tag:blogger.com,1999:blog-82389913009652148062024-03-07T15:27:03.624-05:00LIVING WITH A SNOW(WO)MANOur trip through life with MSA. If you are new here, read the first post before any others. It will all make more sense.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-8238991300965214806.post-51417664563614289852019-05-14T09:55:00.001-04:002019-05-14T09:55:49.685-04:00A NEW BOOKMy latest book is now available on Amazon and Kindle.<br />
It is called: "<i>Curmudgeon Rhapsody</i>".<br />
It is a collection of poetry and other musings from the inner recesses of my mind.<br />
As with the first book, any royalties made will be donated to MSA research and support.<br />
Please consider purchasing a copy and giving it a review. You can buy it by clicking <a href="https://www.amazon.com/CURMUDGEON-RHAPSODY-Antarctic-penguin-urine-ebook/dp/B07RL779J4/ref=sr_1_fkmrnull_1?keywords=Curmudgeon+Rhapsody&qid=1557841896&s=books&sr=1-1-fkmrnull">here</a>.<br />
Pass this along if you would. I want to get some more money to help fight MSA.<br />
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FYI, the first book: "<i>Living With a Snow(wo)man</i>" is still available for sale as well.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-50812598064370995482018-04-14T22:03:00.000-04:002018-04-14T22:03:24.335-04:00A BookThis blog with commentary is now available in a book of the same title. It is available in the Kindle store if you are looking for an e-book. FYI, there is a Kindle app available for almost every tablet, phone, or computer if you so desire. The book is only $3.99 and a portion of any profit will go towards MSA research.<br />
If you prefer a "real" book, by the time you read this it should be available on Amazon for $19.99.<br />
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Please consider purchasing one, even if it is just to make a donation to MSA research! Let all your friends and family know as well!!<br />
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thanks,<br />
Scottgumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-30388804085927192882017-01-06T21:53:00.000-05:002017-01-06T21:53:49.040-05:00Part 2<br />
<a href="http://www.msaawareness.org/">http://www.msaawareness.org/</a> A prime (if not THE prime) location for information - in fact most if not all of the below links can be found on this site as well.<br />
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<a href="http://rarediseasesnetwork.epi.usf.edu/index.htm">http://rarediseasesnetwork.epi.usf.edu/index.htm</a><br />
<a href="http://www.ataxia.org/">http://www.ataxia.org/</a><br />
<a href="http://www.americanautonomicsociety.org/">http://www.americanautonomicsociety.org/</a>gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-20299170059845949552014-05-31T17:22:00.002-04:002014-05-31T17:22:30.344-04:00Battleground<div style="margin-bottom: 0in;">
Battleground</div>
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We've all fought so many battles</div>
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We tend to count the ones we lost.</div>
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Trying to build upon our failures</div>
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Never adding up the cost.</div>
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The big ones seem to be remembered</div>
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Fallen soldiers tossed aside.</div>
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Forgetting all the minor battles</div>
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We should be counting up with pride.</div>
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Good days adding to the memories</div>
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And the bad days taking toll.</div>
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We need to light our way from darkness</div>
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Live our lives, not just play a role.</div>
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Happiness sure can be elusive</div>
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Especially the perfect kind.</div>
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We've got to grab onto the goodness</div>
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And capture it in our mind.</div>
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<i>“THE”</i></div>
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5/31/14
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gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-42037112970173311162014-04-15T21:26:00.000-04:002014-04-15T21:26:32.237-04:00WHY MSA? A theme songThis "song" should be recognizable to most of you. I used to sing the "Why MSA..." part to my wife. I am offering it to the MSA community for whatever.<br />
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Hey man, please come gather around.<br />
(I said) Hey girl, come and sit right down.<br />
(I said) All you need to hear what I've found,<br />
There's no cure yet, but we're trying.<br />
<br />
Hey man, there's a disease that's around .<br />
(I said) Hey girl, it is tearing us down.<br />
We need you to join us, learn about MSA<br />
And help us to spread the word now.<br />
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That's why we're asking you, Why MSA?<br />
We want to know now, Why MSA?<br />
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It will knock you down, turn your life around,<br />
You won't be able to do what you feel...<br />
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Hey man, are you listening to me?<br />
(I said) Hey girl, I need you really to see<br />
(I said) Hey all, it destroys all your dreams.<br />
But you got to know this one thing!<br />
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No one can do it all by themselves.<br />
(I said) Hey man, help us put disease on the shelves.<br />
So learn it, ask Why MSA?<br />
We need your help today.<br />
<br />
That's why we're asking you Why MSA?<br />
We want to know now, Why MSA?<br />
gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com1tag:blogger.com,1999:blog-8238991300965214806.post-80930303866428044432013-04-07T12:07:00.000-04:002013-04-07T12:08:24.843-04:00Some ThoughtsOK, I shamed myself into writing a post. As I have said now time after time, I am amazed at the people that are still reading this. I feel proud and pleased that the posts that are getting read, for the most part, are those dealing with trying to help others deal with MSA and other alphabet diseases. The most popular post over the past year has been my first about stem cell. I understand the allure, I understand the interest. One of the reasons I wrote the post anyway was after an exhaustive research on my part in looking for something to help my wife. I decided after this research that it was a waste of time and money. I still feel this way. I have had some that have written me saying I am taking away hope. I am maybe guilty of taking away what I (and most experts) feel is false hope. Unless you are in a financial position that $30,000 to $40,000 is not an issue to lose, there appears to be no good reason to try what is a risky, and unproven procedure at this point. My opinion is it will remain this way for a long time, if not indefinitely. If you have not read the post, in a nutshell (besides being expensive, dangerous, and unproven) to replace cells that are dying without finding, stopping and preventing the reasons for the cell death, at best you are only prolonging the inevitable. There have been some patients that have had the procedure (in China mostly) that have experienced a "remission" of sorts or even an improvement in symptoms for a while after the procedure. I feel this is due to the placebo effect. Now, I realize if you are better, who cares why or how? There are also patients that have died during or immediately after the procedure. I will stand by my comments. <br />
