The essence of someone
is held in the memories
and bound by love
always to remain.
People are eternal
if they are remembered with love.
R.I.P. Carol
Tuesday, May 31, 2011
Melted
If the sun and sky is dimmer it is because the light of my life went out! I will always love you!
To Carol:
I will always live with what I did and did not do. I am profoundly saddened by my inability to do all you needed. It was not from lack of concern, effort. or love. Our 38 years+ was WAY too short. You were the yin to my yang. I am left with a hole in my heart that cannot heal. Thanks for leaving part of you here with me in our six great children. They salve my wound.
Snow always melts!
To Carol:
I will always live with what I did and did not do. I am profoundly saddened by my inability to do all you needed. It was not from lack of concern, effort. or love. Our 38 years+ was WAY too short. You were the yin to my yang. I am left with a hole in my heart that cannot heal. Thanks for leaving part of you here with me in our six great children. They salve my wound.
Snow always melts!
Sunday, May 29, 2011
There is a Hell!
Regardless of your belief in Heaven and Hell, I can assure you without a doubt - there IS a Hell! This is not a hell of fire and brimstone. This is not a hell of evildoers or non-believers that I am speaking of. It is a hell of doubts and second guesses. It is a hell of what-ifs, and whys? It is a hell of alarms and cords, tubing and needles. It is not a hell of below - it is a hell of here on earth.
MSA is a hell. The consequences of MSA and other alphabet diseases are HELL!
The flesh is temporary. LOVE is eternal.
We are powerless over MSA. MSA is powerless over LOVE.
I want to send out hugs, kisses, and LOVE to any and all afflicted with this DAMNED disease.
Peace be with you.
MSA is a hell. The consequences of MSA and other alphabet diseases are HELL!
The flesh is temporary. LOVE is eternal.
We are powerless over MSA. MSA is powerless over LOVE.
I want to send out hugs, kisses, and LOVE to any and all afflicted with this DAMNED disease.
Peace be with you.
Saturday, May 7, 2011
Watch what you wish for...
I know most if not all of you have heard the expression - "Watch what you wish for. You just might get it" (or similar). I can attest this is true.
During the time my wife and I have been dealing with this disease, I have often commented on the lack of interaction and contact between people dealing with it. With an estimated 4.6 people per 100,000 population, that does not give a large group to interact with. My wife and I are yet to meet in person another patient with MSA, except for a MSA national conference and support meeting we went to a few years ago. This was in Tennessee (we live in N.C.), "promoted" nationally, and even at this event there were only ten or twelve patients.
Through this blog, my other "all purpose blog", facebook, and the various forums on MSA support and awareness pages; I have made contact and "met" eight or nine patients or caregivers of patients with MSA over the past six months or so. It has been great to communicate, even distantly, with people that can share and understand exactly what you are going through.
Now for the downside and the reason for the title of this disease. In the six months or so I have "known" these people, two of the people afflicted with this terrible disease have succumbed to it.
The contact I was wishing for (and enjoyed when it occurred) becomes itself a reminder of how insidious and relentless this damned disease is. One fourth of the people I have "met" that have this disease have died within six months of our first contact!
Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.
During the time my wife and I have been dealing with this disease, I have often commented on the lack of interaction and contact between people dealing with it. With an estimated 4.6 people per 100,000 population, that does not give a large group to interact with. My wife and I are yet to meet in person another patient with MSA, except for a MSA national conference and support meeting we went to a few years ago. This was in Tennessee (we live in N.C.), "promoted" nationally, and even at this event there were only ten or twelve patients.
Through this blog, my other "all purpose blog", facebook, and the various forums on MSA support and awareness pages; I have made contact and "met" eight or nine patients or caregivers of patients with MSA over the past six months or so. It has been great to communicate, even distantly, with people that can share and understand exactly what you are going through.
Now for the downside and the reason for the title of this disease. In the six months or so I have "known" these people, two of the people afflicted with this terrible disease have succumbed to it.
The contact I was wishing for (and enjoyed when it occurred) becomes itself a reminder of how insidious and relentless this damned disease is. One fourth of the people I have "met" that have this disease have died within six months of our first contact!
Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.
Sunday, May 1, 2011
Stem Cell Treatment - my take
NOTE: I get a LOT of comments on this post that are essentially "commercials" for stem cell treatments. THESE WILL NOT BE PUBLISHED! I have no desire to turn this into a commercial site. If you read what I have written, I do not believe stem cell treatment is appropriate or will help with MSA.
Everywhere you go on any MSA support or information site forum, you will find questions about stem cell treatment. I have done a LOT of research on stem cell treatment, especially as it relates to MSA and/or the cerebellum and medulla. Here is what I have found.
Stem cell treatment is not an approved therapy in the U.S. for most applications. It is still in the research stage in most areas that it has been approved for at this writing. There are some amazing results in very specific instances. The reasons for stem cell therapy not being approved are many, some of which are idiotic (in my opinion) protests for religious or moral reasons. That is another topic for later. Stem cell treatments are not approved for mainstream applications yet because they have not been proven safe or effective. I think some day stem cell treatment will be of great benefit, especially in certain diseases or traumatic injury. I do NOT think MSA will be one of them. Here is why.
