You Can’t Win Them All

Last updated: December 26, 2015

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[Guest post by Mike Murray, originally published on the Accessibility SIG blog in 2014]

But fear of failure is not an option

Photo of Mike Murray
Mike Murray

It’s 5:00 in the morning on September 7, 2014. I haven’t been able to sleep, and I suspect that’s for two reasons. Leg cramps are one of my symptoms of Parkinson’s disease (PD) [sic], and at 2:00 this afternoon I will be attending the funeral of a dear friend (I’ll call him Thomas) who was diagnosed as having PD 22 years ago.

Before continuing, I feel the need to make an important point. In spite of obituaries, articles, news programs, movies, etc. that would have you believe otherwise, PD is not fatal; however, the Center for Disease Control rated complications from the disease as the 14th top cause of death in the United States. There is no cure for PD, but it is treatable, and, again, it is not fatal.

I had been thinking about Thomas for several weeks and finally decided to call him. Looking back, I think fear of what I might find led to my procrastination. Seconds later I was listening to a stuttering, monotone, recorded voice saying, “The number you have dialed is no longer in service.” To shorten this story a wee bit, a wonderful lady at the high school (we’ll call her Claire) where my friend had worked did some searching and found that Thomas had been placed in a nursing home and then moved to a hospice facility. The following weekend, my wife took me to see him. When our eyes met, I could tell he recognized me.

Symptoms

I have read and personally observed that seemingly no two people with Parkinson’s exhibit the same symptoms. (There are many.) My friend’s most obvious symptoms were shaking, stiffness, general weakness, and difficulty speaking. His speech volume was very low, which doesn’t fit well with my deteriorating hearing. I wanted to ask him so many things, but I simply could not hear his responses.

On my next visit, I brought along an inexpensive amplification device that I use to hear the television. All Thomas had to do was speak into the microphone while I wore the headphones. Unfortunately, he could only hold the microphone close to his mouth for a few seconds at a time and pulled away any time someone tried to hold it for him. I could tell that he was deteriorating cognitively (i.e., mental processes). I could also sense that he was giving up. He no longer wanted to live.

The Perfect Solution

Not being one who gives up easily. I scoured the Internet and found what I felt was the perfect solution – a powerful amplifier with speaker. A headset would position the microphone close to Thomas’s mouth so he wouldn’t have to hold it. In order to pay for the 100-dollar unit, Claire contacted several of Thomas’ friends at the school who quickly came up with the money to pay for the amplifier. She ordered the unit, which only took three days to arrive at my house.

Not wanting to wait until Saturday so my wife could take me, I excitedly made arrangements to be picked up by an access-equipped bus and was at the hospice facility just before noon on the following day. I found Thomas sitting in a wheelchair in a hallway next to his room. As I approached him, he gave no indication that he knew me, but the thing that mattered was that I knew him. I put on my biggest smile, greeted him, and put my arm around his shoulders. I could feel him trying to pull away, but I was persistent. I talked with him about how we first met and some of the good times we have had together.

I explained to Thomas how the amplifier was used and demonstrated it on myself. But when I tried to place the headset on his head, he quickly recoiled and put both of his arms in front of his head in a defensive position. I was shocked at the same time my heart sank. I was too late.

Over the next few days, Claire visited and tried to get Thomas to use the amplifier. She said he left the headset on one time for about five minutes and that “it worked perfectly.” Stressful situations amplify my Parkinson’s symptoms, so it was almost two weeks before I could face my dear friend again. But before I could get there for one last hug, Claire distributed an announcement that he had passed away.

As I sat in my power chair at the cemetery, dark clouds fittingly rolled in and began soaking everybody. I learned a long time ago to “feel my feelings” so that I can let them go. I did that in the car with my wife.

Lesson Learned

I thought for a very long time about calling Thomas, but I kept putting it off. Just as you would do for a malady of your own, counsel your friends about seeing a medical professional as quickly as possible. Trust your instincts. The sooner you are treated, the more likely it is that your malady can be slowed down or corrected.

Epilogue

As my wife and I sat in our car, both completely drenched from the now heavy downpour, she started the car and turned on the heater. At that moment, I realized that we were shaking from the cold rain, but I didn’t feel cold. Instead, I was filled with warm thoughts. I felt grateful for the wildlife that remained happy and healthy. I felt grateful for Central Florida’s many pristine lakes looking even more beautiful now with their new supply of “liquid sunshine.”

“Ready to go?” I barely heard my wife’s question, but managed a head nod. Mentally, I was no longer in the car. I was at the school’s football stadium, and Thomas was walking toward me with his hand extended and a smile on his face. “Hi there, Michael!”

Dr. Seuss once said, “Don’t cry because it’s over, smile because it happened.”

I’m smiling.

Mike

For more information about Parkinson's Disease, see https://accessible-techcomm.org/parkinsons-disease/.

