Travels with Lewy – Questions Unanswered

As a Lewy patient myself, I often wonder if we, the patients, received enough information at time of diagnosis. Was it because we were so stunned that we forgot to ask, we didn’t know what to ask, or Doctors didn’t know enough to offer information because each patient’s experience is so different than another’s experience. I feel it is a combination of the 3. Let’s look at them one at a time.

First about being stunned. I knew I was and had only heard of the disease because I am a huge Robin Williams fan. Still I did not know all the symptoms or what to expect. My wife, Amy, and I had to see 3 different neurologists until we were able to find one whom we were comfortable with but also specialized in Dementia. The first neurologist specialized in workers comp cases but his Physician Assistant saw something and did some tests. Still that Doctor could not handle the diagnosis. This doctor recommended a geriatric Neurologist. We went to see one and after 3 visits we were diagnosed with Lewy Body. We were told it was not a death sentence but there was no cure. Read that a couple times and when you are done scratching your head, continue on. So we asked what that means. We were told that life expectancy is 5-7 years. In my brain, I am thinking that I am in the middle of an Abbot and Costello skit. There is no cure but you only have 5-7 years but on the bright side this isn’t a death sentence. I still scratch my head when I read the notes from that appointment. The last and our current doctor that we went to have us a little more hope/time. She is a specialist in Neurological diseases and told us that she feels that patients have 10 years at least from her diagnosis and sometimes longer. That was a small sigh of relief. We asked about symptoms and told that there were many but anything in the Autonomic Nervous system could be affected. That includes control of most muscles in your body as well as smell taste and sight. She also cautioned us that symptoms come and go. In my analytical head is Oh Great. But after 2 years, I find that to be a Blessing. There is some almost normal time. The last thing that was mentioned was hallucinations and delusions. No talk of how severe. Probably because the doctors can’t be sure but they do come. .

Not knowing what to ask covers a lot. The first couple of appointments, this was definitely the case. I was happy that I remembered the Doctor appointment. But as time wore on I had things readied to ask but usually forgot them. Our doctor does cover a lot and we are very pleased with her but there are things we want to better address but I guess we are doing the best we can. My walking is rigid, the hallucinations seem to get stronger and more aggressive, and really want to be more active but don’t seem to have any energy. When we ask about these things, we are told it is all part of it. That is true but it gets very frustrating.

Do the Doctors know enough? In my case, I feel my primary doctor has done a lot of research and genuinely tries to stay informed. Our Neurologist specializes in Dementia and knows a great deal. So I don’t think it is a lack of knowledge as much as it is, when you have met one person with Lewy, you have met one person with Lewy. We all have the same diagnosis but our paths or trips on the roller coaster are very different. In my opinion as a layman with Lewy, the main questions that should be asked are; what to expect? What is the best way to handle the swings from being “ok” to being full blown Lewy? Where should my caregiver look for support and answers? And how does my caregiver know when it is just Lewy and not something else? In the end remember to ask the doctor your questions and there are no bad questions, if you want the answer, ask, it is the only way to get the most informed answer.

3 Replies to “Travels with Lewy – Questions Unanswered”

  1. So true so true—how they can call Lewy Body Dementia a non terminal neurodegenerative disease & then turn around & say oh, so your prognosis is about 10 years tops…..makes no sense. Without a doubt, this very much is a terminal neurodegenerative disease. Plus the aberrant alphasynuclein proteins, called Lewy Bodies after they’ve gone “rogue” so to speak, end up all over our bodies, not just in the brain. The Japanese seem to be at the forefront of a lot of research because they’ve discovered a specific area of the heart that is only damaged by Lewy Bodies & can clearly be seen on a cardiac MiBG Scintigraphy. But insurance companies in the US don’t like it if your doctor wants to order that test, even though it’s been shown to have an accuracy of over 95%. It’s used in Japan routinely to Dx Lewy Body Dementia. For me, it’s the autonomic dysfunction, or dysautonomia, that is very bothersome—my blood pressure can be alarmingly too low for days, then suddenly it’s too high. I’m hot & sweat is dripping off my forehead & 5 minutes later, I’m shivering. My pancreas no longer produces insulin because dopamine is a precursor, & even though I take Carbidopa/Levodopa, it’s not enough for the Islet Cells to produce insulin again, so I’m insulin dependent. Also, the crying jags that come out of nowhere & can last for days—debilitating. But the peripheral neuropathy is a killer—electrical pain shoots throughout my body. But the mental torment, I have no accurate way to describe it, the mental agony, at least for me—what Robin Williams widow called “the terrorist in his mind”—that’s the zinger. I have cardiac arrhythmia now & run away tachycardia—all part of the dysautonomia—& can definitely cause death in a few moments—so I’m DNR. The damage to my swallowing nerves means I can get a pill stuck in the trachea any moment (already have once—daughter jumped in & did Heimlich thrusts & pill went flying across the room) & smother to death, but if it comes to tube feeding, I’ve already informed my husband that I refuse to do tube feedings. What for? To me, this neurodegenerative disease is very similar to ALS, MS, MD, & any other neurodegenerative disease, which have long been described as unequivocally terminal diseases. It’s time for all the medical professionals to get that “memo” implanted in their brains & get on the same page & call this disease what it actually is—terminal. Thanks for yet another great information packed blog post on this wretched disease. Getting the word out there about Lewy Body Dementia, making it household common words, just like Alzheimer’s—that’s the big undertaking here, & with every post you write, you’re helping immensely to make Lewy Body Dementia household words, a big first step. After that, maybe our own 5K run/walk/wheel chair race & finally the federal funding for research that it definitely deserves.

    1. I will do this for as long as I can. It gets very hard sometimes but I try to labor on. Thanks Abigail.

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