This past weekend we traveled to Seattle, and I saw my neurologist yesterday. I was specifically concerned that my balance has gotten very bad, and I've begun to shuffle like men I know that are 10 years and more older than I am. It's keeping me from some things I enjoy that require physical agility, such as going places for photography. I haven't fallen yet, but it seems like a matter of time. But something very unexpected (to me) came out of the visit.
In the past year I have flown twice to the East Coast, once with my wife, and once (in August) by myself. On this past trip I was shocked by the number of people offering me their seats or helping me with my bags on buses, on the airplane, in the airports, etc. It didn't happen on our trip in the spring. I guess I have begun to look really, really old and frail to people, although I feel plenty strong at the gym, working out on the treadmill and with weights. The problem is that my balance issues cause me to shuffle and appear a lot more feeble than I am. And I look increasingly awkward getting up and down stairs.
If you read Beating the Dementia Monster, you know that the very first sign of trouble for me back in 2013 was problems with balance. They sent me for physical therapy, where I learned very effective habituation exercises that gave me great relief. Following 10 minutes of exercises, the relief would last three or four days. But that stopped working just about a year ago. I have been able to systematically evaluate my meds, and I know they aren't the problem. Or rather, I've been able to stop taking the ones that have clearly contributed.
During my visit I met a new colleague of my neurologist who specializes in movement problems, such as with Parkinson's disease. She did most of the examination, and then the two neurologists collaborated on trying to find a resolution.
One very good outcome is that I will get another MRI. My last one was in 2018, and I am personally interested in physiological changes in my brain that research shows may have come as a consequence of my lifestyle changes. I'm specifically hopeful that my hippocampus may have grown.
However, they are interested in a possible connection between my balance problem, a chronic cough that I'm trying to resolve, and visual migraines (more properly called "scintillating scotoma") that I experience daily. I had always called these "ocular migraines" (more properly called "retinal migraines"), but they are not the same. Ocular migraines originate in the eye, while visual migraines occur in the occipital lobe of the brain; in the back, where the optic nerves plug in. Ocular migraines affect only one eye, while visual migraines affect both eyes simultaneously.
I will look into this further, but I'm thinking there may be a connection between visual migraines and Alzheimer's disease. A quick Google search suggests there are. As we noted in Beating the Dementia Monster, one of my early challenges was being unable to drive, likely due to Benson's Syndrome, also called posterior cortical atrophy. My occipital lobe was under attack, and my brain was having trouble forming images in my mind using information from my eyes.
Both of these phenomena are associated with migraine headaches, but I'm very fortunate to be in the minority that does not get the headache part of the experience. So it ends up being kind of like what I imagine an LSD trip might be like, with brightly colored shimmering shapes all through my field of view. Here are some artists' reasonably accurate renditions of what we see when we're having one. (Some of these incorrectly confuse visual migraines with retinal migraines, calling them ocular migraines.) Most of my episodes last about 20 minutes.
Yesterday I had one while we were on the freeway returning from Seattle. (Speed limit 70 mph.) A rest area came up quickly, so I pulled into it until the episode has passed.
But I've also been trying to resolve a chronic cough. The cough comes as a result of excess mucous production in the nasal cavity. The first ENT specialist I saw about it a few years ago said that the solution was some significant surgery, but that it hadn't helped some of his previous patients. So he wouldn't do it. Later, I was told that the surgery involved removing a nerve connecting the nasal cavity to the brain. My new ENT suspects a neurological component to the problem, and he is pursuing that angle. The neurologists are also picking up on this theme. It's why they think a new MRI is called for.
The neurologists are both of the opinion that my intermittent fasting routine may be contributing to the problem, at least to the visual migraines. I don't know if the fasting didn't have a significant influence on my improved test scores last July, so I'm reluctant to back off on that.
So now I'm trying to get a new MRI, but they also want me to see two more specialists at Harborview. Hopefully, these can be done online. And hopefully they can find me some new answers, especially that might help with my balance.
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