Brain Donation

I think I may have hit a new low in terms of writing depressing articles for my blog.  But seriously, this is something many with PD would like to know more about.

I have never been thrilled with the idea of donating body parts following death, though I always understood the need.  That has changed over the course of the last few years in a way that seems consistent with my desire to "make a difference".  Like many with PD, I have become interested in donating my brain for PD research (preferably, after death).  After all, what good is it going to do me after I am gone anyway.  My wife would probably say that it isn't doing me much good now (just kidding).  

There is an excellent article on this subject of the Parkinson Disease Foundation website at 
http://www.pdf.org/en/parkinson_brain_donation.

I found that many of the alternatives for donation involve a payment that can be substantial (sort of like shipping & handling-weak attempt at humor which this article desperately needs).  I was able to find an option that did not involve a charge at:

Human Brain and Spinal Fluid Resource Center

VA Greater Los Angeles Healthcare System
West Los Angeles Healthcare Center (127A) 
11301 Wilshire Blvd
Los Angeles, CA 90073 
(310) 268-3536 - Bank Office 
Email: brainbnk@ucla.edu

Contact them if you would like to explore this option.

The Elephant in the Room: Choices

So what do I know specifically about the progression from amnestic mild cognitive impairment (aMCI) to Parkinson Disease Dementia (PDD)?  The feedback I received from my neuropsycholgist almost three years ago is that about 25% stay the same and "less than that" improve.  I have had strategies in place to deal with conditions that can result in improvement (taking anti-depressant medication, raising my vitamin B12 & D-3 levels, and taking COQ10 & acetyl l-carnitine, both anti-oxidants linked to brain health) for about three years.  While some of these were clearly beneficial, the fact remains that I have progressed to aMCI.  I have also learned that it is estimated that 10-15% of those with aMCI progress to dementia annually.  The bottom line is that my best guess is that there is (at least) a 60%+ chance that I will progress to dementia in the next five years.  I certainly hope that doesn't happen.

Some may wonder why I put myself through this exercise.  Clearly, there is a fair amount of SWAGing (scientific wild ass guessing) going on here.  It may appear that I am masochistic.  The first and foremost reason is that it is important to me to know as much as I can about all aspects of PD is so that I can make a variety of plans based on different plausible scenarios.  This also allows me to advocate for myself more effectively regarding my healthcare.  I hope that this will reduce the burden on my wife in the future.  

Armed with this unsavory information, I have had some choices to make.  Do I simply sit around feeling sorry for myself or dig a hole and jump in?  Of course not!  The path I have chosen is to remain engaged in ways that are important to me.  I received the following update from Johns Hopkins this week:

"Staying mentally active by engaging in activities that challenge and stimulate the mind may be a key factor in maintaining memory and other cognitive skills, according to research from The New England Journal of Medicine and the Mayo Clinic."

Apathy is a problem for many with PD without adding possible draconian (sorry for the big word, but I do love it) outcomes to the mix.  As I wrote in an earlier post titled "Having Parkinson's Isn't All Bad", I decided a few years ago that I wanted to spend time trying to help others affected by PD.  The research I had done put me in a position to share information with PWP's and care partners that might be helpful to them.  The articles I have posted on this blog since then hopefully demonstrate my commitment to this type of activity.

In particular, I plan to stay engaged in activities about which I am passionate as long as possible.  I believe that staying connected in this way is important (see Top 10 Recommendations for PWP's).  I just completed a project along these lines that I will share.

Towards the end of this past July, I learned about a patriotic fundraiser concert called "Homeland" related to the Waldo Canyon fire in Colorado Springs being planned by the Tri-Lakes Music Association.  I had participated in their Christmas cantata programs in Monument while living there starting in 1998.  The founder of this group, Robert Manning, is  a motivated, fearless, caring, and musically-talented individual as well as my former neighbor.  These programs feature a choir and full orchestra who participate on a volunteer basis.  I participated in one of their three concerts and found it to be an extraordinarily moving experience.  Afterward, it occurred to me that many of the songs in the program were ones we had performed in my community chorus at Gleneagles Village(GEV) in Highlands Ranch.  I asked Bob if I might be able to borrow the program materials (which included music books, DVD with professionally produced audio and video tracks, rehearsal CD's and more) for use by my chorus without violating copyright laws.  To my surprise, he told me that he had inquiries along this line in the past and could loan the materials to one person at a time (in this case, me)!  I took the idea to our chorus and they loved the idea, so we started work on it in August.

