Hey, I'm Mike Oliver, a veteran investigative reporter/editor in healthcare and politics, and I have Lewy Body Dementia, a life-shortening disease that Robin Williams had which has no known cause or cure. I love music and I’m writing about living ...

Hey, Mike. How should people respond when you share with them that you have a disease such as this? What is best/worst to hear for the person who's been diagnosed?

I have no problem talking about it. I say it's not contagious so you don't have to step back. I like to talk to people who are truly interested and I try to put at ease those who may feel uncomfortable.

but coming back to this one: Don't tell people with a terminal illness that God had something to do with it (God has a plan)

Thank You. Living with Parkinson's and Cancer here. I've heard them all, but my brother summed it up with "you're the nicest/best person in our family so it's not karma". Meanwhile, I keep going, keep working dog rescue, and just enjoying every day.

way to go .. that's all you can do

What’s the biggest struggle you’ve faced in coming to terms with the effects of the disease?

Probably looking back and realizing all the time I'd like to have back.

What are the most bizarre lines of research scientists have suggested for LBD that might hold some promise?

I'm not sure how much research is being done. The disease tends to get lumped in with other diseases. Alzheimer's and Parkinson's get most attention.

Is there anything odd being explored by amateurs or LBD sufferers themselves?

Cannabis has been touted for helping the Parkinsonian symptoms-- in other words the physical tremors and weakness and spasms. But not so much the cognitive side. I hear there is a fetal cell research ongoing as well.

What is the very best dessert?

Fresh hot blackberry cobbler with ice cream

Have you started hallucinating yet? What do you see?

Hallucinations have been rare, typically i get the out of the corner of my eye type -- something like a mouse scurrying away. But I also feel pressences of people who are not there.

Funny story, for me it is small cottontail rabbits. I'm so glad it is cottontail rabbits and not something like rattlesnakes.

So one day I get back from a walk with my Golden Retriever. I spot a cottontail on the doorstep but ignore it. My dog taps my leg and looks at it with "Dad, it's a real rabbit". The two sniff noses, the rabbit gets the hint and hops away. Oddest thing, but was curt.

If I don't sleep my hallucinations get worse. Only thing I ever found to get a good nights sleep is a THC: CBD sleeping aid, but illegal in Texas. I'm too paranoid to let friends mail me any. Oh, that helped get a good nights sleep.

I am curious why there is a similarity of hallucinations among LBD folks, small children, animals and bugs.....where does that come from?

Are there any promising experimental treatments? Have you thought about assisted suicide ( in the distant future)?

My dad passed about 6 months ago and had a sick record collection. Many first editions. Father daughter relationship is very special and God damn i miss him.

Thanks for doing this and raising awareness.

Thank you. Sorry about your dad. I have three daughters but I'm not sure how many want the records --- you put your finger on the hard part, not dying, but leaving

adding on....there have been clinical trials.....thing is i dont know if i want to use my time to go through a trial and learn i'm on placebo

What was a favorite story/storyline you covered in your career?

Went inside an active prison riot once at St. Clair; prisoners asked for me to observe . Also uncovered that a faulty autopilot was linked to string of plane wrecks ----------these are my Alabama fave stories

More details about about both the riot and autopilot, please. Not too many people I know of get to learn details of both!

Here's my recent reminisce story about the riot https://www.al.com/news/birmingham/index.ssf/2017/04/exclusive_look_inside_1985s_st.html?fb_comment_id=1482421665164692_1482834785123380

i'll try to tell the autopilot story later, got to get ready for work now

Do you believe if you think badly about your situation that your lifespan will be shorted?

I think it is important for mental and physical health to be positive and hold on to hope, without being unrealistic about it. I'm 2 years into a diagnosis ...they say average lifespan after diagnosis is 4 to 7 years

I think about Stephen Hawking right now. I mean they said he only had like some years and not ehh was it 50 or 20?

But yeah. Positive thinking is the way to live. Wish you good luck.

I have become more interested in Hawking and other big thinkers since I got this disease.....It seems my mind wants to know what is going to happen.....after death

Hold it! This is very depressing to think about that. Thinking itself can work both as a benefit or as a disadvantage.

I know that too well.

I'm not going to go down without exercising what's left of my brain

Hell yeah. Steve Jobs said some really cool things about death and perspective. With all this interest in this disease maybe you should write a book!

thanks..I think there is definitely a need for greater interest given it is the second leading cause of dementia after Alzheimer's

So few people realize the diffence between LWD and Alzheimers, even those in critical places like memory care of ER.

For Alzheimers a "goto" drug it Haldol will calm someone with Alzheimers, but may cause permanent damage in those with Lewy Body Dementia. Nasty drug, but often given to all dementia patients.

