WOULD’A,COULD’C,SHOULD’A UPDATE

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 it enough?

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.

CAN DO LIST

Finally, I’ve got something positive to write about.  My Parkinson’s is rapidly                                                     progressing and my gait disturbance has seriously limited my ability to enjoy life. I realized that the majority of my blogs involved loss of abilities which I called the “Used tos”.  No matter how hard I tried to be uplifting and positive, depressive thoughts crept in and disturbed some of my readers.  So, I added writing to my “used to” list.

Nighttime driving had become one of my “Used tos”.  On my list of ailments was cataracts and cataracts make night time driving difficult.  I’m happy to tell you that my cataracts have been replaced with high tech intraocular lenses and my vision has improved remarkably.  I “used to “ wear glasses but now can read tiny print without difficulty.  Removing a “Used to” feels great!  By the way, if Biden can forgive college loans, he can pay for the high tech lenses.  Unfortunately, most elders cannot afford the enhanced vision associated with the newer lenses.

As a young man, I played Bridge and Maj Jong.  Since moving in to a 55 and older community, I’ve started playing both again.  Take 2 more items off my “Used to” list.  I think that I’ll start writing again and start working on improving the rights of handicapped individuals in airports across the country.

I think I’ll develop a “Can Do” list!  While my “Used to” list will continue to grow, my “Can Do” list will serve as a counterbalance. Feel free to send me suggestions for “My Can Do” list.  

Here’s today joke: An old man shuffled slowly into an ice cream parlor and pulled himself gently, painfully, up onto a stool… After catching his breath, he ordered a banana split. The waitress asked kindly, “crushed nuts?” “No,” he replied, “Arthritis.”

MY OWN ZIP CODE

As some of you know, I am large enough to apply for my own zip code. Looking for inspiration, I reviewed some of my old articles today.  I came up with this one from  May 1, 2013

An article published on KevinMD today asks the question, “Why don’t our patients do what we tell them?”  While the author lays out a completely plausible explanation of why patients ignore the doctor’s advice, I think the “my brains a whore” scenario is much more likely to be the culprit.

When you get right down to it, doctors advise patients to do thinks they don’t want to do!  Why would I advise you to cut sweets out of your diet if you weren’t eating them in the first place?  Why would you be eating large quantities of sweets if you didn’t love them?  Life is hard enough without giving up your double chocolate, hot fudge covered delectable desert, isn’t it?  Who, in their right mind, would turn away from their lover?

The real question should be, “Why should our patients do what we tell them?”  You have to have a pretty good reason to give up that piece of “to die for” cake!  Maybe if we explain to our overweight, diabetic, hypertensive patient that the piece of hot fudge covered cake literally is “to die for” or at least represents an admission ticket to the cardiac ICU, it would make a difference.  The skeptic in me says it won’t make a difference.

That little whore of a brain will do whatever it takes to get what it wants.  “Segal doesn’t know what he’s talking about.  He’s a reactionary!  Besides, I’ll start dieting May 1st.  Well, maybe June first.”

Meanwhile, I will continue to try to find novel ways to explain to my patients why they must give up things that they love (cigarettes) and do things that they hate (exercise) in order to be healthy.  Unfortunately, most patients don’t realize how much they love health until they have lost it!

“I know smoking that cigarette makes you feel good.  I know you love (it) her.  I also know while she may look beautiful to you, she has the equivalent of AIDS.  She will steal your health from you.  The next time you pick one her up, fondle her and start to put her to your lips, recognize her for what she is, a diseased divining rod guiding you to an early grave.”  Now that’s reactionary!

HERE IS TODAY’S JOKE: Ate salad for dinner! Mostly croutons and tomatoes. Really just one big, round crouton covered with tomato sauce. And cheese. Fine, it was pizza. I ate a pizza.

HAPPY TAKES WORK

Ever noticed that being happy can be hard work?  I have.  For the most part, my patients were hardworking individuals and led blessed lives.  Most of them have jobs, homes, family, and food on their tables.  Their Blessing Lists were full.

So why do they have to work so hard to be happy?  There are lots of reasons to be unhappy.  Sometimes, my patients were sad because they or their spouse were married to their jobs and not their families. I addressed this issue in “Another Kind of Affair”.

Sometimes, they were unhappy because they didn’t have “enough.”  Did I tell you the story about the identical twins that lived identical lives and had identical fortunes?  One of the twins had “everything” and was a happy man; the other had “enough” and was not happy!  It’s often a matter of attitude.  Even though the twin with “enough” had the same things his brother with “everything” had, he wanted more.  What he was missing was an attitude of gratitude for what he had!

