Tag: Parkinson’s

Never Again!

Let me give you a little background information. In June, I was admitted to the hospital because of a bad cough, high fever, shortness of breath, and a pulse ox of 82%. It turns out I had staph pneumonia as well as staph in my bloodstream. I spent eight days in the hospital getting oxygen, getting massive doses of antibiotics, and generally not sleeping a bloody wink; how can you when they are coming into your room every hour to poke and prod you.

Let me first say that there are many good doctors and nurses and other healthcare professionals who work at this hospital, but let me make something very clear; I will NEVER come back here again. I think I will have this engraved on my medical ID, so they know not to bring me here. There is no doubt that I have paid for several people’s salaries several times over again with all of the surgeries and hospital stays I have had, but I don’t want this to be about me. I know many of you out there have had similar experiences because you have Parkinson’s or some other disability.

The last time I was here, my stay was okay. Having said that, I tried to explain to them I was in excruciating pain but they wouldn’t do anything about it. This is more common than not in today’s healthcare system. This time, my experience was even more special. Yesterday, when I was in the Emergency Room, I had a very entertaining experience (I’m kidding, of course). My ER nurse was one of the most insensitive, heartless, belligerent people in healthcare I have ever met. If you recall, I have Early Onset Parkinson’s Disease. I have good days, and I have bad days. There are days where I can barely walk, even with a walker. I fall about once a month. Some days I shake uncontrollably and other days, I do not. Well, yesterday was a bad day. I was trying to go from my walker to a wheelchair and I was shaking badly. My right leg is so weak (more on that story in just a bit) that I had a hard time getting into the wheelchair. I was having such a bad spasm I was falling forward out of the chair. There was nothing I could do, and I asked for help so that I didn’t fall. So, what did our nurse of the year do? She called security to have them shove me down in the wheelchair, then three times over the next little bit of time that I was being triaged, she accused me of trying to jump out of my chair. When I finally explained to her that I have Parkinson’s, she quit talking about it.

So, what am I going to do now? I am going to speak with a hospital administrator/patient advocate today, and hopefully, somebody listens. To be accused of trying to jump on the floor in front of other people was probably the most humiliating experience I have ever experienced, especially when I know there are times that I can’t control my body; It betrays me regularly. But to be called out like that in public by a healthcare worker was unacceptable. There are many of you reading this that have been through something similar. Don’t ever think your voice doesn’t count. Speak up, speak out, and make someone listen. This incident was bad enough, in my opinion, that I do not think she should just be reprimanded, but she should be terminated. I am a pretty laid back guy, so coming from me, you should realize how upset I am. If she had worked for me and talked to a fan or customer in that way, regardless of whether she was right or not, I would have terminated her on the spot. I consider this situation even worse. Healthcare workers are supposed to be compassionate, caring, and most importantly, try and find a reason for what is happening rather than just jumping to conclusions.

When you live a life with a disability, you expect some looks, some comments, and maybe even some discrimination, but you don’t expect it from healthcare workers. From them, you expect kindness and understanding. I am not saying everyone should have a pity party but some compassion would be nice. When that doesn’t happen, you must stand up for your rights. If your rights are violated, speak up, and demand that your voice be heard. This is the only way that those of us living with a disability will ever be on an equal playing field with those that are not.

So back to the reason that my right leg is so weak. I found out that the Neurosurgeon at this hospital that did my last surgery didn’t do a stunning job, and that is why I am in so much pain. I had a consult with another physician, and he was appalled at how badly my last surgery was performed. I have a screw from the fusion that is pushing into the nerve root of my back; I have a great deal of scar tissue already built up around the site; they did not remove the disc where they did the fusion, which is just pure laziness and unacceptable. In addition, I have a herniated disc at the level directly above where I had the fusion surgery done. I was getting a second opinion from this doctor who recommended I go back to the surgeon who did all of my neck fusions (C4 through C7) and get him to do a revision surgery on my lower back. As my second opinion doctor said of my surgeon at one of the other hospitals in town, “that may be the most beautiful fusion I have ever seen.”