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One other issue I will bring up here is one that has been on my mind of late. That is the issue of "awareness". It seems that all my brethren in the MSA family are hell-bent on awareness. I will admit I do not understand the call. If we were among the first groups afflicted with the disease (I was a caregiver to my wife, who died from complications of MSA), I would understand more. There is plenty of awareness among the medical field where it matters; researchers. However, being realistic, with such a small population being affected one cannot expect a full-out assault like the one on polio or smallpox generations ago. I am not trying to be heartless, I am not trying to be a defeatist. I am a realist. Doctors know of Shy-Drager, if not MSA. Doctors are taught OPCA, and other names for the same or similar diseases. The problem is, unless in a large area or a teaching hospital, they may not see an actual patient in their career. When my wife and I went to UNC Neurological Hospital to see a doctor that specializes in MSA (movement disorders is typically where these doctors are categorized), we found he had three other active patients and had treated less than 20 in his career. His department head said that those numbers were typical of the four doctors they had seeing MSA patients. We found this to hold true at Duke University Medical Center, Medical University of South Carolina, and every other hospital we went to. <br />
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One of the complaints I hear that I think are driving the awareness calls are concerning how long it takes for a diagnosis. One has to understand, doctors do not want to give this (or similar) diagnoses. Remember there is no cure or treatment. There are no medicines or drugs to "cure" anything. Yes, there are drugs that can help with the symptoms. Most of these are started when those symptoms are noted anyway, regardless of the diagnosis, or lack of. I know from first-hand (or second-hand if you are looking realistically on me as a caregiver, not a patient) experience how frustrating is can be to go from doctor to doctor, test after test, and visit after visit to try to get a handle on what is going on. But, I also remember the devastation when we got the official diagnosis. (I say official because I and to some degree my wife, had already come to that conclusion from our own research) Doctors want to make sure they rule out any other disease which can have similar symptoms, some of which DO have treatments if not cures. Believe me, as hard as the waiting is one does not want to hear the diagnosis of MSA. <br />
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On research: there are many fine, wonderful, dedicated, and devoted researchers that are working on finding a cause, treatment, and ultimately a potential cure for MSA and other alphabet diseases of the brain. I feel the greatest results will come from all the research into the brain and its diseases in general. The brain is one of the least understood organs in the human body. To put it in perspective, it essentially cannot do all it does. We can build computers now that can do computations as complex and intricate as the brain. However, we have never come close to building a machine that can do that and all the simultaneous things the brain does AND have self-awareness. The brain is a wondrous, fantastic, intricately homogenized machine that is a problem waiting to happen. The complex, amazing "dance" performed by this organ can be wrecked if just a few "wires are crossed". When dealing with the myriad of brain diseases like MSA, PSP, DLB, HD, PD, ALS, and others, the research is being done at a "grand level". There is still so much we do not know about the brain that a finding from a researcher studying Huntington's Disease may be a breakthrough for MSA or others. It seems to me that as much as we need to support research into MSA specifically, research into any degenerative brain disease benefits the cause.<br />
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I wish all reading this well. I hope you are just doing research out of curiosity not because you or you loved one are suffering with MSA. I will remind you that that are pages here that I did covering my wife's symptoms and what steps we took and/or what devices we used to help. They are under the title "Maybe this will help..." There are three pages. They are not truly chronological, as I wrote them as I thought of them. Plus, I can tell you from talking to other MSA patients, although most get the same symptoms they do not come at the same time or in the same order.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com9tag:blogger.com,1999:blog-8238991300965214806.post-44546601879504200932013-02-16T19:21:00.003-05:002013-02-17T07:19:39.512-05:00I have to tell Carol about thatIt has been over 20 months since the ambulance came and took my wife away for the last time. Even after that long, it amazes me that I still see or hear things that I think to myself - "oh man, I have to tell Carol (my wife's name) about that. A former boss, friend, and somewhat of a mentor of mine passed away late last year. I just heard about it within the past weeks. The first thing I thought of when I heard was telling my wife, and how amazed she would be. <br />
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My wife was from South Florida (by way of the Pittsburgh area, but from age 4 a Florida girl), the Ft. Lauderdale area to be exact. We made many, many trips from N.C. (where I am from, and where we lived as a couple for most of our marriage) to the Ft. Lauderdale area over the years. Then as her mother and a daughter of ours moved to Central Florida - to I-4 and to the Orlando area. I still make the trips to Central Florida quite often. I am writing this from that area, already my second trip this year. <br />
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The reason I bring that up is I am very familiar with the wonderful "Main Street East Coast" - I-95, at least from Richmond, Va to Miami. The first trip I took to Florida as a teenager was before most of I-95 was there. As my wife and I made the trips over the years we saw more and more of the highway being completed until it was done (not counting all construction - that never ends!). I know a lot of the exits, a lot of the scenery, a lot of the attractions. I have regular exits that I frequent on my travels. So, when I see something new and interesting it stands out. But as on today's trip, one of my first thoughts is - "I have to tell Carol about that."<br />
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So, Carol - you should have seen what I saw! And, David Moore died in late November.<br />
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I guess I'll just keep "telling" her. Miss you.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com1tag:blogger.com,1999:blog-8238991300965214806.post-81119924517002158652012-12-15T14:10:00.001-05:002012-12-15T14:10:25.414-05:00Tragedy<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfpMY-lyUNzEOgU0LV-MRfcG6RogcQzsj8myTyfwPSsoquOeCwUTd_pgjKWfCrtuLaKKkY4Y4eth_7q8vNpBFhmBfO4u1v9pMdvkEbZCKhNty0SdL3Ytn7LipYOm76JV3oQ4LrasipmCc/s1600/footsteps.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfpMY-lyUNzEOgU0LV-MRfcG6RogcQzsj8myTyfwPSsoquOeCwUTd_pgjKWfCrtuLaKKkY4Y4eth_7q8vNpBFhmBfO4u1v9pMdvkEbZCKhNty0SdL3Ytn7LipYOm76JV3oQ4LrasipmCc/s320/footsteps.jpg" width="320" /></a></div>
