — there is a lot of evidence saying that vitamin D is an important factor in MS susceptibility in general," he told Medscape Neurology & Neurosurgery.
According to Dr. Cook, there is a good rationale for activity of vitamin D in MS. "Vitamin D has multiple effects, including the fact that it can downregulate the immune response, which we think is important in MS; it can interact with the genes that predispose to MS, potentially upregulating or downregulating those genes," he said. "So there are a lot of potential mechanisms that could explain how vitamin D might work."
The study was supported by the 2008 Foundation of the Consortium of Multiple Sclerosis Centers Summer Research Scholar Program and EMD/Serono. Ms. Drake and Dr. Cook report no relevant funding disclosures.
The Consortium of Multiple Sclerosis Centers (CMSC) 23rd Annual Meeting and 2nd joint meeting of the American Committee for Treatment and Research in MS (ACTRIMS): Abstract P07. Presented May 29, 2009.
Authors and Disclosures
Journalist
Emma Hitt, PhD
Emma Hitt is a freelance editor and writer for Medscape.
Medscape Medical News © 2009 Medscape, LLC
Send press releases and comments to news@medscape.net.
===========================================
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http://community.lsoft.com/archives/AUTO-IMMUNE.html
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============================================
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I really believe they are on to something with vitamin D, it's probably not the sole factor yet it may play an important part in the development of the disease.
Medscape Conference Coverage, based on selected sessions at the:
Consortium of Multiple Sclerosis Centers (CMSC) 23rd Annual Meeting
This coverage is not sanctioned by, nor a part of, the Consortium of Multiple Sclerosis Centers.
From Medscape Medical News
Vitamin-D Levels Inversely Correlated With Disability and Disease Progression in Multiple Sclerosis
Emma Hitt, PhD
June 2, 2009 (Atlanta, Georgia) — Vitamin-D deficiency may be associated with a higher disability score and increased rate of disease progression for patients with multiple sclerosis (MS), new research findings suggest.
Allison Drake, a researcher with the Jacobs Neurological Institute at the State University of New York (SUNY) Buffalo School of Medicine and Biomedical Sciences, presented the findings here at the Consortium of Multiple Sclerosis Centers (CMSC) 23rd Annual Meeting.
Vitamin D has been implicated as a risk factor for MS, the investigators note. In addition, preclinical in vivo studies have demonstrated that vitamin D may inhibit experimental autoimmune encephalomyelitis and prevent disease progression.
In the current analysis, the researchers collected data from 349 patients with MS included in the New York State Multiple Sclerosis Consortium (NYSMSC). Patients' mean age was 50.5 years. In addition to the Expanded Disability Status Scale (EDSS), the Multiple Sclerosis Severity Scale (MSSS) was used to measure the rate of disease progression. A patient was considered to be deficient in vitamin D if serum levels were < 20 ng/mL.
Of the patients evaluated, 21.8% of patients were deemed deficient in vitamin D. "It is important to note that the majority of patients had less than sufficient levels of serum vitamin D," said Ms. Drake. "Even during 'peak months,' few patients were able to reach sufficient levels. This observation was especially apparent in patients with severe disability," she said.
Linear regression analysis found that vitamin-D deficiency (P < 0.001) and MS disease subtype (P < 0.001) were the only factors that significantly predicted MSSS. Other factors evaluated were sex and age, and these did not show an effect.
"The results of this study are consistent with previous reports, including a population-based study, a case-control study, and longitudinal studies, demonstrating that serum vitamin-D levels are associated with MS," Ms. Drake told Medscape Neurology & Neurosurgery.
According to the researchers, vitamin-D levels may have a protective role in MS if levels are sufficient or a detrimental effect if levels are insufficient.
"This study raises the question of what's the chicken and what's the egg," said Stuart D. Cook, MD, a professor in the departmentofneurology and neuroscience at the University of Medicine and Dentistry, in Newark, New Jersey, who attended the presentation. "People with MS have heat sensitivity, or they may be disabled and less inclined to go outside, so they may have a decreased exposure to the sun and lower vitamin-D levels as a consequence of their disability."