Sometimes, life is going fine and illness strikes you or a loved one.  When illness strikes, you really have to work hard to maintain any degree of happiness!  When I Iaid out my “Wellthy” lifestyle plan for a patient, I asked him/her to establish five retirement funds:   a financial fund, a physical fund, a nutritional fund, an emotional fund, and a spiritual fund.  I told him that, to be truly “Wellthy,” he needed to make deposits in each of these funds on a regular basis.  I warn him that putting off deposits in any of these funds could spell catastrophe.

When illness suddenly strikes you or a loved one, the deposits you’ve made in your emotional and spiritual funds will provide the assets you need to draw on to maintain “happy.”  Remembering the good times spent rather than regretting time wasted is essential.  In “Don’t Delay the Happy,” I wrote, “sometimes there are no more ‘one day.”  Enjoying every day and saving memories will help you get through those days where no amount of work will maintain your “happy.”

I often told my patients that “spirituality” is the glue that holds a “wellthy” account together.  According to Wikipedia, spirituality can be defined as “an inner path enabling a person to discover the essence of his/her being; or the “deepest values and meanings by which people live.”[2] Spiritual practices, including meditationprayer, and contemplation, are intended to develop an individual’s inner life.”  It’s that inner life and the understanding of the essence of his/her being, that will help sustain your “Wellthy” plan through sickness and loss. 

Yes, being happy often takes work.  As in any endeavor, having a game plan helps.  Make your Blessings List and read it night and day.  Make sure those you love know you love them.  Invest in your “Wellthy” accounts on a regular basis.  And, most of all, don’t delay the happy!   

The Rights of the Handicapped

Don’t delay the joy!  My last article sounded good but let’s be real!  I’m not the kind of person who can walk away from a social injustice, especially when it involves the handicapped.  As promised by the customer relations department, American Airlines has refused to communicate with me.  As far as I know, the gates of hell are going to open on Saturday and I’ll just have to endure whatever AA dishes out.  This time, I’ll wear a diaper and keep my walker with me.

Don’t delay the joy!  This is most likely my last trip to Paradise Village with my childhood friends. I’ve been bedridden much of the trip. Parkinson’s does that to you.  I’ve been lucky as I’ve got 20 years worth of memories of trips to Spain, Italy, Hawaii and Mexico!  If I can’t travel, at least I can make traveling better for the handicapped.  My next step is to involve the government and get them to enforce the law.

I’ll keep my readership up to date and ask you to be as vocal aspossible. I have gotten many helpful ideas and I hope you stillkeep them coming.  My favorite idea was to film the transporters as they interact with their handicapped passengers. 

 The handicapped need your help and support.  By the way, this seems to be a system wide problem. At least, United Airlines promised to do something about it.

Don’t delay the happy

I want to thank all of my readers for their support and their stories.  I hope that the airlines will take notice and change their approach to transporting the handicapped.  One of my readers expressed his concern that in fighting the airlines I was missing the gifts of the life I have left.

In 2011 and in 2020, I wrote a series of articles around the concept of “don’t put off the happy.”  I’ve got to confess, I was brilliant.  I must have known I’d be in trouble and left my future self a solution.  In the past, I would have fought Goliath as if I was David.  The airlines are certainly Goliath and my blog is a sling shot.  I’m on the last leg of my life and am NOT going to put off the happy.

So, I’m going to hope that one of you will take up the battle while I enjoy my family, friends, food and alcohol until Parkinson’s takes me.  I’m also going to severely limit my flying and exposure to corporations that abuse the elderly and the handicapped.  Oh yeah, I’ll keep writing.

Here’s a link to the article I mention above. DON’T PUT OFF THE HAPPY!

Here’s your joke: 20 Airline Executives were invited to fly on the newest version of a passenger jet.  On the day of the flight,  they were told that the computer was going to fly the plane.  There would be no pilot or crew. All but one CEO made excuses and left the plane.  When the one remaining CEO was questioned why he felt safe staying on the plane, he answered that if it was designed by his IT {customer service} department, the plane would never leave the ground.   

Customer service conversation

Me:  Ring, ring, Hello.

AA Representative:  Hello, is Dr. Segal there?

Me: I’m Dr Segal, who’s calling?

AA Representative:  My name is not helpful and I’m calling from American Airlines customer service.

Me: I’ve been expecting your call.  I need your help.  I had a horrible experience in Dallas.

AA Representative: I’m sorry. I’ll communicate your complaint to the Dallas team.

Me: Will they call me?

AA Representative: NO! They don’t call our customers! That’s my job!

Me: Then you’ll help prevent this from happening again?

AA Representative: No!  My job s to communicate your concerns!

Me: Then management will contact me?

AA Representative: NO! They don’t call customers.

Me: Do you realize you never use the word help?