The Elephant in the Room

Last updated: December 26, 2015

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[Back in May 2014 when this blog was a part of the AccessAbility SIG of STC, Mike Murray, a dear friend and co-founder of the AccessAbility SIG, shared his personal story about how he is dealing both physically and mentally with the onset of Parkinson’s Disease. He called it “The Elephant in the Room”. When we moved to our current home at Accessible-Techcomm, the article fell by the wayside, but we are happy to print it again today with Mike’s blessings. The article is adapted from the original posting in the April 2014 issue of Memo to Members, the newsletter of the Orlando-Central Florida STC chapter.]

Photo of Mike Murray
Mike Murray

Being a 30-year member of the Orlando Central Florida Chapter of the Society for Technical Communication (STC), I have grown to love the organization and hate missing meetings. Recently, however, I missed the better part of two years while I was dealing both physically and mentally with the onset of Parkinson’s disease or PD.

During my first STC chapter meeting when I finally felt well enough to rejoin life, I noticed a long-time friend and colleague looking at me. Even after my eyes met his and I mouthed “What?” he continued to look and said in a low voice, “Nothing. I’m just looking.” Suddenly, it came to me – nobody knew what to say to me or how to act. I had become an “elephant in the room.”

The Birth of an Elephant

I was first diagnosed with PD in September of 2008. PD is a progressive disorder of the nervous system that affects your movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while a tremor may be the most well known sign of PD, the disorder also commonly causes stiffness or slowing of movement. PD affects different people “differently.” For me, it made my legs extremely weak, affected my balance, and dramatically changed my voice.

The official diagnosis was very difficult for me to handle. This certainly wasn’t what I envisioned for retirement. I was looking forward to lots of travel, fishing, and my passion – sports announcing. But as PD would have it, I had to surrender my driver’s license. If that wasn’t enough, I lost my announcing voice. As a fiercely independent person, I became dependent and isolated. My whole world changed overnight.

Advice for Other Elephants

Once you have a name for your illness, you should seek out a professional who specializes in it. It may take awhile for your doctor to determine the mix of medications that will do you the most good. At the same time, identify a therapist. It is very important for you to talk about your malady. You have to make it real before you can accept it.

Practice Acceptance

Yes, acceptance is very important. What else can you do? Going the “Why me?” route simply delays your life adjustments. Yes, you can still lead an interesting, fulfilling life. As I said to my son Aaron, “I can’t believe this is happening to me.” His response was, “Well it is!” His message was clear. Quit wasting time, accept it, and move on. I sure did raise some smart sons.

Practice Thankfulness

Counting your blessings with a sense of pleasure and wholeness is a way to be thankful. People with a strong sense of gratitude, love and appreciation don’t necessarily have more than others; they aren’t “luckier.” They simply recognize and see more beauty in their lives. A 2003 study suggests that people who count their blessings are generally happier and healthier than people who don’t. If you ever feel as if anything in your life isn’t “enough,” try practicing an attitude of thankfulness. You might realize how good you have it after all.

How to Deal with Elephants in the Room

Treat people with disabilities as you would anyone else:

  • Welcome them if they are new in your class or workplace.
  • Never stare at them or act condescending or patronizing.
  • Don’t focus on the disability.
  • It is important that you treat them as an equal, talk to them as you would to anyone else, and act as you would normally act if a new person entered into your life.

Don’t be afraid of asking what disability a person is dealing with if you feel this might help you make a situation easier for them (like asking a person if they would prefer to take the elevator with you instead of the stairs if you see they have trouble walking). Chances are, they’ve been asked that question a million times, and they know how to explain it in a few sentences. If the disability resulted from an accident or the person finds the information too personal, they will most likely answer that they prefer not to discuss it.

How to Create an Elephant

Simply ignoring a person with a disability because you think he or she may not want to discuss it may make the person feel inadequate. He or she may think that you don’t want to deal with them as a fellow human being or that you are trying to avoid being asked for help.

It all boils down to this:

  • If your disability makes you think of yourself as the elephant in the room, you will be that elephant.
  • If you treat someone with a disability like the elephant in the room, they will become that elephant.

The simple answer is to just treat everyone as a person, disabilities or abilities aside.

There are no elephants in the room; we create them.

Mike

For more information about Parkinson's Disease, see https://accessible-techcomm.org/parkinsons-disease/.

Parkinson’s Disease

Last updated: March 2, 2015

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  • International Parkinson and Movement Disorder Society is an international professional society invested in the research and care of patients with Movement Disorders, including Parkinson's disease and parkinsonism, dystonia, chorea and Huntington's disease, ataxia, tremor and essential tremor, myoclonus and startle, tics and Tourette syndrome, restless legs syndrome, stiff person syndrome and gait disorders.
  • Michael J. Fox Foundation for Parkinson's Research is dedicated to finding a cure for Parkinson's disease within the decade through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson's today.
  • Michael Stern Parkinson's Research Foundation
  • National Parkinson Foundation aims to find the cause of and the cure for Parkinson disease through research; to improve the quality of life for persons with Parkinson and their caregivers; and to educate persons with Parkinson, their caregivers, healthcare professionals, and the general public about Parkinson disease and its treatment.
  • NINDS Parkinson's Disease Information Page provided by the National Institute of Neurological Disorders and Stroke.