This is something I've had in my mind for quite a while. The horrible killings in Connecticut yesterday prompted me to do it. All the best to those families that were affected by the tragedy.<br />gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-38675497988946642142012-11-17T16:24:00.000-05:002012-11-17T16:24:45.727-05:00A Medical & Research Synopsis - Part 1One of the posts here that continues to get the most hits is the one I did on stem cell therapy. That combined with the fact that I still get emails and questions from patients and caregivers with this and other alphabet diseases has led me to do this post.<br />
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I see by the posts on the MSA Facebook pages and other "gathering places" online that the isolation that my wife and I felt when she got her diagnosis is still prevalent in patients and caregivers. The alphabet diseases of the brain are still rare enough that it is still a surprise to find a doctor or nurse that has knowledge of the diseases and their symptoms. <br />
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I am going to attempt to outline the what I have found as far as medical knowledge of, pathology of, progression of, and ultimately potential treatments of MSA and related alphabet diseases. I am going to do this in parts, as I have already worked on this one for an hour and barely scratched the surface.<br />
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I want to mention again - I am not a medical practitioner of any type. I have a long standing interest in medicine dating from my childhood combined with a voracious appetite for reading and accumulating knowledge. With my wife's diagnosis of and ultimate death from complications of MSA, I have done even more research into diseases of the human brain concentrating on scientific and medical breakthroughs in this area. So, although I am going to be as accurate and specific as I can be, this is not intended to guide anyone in the treatment, diagnosis, or prognosis of a specific disease. I will share some of my conjecture and opinions but I will identify them accordingly. I also do not intend to or mean to present this as a scientific paper. I will present this as simply as I can (and as I have to, not being an expert or trained in this area). I am sure I will make mistakes. Do not take anything said here as "gospel". Hopefully this will provide you with some seeds to start your learning process. Most of this I have gotten from the internet, some from scientific journals and textbooks, and some from doctors and researchers I have corresponded with. <br />
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A lot of breakthroughs have occurred with brain diseases in the past five to seven years. I know from personal experience, when you and/or a loved one are facing one of these diseases and find it hard to get the information you want, it seems like no one knows anything; but that is not the case. <br />
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Actually the brain itself is still very unknown territory. Doctors and scientists alike are still mystified by the things it does and the processes by which it does them. The diseases that impact the brain are still very much a mystery as well. When one does not know how something is done, figuring out why it is not being done any longer is made almost impossible! One of the "problems" facing researchers into the brain is the fact that a lot of research cannot be done on the human brain for medical and ethical reasons. You cannot dissect a brain without killing the host body. You cannot "try" different procedures on the brain for the same reasons. The human brain is so vastly complex that there is no model outside of the actual brain itself that lends itself to accurate study. Animal research has been of great help in a lot of cases, but the differences in the human brain and its functions from a lab rat's brain is much more dramatic than other systems in the body. The fact that our brain not only performs the physical control center functions of operating movements, processing information, and other animal-like processes; but contains "us", makes any attempt to understand the functions very, very difficult. <br />
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I call these diseases "alphabet diseases" for obvious reasons. They are: ALS (Amyotrophic Lateral Sclerosis), CBD (Corticobasal Degeneration), DLB (Dementia with Lewy Bodies), MSA (Multiple System Atrophy), PAF (Pure Autonomic Failure), and PSP (Progressive Supranuclear Palsy). This is not meant to be a complete list, but these all affect the brain and are identified by their initials. They are all now classified as diseases caused by irregular "clumps" of proteins. Depending upon the primary type of this protein they are classified as tauopathies or synucleinopathies. MSA is a synucleinopathy. PSP (and Alzheimer's which I did not mention) is a tauopathies. They are similar in that protein "clumps" aggregate in the brain. The difference is the type of protein that forms these "clumps" - tau or synuclein.<br />
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There has been much research into these "clumps" and some promising results in treating them, at least in vitro (or outside of the body). However, one huge question remains - are these irregular proteins the cause or are they one of the effects? It has been shown in studies that slowing the aggregation of these proteins does slow the progression of these diseases. But again, is it just working on a symptom or a cause? This is a critical question that must be answered prior to any treatments or cures. <br />
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Now is a good time to bring up one thing that keeps coming up in comments and posts I see around the web. Although the tauopathies or synucleinopathies all have similarities and most are called Parkinson's Plus diseases, the pathology of the individual diseases are quite different. As I have already pointed out, the proteins involved in these diseases are distinctly different and divide them into two classes. The areas of the brain affected by the diseases, even with similar symptoms, are different. For example MSA-P (Parkinson's type with many Parkinson's symptoms and responding to levadopa) is vastly different from Parkinson's. They way I had it explained to me was - in Parkinson's the brain stops producing dopamine. In MSA the receptors for dopamine uptake are degenerating. Compare this to a group communicating by radios. One radio will not transmit and another will not receive. The result is the same, poor or no communication. The cause is totally different and thus the "cure" would be different. I classify myself as a realistic optimist. I know that research is coming up with chemical compounds and other treatments every day that have a positive effect on one or more of these diseases. I am heartened by these results. However, I also know that a treatment or cure for one does not mean a treatment or cure for another. Any research into the brain and it's chemistry is good for all these diseases. As I stated above, there is still so much that is not known about how the brain functions and how these diseases exactly affect the brain, especially in their early stages. So, you can remain positive and be happy when you see a new drug is being tested on Parkinson's patients. But, be cautious as well. One example I will leave you with is pneumonia. Even with all our antibiotics, antiviral agents, vaccines against certain types - pneumonia still kills over 4 million people a year! A "cure" for these alphabet diseases may be a long time coming.<br />
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End part 1.<br />
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<br />gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-7884944345690667082012-05-30T13:34:00.000-04:002013-04-07T12:10:14.605-04:00One Year Ago TodayI am actually writing this before I have a title, which is unusual for me. I cannot think of what to call it. Here we go.<br />