Still, he pointed out, "This is not to invalidate the vitamin-D hypothesis — there is a lot of evidence saying that vitamin D is an important factor in MS susceptibility in general," he told Medscape Neurology & Neurosurgery.
According to Dr. Cook, there is a good rationale for activity of vitamin D in MS. "Vitamin D has multiple effects, including the fact that it can downregulate the immune response, which we think is important in MS; it can interact with the genes that predispose to MS, potentially upregulating or downregulating those genes," he said. "So there are a lot of potential mechanisms that could explain how vitamin D might work."
The study was supported by the 2008 Foundation of the Consortium of Multiple Sclerosis Centers Summer Research Scholar Program and EMD/Serono. Ms. Drake and Dr. Cook report no relevant funding disclosures.
The Consortium of Multiple Sclerosis Centers (CMSC) 23rd Annual Meeting and 2nd joint meeting of the American Committee for Treatment and Research in MS (ACTRIMS): Abstract P07. Presented May 29, 2009.
Authors and Disclosures
Journalist
Emma Hitt, PhD
Emma Hitt is a freelance editor and writer for Medscape.
Medscape Medical News © 2009 Medscape, LLC
Send press releases and comments to news@medscape.net.
===========================================
Searching the archives is available at:
http://community.lsoft.com/archives/AUTO-IMMUNE.html
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Friday, June 12, 2009
Friday, June 12, 2009
I shouldn't have mentioned anything about my family physician, she's coming over to visit me on Monday. She's either reading my blog or I jinxed myself by speaking of our MDs. I consider myself very fortunate to have one of the few remaining family physicians who actually do house visits which you certainly don't hear about any longer.
We will probably review some of the results that came back from the hospital after my falls in the washroom and possibly the blood tests taken last week. She's nice professional yet unfortunately only two of her patients have MS so as I mentioned it's difficult for them to acquire the necessary knowledge to help with that condition. There is certainly no harm in monitoring and keeping an eye out for other things because having MS does not by any means make you immune to anything else.
My friend's brother was diagnosed with MS and had a really rough time only to be diagnosed with lung cancer several years later. He has since passed away but talk about bad luck, you would think one would be enough.
We will probably review some of the results that came back from the hospital after my falls in the washroom and possibly the blood tests taken last week. She's nice professional yet unfortunately only two of her patients have MS so as I mentioned it's difficult for them to acquire the necessary knowledge to help with that condition. There is certainly no harm in monitoring and keeping an eye out for other things because having MS does not by any means make you immune to anything else.
My friend's brother was diagnosed with MS and had a really rough time only to be diagnosed with lung cancer several years later. He has since passed away but talk about bad luck, you would think one would be enough.
Wednesday, June 10, 2009
Wednesday, June 10, 2009
If multiple sclerosis is considered one of today's most common neurological diseases affecting young people can anyone explain to me why our regular MDs know so little about this condition? It seems every time you raise a problem or question regarding multiple sclerosis their hands go up in the air and your referred to a specialist.
That's one thing I simply don't understand.
PS: I love those little ads that appear on this blog stating that MS is not fatal, yeah right go tell that to someone who hasn't lost a number of friends to this disease. I guess you could say the person that got hit by a Mack truck didn't die from the collision but from a sudden cardiac arrest.
That's one thing I simply don't understand.
PS: I love those little ads that appear on this blog stating that MS is not fatal, yeah right go tell that to someone who hasn't lost a number of friends to this disease. I guess you could say the person that got hit by a Mack truck didn't die from the collision but from a sudden cardiac arrest.
Tuesday, June 9, 2009
Tuesday, June 9, 2009
The following story made me think, if it was me in this situation i.e. my life was threatened and dependent on receiving such medication. It's not like we're talking Victoria to Newfoundland here, I would simply rent an apartment proceed with a change of address and in three months receive a new provincial health card which covered the required medication. At most the apartment would cost six or $700 a month although I'm certain you could do much better and perhaps you could visit once in a while. Of course another option would be to wait until the provincial government approves this medication yet how long would you be willing to wait.
If your life was dependent on receiving this treatment would you be in agreement or am I out in left field, any thoughts?
If your life was dependent on receiving this treatment would you be in agreement or am I out in left field, any thoughts?
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