Monday November 3, 2008



Dear Blog….


I received many emails and birthday greetings yesterday and today. I wish I could answer all of them in person but that’s impossible. I appreciate all of them. They’ve all meant a lot to me.


However, I got one email which was disturbing. It was a happy birthday wish but it also said, “Enjoy it while you can because your Lewy Body Disease will catch up with you very soon and you will be dead in just a few years. It goes fast you know. This could even be your last birthday.” Now, I really don’t know how to handle this one. Very uncanny. I had just started to read Dr. Thomas Graboys’ book, “Life in the Balance” yesterday afternoon. Reading about the severity of his illness and then opening up that email about an hour later wasn’t good timing. I think the writer probably meant well but I don’t think it was probably thought through to realize the negative impact it had on me. But the optimist in me has already started to overcome that. I’ve learned to expect most anything when dealing with people. Basically, I like to think people are good. Maybe it’s just that I’m too sensitive right now and took it the wrong way. I’ll just move right along, though. And Pam is very optimistic too. She tells me I will live many many long years! That helps a lot, believe me.


Speaking of Pam. She and I had our regular primary care Dr. visit today. She’s been tired and lethargic for sometime now but it’s been getting worse. She is so fatigued that she can hardly move and she sleeps alot. Low and behold, she is deficient in potassium, iron and vitamin D. The vitamin D level was real low. No wonder she’s tired. So she came away with a hefty dose of potassium, iron and a new preparation of 1x/week vitamin D…I think 50,000 units. So I help all this stuff begins to help her soon.


Dr. gave me some samples of Enablex. Since I don’t have any other symptoms consistent with diabetes or prostate disease, she’s not totally sure if the frequent urination is part of the Lewy Body Disease or not. One of it’s claim to fame is that it isn’t supposed to affect the central nervous system. Hope it works. Getting up 4-5 times/night is a pain. And I need good sleep to stay alert.


Got to thinking today. I miss working with Howard and George in the Medical Director’s Office. They are 2 of the finest, conscientious psychiatrists I know. Hope they are doing well. Howard works so hard but I keep telling him that he needs to retire and to enjoy life. George is enjoying life since he’s now retired. We used to work sooo hard together but had fun laughing and joking at the same time. I think it kept us sane. Thanks, guys. Hope you’re both doing well.


Tonight is Monday, time for the LBD chat on Yahoo. I’ve tried to get into the chat room for a couple of weeks but to no avail. I’ll try again tonight and see what happens.


Thanks to everyone who sent the uplifting and encouraging emails……….


Trivia which I learned today:   Maine is the only state whose name is just one syllable.


I’m having all kinds of thoughts and feelings as I read Graboys’ book. Will be writing them down soon.




Friday October 24, 2008

Bizarre. Yes, dreams can be. Last night I dreamed that I was ‘somewhere’ with a bunch of people. During the gathering, I had a moment of severe confusion and disorientation. It lasted for a long long time in the dream. Now that’s a new type of dream I’ve never experienced before. Go figure.

I’m getting weary of all the political ads. Can’t wait until Election Day is over. Seems like it’s been a long drawn out affair. I’m sure most people have already decided so let’s get it over with. Have been watching MSNBC, CNN, etc. The anchor folks so to have run out of things to say. They’re now down to what kind of clothes people are wearing and how much they cost! Aren’t there more important things in life?

We’re having friends (Margo and Stein) visit us from Pittsburgh tomorrow. They are dear and closer to us than some family members. Funny how ya can choose your friends but not your family! It’ll be a very nice day in spite of the rainy forecast for the weekend. Stein is so witty I don’t know if I’ll be able to keep up with him. Margo’s brother-in-law is suffering from Alzheimer’s disease. I think he’s also on Namenda and Aricept.

Speaking of that. I’m really noticing a positive difference since adding the Namenda to the Aricept. My sleeping pattern had been terrible for the past 3-4 years. I noticed an improvement after taking the Namenda for about 4-5 weeks. Am sleeping better than ever right now. And the Vivimind. That’ll take awhile. Am taking 10-mg daily for 1 month and then I’ll increase it to 2 tabs/day. My understanding of it is that it’ll take much longer to notice any results. Fortunately, I haven’t had any side-effects from any of the 3 of them.

I spoke with Angela Taylor this week. She’s the Chair of the Science Committee and on the Board of Directors of the Lewy Body Dementia Association (LBDA).  What a lovely, caring and smart lady! How lucky we all are with her running the ship. Thank you, Angela, for your interest. You perked me up and encouraged me and you didn’t even know it.

Am looking forward to reading Dr. Tom Grayboys’ book – Life in the Balance. I put in a request to the birthday fairy. She’s coming soon.

I just discovered a new game called KenKen. Never heard of it before. Haven’t tried it yet but it sounds like it’ll be another way of working the brain.

OK, David. Give the computer a rest and do something else today. It’ll stimulate your brain.


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