Author: pwsbuilder

Learning to accept and live with a disability is not easy.  As a matter of fact, it’s much harder than I thought it would be.  Looking back in time, I thought I was good at counseling people with new disabilities but obviously was fooling myself.  I now believe that, to counsel a patient with a newly diagnosed disability, you have to have a similar problem yourself.

In other words, I underestimated the impact of being disabled.  I want to visit my brother in Tennessee when my handicapped-equipped van is ready.  My van has been converted by Braun with an in-floor ramp and a floor designed to lock in my motorized wheelchair.  So, step number one is done. I have transportation that will carry me and my 350-pound wheelchair wherever I go.

Step one gets me to my brother’s house.  Step number one was easy; it just cost big bucks.  Step number 2 is not so easy.  When I get there, how do I get into the house. Alan has steps at all entrances.  To get me into the house, Alan would have to build ramps.  Another expense.   Let’s assume that he goes through the expense of building ramps, I’ll need a handicapped bathroom. 

I’m in luck.  Alan has a handicapped equipped bathroom.  The catch is that it’s on the second floor.  No sweat!  He has a chair lift.  While the chair lift will take me up the stairs, for the most part, I can’t walk.  Now we have to get me from the chair lift to the bathroom and from there to the bedroom.  Point made! 

The logistics of dealing with a handicapped individual are near impossible to imagine.  I think my travel days are over.  Or are they?  I had to cancel my trip to Ireland.  My friends leave next week.  They’ll send pictures and we will Facetime.  I’ll use Google earth to follow their trip.  I’ll use YouTube as well.  Cyber travel is about the best I can do.  Google Earth will further expand my ability to walk the same streets they walk on.

Being handicapped is costly emotionally, physically, and financially.  I guess my advice should have been to be born to rich parents or work hard, save your money and invest wisely.  In other words, good luck!  I worked 7 days a week, sometimes putting in 16-hour days.  I did that for 35 years and still worry about the expense of a handicapped van, in-house assistance, etc.  In retrospect, long term care insurance would have been a wise investment.  And going to the gym on a regular basis would have built physical reserves I could sure use now.  On the bright side, cyber travel is now possible and I intend to use it liberally.

Today’s joke:  I’m going to rename my bathroom substituting Jim for John.  Insead of saying,” I’m going to the john,”  I’m  going to say, “ I’m going to the Jim.”  I may go to the Jim 3-4 times a day.  Impressive! I started a new exercise routine this week: do 100 crunches in the morning and again in the evening.
My favorites are Doritos cheese supreme and Lays

I’m invisible.  That’s right, most people don’t see me or any of my kind. When I say my kind, I’m referring to the handicapped.  You think that’s a ridiculous statement?  You want proof?   Let me present the case of the handicapped parking at our local Costco.  All you have to do is sit in the parking lot for 20 minutes and watch the able-bodied park in the handicapped spaces, easily exit their cars and march into the store.  Where are the cops when you need one?

Worse than taking up a handicapped parking space is taking up a handicapped toilet stall.  The next time you’re sitting in the handicapped toilet stall, look around.  See all the bars?  They aren’t there to play on like a child’s gymnastic set!  They are there to help a person with mobility problems get on and off the toilet.  The extra space is there to allow wheelchair access.  Yesterday, employes at Costco cut in front of me and occupied the handicapped stall.  Again, where are the cops when you need them?

When you sit in the “bellies and butts” section, the world passes you by.  The next time you’re tempted to park in the handicapped space or use the handicapped toilet, think of me and all the people who need those spaces and feel blessed that you don’t. 

Yesterday, several individuals spoke up, chastising the offender who was taking up space in the handicapped stall.  While I appreciated their support, I couldn’t help but wonder if any of the jerks who were violating the handicapped space had an AK and we would be on the 6 o’clock news.

Here is today’s joke:

Today I was offered sex by an 18-year-old female…Now, I’m not gonna lie. This chick was smoking hot. In exchange for the sex, I was supposed to advertise some kind of bathroom cleaner for her. Of course, I, being the great person that I am, declined because I have high moral standards and my willpower is very strong…..but not as nearly as strong as Ajax, the safe and affordable bathroom cleaner, now available in lemon and vanilla scents.

It’s time to reorient myself and get back to tackling the mistreatment of the handicapped in US airports.  Humanizing the plight of the handicapped in our transportation hubs is going to be near impossible.  That the task will be daunting it is still necessary!  We are going to need every passenger who has suffered the indignity of our present system to cry out and be heard by Congress.

First, a little story that will help you understand the reason that I believe changing the system will be almost impossible. When I computerized my office, I bought:

1. Computers
2. Network Hardware
3. Network Software
4. Medical Software

Whenever my program/computer crashed, the software engineers blamed the hardware engineers or the network hardware and vice versa.  A typical conversation sounded like:

Me: “My system is down.  We can’t input patient demographics.  I think the problem is in our medical software.”

