Monday, February 3, 2020

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Tremble Clefs Grant

I remember receiving an email from Parkinson’s Foundation (PF) regarding a program they were offering to award community grants up to $25,000 to organizations that had direct impact on the PD community.  I immediately thought about how much we could use this money for our TC group. I also knew this would interest the CA groups in San Diego and Orange County with which we have a “working relationship”.

I contacted the two CA groups and learned that they were already working on proposals, so I forwarded the information to Jim and Sun Joo and asked if we had someone in our group with grant writing experience.  They were keen on the possibility of a grant, but said we didn’t have anyone with experience in this area. Jim asked if I would be willing to do it. Though I had never written one, I had some experience with them from my consulting days.  I told Jim I would give it a try.
I read through the application and started to work on it.  I remember debating about how much to ask for (anything up to $25,000).  As I reviewed the guidelines that talked about what they were looking for, I realized that our chances of getting approved would be much higher if we could come up with a plan that involved incremental benefit to the PD community in the Phoenix area (beyond what we were currently doing).  At the same time, I thought it was important for them to know that we are completely self-funded and that a lot of work (by our group members) goes into making ends meet on a yearly basis. All this without the support or encouragement of a regional support organization, which in our case is Parkinson Network of Arizona (PNA).  Due to the nature of this relationship, we had recently applied for and received 501c3 non-profit status. This turned out to be a good thing as it was one of the application requirements.
I thought it might be a good idea to estimate the potential demand for PD services such as TC by looking at PwPs (people with PD) as a % of the national population and applying that % to the population of Maricopa County. That showed that, even with the growth of our existing groups, there were MANY potential new members.  I also cited the growth we have been experiencing year over year in our existing Sun City group and that our resources were “stretched to the limit”.
After meeting with Sun Joo and Jim, we decided to propose a plan to add a second Sun City group.  I also remembered Sun Joo talking about a group that wanted to “come on board” in the Chandler area.  So the combination of this proposal for two new groups in the context of what was already being accomplished faced with a variety of challenges became the focus of the application for a $25,000 grant.
Another factor that I was hoping would help was the already-existing significant working relationship I had with PF and previously with PDF (they had merged the previous year).  I really don’t think this affected the outcome, but they did “cut me some slack” after the proposal had been submitted by asking for additional information and clarification.
In the end, I was able to respond to these requests as a result of the hard work and cooperation of members of our group.  I think it was in April that I received word that our proposal had been approved for $20,000. They explained that they were unable to fund the full request due to the volume of worth applications they received. While there was no guarantee of ongoing support, it was clear that they like what we are doing and implied that the support could be ongoing assuming we live up to our end of the agreement (do what we said we are going to do).  The first $10,000 check has been received. The next step will be to provide a progress report in October.
Another important part of the context for this proposal was a detailed description of the benefit of participating in TC to our members including the inspiration, community, support, strengthening of our voices, multi-faceted therapy provided by Sun Joo and, most of all, the joy that singing brings to our lives.  With that in mind, I shared with PF a vision of TC becoming a national program and my opinion that they are uniquely capable of helping make this happen!
So far, so good…………..


More Time

More Time

We have all known friends or family who died with little or no warning.  Whether it is a heart attack, a car accident, or something else unforeseen, we feel badly for the person and his or her family.  Of course, there is the pain and loss associated with the event. Beyond that, we wish for their sake that it had been different.  We wish they would have had more time.  More time to spend with people they loved and who loved them.  More time to finish things that were left undone. More time to spend doing the things they loved most.  More time to say goodbye.
And yet, if we were given the opportunity to know in advance when we are going to die, most of us would probably say no.  Why ruin the time we have left because we know that the “clock is ticking”. It is something we would rather not think about because we fear death.  That is human nature.
While living with PD is no picnic, we have traditionally been told that it will not kill us.  We have been told that we will die “with” PD, not “from” it. And yet, PD is the 14th leading cause of death in the U.S.  And up to 75% or more of PwPs will develop dementia, which is terminal, during the course of their disease. And we know that aspiration caused by  PD swallowing problems can be fatal.
The following is from the Michael J. Fox Foundation website:
Will I die from Parkinson's disease?
Most doctors say that Parkinson's disease itself is not fatal. You die with Parkinson's disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinson's patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. The seriousness of these incidents depends greatly on the patient's age, overall health and disease stage.
I don’t think this information is designed to be purposely disingenuous (what a great word!), but it smacks of “word-mincing”.  By the way, similar verbiage is found on all the national PD websites
Please don’t book a one-way ticket on a “lemming express” (small arctic rodents that stampede, following each other over the edge of a cliff) after reading this.  OK, I’ll say it. We are all going to die! Big deal, right? Everybody knows that.
OK, everybody take a deep breath.  Then review my opening comments about wishing for more time.  You could still get hit by a truck tomorrow or die from an unrelated cause.  Otherwise, PD will get you eventually.  If you choose to accept the idea that PD is an “end-game” proposition, you have given yourself the gift of “more time”.  How much more is an estimate depending on your symptoms and how advanced they are, but you get more time regardless.
How will you use that time?  I came to the conclusion I outlined here a few years ago and this is what my care partner and I have done (I am 69 and was diagnosed ten years ago):
Linda and I have become “members” of the PD Palliative Care (PC) Clinic at University of Colorado Hospital.  The PC team (PC doctor, nurse, social worker, and chaplain) has helped us make end-stage choices and plans based on our preferences designed to minimize chaos-related stress when the time comes.  We both receive customized care, counseling, or other service based on our needs.

We are focused on quality of life and “living in the moment”, spending time doing things that matter to us (including PD advocacy) with each other, family and friends.
We have a strong sense of peace and acceptance about the future.
We are enjoying life and each other.
I couldn’t ask for anything more.