And that in a nutshell is why it is crucial to get correct diagnosis which means raising awareness so patients can ask their doctors. Wrong treatment like Haldol and/or brain stimulation treatments can be bad for LBD patients.

What exactly is Lewy Body Dementia? Does it effect people like Alzheimer's? Is it just assumed it's a different part of the body that's effected, therefore the different name?

I don't have a medical background but it is my understanding that Alzheimer's is a different physiological attack on the brain cells. LBD like Parkinson' s involves an overabundance of a type of protein whereas AD the method involves 'plaques and tangles' LBD and PD (parkinson's are cousins.

circling back here. Alzheimer's often ends with full memory lost whereas Lewy body the memory can come and go ----

Thanks everybody Going to break here. I'll come back later (if I am able) to check.

What albums or artists have you rediscovered a love for?

My albums are mostly from the 70 and 80, when I was in my teens and 20s....Rediscovered how good Fairport Convention was, other names: Randall Bramblett and the Flamin' Groovies, Kinks

I also have an old Cowsill live record from my youth and have come to the conclusion they should be in the R&R Hall of Fame.

I've also rediscovered and posted on my blog the "Best Worst Song of All Time" ------How Do You Do by Mouth and MacNeial

Curious, because I know you are married to a minister.

Have you become more or less religious since you were diagnosed?

I've certainly become more interested in what existence is all about, why are we here. Given my exposure to the Christian church, I feel fine with the teachings of Jesus...but i'm not fine with how so-called followers have acted in my lifetime and for eons....Where did we come from and for what purpose? ..........I'll llet you'all know on my deathbed

Love. At least that’s what Jack Johnson says in the song Better Together. If you haven’t already listen to it!

i can agree with that and healthy, happy relationships w/people our environment and the universe---(trying not to sound to Californian there

How does the disease affect how you write? Does it take your brain into places you wouldn't go otherwise? Or does it get in the way of finding the words you want?

I think so. My writing in some ways has been unchanged however, I find the topics I'm choosing to be related to what's going on with me. Essays on Time or Who I Am, things like that. Some bad poetry. For example I just wrote a column about my dog getting old, and how I hope he has a few years left.

I also recently did a story on all these bizarre coincidences affecting my lilfe.

I want to read this.

Search my name on AL.com and/or go to my blog at myvinylcountdown.com

The dog column got me. I think I've still got some good years left with Disco, but I've noticed she's slowing down and the signs of aging are showing up. I've been thinking about it a lot, recently.

Yeah, I'm thinking my beat should be called: Stories you don't tell at xmas parties

What concerns you regarding the future of journalism? Thanks for doing this!!

Wow. That's a biggie. Obviously journalism's delivery system has changed at break-neck speed. I'd like for Journalism to be better prepared for the changes as we move forward. Too much carnage this past decade. I would like for us to not forget that we can set the agenda to a degree and that's a lot of power that we need to be careful with and thoughtful about. I'd like for us to figure out a successful, profitable way to fund the coverage of local news, an area that has suffered nationwide. And I'd like for journalists and readers to remember that true and accurate information helps our democracy.

Talking about vinyl and music – are you able to go to concerts? Which band do you urgently want to see?

Small venue places where I can sit down....which narrows it somewhat New band consisting of Peter Bucik of REM and Joseph Arthur I wouldn't mind seeing called Arthur Buck Father Misty intrigues me

How do you keep a positive outlook with your diagnosis? I have a genetic disorder with no cure and it’s really difficult to know that there isn’t a cure and that it will continue to get worse. You seem to have a good attitude- I’d love to know the secret.

I dont think i have a secret, i go through bouts of despair--but i guess Ive learned to accept reality ... that doesnt mean give up hope but be realistic and make each day count....i started getting more involved in music and I make special efforts to show love for family and basically keep busy.....do some stuff you want to do but never took the time........I;ll be thinking about you

Did you undergo neuropsychological testing as part of your diagnostic workup?

Yes I did. I had some deficits in key areas andit waspart of the reason they changed mydiagnosis to LBD

Thank You. My neuropsychological testing was interesting to say the least. In my case mathmatical puzzles (can not recall the word) I could do rapidly with accuracy. Word recall and some other memory test I was way subpar.

Most frustraing was seeing a picture of a Pelican and not being able to bring up the word. I could explain "loves fish, swoops for fish, sitting on a pier" but not the name.

Hardest part for me it typing anything on these windows with overlay. Hard to keep focuses on my answer.

I remember being flabbergasted when I couldnt do a simple long division problem

Hi, Mike. I've been helping take care of my grandfather for the last 10 years and although I know it's different for everyone, I really often get a bit down when I think about how long its been since he had a conversation, drove, got up and walked outside, things like that and I really do wonder sometimes if he's aware of how long it has been. For you, do you ever have moments where you can (excuse the poor choice of words, please) feel yourself "slipping" away, bit by bit? Best wishes to you, Mike.