Stem cell therapy works by inserting stem cells into a damaged area. Stem cells have the ability to recreate any cell in the body. Where cellular degeneration is involved, this can be a miracle just waiting to happen. MSA, and some other degenerative neurological diseases, involve a destruction of brain tissue especially in the medulla and cerebellum. The dopamine receptors are also specifically targeted by the disease. A bit of background (a disclaimer - I am not a doctor or trained in medicine. I read a LOT and have spoken at detail with a LOT of neurologists. This is not meant to be a scientific dissertation, just informative. I am sure there are mistakes, hopefully none of a major variety. Feel free to correct me.) - in Parkinson's the body's ability to produce dopamine and certain other neurogenic transmitters is compromised (or halted). The receptors and mechanisms to utilize the neuro-transmitters is still intact in most cases. That is why supplementation with L-Dopa is usually effective, especially in the early stages of the disease. In MSA the dopaminic receptors are damaged/destroyed. That is why a large number of MSA patients do not respond to dopamine supplementation. There is no system by which it can be utilized no matter how much is there.
Now the reason for stem cell treatment not working in MSA. The mechanism by which the dopamine receptors and brain tissue is being destroyed is not known. If (and it is a big IF) stem cell therapy were to regenerate the receptors and/or the brain tissue, it would be destroyed again. How about an example - you buy an old house. A few years in you start having electrical problems. You call an electrician and he says you have frayed wiring that is shorting out. You have him replace the wires. Months later you start having the problems again. The electrician comes out and says your wires are frayed again. You find there is something eating at the wires. You know the electrician can replace the wires again. However, even if you completely rewire the house the problem will continue until you find and eliminate whatever is eating at your wiring. (I know, call an exterminator. Easy - but try to find an exterminator that will work in the human brain on an unknown vermin!) MSA has unknown vermin eating at the wiring of the brain. All the replacing in the world will not solve the problem.
There are risks involved in stem cell therapy. There are immense costs involved, not the least of which travel to a foreign country is involved. In my opinion, after extensive research; there is no benefit to MSA patients that outweigh those risks and costs. It would appear the best you could hope for is a short reprieve from some of the symptoms.
Believe me I know first hand how frustrating this disease can be with it's relentless decline, clueless medical personnel, and lack of treatment. I just do not see stem cell treatment as any part of the answer, at least at this stage of development.
Everywhere you go on any MSA support or information site forum, you will find questions about stem cell treatment. I have done a LOT of research on stem cell treatment, especially as it relates to MSA and/or the cerebellum and medulla. Here is what I have found.
Stem cell treatment is not an approved therapy in the U.S. for most applications. It is still in the research stage in most areas that it has been approved for at this writing. There are some amazing results in very specific instances. The reasons for stem cell therapy not being approved are many, some of which are idiotic (in my opinion) protests for religious or moral reasons. That is another topic for later. Stem cell treatments are not approved for mainstream applications yet because they have not been proven safe or effective. I think some day stem cell treatment will be of great benefit, especially in certain diseases or traumatic injury. I do NOT think MSA will be one of them. Here is why.
Stem cell therapy works by inserting stem cells into a damaged area. Stem cells have the ability to recreate any cell in the body. Where cellular degeneration is involved, this can be a miracle just waiting to happen. MSA, and some other degenerative neurological diseases, involve a destruction of brain tissue especially in the medulla and cerebellum. The dopamine receptors are also specifically targeted by the disease. A bit of background (a disclaimer - I am not a doctor or trained in medicine. I read a LOT and have spoken at detail with a LOT of neurologists. This is not meant to be a scientific dissertation, just informative. I am sure there are mistakes, hopefully none of a major variety. Feel free to correct me.) - in Parkinson's the body's ability to produce dopamine and certain other neurogenic transmitters is compromised (or halted). The receptors and mechanisms to utilize the neuro-transmitters is still intact in most cases. That is why supplementation with L-Dopa is usually effective, especially in the early stages of the disease. In MSA the dopaminic receptors are damaged/destroyed. That is why a large number of MSA patients do not respond to dopamine supplementation. There is no system by which it can be utilized no matter how much is there.
Now the reason for stem cell treatment not working in MSA. The mechanism by which the dopamine receptors and brain tissue is being destroyed is not known. If (and it is a big IF) stem cell therapy were to regenerate the receptors and/or the brain tissue, it would be destroyed again. How about an example - you buy an old house. A few years in you start having electrical problems. You call an electrician and he says you have frayed wiring that is shorting out. You have him replace the wires. Months later you start having the problems again. The electrician comes out and says your wires are frayed again. You find there is something eating at the wires. You know the electrician can replace the wires again. However, even if you completely rewire the house the problem will continue until you find and eliminate whatever is eating at your wiring. (I know, call an exterminator. Easy - but try to find an exterminator that will work in the human brain on an unknown vermin!) MSA has unknown vermin eating at the wiring of the brain. All the replacing in the world will not solve the problem.
There are risks involved in stem cell therapy. There are immense costs involved, not the least of which travel to a foreign country is involved. In my opinion, after extensive research; there is no benefit to MSA patients that outweigh those risks and costs. It would appear the best you could hope for is a short reprieve from some of the symptoms.
Believe me I know first hand how frustrating this disease can be with it's relentless decline, clueless medical personnel, and lack of treatment. I just do not see stem cell treatment as any part of the answer, at least at this stage of development.
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