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Today is the one year "anniversary" (not a good word to describe, but...) of my wife's death. (as an aside, I have noticed no one seems to use death, or died. or dead when referring to a family member or loved one. Instead they use passed on, passed away, or some even more flowery synonym or euphemism, but that is probably a post for my other blog. My wife died. The use of a euphemism doesn't diminish the pain or the reality. If I offend anyone, go read another blog. But I digress...)<br />
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I have extremely mixed emotions today, none of them really good. Sadness and grief are a big part of it; but to be fair, guilt is still a large part of what I feel. You might be thinking one thing, but let me explain. Just after my wife's death (I was going to write "passing" but after the above it didn't seem real), I was wracked with guilt and remorse over some of the things I wish I had done, or said. I do not really regret many of the things I did do, thankfully; but I do have regrets. It is like the famous quotes:<br />
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<em>Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable</em> - <span style="color: #333333;">Sydney J. Harris </span><br />
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<span style="color: #333333;">or</span><br />
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<em><span style="color: #333333;">When you look back on your life, you'll regret the things you didn't do more
than the ones you did.</span> </em>- H. Jackson Brown, Jr.<br />
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My wife and I tried to DO as much as we could in the years after her diagnosis. She wanted to go on a cruise with her sister and we did, along with another one a little over a year later. Then we did another one a year and a half later with my youngest daughter. I know she would have rather have done the cruises "whole" and able to partake of more of the activities, but I also know she enjoyed them a LOT. In fact, we might have been better at doing the BIG things (like the cruises, or taking her to Florida) than the smaller things. Those smaller things are what eat at me. It is very sad for me to write this (I will with hope of catharsis), but one of the things she wanted to do was to go to a Russell Stover outlet that is about an hour from here. Now, in the scheme of things, that is not a real difficult request. But, add in the fact of a wheelchair, bathroom issues (see earlier posts), no good wheelchair access at the shopping center the outlet is located in, and my overall exhaustion for most of the time; and it seemed like a HUGE problem to me. I denied her of that trip many times over the months prior to her death. Looking back at it now, I was selfish and foolish. That two hour+ journey might have brought her immeasurable joy for a little effort. There are other regrets similar to that. None big, but that is what makes them so painful.<br />
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I wrote some emotional stuff a year ago. Somewhere in there amongst those lines are some words about "doing" and having no regrets. I implore anyone reading this to do what you can if you are faced with a grim future or diagnosis. It actually is pretty good advice for anyone, anytime. I need to heed my own advice, but the healer is always the worst patient.<br />
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I will end this with a poem. In the spirit of disclosure, this is actually a one line thing I wrote over forty years ago (before I even met my wife) that I turned into a song for her later. I will not sing for you, but here are the words: (the second verse is chilling to me as I wrote this many, many years ago)<br />
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<em><strong>Always will my love for you </strong></em><br />
<em><strong>remain inside my heart.</strong></em><br />
<em><strong>No matter where you go</strong></em><br />
<em><strong>or how long that we're apart.</strong></em><br />
<em><strong><em><strong>The promise that I left you with</strong></em><br />
<em><strong>forever echos in my ears...</strong></em></strong></em><em><strong>I'll need you always.</strong></em><br />
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<em><strong>You were gone one lonesome day</strong></em><br />
<em><strong>and though I'd told myself before</strong></em><br />
<em><strong>you'd have to leave me soon</strong></em><br />
<em><strong>you couldn't stay with me much more.</strong></em><br />
<em><strong><strong><em><em><strong>Still I listen for your laugh,</strong></em><br />
<em><strong>your smile's forever frozen in my mind...</strong></em></em></strong></strong></em><em><strong>I'll need you always.</strong></em><br />
<strong><em> "THE" 1971 1982</em></strong><br />
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I cannot envision a time that I will not miss her so very much.<br />
<em>RIP</em> - Carol Condon Poole - 09/30/54 - 05/30/11<br />
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<br />gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-56834194796136908832012-03-17T16:17:00.000-04:002012-03-17T16:17:48.364-04:00Thanks to all!This post will actually precede the post I am referring to, but if anyone has questions just go to next post (older). <br />
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The video featuring the MSA patient has won the Neuro Film Festival. It was a runaway in numbers. For all of you that voted, THANKS! Awareness of this (and other) rare neurological disease is greatly needed. Now all the attendees of the American Academy of Neurology annual meeting will see the video. I can tell you from experience that even neurologists are not always aware of the symptoms of MSA.<br />
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On a side note, although I am glad the MSA video won; and obviously I lobbied for the result - I am saddened to an extent by the fact that there were other videos there from just as dedicated family members, patients, and caregivers about other diseases that got almost no support/votes. Although I have a personal interest in promoting MSA awareness, I know ALL neurological diseases need attention, support, and research. I wish all those afflicted with and affected by these diseases the best. May treatments and cures be found for all.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-55576782300605034882012-02-12T09:16:00.000-05:002012-02-12T09:16:29.734-05:00Please Help!As most of you know, my wife passed away last May from a rare neurological disease called MSA. One of my goals in life is to offer support to those patients, caregivers, and families affected by this rare, fatal illness. The American Academy of Neurology has a film contest each year where they pick a short film made by individuals about support for brain disease research. Entries are submitted to You Tube and a winner is selected by popular vote. The film is then shown at the American Academy of Neurology annual meeting. This would really be important to help with MSA as it is very rare and still unknown to a lot of doctors and other medical personnel. I know this from personal experience. There is a film featuring a MSA patient that is entered in the contest this year. I would ask that you register, watch, and vote for the film. Even if you do not want to vote, please go watch the film. It will show you what MSA patients like my wife, go through with this illness.<br />
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Please help make Multiple System Atrophy film #1 at the Neuro Film Festival<br />
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A film on Multiple System Atrophy has been entered in the Neuro Film Festival.<br />
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We need your help to get enough votes to make it the "Fan Favorite", this will<br />