Medical Software Engineer: “First have your hardware inspected, reboot the system, replace your keyboard, . . .  If you fail to resolve the problem, call your network engineers.  It could be a network problem.”

The absurdity of shifting blame has worsened over the years making it almost impossible to fix anything.  In the case of my office, I learned how to build and program computers, eliminating one player.  The remaining three still drove me crazy and wasted my money.

In the case of the airport’s abuse of the handicapped, the players are:

1. Prospect – the pushers
2.  The airport authority
3. The Airlines

The three play the game like experts, shifting blame constantly.

United Agent – “Prospect is responsible for having pushers and equipment in place when the plane arrives at the gate.”

Prospect pusher – “Our pay is so low that no one wants the job.  We are handicapped due to having to depend on old broken wheelchairs.  The customs agents work at a snail’s pace and can be downright mean. The airlines are booking connecting flights closer not allowing enough time to get to your next flight.

The airport authority simply fails to respond.

So, what can we do?  I think our best hope is to get 60 Minutes or 20/20 involved. I’ll send a copy of everything I have to their producers.  I’m asking that y’all do the same.  If you or a friend has had a bad experience, please write about it and publish it to the internet.  Please write 20/20 and 60 Minutes.  Complain to the airlines, Prospect and the airport authorities. 

Here’s todays joke:

The police just pulled me over, he came up to my window and said, “Papers?”  I said, “ Scissors, I win” and drove off.
I think he wants a re-match. He’s been chasing me for 45 minutes.

Over the past months, I’ve written about the loss of bodily functions caused by neurodegenerative diseases such as Parkinson’s.  Yesterday, I wrote about the stigma of suicide or a more dignified end to a life ravished by neurodegenerative diseases.  So, how does a person decide when to call it quits?

From my point of view, it all boils down to how you describe “quality of life.”   As everybody assesses quality differently, the answer to “when to call it quits” is different for everyone.  Quality of life should be high on the list of items discussed with your family and your physician.  As it stands right now, my “quality of life” ranges in the “it sucks” range.  It’s about to get better.  The movement disorder doc I see referred me to a specialist in adaptive devices. 

In a 2 ¾ hour session, she assessed my need to be mobile and measured me for a customized motorized chair.  I’m currently using a loaner and the quality of my life has already improved.  It has made functioning in the house a less exhausting and less painful experience.  I’ve sold my BMW and I’m outfitting a van so that I can take my chair with me.  It will be great to get out of the house.

The word, disease, breaks down to “dis” and “ease”.  In other words, it stands for lack of ease.  Anything you can do to make life easier is worth it.  If you have a progressive neurologic disorder, talk to your doc about ways to make your life better.  If you’re at the end of your rope, discuss that with your doc and family as well.

End of life conversations were among the hardest things I had to do as a doctor.  Patients were always surprised when I found them a longer rope.  When no additional rope was available, prepping the family and my patient often made a big difference.  Most people think Hospice is for cancer patients.  Hospice is for all end-of-life situations and can be a great asset in helping people die with dignity.

One of my patients posted an article about Lewy Body dementia today.  The article stated that Robin Williams committed suicide after being diagnosed with Lewy Body dementia.  Suicide is defined as “the action of killing oneself intentionally” and leaves a negative legacy.

Robin was a gifted actor who continues to bring laughter and joy into my life.  He did not kill himself.  The disease killed him a little at a time.  Rather than suffer the indignity of slowly becoming a lower form of life, I presume that Robin simply accelerated his disease process bringing his life to an end while part of him still existed.

While I did not know Robin, I do know what he went through.  I have been dying a little at a time.  My new neighbors and friends really don’t know me.  They only see a shadow of who I used to be.  Playing Bridge the other night, I dropped my cards on the floor.  They simply fell from my hands, the same hands that could not hold 13 cards used to catch newborn babies covered in slippery amniotic fluid residue.  I lost track of how many trumps had been played and how many points were in my hand.  (I was a math whiz!).  Memorizing new rules is difficult; yet I got my doctorate in medicine by learning the most complicated rules of all times, those that govern life.   

The brain that could diagnose and treat countless people over 35 years is having trouble playing a game of cards.  The body that carries that brain is unrecognizable.  It has forgotent how to walk.  It no longer can participate in household chores.  More importantly, it can’t play with the grandchildren. Getting my 250 pound, obese body on and off the floor is an  impossible task. My running joke is that if I have to wear a diaper, I should be allowed to breast feed.

