The Sine Wave Continues
Editors note: The author references blog posts and interviews throughout the article. You can check out Tony's previous interview with AlzheimersDisease.net here.
That is actually a good thing. When asked, how Cat is doing, I always reply she is like a sine wave in slight decline. Some days are better than others. Rarely do I see sharp declines but in every case, I will see within a month or two an uptick on what she can still do or in regards to her behavior.
Unfortunately, about 3 months ago the downward turn of the sine wave began and continued until about two weeks ago. From time to time I would record how she is doing on a daily basis but after a while, I would find it depressing so would delete the document. So that is why I can only give an approximation. As you know I do post to my blog from time to time on her condition but usually, I am talking about something positive like this one.
Stages of Alzheimer’s
There are two different scales they use to track the progress of the disease. One is 4 stages and the other is 7. I tend to use the seven stages. 1 and 4/7 are the same on each. 1 is when the person actually has the disease but does not know what it is or in some cases has not showed any signs of ALZ. 4/7 are when the person is basically bedridden.
For Catherine she has been bouncing back and forth between 5 and 6. Prior to 6 months ago, mostly 5 and within the last 3 months, mostly 6. I will not go into detail what that all entails.
Holding off stage 7
As you know I am always looking for ways to hold off stage 7 as long as possible and to continue to enjoy life as much as we can. I have mentioned in an earlier post on us doing the Doctor Dale Bredesen protocol and you can read about what is involved here.
Many of his recommendations we were already doing and our lifestyle basically revolves around his suggestions. In Atlanta we were able to find a practice that follows his protocol and we had plenty of blood, urine, etc. taken and analyzed. As best as possible, I give her the recommended supplements but did not see any improvement over time. In some cases it can take 6 months or more and usually works best for folks early on.
Cat's positive response to movement and socialization
Two weeks ago I met up with my sister, Gwen; my sister-in-law, Joan; my son, Shawn; my daughter-in-law, Cassie; and my two grands, Luca, who just turned 7 months and his older sister Lily, clocking in at 2 1/2 years old. We spent a lovely week in Washington, VA, aka little Washington. While there we also were able to have lunch with Karen and Aprille from previous Marathon Tours and Travel trips. They live nearby in Sterling, VA.
I gave everyone the heads up on the recent decline of Cat so they would know what to expect. I was also looking forward to the help that each could provide me since by this point I was pretty worn out. I have written about the importance of taking care of oneself in the past and you can review that blog entry here.
Not unexpectedly, I saw an immediate up tick in Cat’s cognition and behavior. I talk about the role socialization plays and benefits for folks with ALZ in my book Running All Over the World, Our Race Against Early Onset Alzheimer’s. The negative effects of isolation due to Covid have been well documented.
Thinking there might be more to this event rise on the sine wave roller coaster I observed her and my family members very closely. I also took a hard look at the past two weeks and noticed that our typical exercise routine had been taking a backseat to the cold weather we had been experiencing. We did do a 10k back on February 12th in Mesa, AZ but besides that, nada.
I won’t go into all that I have discovered about exercise here but, once again, you can reference my book or one of my recent blog entries on the benefits of exercise not only on those already have ALZ but also how it can delay the onset.
The winter months are tough for us and especially the last two years since we usually cruise the Caribbean on and off during the winter months prior to Covid and have not done so since. No one likes to bundle up to go for a run and it is especially tough for me since I now have to dress and undress Cat.
My observations of Cat with family also brought an awareness of how we have been typically been spending our days and the comparison on how are days were spent with family. One thing I did notice was the lack of TV. It is not recommended that folks with ALZ in the later stages watch large quantities of TV, especially the news. They are overly sensitive to the negative stories and have a tendency to think that these things are actually happening to either themselves or their family members. Unfortunately, I have not been very diligent in that regard. In contrast when the TV was on in VA it was mostly kid shows with a lot of singing and Lily was always trying to get everyone to join in with her.
Research continues: benefits of music
As my search continued to find what is best for Cat I ran across two articles on music and its benefits for people with ALZ.
Here is the first one from Greg O'Brien called "How Music Can Mend Minds". The second article is "Ask the Doctors: Incorporate music to visits with Alzheimer's patients".
These articles brought back memories of taking care of my mother. My sister, Gwen, would always bring an updated play list for her to listen to when she visited. I would make sure she listened to it also during my visits. It also reminded me of Catherine and I’s motor home trips when we would always have the radio playing the oldies.
So with all this new information in hand, I made a new plan of action moving forward. Now we have the TV on sparingly with comedy shows being the dominate format to watch. In the car, hotel, during runs and walks and even on airplanes music will always be playing. Mostly music from the 70’s and 80’s.
The new plan in action
We now dress every morning, except for travel days by plane, for exercise. We throw sweat pants over top of our running shorts or tights thus always ready to go for a run or long walk. That does require me to change our clothes three times a day but it is worth it if I can keep the lines of communication open between her mind and body and thus keeping her mobile as long as possible.
Lastly, for me to seek warm environments as much as possible. Right now we are in Tallahassee, FL on what will be our first ever month long road trip by car. The plan is to stay here for a week then move over to Pensacola, FL for a few days then on to Gulfport MS for state 42 for half marathons. This one with Mainly Marathons, our first in 4 months.
Then head back north to make it to Bluefield, WV by the end of the month. Half Marathon number 43, once again with Mainly. Unlike us, only doing two races with them, we have a friend, Ernst, that will do 11 Marathons in 11 days. That will be 4 states with the Gulf Coast Series, and another 7 with the, Appalachian Series.
Plan B, will be for us to bail out when we head back north and drop the car in ATL. Then fly to Richmond and pick up Mainly in Bluefield. I can only drive the equivalent of 4 hours a day which actually takes me 6 hours when you add the stops about every hour to stretch me legs and get some air and of course some Starbucks.
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