46: Temperance

Last night Wendy and I went to see yet another in the string of amazing Stephen King penned movies that derive from a short-story (or novella). While I’ve not read much (if any) of King’s works since the heyday of the 80’s, I have been a huge fan of the movies Shawshank Redemption, Green Mile, Stand By Me and now the utterly beautiful Life Of Chuck. Somehow King’s horror novels have never really successfully made the transfer to the screen for me - but movies adapted from his non-horror shorter works have generally been transcendent. Life Of Chuck, a life story told in reverse, explores the themes of love, life, marriage, music, the cosmos, death and the end of times. The acting (there are no stars to this movie - it is truly an ensemble piece, with some great names attached) is excellent, the music, sets, cinematography and direction wonderful, and the overall theme of the movie is positive and uplifting. Super high recommendations on this one!

Medically, a few weeks ago I started a new drug called Donepazil. It’s the oldest existing drug for Alzheimer’s patients, and while it is not a cure (nothing is) it is a symptom abator. I’m not really sure I needed it - but my new neuro seems to think it might help. Unfortunately, all it did was give me super vivid dreams, and I basically couldn’t sleep due to active brain happenings. Far worse off than before, so I stopped. I’m now two days into Memantine, which is a similar drug - perhaps generally for folks a bit further along than I, but I think Neuro is trying to combat the ADD a bit with these drugs. I flat out refused any uppers, so no Ritalin for me. We’ll see. I’m a bit dizzy, but that symptom is supposed to abate. Hopefully I won’t fall off a mountain tomorrow (more to come on that…) I’m sleeping OK though.

I found a logo, which I’ve used for my business card, that I think sums my entire existence up in a single drawing. It’s this:

I’ve never gotten a tattoo before, not quite stumbling across an image I’d want to carry around with me for the rest of my life. Like, I’m really happy to not have any album covers or band names or logos. But this is something I’m seriously considering inking on my body.

I did another talk last week about an hour from home. It was at an assisted living community and went, I think, really well. You can watch most of it here. I’m getting better at this each time, and am actively looking for more places to share my story. This is what is making me most juiced now. Being an advocate for something you really believe in is a great thing. So, in that light:

• I’ve been reached out to by the local Alzheimer’s Association to be interviewed for a podcast. I’m thrilled to have yet another way to tell my story. More on that when it comes as well.

• Son Jonas has organized a team to do the Walk Against Alzheimer’s in the Phoenix area. I think that's a lovely gesture and I’m proud to be his inspiration. Team Terwilliger is soliciting donations to the walk here. Wendy and I will be making the flight out to walk with them. The weather in Phoenix in November is not supposed to suck. Of course, Wendy and I are still walking locally as Team ALZBlog, and our donation page can be found here. For both teams, every little bit helps. So do additional team members. We’d love to walk with you for this great cause. We’re meeting with the local walk organizer this coming week to discuss how we can better fundraise and what other help we can offer.

• We’re walking for the Alzheimer's Association tomorrow as well, although not soliciting any donations. Tomorrow is The Longest Day, and Wendy and I will hike Mt. Monadnock in Southern New Hampshire. We’ll be decked out in purple and spreading the good word. We’ve been wanting to make this climb for some time now, and now seems as good a time as any.

I will add here that I received notice that I had not been chosen for one of the 10 Alz.Org national advocate positions that I had applied for. I spent some time with my feelings hurt, and then realized that it was probably for the better. The application itself was the launchpad for me choosing to get more involved, and my local organization has been tremendously supportive of my work here, and in my speaking engagements and in the trip to DC last week. So… It always hurts not to be wanted, but - like with this disease - I am going to turn this into a positive. We’ll see what I turn up. It’ll be something for sure. Even if it’s just under my own name. My voice shall not be silenced (not that I think the association is silencing me - I’m just being overly dramatic here).

I’m still waiting on word from several clinical trials. One, that was supposed to start on Monday, forgot to put me on the schedule. Seems as if someone else might need some Memantine, hmmm? There’s another - purely diagnostic - that will take me (and give me the PET scans I so desperately want) but told me that there are restrictions on how much radiation one can get in a clinical trial setting. So, I’m waiting to hear first if I get into a Tau/Leqembi trial. To echo Tom Petty, who I’m not really a fan of, The Waiting Is The Hardest Part. Interestingly, that is one of the themes of Life Of Chuck as well.

We went to a concert this past weekend with two new friends. We were introduced to them by The Alzheimer’s Association when we first landed, face down and twitching, on this roller coaster. We’ve spoken via computer several times, and this is the first time we’ve actually met. It was really nice! The concert was good too! Two bands I’d never heard of before - The Bones of J.R. Jones, a down and dirty country rock band and Nigel Wearne, from Australia, who performed a solo set that was captivating. I’ll be digging deeper into these two artists for certain. Thanks friends, for the introduction to these bands! As I’ve said before in these pages, it’s pretty rare for someone to point me at something I’ve never explored musically, and I’m always appreciative.

And now we get to the sometimes grizzly tale of the Longest Day. And it was the longest day my friends, beginning when we left the house at around 7 AM for the 1.5 hour drive to the base of the nearly 3,200 foot (975 meters for my readers who use sensible measurements) Mt. Monadnock, and ending nearly 10 hours later as we departed the emergency room. It is very interesting that in an earlier edit of this particular post I used the phrase “Hopefully I won’t fall off a mountain tomorrow.” Because, in a sense, I did. Not off, per se. On, or down would be better, but still I think I’m becoming some level of psychic! Is that a symptom of Alzheimer’s?