Yes i do feel I am slipping some days and its a scary thing, like a frog in water with the heat being slowly raised Its nature of this iinsidious disease...if you can keep stimulating him with excursions or puzzles or computers .......I think that dkind of thhing has helped me.......but rightnowI can barely type these words

Man, thanks for being on here. Good luck to you. What are you going to do, for sure, next chance you get?

well, going to rub my dog behind the ears and go to work where I am still having fun

Thank you so much for doing this AMA. I find it fascinating that you were diagnosed so early (you can still carry a conversation, type, write, etc.) I am guessing you have a good neurologist. Would you mind elaborating on the symptoms that either made you ask more questions or that made your doctor decide to change the diagnosis? I think it could be helpful for others. I have been on some forums or groups for dementia or LBD because my dad had it. He recently passed away but was not diagnosed until 2015. He was only diagnosed with Parkinsons a few years before that. He was much older so i am sure that was a factor (senility vs. dementia and getting old vs. physical complications of disease).

I am going to share your blog with a facebook group for caregivers of people with LBD. Thank you.

Yes, I think the early diagnosis at 56 was helpful on many levels. i was younger than most LBD-ers and in pretty good shape--playing basketball several times a week I was first diagnosed w Parkinspns as so many are.....my hand would rollup unconciously in thegunslinger pose and i was shuffling my feet, and the stare into space;;;;;all Parkinsonian symptoms but upon further research we remembered anxiety, ReM sleep disorder going back for months if ot years---I always blamed iton stress at work........We had a neuro test done whichshowed significant deficits leading to LBD diagnosis....It has progressed slowly but i am about toquit typing rightnow bc itis so belabored....wish you luck

Since you have a big vinyl collection I gotta ask: what was the best concert you ever attended? Share a fun memory about it with us!

Early 80s Agora ballroom (now gone) in Atlanta saw young new band Dire Straits. we were sitting on the floor in front of the stage and I could see Knopfler pick every note of Sultan of Swing guitar solo

Swimming pool q's at the Nick a dive bar in Bham Los Lobos at Marin County Fair in California ---followed the next y ear by SUbdudes

Springsteen numerous times and Lou reed in Fox in Atlanta

Mike,

What medications are you currently taking?

What medication is helping with the dementia to keep you focused on your blogs?

Sad thing is that there are no drugs aimed specifically at LBD I am on Carbadopa Levodopa which helps with the physical impairments, tremors, spasms, etc. Itis a Parkinson drug i also take an Alzheimer's drug callled Memantine whih is helping with the cognitibe deficits.......none are cures just symptom fighters

I'm on Carbidopa/Levodopa 5x a day but have added Aricept for memory/cognitive issues.

Best thing I have found for depression is my workout class. All of us have Parkinson's or Parkinson's like (PSP, LBD, and MSA) health issues. All of us as a whole is doing better with intense workouts 3 times a week.

agreed....exercise is one of the best medicines

(Resubmitted) I am an activity director in an assisted living community that has a memory care unit. We don't have a policy per se not to accept residents with advanced Lewy Body's but it has not been a good fit for us. We simply aren't staffed to give residents with LBD the kind of continual one on one attention they can need. Have thought about your care for later in the disease? Have you made plans? Is if there is anything you'd like your future caregivers to know? How do you wish caregivers would respond during an hallucination? By the time I've encountered residents with LBD, they could not tell me these things.

Yes advance stage is difficult care. I'm not there yet. Hallucinations are best treated with calm voice and letting the LBD patient know it is not real -- however don't argue if he/she becomes agitated.. My wife and i have started talking about my care, exploring. I think on key is to be someplace where you have a strong support system, familly friends, church etc.....there are memory homes here where I eventually may end up

What is something you’ve done in your life that you’re proud of that you don’t talk about?

If i say, it would defeat the reason I dont talk about it

so it's not an AMA then

Ha. Could say that you did AMA and I answered but here's a more direct answer, I'm proud of the relationships with my family---I'm learning to be more explicit about that....but stilldontt say it enough

Thanks for the AMA Mike. Since you cover healthcare, and have first hand knowledge of receiving healthcare, what are you general thoughts on where it is headed, costs, coverage? I think it's one of the biggest concerns of the average person.

Thank you for any comments!

Dont cover health care anymore...........but i've long believed a single payer canadian style would save billions.. THe system is set up rigged against the consumer Hospitals doctors and insurance co's battle for their bigger slice.....no one except some big bizness representing consumer---and thatis just happenstance