Here is an email I sent to Bob following the concert program that was held at our community clubhouse on November 10, 2012:

Hi Bob-

Bill and/or JoAnne will be dropping off the materials you so generously loaned me for Homeland. They participated in our program last Saturday at the GEV clubhouse. We started working with the practice materials in August and rehearsing in September. I underestimated how challenging this would be on a number of levels. We ended up using a large projection TV, amp and speakers from a chorus member, sound board and monitors from the son of a member (who ran the system for the program). The last piece was added after our "dress rehearsal" last Friday.

Some time in September it became obvious that I was going to have to conduct the program, which I did. However, this was a real challenge due to the various PD-related issues I have with cognitive slowing, multi-tasking, etc. However, everyone had worked so hard and they were so enthusiastic that I kept pushing on. Also, the word had gotten out to the community and there seemed to be some excitement at that level as well.

We were able to add the sound board and monitors to the mix in late October, which helped a lot. However, I began to realize that some of the music was subtle enough (especially in the last 3 songs) that I could really use a direct feed to allow me to hear through ear buds or headphones. Linda and I were gone to Buffalo for a week up until the Wednesday before the program. I was able to borrow just what I needed from the music director at my church (part of a new $800 system). I tried a wireless headphone system provided by a member at our dress rehearsal, but was unable to use them due to interference. As a result, the final rehearsal was far less than perfect with multiple stops and starts. Following the rehearsal, I showed our sound guy the product I had borrowed from my church and he was able to hard wire it from the sound board to the connection which I placed on a tray table I had set up next to the music stand I was using it to conduct. It worked perfectly and used ear buds so that I could listen directly to the music through one ear and hear the choir through the other. Still, we had never rehearsed the program without having to stop. I learned that 150 people were signed up to attend and was faced with the real prospect of a "train wreck" that would be demoralizing and humiliating to all of us.

I had gone over the program a lot when Saturday rolled around. I made lots of notes in my book which allowed me to react as well as possible. We all wore flag ties and scarves I had picked up through Amazon and ebay. Close to 200 people showed up, so the place was packed! Thankfully, the direct feed made a big difference. While we got out of synch briefly a couple times, we went through the whole program. I really wanted to nail "Battle Hymn" (which we had never done in rehearsal) to end the program, and we did. The program was a huge success, with many people telling us that this was by far the best thing ever done in our community.

I know you are in the midst of preparing for another Christmas program. I am sure it will be a success as usual. Thanks again!

Blessings,

Kirk

Bill, JoAnne & Kirk after Veteran's Day program

In hindsight, I don't know what I was thinking when I took this on.  I was not at all sure my GEV chorus would want to do this, but when they got excited about it I decided to go for it (another blog article).  At some point during September I was starting to feel overwhelmed and knew that our chorus members might not understand my need to plan everything down to the letter and the mistakes I was making due to slowness and memory problems.  Some issues were coming up with the group, so I decided to "come clean" with them and shared the fact that I was having particular types of cognitive problems. From that point on it was clear, though nothing was said, that I had their compassion and support.  This redoubled my dedication to seeing this program through in spite of the difficulties.  The outcome and reaction from both the chorus and the community made it all worthwhile.  

In the process, I learned that I was still able to do some things, even though it was hard, that I would have thought beforehand exceeded my  "new" capabilities.  I also learned that it sometimes helps to share your problems with others.  Ironically, but not coincidentally (in my opinion) one of the songs in the program was Lean on Me, the lyrics of which say it all.  As a result, I intend to "raise the bar" for myself going forward (within reason) and continue to engage.

For me, faith is the most important piece of the puzzle.  This takes all the pressure off me because I know that my family and I are surrounded by God's grace and that we have nothing to fear.  This does not mean that I am absolved of all responsibility for making good choices.  I can honor Him by attempting to do this.  However, when I get anxious about what lies ahead, I stop and remind myself that He will take care of us no matter what happens.  What could be better than that?