AA Representative: I told you Ill communicate your concerns.

The above conversation was ridiculous. Nothing will be done until public outrage forces management to do something.  If you have a similar story, contact me.

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American Airline Continued

I’ve discovered proof that my experience is more common than one would believe. While United Airlines called within one hour of my posting, American Airline has been silent. I called American and was informed that option number three was for people who have had bad experiences on American to vent! Just punch number 3 and they will call you back. Well, I’m venting here!

Frankly I’m scared. I have to fly back to Carolina on an option three airline. Yep, they know their system is broken and, for whatever reason, they have chosen to leave it in its inhumane and dangerous state.  I was bedridden after my forced march from the B Concourse to the D Concourse. I actually thought I was dying. I can’t believe how it affected me. PTSD?

I want something from AA.  I want them to fix their handling of the handicapped services. I want them to comply with the law. I also want their promise that there will be wheAirlineeelchairs waiting for Robert and I that will take us, nonstop through customs, security and our next gate. I cannot bear the thought of sitting in the dumping  ground, waiting for somebody to rescue me.

I want to thank all of you for your kind words and support. I also want something from you.  I want your stories. Rather than push button 3, send me your stories and I’ll publish as many as I can.

Shame on American Airlines

I’m in Dallas waiting for an American Airline flight flight to Mexico. In the last 50 minutes, I’ve been treated as if I were shit on the soles of someone’s shoes.I would apologize for the vulgarity, but the anology is just too perfect. My friend, Robert, has suffered the same degrading, inhumane treatment. I actually feared for our lives.I’ve cried, wet myself and hurt all over. By the grace of God, neither of us fell. I didn’t think anything could be worse than United Airline’s “Dumping Ground for the Disabled.” I was wrong! Robert and I are disabled. We both have problems walking. I’ve had 2 significant falls in the last 3 months. My Parkinson’s is rapidly worsening. Not only is walking difficult, it is so painful. The airlines were notified, in advance, that we needed wheelchairs and assistance boarding the plane. An agent met us at the gate and informed me that we would have to walk up a long ramp and wait for him in the transport cart. He stated he needed to help other passengers first. I informed him that Robert and I couldn’t walk up the ramp and needed wheelchairs. I also explained that we had 45 minutes to get to our connecting flight. My Parkinson’s is bad, Robert’s neuropathy is worst. There was one wheelchair available so I gave it to him. I had two choices, miss the plane or walk. A wheelchair showed up so Robert rode and I WALKED THE PLANK. By the time I got on the cart, I felt like I had walked a 10 K.

It’s erie, but I thought the transport cart looked like a coffin. Deja vu as he belted us in and disappeared. Unfortunately, the story gets worse. Our driver raced through the terminal and finally parked 29 yards from an elevator. He then told us to get out. WE were told to walk to the elevator and we would find another cart waiting for us once the elevator stopped.I said no! I tried to explain our situation to him but it fell on deaf ears.He told us that’s there were no wheelchairs and the only way to reach our gate was to walk. He complained that he was just one man and he wasn’t responsible for the mess we were in. That was BULLSHIT! There wasn’t an ounce of compassion in his voice and his actions. I stopped a group of pilots and asked for help. They couldn’t be bothered.

So again I struggled to walk. Robert couldn’t walk so a wheelchair miraculously appeared. It was at that time that Robert realized that his gel, anti ulcer pad had been left in the haste of changing carts. While we waited in yet another dumping ground, Robert requested that someone call and try to recover his cushion. His request was refused! By this time, Robert could barely stand and fell into the new cart.

Again, we were loaded onto a cart and told to wait. For some unknown reason, the new driver did not have permission to drive the cart.

I was livid! Where begging failed, anger and a stern voice succeeded and she took us to our gate. There was an elderly Mexican with us. For some strange reason, she ordered him to “STAY” as if he was a dog. I regret not defending him!

I had a nightmare last night. I have to fly back to Dallas in 2 weeks on my return trip to Charlotte. MY nightmare is that I sat for days in the American Dumping ground and eventually there I am again, humiliated by the whole experience. I truly don’t know how I’m going to get on another American flight.

There is a bright side to this story. Once I made it to the plane, the two flight attendants recognized my distress and immediately went into action. Cory and Lexi Platz (a father daughter team) took me slowly and cautiously to my seat and checked on me throughout. Unlike the pilots, they CARED about the people on that flight. American Airlines would do well to model their crews after the Platzs.

As to the pilots, I thought the captain’s job was to protect his passengers. If that is true, then the seven pilots I approached pleading for help sure did fail.

Shame on American Airlines and the companies they contract with for handicapped services. I am sure my rights were violated. My friend and I were violated. What’s it going to take to fix this?

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