It Is Only The Beginning

All my years on this planet, and who would have thought that I could get dementia? I have been a professor, teaching others my entire life, and now I may have Lewy Body Dementia.

I was told to expect that if this is happening, probably no more than five years of life. And much of that I will not be myself. How do I handle this? I was told to get my house in order.

I'm thinking a second opinion may be a good idea. My wife just cries all the time. She thinks it came from the chemotherapy medicine for the lung cancer I had. I wasn't going to get treatment, but she insisted. Yes, the cancer is gone.

The medicine was newly available to the public during my time with cancer. The initial chemotherapy pills I was taking weren't working. The Chaga my sister-in-law gave me appeared to stop the cancer growth. It just wasn't shrinking it. Then came Keytruda. A miracle cure for people with lung cancer.

The stage 4 lung cancer that I had been diagnosed with was almost always a complete death sentence at one point. Okay, so now I have another chance. The cancer is completely gone now, and it has been ever since I completed the Keytruda regimen.

The problem is going from one deadly disease to another in a matter of months, not even years. I was so relieved when I was told the success rate for the Keytruda with lung cancer was very good.

I wasn't ready to die then, and I am not ready to die now. The doctor said the diagnosis takes time. I have a few of the symptoms, but not enough yet to be certain.

He told us that he is leaning in that direction, though, and if he had to bet, he would bet on Lewy Body dementia. I had to first be tested for Parkinson's. I have some trouble with my walking. I told him about family history of hand and head movements. He thought that could be it.

Then Parkinson's was ruled out. Leaving it all the more of a possibility of Lewy Body dementia. I don't feel any different now, but that is common, I'm told. Yes, I have a bit more difficulty getting around. I had never heard of Lewy Body dementia before.

It is said to be the second leading dementia next to Alzheimer's dementia. There are 100 different dementias listed somewhere, I guess. Then I was told that there isn't a definite diagnosis. This is more like going through a process of ruling out Parkinson's and other things.

I started with a tremor and shake, then I heard it was a movement disorder. I was also told that no two cases of Lewy Body dementia are the same. I have not had any hallucinations, but others do get the hallucinations, sometimes first.

Others will have impaired thinking, problems planning, processing information, and will be totally not there at times. There can be head and hand tremors, visual hallucinations like the wall is crawling, or the floor is moving.

Some people act out their dreams at night. So it would be important to consider the space around the bed when sleeping. After hearing some of this, it frightened me. My wife again could only cry, even though I felt like she was trying to be strong for me.

I believe I may have had some of the moodiness that was talked about, and I thought that was from the chemotherapy brain I was told about. I just wanted to be done with health stuff, and here I am in the middle of another health problem that will kill me.

My wife knew someone whose husband died from Lewy body dementia, and she told her that an early diagnosis is so important, as without the correct diagnosis, what you take for the other diagnosis can make things worse for you.

Drugs that are helpful for Parkinson's and Alzheimer's can and do make things worse for Lewy Body Dementia. Then, antipsychotics make things worse by increasing symptoms.

She said that early diagnosis can and does improve quality of life. We were all of a sudden so grateful for all that we were learning. Even though we have been educating other doctors and people we meet at these appointments.

I guess only time will tell, and we can and will get through this. And yes, it will be important for me to get some business taken care of here now.

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Author's Note: I have some background education in dementia, and the storyline is fiction, while much of the information concerning Lewy Body dementia is true.