44: #AlzForum Day 1

Before I start, I want to say that the new North Mississippi Allstars album, Still Shakin', is their best studio album in years. Sure, it’s an unrepentant homage to their first (and probably still best) album, the 20 year old Shake Hands With Shorty, but it showcases their growth and maturity as artists, while still managing to bring in the rockin’ grooves they’ve dispensed with on their previous few albums. The live show is always amazing, but for some reason they’ve really never hit it in the studio. This is a good one, and I enjoyed my first listen to it in front of my light kit the other morning. It is always odd to me that Luther Dickinson, the singer and lead guitar player (who I’ve mentioned in the past), who is one of the best living slide guitar players, never really showcases that art on his albums. I’d love to see more of that in the future. But still a good album that will get repeated listens, unlike their previous few.

Now, onto the meat and potatoes of this post. Today was the first day of the #Alzheimer's Impact Movement Forum in Washington DC. Put together by the truly wonderful #Alzheimer's Association, it’s a gathering of advocates all dedicated to one thing. To #ENDALZ. To that end, they have brought together the single largest gathering of people dedicated to eradicating a disease of all time. There are over 1000 people attending this three day event, and on Tuesday, we’ll all be in the halls of the House and Senate for one purpose. To convince our government to continue to fund (and not cut already agreed upon appropriations) Alzheimer’s research and to maintain access to healthcare options for the millions who stand to lose theirs if the proposed cuts to Medicaid go through. Considering that many of those cuts have already been greenlighted by the House, it is incumbent on us to convince the Senate to vote the proposed bill down - and to convince, then, the House members to rewrite the bill in a way that keeps funding alive. Interestingly, the organization really does view this as a truly bipartisan process (which, currently, it needs to be in order to pass - or be rejected). The other interesting thing is that Alzheimer’s care is currently very well funded, and there have been many major bills passed in the last year - with bipartisan effort - all due to the efforts of the advocates (of which I am extremely proud to count myself as) of the Alzheimer’s Organization.

A couple of things about the #alzforum thus far itself. It was only half a day, considering it was a travel day for most people (Wendy and I left our house at 6AM to fly (delayed) to Baltimore and then take the train to DC and then walk a mile (our choice) to the hotel and immediately fall asleep.) When we went down for the meet-and-greet and then the introductory presentations, we were surrounded by a sea of beaming, excited purple-wearing individuals of all shape, size, color, creed, sexual orientation, gender and age. There were young adults advocating in honor of a parent (or grandparent) who had passed, older people honoring a sibling, uncle our aunt, single people who had lost a spouse, politicians, individuals who just cared, medical researchers, and of course, people like me and Wendy - those currently being affected by the disease (but there were surprisingly few of us - less than 50 people actually living with Alzheimer’s, I’d guess, which really surprised me in a way) and their caretakers. The overall mood of the event was/is positive and happy. Everyone there is thrilled to be supporting a cause in a positive way, and truly hopeful that they can help bring about change and #ENDALZ once and for all. Lofty goals. But completely achievable - with work.

We learned that the state of Illinois (because their Lt. Governor came to speak) had recently passed a law requiring private and public insurance to pay for diagnostic tests and treatments. That several states had created programs and laws requiring training in dealing with dementia for doctors and emergency responders. That laws regarding transparency in care homes were being passed and enforced. And I learned that there are many thousands of people - indirectly - looking after me. I am not alone (not that I ever really thought I was) in this fight. We heard stories of people’s life altering medical issues, and the steps that their families had taken to care for them. We heard of devastating loss, and of powerful love. I’ve made friends, had conversations, shared the blog link, and generally been engaged and engaged with! Wendy too.

It was a truly inspiring afternoon, and I’m really looking forward to the full day of it tomorrow. And now, I’m exhausted and going to sleep.

But first, this: I’ve spoken before about the Beacon40 light kit that I use. It’s a passive light therapy, and I use it almost every day. A while back they asked me if I’d be interested in being interviewed, and of course I said yes. Here is the article about me that came out just this week. I highly recommend this light, even if you don’t have Alzheimer’s.

And… Really…

Thanks for reading,

Dy