Life is demeaning, embarrassing, and depressing.  While I am going through the dismantling of Stewart, my loved ones get to go through the pain of losing me one piece at a time. I counselled spouses of individuals who had slow deaths warning them that, in the end, they would feel relieved that their loved one finally passed and that the feeling of relief would be followed by guilt.  Yes, they would feel guilty that they were relieved that their loved one was dead. 

If I let my disease kill me ever so slowly, I prolong my families suffering as well as my own.  If I end my life while there is still some part of me left, it’s called suicide.  It’s the ultimate Catch 22 (no win situation).  We need new terminology and new laws.  Doctors need to be allowed to assist terminally ill patients, allowing them to die with dignity.

About now, some of my readers are freaking.  Relax!  I’m not ready to end it yet.  I still have two refrigerators and two freezers full of food to be eaten.  and, of course, there is still sex!  i still have 3 coupons each good for a night of sex (quarterly).

Here is todays joke:

3 Stages of Sex: 1. House Sex – When you are newly married and have sex all over the house, in every room. 2. Bedroom Sex – After you’ve been married for a while, and you just have sex in the bedroom. 3. Hall Sex – After you’ve been married for many years, and you just pass each other in the hall and say, “F**k you!”

I wish I could say that I created the phrase, “Bellies and butts,” but my brother gets the credit.  My brother had a stroke and, as a result of his stroke, spends most of his time in a wheelchair.  Unfortunately, I’ve joined the wheelchair brigade; and, as my brother says, the view from the wheelchair is, in fact, bellies and butts.  Unfortunately, ambulatory humans don’t get it and, as a consequence, talk down to the handicapped rather than sitting down to carry on the conversation eye to eye.

No place is the belly and butt phenomenon more prevalent than in the airport which brings me to my topic of the day/year.  As my readers know, the treatment of the handicapped in the airport is atrocious!  My two latest visits to airports were so bad that I won’t fly again. Both United Airlines and American airlines took the brunt of my anger after I was dumped in the handicapped scrap yard awaiting service.

The gentleman who eventually became my pusher (pushing me through the airport) worked for Prospect (company contracted to provide services to handicapped) and educated my wife and I about how the system works. The night I arrived in Dallas, my pusher was responsible for 4 handicapped passengers on my flight.  He had 3 working wheelchairs for 4 individuals and had us sit and wait while he found a fourth.  He had to get all four of us through customs, baggage and, in my case, to a connecting flight.

He pushed my chair with his right hand and pulled another chair with his left. He changed lanes frequently once while we were waiting for the customs agent. The customs agent was right out of a Saturday Night skit.  His disposition was nasty.  He shouted, “get behind the line” frequently.  It was the first time I’d ever seen someone snarl.  Once out of customs, we needed to go back through security.  Since I can’t be scanned due to the generator in my chest wall, I now get a massage from a male TSA agent.  If he had taken a few more minutes checking my groin, I might have surprised him.

All told, it was horrible.  In talking to other handicapped individuals, I’ve learned that my experience was common.  Something has to be done. The airlines blame the airport and Prospect. Prospect blames the airport and airlines. I’ll tell you it’s all three.  By blaming a third party, they all avoid taking responsibility. I can’t take them on alone.  I need you to to make this blog go viral.  We need the producers of 60 Minutes or 20/20 to take an interest in the plight of the handicapped when traveling by air. Consider sending a letter outlining your experience to them as well.  Let me know your story and I’ll publish it.

https://www.cbs.com/shows/60_minutes/

Watch 20/20 TV Show – ABC.com

I read an article about ChatGPT today.  ChatGPT is an AI (artificial intelligence) medical program which, according to the article, could pass the medical licensure exam.  The author of the article lists the pros and cons of patients utilizing AIs.

Years ago, I published an article called “Cyberchondria”.  Googling symptoms often introduces patients to diseases they have never heard of and provoking anxiety reactions and fear out of proportion to the initial symptoms.  Patients who googled their symptoms prior to coming to the office often requested inappropriate testing, brought up diseases which they were highly unlikely to have, and were often convinced that they had cancer.

Office visits were often prolonged as I tried to convince a patient with a sore throat that they did not have leukemia.  Google fatigue.  What you’ll find is a list of every disease known to mankind.  Working up the list of every disease known to mankind leads to ordering every test possible.  Ordering every test possible leads to the discovery of false positive results and added anxiety.  The end-result is panic and increased financial and psychologic costs!

While physician-level AIs may one day fine tune the diagnosis associated with patients’ symptoms, Cyberchondria has to be accounted for.  One last thought, often just watching my patient walk into the exam room and interact with me led to the proper diagnosis.

Today’s joke is about attributing cause and effect falsely and the danger of doing so.

 I took the batteries out of my carbon monoxide detector. It was beeping so much it made me dizzy and gave me a headache.

