One Year Ago Today

I 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.

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...)
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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:

Regret for the things we did can be tempered by time; it is regret for the things we did not do that is inconsolable - Sydney J. Harris 

or

When you look back on your life, you'll regret the things you didn't do more than the ones you did. - H. Jackson Brown, Jr.


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.

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.

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)

Always will my love for you
remain inside my heart.
No matter where you go
or how long that we're apart.
The promise that I left you with
forever echos in my ears...I'll need you always.

You were gone one lonesome day
and though I'd told myself before
you'd have to leave me soon
you couldn't stay with me much more.
Still I listen for your laugh,
your smile's forever  frozen in my mind...I'll need you always.
                                 "THE"  1971  1982

I cannot envision a time that I will not miss her so very much.
RIP - Carol Condon Poole - 09/30/54 - 05/30/11

Thanks to all!

This post will actually precede the post I am referring to, but if anyone has questions just go to next post (older).

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.

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.

Please 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.




Please help make Multiple System Atrophy film #1 at the Neuro Film Festival



A film on Multiple System Atrophy has been entered in the Neuro Film Festival.

We need your help to get enough votes to make it the "Fan Favorite", this will

mean increased publicity for Multiple System Atrophy which is so desperately needed.

This is an achievable goal if we all work together.



As of February 11th the film is in first place in the voting but the second place film is

very close behind, every single vote counts.

Ask your friends to vote, post on your facebook wall and twitter accounts, get

your teenage relatives involved so all their friends will vote too. We can do

this!!!



PLEASE TAKE ACTION NOW! GO TO THIS WEBSITE AND ENTER YOUR

VOTE BEFORE MARCH 8TH.

Please follow these instructions exactly to ensure your vote is counted



Step 1: Go to Neuro Film Festival Website

http://patients.aan.com/go/about/neurofilmfestival



Step 2: click on the VOTE NOW! tab.



Step 3: Click on Register Now and enter your details



Step 4: Check you email inbox for a verification email - click on the link to

verify your registration



Step 5: Go Vote -- Go back to Neuro Film Festival Website

http://patients.aan.com/go/about/neurofilmfestival and click VOTE NOW



Step 6: Find the “Multiple System Atrophy MSA” film in the list and click on the word VOTE



Note: If you have more than one email address you may register that email and vote again.

One vote per registered email address.



Please do this and pass it on to everyone you can.



Scott

Stem Cells - follow up

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.

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.

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: http://www.livingwithasnowman.blogspot.com/2011/05/stem-cell-treatment-my-take.html. 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. At the end I have placed some links you may find helpful in your own journey.

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.

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.

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.

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 - http://www.closerlookatstemcells.org/. 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 - http://clinicaltrials.gov/ct2/results?term=Multiple+System+Atrophy&recr=Open .

As always, have the best day you can have.

What 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?

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?

So, who would you call? Who would you visit? Who would you hug? Who would you kiss?
What would you do? What would you eat, say, buy, sell, give away, hold, or ignore?

We don't know, do we? DO IT!!

Merry Christmas!

Happy 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.

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.

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.

I look forward to hearing from any and all of you. gumbypoole@aol.com

They 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.

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.

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.

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.

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 - gumbypoole@aol.com