First thing is, I need to apologize. It has been a number of weeks since my last post and Podcast. No, I haven’t lost my creative juices and I certainly haven’t not been positive. I have been preoccupied with things that I want to talk about today.
The first thing. I’d like the cover is what I have been doing for the last year 8-9 weeks.
Early in my diagnosis, Dr. McD0nald, my Dr. at Cleveland, wanted me to take physical therapy, occupational therapy, and speech therapy. My diagnosis came right at the very beginning of covid
As you remember we knew little to nothing about Covid during isolation and I wasn’t willing to take a chance of being around others given, I have both a disease which weakens my immune system and LBD. So, I choose to put off each one of those things. But starting in early October, I started physical therapy and occupational therapy and then in November I followed up with speech therapy.
a little while later I’ll tell you about how funny our medical system can be when it comes to just getting the things that you need.
During the last 8 weeks, I have learned a great deal and I want to share what I’ve learned. If your doctor prescribes PT, OT or ST do not hesitate about doing any of those three or all.
In my case, with Lewy Body dementia and Lewy Body with Parkinson particularly attacks the brains cerebellar functions.
The Cerebellum gives us the ability to maintain balance and other things are affected including information processing, perception, thought, and language. the limbic cortex, which plays a major role in emotions and behavior. The hippocampus is essential to forming new memories.
The effect on balance can be measured in a Balance Box. This is a box where the scenery is fixed, and the floor moves under either the right or left foot. But not worry from falling you’re hooked with a parachute like harness so you can’t fall.
The purpose is to assess which part of your balance is most affected. By changing your position and moving the scenery, the physical therapist can see what happens when you’re not on even footing. I found being in the box very unpleasant, but I imagine if you don’t really have anything wrong with you it is not an issue. This diagnostic tool helps them know how to help you with your balance issues which force me to walk with a cane to address balance, so I needed this service give me that extra help with my balance. I still use a cane, but I walk well on straight even surfaces, but uneven surfaces are where I get in trouble.
Physical Therapy made me in tune with what I needed based upon the box and the PT. PT clearly made me be aware of what balance issues challenge me. I need to be aware of my balance system to help me compensate for going uphill. In some ways, unlike a little kid and fortunately for me, falling and starting up again like a little child does while learning to go uphill does not work for me. so, I have to be very careful, and it is important that I know my weaknesses and where I need to focus my attention.
Occupational Therapy (OT) can cover a lot of things like… your safety issues in your home. It can cover everything, including handrails which I installed when Christie had surgery as well as other places in the house. Other things like rugs where you can trip. Finding those are just the tip of the iceberg for OT
You remember the drawing of the iceberg where just the tip is pointing out? The same is true of Occupational Therapy. OT deals with a lot of other things. My form of dementia affects my processing speed as well as my cognitive memory. These are things that affect my ability to drive, so I needed to learn things to adapt to that change. One obvious change, is that I am driving slower.
Now I am that old man nobody wants to get behind. If you see a blue car with a big Navy emblem in the back, I’m sorry.
I learned that through a study of my processing speed, I can’t always depend on my peripheral vison to tell me what is on my right and left.
I have to look right and left. All these things came out during testing, and we worked on in Occupational Therapy. There was a board of lights and buttons. The board proved that I cannot use my peripheral vision to see my right and left. The difference between using my peripheral vision in a one-minute exercise of finding the lights go on in front of my head, watching the lights and touching the button below them went from 20 per minute to 60 per minute when I turned my head and didn’t depend on my peripheral vision.
I learned how to improve my speed or have management strategies that allowed me to improve in term of how I process information both mental and physical in terms of moving things.
This type of improvements comes in handy when you’re looking at hand eye movements. We went through a number of exercises to improve that, and my Occupational Therapist even wants me to do things with my hands that continue to improve eye-hand movement in particular: models (my favorite) but we’re actually out here in sunny California in Carlsbad where Legoland
Legos were never something I grew up with. When I was a kid I had Lincoln Logs, Erector sets and models. I am looking into building model airplanes one’s that fly but I feel that my plate is full, and I need to focus my time back on my Podcast and Website before I jump into Legos.
We will check out Legoland here soon. Maybe I’ll get excited about them. Again, it’s about taking instructions and making coordination between what you think you want to do with what is in your hands and your eyes direct, again, it is about processing speed.
With Alzheimer’s, it would probably be more likely to be about memory. Each type of dementia will call for different types of Occupational Therapy.
Speech Therapy is where the funny part comes in, I was prescribed all three of these Occupational Therapy, Physical Therapy and Speech Therapy shortly after I was diagnosed. When I took the same prescriptions (from two doctors at Cleveland Clinic) the approval of course had to first come from Medicare. PT and OT were approved but they came back saying no to Speech Therapy. The letter of explanation said they didn’t believe that speech therapy was appropriate because with my disease I will not improve because I was dying. This is Medicare for you. When you think about it on that basis, I probably should never be prescribed any medication because in the end I have Lewy Body Dementia, which is terminal, I will never get better and ultimately this would not help.
This is just more silliness from our government and intermediate insurance
My Speech therapy team refiled the claim a couple times assuming that maybe they made a mistake. After two more rejections, they wrote a long explanation of how speech therapy will benefit me and how I can get better even though it ultimately will fail. Finally, Speech Therapy was approved. With inter-evaluations just to make sure I would improve.
I learned a lot about speech therapy. Speech Therapy isn’t just about articulating the words, speech therapy for me particularly was learning how to think before I speak. To understand that my thought process is diminished and that that sometimes it takes what is in my head a while to get to speech.
Poor articulation is caused by the struggle with words and thoughts. The thing you need to do to deal with that is to do exercises that help you with taking the time it takes to hear something, thus improving continuity in processing.
To aid in this education, they had lots of great puzzles, a number of them except for the test I have on my iPad. The fact that they are available on your iPhone or iPad helps you with your cognitive processing. I have half a dozen that were prescribed by my Speech Therapist and another half a dozen that were prescribed by my Occupational Therapist.
Hopefully, I will be able to more clearly articulate the things that I’ve learned as well as those tools that can help you improve your cognitive processing.
So those were the central things that I learned during my delay in Podcasts this and more, but I stop with this.
I predominantly work best in the morning, most of my physical therapy sessions were also in the morning again that is a time that I normally do my podcast and the writing for Wanderinglite.com My sincere apologizes for the delay, but I wanted to share what I’ve learned over the last eight weeks.
I also want to share some of other the things I’ve learned. As some of you know, I am part of an organization focused on positive care for people with dementia through Teepa Snow. During that time, I also did a presentation at the national conference. I had lots of great questions from people in the audience who are providers for people with dementia both clinically and otherwise.
Now the group of people that I work with and Teepa and her staff thought we could do more this year. We open up our meetings to a broader audience that will cover a number of important topics. I’m looking forward to being part of that group and the topics that were going to cover. I will give you a link to Teepa’s organization with the topic,
Last, the other reason for my delay is vacation travel, which I’ll cover travel later on about dementia and travel in a separate post. I am glad to say that we are finally in California, but best so far was I was able to check off one of the items on my bucket list, the Grand Canyon. I’m still in augh of what I saw. The beauty God has created on this magnificent earth just never ceases to amaze me. As I literally look out on the Pacific Ocean, it is just so amazing, especially when you see it with an artist eye. I have a double blessing of seeing God’s handiwork not only from nature’s point of view or walking among his handiwork but also seeing it from a point of detail that you we can easily miss just simply moving around in life.
May God bless and keep you and give you the strength to be thankful and positive in all situations.