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mean increased publicity for Multiple System Atrophy which is so desperately needed. <br />
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This is an achievable goal if we all work together. <br />
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As of February 11th the film is in first place in the voting but the second place film is <br />
<br />
very close behind, every single vote counts.<br />
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Ask your friends to vote, post on your facebook wall and twitter accounts, get<br />
<br />
your teenage relatives involved so all their friends will vote too. We can do<br />
<br />
this!!! <br />
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PLEASE TAKE ACTION NOW! GO TO THIS WEBSITE AND ENTER YOUR <br />
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VOTE BEFORE MARCH 8TH.<br />
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Please follow these instructions exactly to ensure your vote is counted<br />
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Step 1: Go to Neuro Film Festival Website<br />
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http://patients.aan.com/go/about/neurofilmfestival<br />
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Step 2: click on the VOTE NOW! tab.<br />
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Step 3: Click on Register Now and enter your details<br />
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Step 4: Check you email inbox for a verification email - click on the link to<br />
<br />
verify your registration<br />
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Step 5: Go Vote -- Go back to Neuro Film Festival Website<br />
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http://patients.aan.com/go/about/neurofilmfestival and click VOTE NOW<br />
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Step 6: Find the “Multiple System Atrophy MSA” film in the list and click on the word VOTE<br />
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Note: If you have more than one email address you may register that email and vote again. <br />
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One vote per registered email address. <br />
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Please do this and pass it on to everyone you can.<br />
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Scottgumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-58289744527488307032012-01-22T09:30:00.001-05:002018-08-31T08:49:05.330-04:00Stem Cells - follow up<b style="color: red;">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.</b><br />
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Before I get into the topic I again want to express my astonishment over the hits this site is still getting, as well as the comments and emails I get. To say I enjoy them would be wrong, because it usually means I am "meeting" another person suffering with MSA. However, it is always good to hear from people. I am grateful when this site is mentioned as offering some support and/or solace. Please feel free to comment or contact me.<br />
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The second most read post on this site is the one I did about stem cells (fyi, #1 is the intro page) If you have not read it, here it is: <a href="http://www.livingwithasnowman.blogspot.com/2011/05/stem-cell-treatment-my-take.html">http://www.livingwithasnowman.blogspot.com/2011/05/stem-cell-treatment-my-take.html</a>. I promised a follow up. I have been doing research and have contacted many people to gather as much information as I could. I do not mean for this to be the definitive stem cell comment by any means, but I do hope it will provide some support for those looking at the treatments. <strong>At the end I have placed some links you may find helpful in your own journey.</strong><br />
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I have been argued with over my first post and the conclusions I came to that stem cell treatments for MSA, at least at this time, are a waste of money. I am sad to say I can find nothing to change my opinion at this writing. Stem cell treatment for MSA (or other alphabet diseases, especially of the CNS) is not proven to offer any lasting medical improvement, and has caused harm to some patients with complications such as infections, immune system responses (rejection), etc. There are inherent dangers with any medical procedure. Even a simple vaccination injection can be very dangerous in certain cases due to allergic reactions. It is rare, but it happens. To pay tens of thousands of dollars for an unproven, potentially deadly procedure with no proven record of safety or success is not a good bet, at least in my opinion. <br />
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I understand the allure of stem cell treatment (or other treatments with promises of curing or reversing these terrible diseases that standard medicine cannot help with). To accept that there are diseases that modern medicine cannot treat, much less cure, is very hard to do. My wife and I talked about stem cell treatments and other alternatives a lot. That is where I first became aware of the problems and dangers. I did hours and hours of research. I "spoke" to (either in person, on the phone, by email, or by mail) anyone that I could get up with that I thought had any knowledge of stem cell treatments. I mentioned in a post I did earlier, I even got two Chinese "doctors" (in quotes because one of them told me he was not a medical doctor, the clinic just referred to all their clinicians as "doctor") affiliated with a stem cell treatment center in China to tell me they would not use the treatments on their loved ones - it was too dangerous and did not work.<br />
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I do believe stem cell treatment offers a great resource for the treatment and possible cure of many, many diseases. I also believe we are many, many years away from this. I also believe that the treatment of CNS alphabet diseases may be the last frontier for these treatments, outside of spinal cord injury (there is a lot of promise there). Due to the fact that most of these alphabet diseases are not understood from a pathology or systemic standpoint, treatment is a long way off. The good news? A long way off in today's world can be much quicker than in the past. Advances in medical science are happening every day. There are discoveries being made as I write this. Maybe one of them will be able to offer treatment and/or further understanding of these diseases. For now my advice would be to stay away and save your money. If you are offered a chance to engage in stem cell research from an accredited research facility, go for it. They are probably not to the stage of a cure, but you may advance the field of study and treatment.<br />
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I promised links. Rather than clog things up with a lot of them, I have two. The first is for the ISSCR, the International Society for Stem Cell Research. They have a great site with a lot of information about what is going on in the stem cell research world. You can find their site here - <a href="http://www.closerlookatstemcells.org/">http://www.closerlookatstemcells.org/</a>. They also have many links there for you to continue your research. The second link is one I think I shared before. It is a link to a site that offers all the approved medical trials and studies going on in the U.S. It covers all diseases, but can be searched by specific disease. I have the link to the MSA and related studies. The link is - <a href="http://clinicaltrials.gov/ct2/results?term=Multiple+System+Atrophy&recr=Open">http://clinicaltrials.gov/ct2/results?term=Multiple+System+Atrophy&recr=Open</a> .<br />