I want to go back a little bit in time first. Years ago - several before my diagnosis, I noticed that I was becoming a bit less steady on my feet. I was gripping handrails on stairs, a little less surefooted than I had previously been, perhaps less comfortable with standing on the edge of a cliff than before. I’m not scared of heights, but I feel a bit wobbly. I’m often “spinny” when I first awaken and need to get my feet really firmly planted on the ground before attempting to walk to the bathroom. But for some reason, I’ve never attributed it to Alzheimer’s nor have I mentioned it to a neurologist. But I will now… I was asked at my last speaking engagement if I was noticing any balance issues, and I said no. It’s weird how the mind works (or doesn’t work in this case…). That plus the Memantine dizziness seems like it could lead to a disaster, right? Well friends, let me tell you…

We started off, chipper and hale!

Ready to take on whatever challenges might beset us. We were proudly repping the Association in honor of the day. The first parts of the trail are a semi-steep but easy walk.

Sure, it’s rocky. But that’s normal for a mountain, right? I had my poles (which I had gotten when I started to notice the decrease in steadiness) and it was smooth sailing. For a time. We were huffing and puffing a bit when, to our chagrin, a young man came running by us. I mean really! The NERVE! He yelled back that he was in training to run Grand Teton. Finish this tale, my gentle readers, and know now that running THAT glorious mountain shall never be in my future. We made decent time stopping to rest or hydrate on occasion.

And yet, as a sign of our slowly aging bodies, we were passed more than once by hikers younger and more fit than us. We’ve been hiking for years, and we rarely got passed before. Not really a problem, but noticeable none the less.

We stopped to use my altimeter and take in the view as we started encroaching on the tree-line.

The walk got a tad more challenging, forcing me to put the poles away, and hands became necessary for

gripping the rocks. But we were still having a great time. We love to be in the woods and moving. We just need to do it more! (And more sensibly…)

The view was totally worth it though, wouldn’t you say?

And, eventually, we reached the windy summit,

and had a bite to eat in a sheltered alcove. At that point Wendy revealed that she had a surprise for me. Rooting unceremoniously through her back pack she withdrew a piece of paper and read:

May the abundant light of the Summer Solstice bring warmth and clarity to your mind, just as the sun warms the Earth.

May the long days of sunshine fill your spirit with comfort and peace, reminding you of love and connection, even when memories fade.

May the energy of this longest day be a source of strength for your body and spirit, helping you to find moments of peace and well-being. Let your body feel strong, capable and fierce.

May you find joy in the simple things, like the warmth of the sun on your skin, the beauty of nature, and the gentle rhythm of the seasons.

May your writing and sharing elevate you further and give you joy. You are worthy of so much, and you have much to share.

May you feel the enduring love and support of those around you, like the constant presence of the sun in the sky.

May we all rise to the occasion and be our best selves when challenges come so as to guide you through troubled times, and to celebrate your victories, no matter how vast or small.

May you be blessed with moments of connection and understanding, even without the need for words or specific memories when that time comes.

May the light within you shine brightly, reminding you of your inherent worth and the love that surrounds you.

And may you cast your light out into the world for the benefit of others with great abundance and strength on this journey of the mind, and let your passion and energy seep into the souls of others.

On this Summer Solstice, may you find comfort, peace, and moments of joy, wrapped in the light of the sun and the love of those who adore you.

Which she wrote as a prayer for someone with Alzheimer’s on the Summer Solstice. In fact, I believe that’s exactly what she typed into Google AI to generate a base, which she edited into something more to her liking. No matter the source, the thought is incredibly moving and is just one of the reasons I rely on her so much. We’ll come to some more of those reasons pretty shortly in this tale, I’m afraid.

We took the ALLEGEDLY easier path down. And maybe, just maybe, if it hadn’t been so rainy, there wouldn’t have been huge puddles to navigate through, and… maybe (just maybe) the rocks wouldn’t have been so slippery, and then maybe (but knowing me - I don’t know) I wouldn’t have slipped, tipped forward and slid down a bunch of rocks. I ended up about 15 feet from where I started, face down in a puddle. I got up, and (at that time I thought) I only had a couple of scraped knees. It wasn’t ‘till we made another rest stop further down and I took off my sweatshirt that I noticed my arm:

Rest assured, this is not a normal look for my forearm. It didn’t hurt terribly, but wisely Wendy, who had noticed my hand beginning to swell, suggested I take off my wedding ring. It almost didn’t come. (Normally it’s fairly loose.) I rubbed an ice cube on it for a few minutes, but there was nothing else to be done, except to continue our slog down. A few moments later, we came across a family going up - with a little boy, around 8 who was wearing pajamas. THAT, people, really gives you a taste of your own mortality!

I fell twice more on the way down, once slipping backwards onto my butt in a puddle, and another time when my legs just plain refused to hold me any more. The trauma of the falls on my muscles was (and remains) severe. I feel as though I was in a car accident. And yet when we came across a group of young women who thanked us for walking for the cause, it was all worth it.

It was at that point, and I started to require Wendy’s hand or shoulder every time I had to step up or down. I was fine on even ground (even sloping) but I would begin to lose my balance quite frequently. It got a little scary. Wendy was carrying both backpacks and supporting me as she struggled her own way down. I could no longer grip a tree or rock as I passed to support myself. As I said, I rely on this woman completely. And yet… we made it down. Still capable of smiling. But perhaps that’s because the car and air conditioning were scant steps away.

We had decided, sometime back, that I was probably a good candidate for the emergency room to rule out any breakage. So, we drove, nearly 1.5 hours to one near our house, spent around two hours there and I was sent home, by a disinterested doctor, after being x-rayed, with advice to take some Tylenol.

And today begins another day, which I will refer to as #TheLongest(Recovery)Day. I’m sore - I hurt from neck to feet, but my injuries are, thankfully, relatively minor. However, I learned a hard lesson yesterday, and temperance is going to become a virtue I try to model for the future.

And, thanks for reading…

Dy