So, what do I do now? Do I just walk out? No, I can’t do that because if this staph infection is back, it could kill me. So, I guess I will go along with it for now until the absolute soonest I can get out of here. If something like this ever happens again, I will go to one of the many other exceptional hospitals in town. Unless there is a miracle and some essential things change, I will never step foot in this hospital again as a patient. If you have ever been in a situation like this, it can be humiliating and frustrating. Don’t let it go by without addressing it with someone in authority. You deserve the best healthcare available, and when someone violates that trust, you have to make it known.

It Can Happen To Anyone

If you would have asked me seven years ago if I would be sitting at home writing a blog about living with disabilities, I would have told you that you were nuts. I was in the best shape of my life, running six miles a day, running half marathons, training for my first half Ironman. In what seemed like an instant cascade of events, the proverbial carpet was yanked out from under my feet. Now I’m not going to go into all the details because if you have read my blog, you have read about what I have going on.

Now what hit me harder than anything that I had dealt with, which has been a lot, came last November.  I remember it as clearly as if it happened yesterday. I was sitting in a board meeting when my neurologist called. “Mason, we have the results of your DATscan.  It is abnormal.  Between that and your symptoms, you have Early Onset Parkinson’s Disease.” Say what! You mean the disease I watched ravage my dad, I have? I had to excuse myself from the board meeting. I couldn’t focus. I couldn’t think. I was only 47 years old. How could I have this disease?

According to psychcentral.com, The 5 Stages of Grief & Loss are 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them. The stages of grief and mourning are universal and are experienced by people from all walks of life, across many cultures. Mourning occurs in response to an individual’s own terminal illness, the loss of a close relationship, or to the death of a valued being, human, or animal. There are five stages of grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying.

So I started doing research and reading everything I could. I joined several online support groups and found a local support group that meets monthly. I wanted to know everything I could about this disease.  How long did I have to live? What symptoms could I expect? There were just so many unknowns. A good friend of mine who also has PD gave me some very wise advice.  He said “you cannot think about what your life will eventually be like. Just worry about tomorrow, not ten years from now and get busy living TODAY.” This was very difficult for me. I knew what this disease could do. My dad died a horrible death. He was unable to swallow, eat, drink, or even talk. He couldn’t sleep, walk, or even speak at the end.  Was this my fate? One thing I was told over and over again was that PD affects everyone very differently and symptoms can be very different from person to person. This did give me some relief.

To say that I have dealt with this diagnosis would be a lie but I am working on it. Every day I learn a bit more. I have seen people react very differently to this diagnosis. Some live in denial (me somewhat) and some change their entire lives. They put everything into their diet, exercise, and every part of their daily routine. I’m a little slower getting there. I have the passion to do it but circumstances have prevented me from making some of the changes I need to make. 

One thing that I feel very grateful for is the support structure I have. Between my friends and family, I have a lot of people in my corner fighting with me. It has made the acceptance of this diagnosis much easier. If you don’t have close family to support you, find a support group and get connected that way.  Just talking to others with this disease has a healing effect emotionally. 

At first, I wanted to blame God.  How could He do this to me? How is this just? Then I was reminded of verse in Romans that says this, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28 (ESV). I was reminded that God has a plan for my life and there were others that had a much more difficult than me.  I had been having a grand pity party and I needed to get over it. I then needed to figure out how I could use my circumstances to help others. To get through the terrible symptoms of this disease that I was already suffering from: the tremors, depression, chronic insomnia, falling to name a few. This was an opportunity for me to serve others.

If you have been diagnosed with PD and are looking for more information, please go to my Resources page and look through the sources I have provided. Stay strong my PD warriors and keep fighting. There is more and more research happening ever day that could soon lead to a cure.