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As always, have the best day you can have.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com2tag:blogger.com,1999:blog-8238991300965214806.post-80512645892368441632011-12-25T08:48:00.000-05:002011-12-25T08:48:05.518-05:00What would you do...?What would you do differently today if you knew it was your last Christmas? Or the last Christmas of a loved one? A good friend?<br />
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Even though my wife had a terminal illness, we did not think last Christmas was our last together. We were just weeks back from a cruise, she was feeling pretty good (for her). Who knew?<br />
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So, who would you call? Who would you visit? Who would you hug? Who would you kiss?<br />
What would you do? What would you eat, say, buy, sell, give away, hold, or ignore?<br />
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We don't know, do we? DO IT!!<br />
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Merry Christmas!gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-52333213381309969182011-12-18T22:06:00.000-05:002011-12-18T22:06:33.386-05:00Happy Holidays, Merry Christmas, and Happy New Year!!Well, one week from now, as I am writing this, the first Christmas without my wife in 38 years will be over. I will admit I am not looking forward to it (except for the grandkids). Christmas, heck holidays in general, was/were my wife's "thing". We shall see what happens.<br />
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I wanted to take this time to wish anyone affected by or afflicted with this disease a very Merry Christmas, Happy Holidays, and a very Happy New Year. To family members that are dealing with or caring for patients and in memory of those that have lost their battle with MSA as well. I have a saying that I have shared with people and try to live by - Have as good a day as you can have.<br />
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I am still getting a phenomenal number of hits to this site. Not a week has gone by that I have not gotten multiple emails from people with MSA or family members of patients that are desperately looking for some consolation, advice, or just someone to listen. I answer every one gladly. I remember how desperate I was with my wife. I told her and felt many times that the disease was "outrunning" us. As I have stated on other posts here, every time we would come up with a "solution" to an aspect of the disease, the progression of the the disease took us on to another one. To all of you reading this for the first time, or that have not read many posts here; please go to the posts entitled "Maybe this will help.." parts 1, 2, and 3. These posts are a synopsis of my wife's symptoms, their progression, and the "solutions" we came up with to deal with them. <br />
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I look forward to hearing from any and all of you. <a href="mailto:gumbypoole@aol.com">gumbypoole@aol.com</a>gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-27595814358987591922011-11-07T19:40:00.000-05:002011-11-07T19:40:22.294-05:00They just keep coming!Last month - October 2011 - logged the second highest number of visits to this blog in its existence. As I have stated before, I am constantly amazed at the number of hits this site still gets. I feel kind of bad since I hardly ever post here anymore, so here I am.<br />
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Hardly a week goes by without me getting an email or a comment from someone expressing their good wishes/blessings on me and my family or to thank me for writing the posts I did. That is extremely gratifying. As I said when I started this, this blog was for me - especially when it started. I will admit as I talked to and "met" other people with MSA I did get some inspiration to try to offer some posts that I thought might help those going through the hell that is a degenerative neurological disease. <br />
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I have noticed that the second most popular post here is my post about stem cell treatments. I understand this as one of the great agonies of MSA is the lack of treatment. I am doing more research now and will do an additional post when I feel I have anything new to add. For now I stick by the recommendation of the original post - stem cell treatment, especially since it involves extensive cost and travel, is not something I feel is worth it. It also could be very dangerous. The hospitals that are doing the procedure are not under any medical protocol approvals like we are used to here in the U.S. It is still very much an experimental procedure. I do not want to take away hope from anyone. I definitely know the burning desire to do SOMETHING to try to beat back this evil malady. I also recognize that I am only giving my opinion. However, it is an educated opinion. I have spend many hours researching the stem cell procedures that are out there now. I have even had two email "conversations" with Doctors in China that work in facilities that do the procedures. (both told me, "off the record" that they would not have the procedure done on themselves or a loved one with MSA - FYI) So, I will revisit this sometime in the next six months.<br />
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I am still upset by the lack of views the posts "Maybe this will help" parts 1-3 get. Those contain things I wish I had been told when my wife and I were going through the daily trials and challenges of MSA. I recommend you read these if you are a caregiver. I am not claiming to have all the answers. Heck, I don't even have all the questions. What I tried to do was tell you what we faced, and some of the ways we made it better. If the MSA advances for you like it did for us, knowing ahead of time can be a great help. A lot of our "fixes" we came up with only worked for us for a very short time due to the progression of the symptoms.<br />
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I wish everyone affected by MSA my best. Family members, patients, medical staff dealing with the symptoms, researchers working on finding out what exactly is going on with the disease and hopefully working on a cure are all in my thoughts. Best wishes and good luck to all of you. Please feel free to comment or write me - <a href="mailto:gumbypoole@aol.com">gumbypoole@aol.com</a>gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-83296114854781190562011-08-13T23:20:00.000-04:002011-08-13T23:20:18.132-04:00The aftermath - a follow upIt was 11 weeks from when I am writing this that the ambulance took my wife away. It was 11 weeks ago that I last spoke to her. It was 11 weeks ago that I was doing chest compressions for 8+ long minutes waiting for the ambulance to arrive. In a way it seems like yesterday. In other ways it seems a lifetime ago.<br />
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I am still amazed at the views this blog gets. I am more amazed at the comments. I am extremely grateful for the kind words and thoughts that have been sent my way. I am gratified by the fact that people find some help, information, and attachment here and then take the time to comment on it. As rare as MSA is, there are way too many families out there that are facing this terrible nightmare of a disease. That is the main reason I am posting now. I feel somewhat obligated to do so. However, I gladly would do so every day if I thought I could offer any comfort or help to anyone dealing with this disease (or any of the alphabet diseases).<br />