I’m finally catching up on my reading and came across a fascinating podcast from February 24^th.  If you take medication, you should listen to what ZdoggMD in The Ugly Truth Behind Soaring Drug Prices (And How To Fix Them) w/Dr. Alex Oshmyansky – ZDoggMD.

When I started my practice in the early 80s, the cost of medical care and medications was quite reasonable.  There were very few health insurance companies and no prescription plans. You paid for the treatments you received; and, if you had insurance, your insurance company reimbursed you.  A “Sports Physical” was $5.  A vitamin B12 injection was also $5.  By the time I retired, a “Sports Physical” ran as high as $150 and a shot of vitamin B12 cost $75.

The physical did not change.  It did not take any longer or require any special tests.  The B12 was identical to the B12 given in the 80s.  So, what changed?  What changed was the insertion of an insurance company that requires prior authorization, additional billing steps and inflated prices in order to make a living.  On the pharma side was the addition of a “pharmacy benefits manager” who simply skimmed massive amounts of money off the top of every prescription written and filled.

Dr. Oshmyansky is the CEO of Mark Cuban’s company, Mark Cuban Cost Plus Drug Company.  After listening to the podcast, research your medications on his program by checking out the cost of you.  It’s about time someone cut out all the middlemen in the medical world.

Renee and I just took the family on a Mediterranean cruise.  I now need assistive devices 70% of the day. A vacation on a large cruise ship meets my needs.  I rented a scooter and used it 95% of the time.  I even used it when we got off the ship in Ocho Rios, Jamaica.

The ship we were on was brand new and handicapped friendly.  The bathrooms were the best I have ever seen.  The shower in my room was large, with rails, handheld shower head, seat and non-slip flooring.  The only thing the ship was lacking was handicapped accessible pools. 

My favorite place on the boat was the observation deck. I’m usually awake at 3 am and I spent many mornings looking out at the sea, reviewing my life, playing the “would’a, could’a, should’a” game I have written about in the past. I’ve always recommended that my patients avoid playing this game as you can’t win it.  I now recognize that despite not being to win the “would’a, could’a, should’a” game, as you age and near the end, you have to play it.

What I learned was that I jumped into a rapidly flowing river (complete with rapids) at an early age and went with the flow.  I moved though life at so a rapid rate that I didn’t appreciate the life I had created.  I did it for my family, my patients and my ego. 

I missed so much!  Do you ever think how incredible walking is?  I do.  I watched the world walk by and wondered how many of them ever thanked God for for the ability to walk.  I never did.  I took it for granted. As I’ve lost function, I realize that I really didn’t understand what was truly important.

Now that I’m walking in my father’s shoes, I understand them better.  I owe them many apologies.  If they are looking down from wherever we go when we die, I know sorry is not good enough but its all I have to offer. By the way, dad, Parkinson’s really does suck!

My advice to my children and my patients is to slow down, spend less time at work and more time with your children and parents.  Both will eventually leave you and you are doomed to play the “would’a, could’a, should’a” game.

I want to give a shout out to Jeremy and Allyson.  You’re playing life right!  The balance you and Allyson have established is precious.  Keep it up.

When is enough, enough?  Answering this question becomes increasingly more important the older you get.  Go to any healthcare facility and the person registering you will want a copy of your advanced directives and healthcare power of attorney.  Do you have advanced directives?  Healthcare power of attorney?

I don’t!  I don’t have an excuse for not having a healthcare power of attorney; and by the time I finish this blog, I will.  As for not having advanced directives, I have lots of excuses. While I have yet to put my directives on paper, my family is well aware of what I want and I trust that they will honor my wishes.

The simple answer is that I don’t want to be resuscitated.  Parkinson’s is a degenerative disease and I’ve already lost too much of me.  Do I sound selfish?  People are quick to point out the fact that I’m blessed to have a wife, children and grandchildren and they should be all the reason I need to be resuscitated.  In actuality,  they are a good reason not to be resuscitated.  Visiting me in a nursing home on Sundays would become quite a burden.  Changing my diaper is even more repugnant.  I’ve told Renee that if I have to start wearing diapers, then I should be allowed to breast feed again.

A good friend called me from the ICU at her local hospital.  Her friend had a witnessed cardiac event and was resuscitated.  She then had a second cardiac arrest and was resuscitated and placed on life support.  My friend wanted to know what she should do. Number one on the list of what to do is listen to the doctors caring for your loved one.  Not knowing the patient’s wishes, my answer was qualified.  “If it’s me, let me go! No life support, no further resuscitation!!  In her case, I told her to rely on the docs.  They have the patient’s best interest in mind.  The patient coded again and died.  RIP!

Please make sure your loved ones know what you want for yourself.  This is one place where being selfish is appropriate.

Here’s your joke for the day:

“Give it to me! Give it to me!” she yelled. “I’m so wet, give it to me now!” She could scream all she wanted, but I was keeping the umbrella.