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Even though the diagnosis of MSA is a death sentence, (sorry if that is harsh to anyone reading this that has not accepted this, but unfortunately it is true - at least now) it is so hard facing the end. I am surprised every day at how the loss of my wife is still so raw. In my case I think one of the things that made/makes it so hard is the fact that my wife just "left". I always saw the end as a more gradual thing. Maybe hospice in a bed, surrounded by loved ones, and saying goodbye. My wife passed out and never woke back up. Even though we said our goodbyes, it was not at all what was envisioned. She was not able to say goodbye back. In a way this is a good thing. One of my wife's biggest fears and concerns was a feeding tube, a catheter, and a long drawn out ordeal. I know my wife's condition made her miserable. The inability to communicate was one of her biggest frustrations. She could not speak well at all, with no volume. That make the phone impossible to use. She could not type on her computer due to the tremors and lack of motor control. She was isolated from all those she loved, to a point even those in the same room. I have posts on this site about how many times I said "what?", "excuse me?", or just "huh?". There were a lot of times that she would just say never mind and give up. From that perspective the way things went were definitely for the better. From a "closure" perspective, it was far from perfect; at least for us left here.<br />
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I find the days getting easier to deal with. I know this is a good thing. I know this is the natural course. I also know that in a way it makes me feel guilty. It seems like not feeling so sad is not fair to her. But again, I know that a life with nothing but profound sadness is not much of a life at all. I also know with all my heart that she would not want me to be very sad all the time. Every one of us here on earth now will be dead at some point. This is the case with every person that has or ever will live. It is still hard to deal with when it hits you.<br />
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The thing that gets me the most is music. I can hear a song from our past, particularly the early days of our relationship, and be hit with a flood of emotions and memories. I still find myself thinking I will have to tell her about something I have seen or heard when I get home that night. Being together for almost 39 years and married for 38+ develops a real attachment at multiple levels. To lose that connection is weird and very difficult to do without. The longest we were apart for those 38+ years was less than a week. To now be at 11 weeks without seeing her or talking to her is still very odd and discomforting.<br />
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I will post here when I have something to say. I do check the comments and try to answer anyone that gives me a contact with a question or a request for contact. I do think daily of those that I have "met" through this blog, facebook, and some other MSA-related sites. I would still love to hear from anyone that wants to drop me an email, a comment, or a question. I welcome any of you with questions to look at the three posts here entitled - "Maybe this will help..." parts 1, 2, and 3. They are a synopsis of my wife's symptoms and how we dealt with them.<br />
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Until later.<br />
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gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-86115457146436119262011-06-12T09:08:00.001-04:002011-06-12T09:13:43.996-04:00ThanksI wanted to take a moment to thank all the people from around the world that offered their condolences. I greatly appreciate your thoughts and prayers. The pain has been made easier to bear by the kind words. <br />
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I am not sure yet what I am going to do with this blog. I will see. If anyone has any questions or thoughts they would like to share or ask, please do so. <br />
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My best to any and all afflicted with or affected by this horrible disease (or any of the alphabet diseases).<br />
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Again, thanks,<br />
<br />
Scottgumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com2tag:blogger.com,1999:blog-8238991300965214806.post-18508697176099822382011-06-05T11:25:00.001-04:002011-06-06T07:52:54.996-04:00Laugh, Live, and LOVEThis past week has been a surreal experience. I have had the unfortunate experience to lose many family members over the years including my father, but nothing has been close to this. I have had many, many thoughts - as I have stated here before, I am more "creative" when emotional (as you can see in the previous posts from the past seven days).<br />
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Here are some thoughts on life:<br />
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Probably the biggest advice/most important thing I can pass along is amost a tired cliche - live every day as it is your (or your loved one's) last day. Although my wife had a terminal illness, I thought we had time to do and say what we wanted. If you have something you have always wanted to do, if there is any way you can do it (or a close substitute) financially - I recommend you DO IT! If there is something you want to say - same advice - SAY IT! Besides the loss of my lifetime companion, things left undone or unsaid are the hardest for me. This is especially true if these things are simple things. You may want to go for ice cream. If you are a caregiver for someone that cannot move well, that can be hard. It is easier to say to yourself (or your loved one) - "We will do that tomorrow". I used to tell my kids (in fact we had a little chant that I bet they remember) - <strong><em>tomorrow never comes</em></strong>. By definition that is true - yesterday's tomorrow is today. So, waiting for tomorrow is fruitless in many ways.<br />
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Try to find something to laugh at. This one was probably one of the things that my wife and I did the best. She had a great sense of humor and I and am a reknown idiot. I do remember we laughed at many things last Saturday (her last day conscious). I am very glad for that. Oh, there were days we wept togther as well. I feel that is important too, but laughter is great for everyone involved. Try to find something that can make you laugh, as often as you can.<br />
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Involve family and friends. I feel my wife and I left this one a bit short. It was so easy for us to withdraw and just have each other. That is great, but it means two people are trying to "recharge" each other. When you get run down and depressed, that can be impossible. I believe the most important thing you get by contact with people that love you, and you love, is strength. We all need to be recharged with love, faith, and friendship to make it. Our internal "batteries" can only go so long without a charge. Like I said, if both of you are low on "juice" that will not happen. You are running on empty. The first two points above can help recharge to a point, but ultimately you need other people to pull the "power" from. Our kids and family were close, but see point one - everyone thinks there is going to be a tomorrow to visit. If you are the caregiver, remember YOU need recharging. This is probably the area that I was most remiss in. I felt like I needed to be with my wife every moment I could. Don't get me wrong, I am greatful for every minute. But, going back to point one, I wonder if I had stepped away occasionally if I would have had the strength (or drive, or gumption, or whatever) to take my wife out more, even if it was just to ride around. Caregivers, take care of yourself. I know I am not the first to say that by any means, but it is important enough to repeat often.<br />
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Tell those you love that you love them - do it often. Then repeat. 'Nuff said.<br />
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As a follow up (and maybe conclusion) to the above points I will get personal again. We have had family and friends around all week. We have had food enough to feed small countries. We have cried together and we have laughed together. All of that has been wonderful In fact, I do not know how I would have made it through the week without it. However, my wife (and I) would have LOVED to have the people, the food, and the fellowship when she was alive. If you know someone that is suffering with an illness, especially if they are limited in movement - go see them! If they are family, you are REQUIRED to! Any of the gatherings we have had this week, had they happened last anytime in the previous weeks, would have thrilled my wife (and me) to no end. If you know a family that is going through something like mine just did, take them a meal or a dessert. Drop them a call. Send them a card. Offer to go shopping for them. I am lucky in that I have six children that all live fairly close by and they helped me with this, but we still did not get everyone together and commune like we have this past week. Like I said, my wife would have loved it, as I am sure most people in her condition would have. Make a point to contact them. <br />
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Enough for now. I realize I got a bit "preachy". Sorry. I do feel strongly about this for obvious reasons. I hope I can live up to my own words as I go forward.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com1tag:blogger.com,1999:blog-8238991300965214806.post-64786843779035876182011-06-04T06:24:00.002-04:002011-06-04T06:25:37.896-04:00TEARSAs I wipe my eyes again <br />
<div style="margin-bottom: 0in;">I know,</div><div style="margin-bottom: 0in;">I'll never be the same.</div><div style="margin-bottom: 0in;">I think I'm done, </div><div style="margin-bottom: 0in;">but they can well back up</div><div style="margin-bottom: 0in;">whenever I hear your name.</div><div style="margin-bottom: 0in;">Sure</div><div style="margin-bottom: 0in;">I laugh at things.</div><div style="margin-bottom: 0in;">But it's more for them than me.</div><div style="margin-bottom: 0in;">I wonder if life will ever seem</div><div style="margin-bottom: 0in;">the way it used to be.</div>gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-53974312990557507182011-06-02T08:09:00.000-04:002011-06-02T08:09:12.636-04:00ObituaryCarol's obituary - <br />
<div align="CENTER" style="margin-bottom: 0in;"><br />
</div><div align="CENTER" style="margin-bottom: 0in;">Carol Poole </div><br />
<div align="LEFT" style="margin-bottom: 0in;">Carol J. Condon Poole of Winston-Salem, 56 left her wheelchair behind forever Monday May 30<sup>th</sup> after more than five years battling MSA (multiple system atrophy). She departed after a final selfless act of organ donation with her loving family by her side. </div><br />
<div align="LEFT" style="margin-bottom: 0in;">Carol was born in Pennsylvania to Marlen Condon but grew up a true Florida girl in Plantation, Florida. After graduating from Plantation High School Carol attended Western Carolina University where she met her husband-to-be. After becoming a certified operating room technician at Presbyterian Hospital in Charlotte, N.C., she went on to become a R.N. Carol was retired on disability from Forsyth Medical Center where she worked in the operating room for over ten years. Carol was known at work for her compassion, professionalism, and sense of humor. </div><br />
<div align="LEFT" style="margin-bottom: 0in;"> After WCU, Scott Poole and Carol were married. On May 16<sup>th</sup> they celebrated 38 years together as husband and wife. Carol was a loving mother of six children – Christi Waiters, Kimberly Bowers, David Poole, Stephani Poole, Patrick Poole, and Bailey Poole; and a grandmother to Hannah Byerly, Landon Byerly, and Alyson Bowers, all of the greater Winston-Salem area. She was a doting Mom and Nana to all. Her love as a wife, mother and grandmother was endless. </div><br />
<div align="LEFT" style="margin-bottom: 0in;">Carol is survived by her above mentioned family as well as her mother Marlen Condon of The Villages, Florida, and her twin sister Karen Parsons and her family of Summerville, S.C</div><br />
<div align="LEFT" style="margin-bottom: 0in;">Carol's life will be celebrated on Thursday June 2<sup>nd</sup> at the Regency Ballroom of the Quality Inn & Suites 2008 S. Hawthorne Road. W-S N.C. from 6:30 – 8:30 pm. All that knew her are asked to come and share your memories and listen to others share theirs. Food and beverages will be provided. Dress as you wish. </div><br />
<div align="LEFT" style="margin-bottom: 0in;">In lieu of flowers, please send donations to:</div><br />
<div align="LEFT" style="margin-bottom: 0in;"> Team Carol</div><br />
<div align="LEFT" style="margin-bottom: 0in;"> c/o Trinity Center</div><br />
<div align="LEFT" style="margin-bottom: 0in;"> 640 Holly Avenue</div><br />
<div align="LEFT" style="margin-bottom: 0in;"> Winston-Salem, N.C. 27101</div>gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com1tag:blogger.com,1999:blog-8238991300965214806.post-30657930844886129252011-05-31T08:05:00.001-04:002011-05-31T08:06:01.072-04:00EternalThe essence of someone <br />
<br />
is held in the memories<br />
<br />
and bound by love <br />
<br />
always to remain.<br />
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People are eternal<br />
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if they are remembered with love.<br />
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<em>R.I.P. Carol</em>gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-81180369528589121202011-05-31T07:49:00.000-04:002011-05-31T07:49:44.083-04:00MeltedIf the sun and sky is dimmer it is because the light of my life went out! I will always love you!<br />
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To Carol:<br />
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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.<br />
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Snow always melts!gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com0tag:blogger.com,1999:blog-8238991300965214806.post-66732640696546712692011-05-29T17:41:00.000-04:002011-05-29T17:41:48.184-04:00There 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.<br />
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MSA is a hell. The consequences of MSA and other alphabet diseases are HELL! <br />
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The flesh is temporary. LOVE is eternal.<br />
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We are powerless over MSA. MSA is powerless over LOVE.<br />
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I want to send out hugs, kisses, and LOVE to any and all afflicted with this DAMNED disease. <br />
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Peace be with you.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com1tag:blogger.com,1999:blog-8238991300965214806.post-226710519999779732011-05-07T08:27:00.001-04:002011-05-07T08:29:43.470-04:00Watch 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.<br />
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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.<br />
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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.<br />
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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.<br />
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!<br />
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Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.gumbypoole aka Scott Poolehttp://www.blogger.com/profile/16156958105647674689noreply@blogger.com3