My-My-My-My Sharona – The Healing Power of Music

Music is a big part of my life; it motivates me, comforts me, angers me, and loves me. There are times it is like the artist is singing directly to me. I had the privilege of meeting many artists throughout my life, including producing concerts for hundreds of bands and managing two artists. I have produced shows for everyone from Billy Currington to Toby Keith and Night Ranger to Three Dog Night and Grand Funk Railroad. And yes, I had to throw sweet sweet Connie out of a backstage meet and greet. I have loved every one of them. Each one of them gave me a different perspective on music. It is one part of my life that I miss very much. I have some pretty entertaining stories from some of these bands.

I am a lapsed musician myself, but recently I have started playing guitar and writing again. I have started taking some lessons from a guy from our church who got his degree in guitar. I find that music, playing, or listening is very cathartic. According to the American Psychological Association, while music has long been recognized as an effective form of therapy to provide an outlet for emotions, the notion of using song, sound frequencies, and rhythm to treat physical ailments is a relatively new domain, says psychologist Daniel J. Levitin, Ph.D., who studies the neuroscience of music at McGill University in Montreal. A wealth of new studies is touting the benefits of music on mental and physical health. For example, in a meta-analysis of 400 studies, Levitin and his postgraduate research fellow, Mona Lisa Chanda, Ph.D., found that music improves the body’s immune system function and reduces stress. Listening to music was also found to be more effective than prescription drugs in reducing anxiety before surgery (Trends in Cognitive Sciences, April 2013).

“We’ve found compelling evidence that musical interventions can play a health-care role in settings ranging from operating rooms to family clinics,” says Levitin, author of the book “This Is Your Brain on Music” (Plume/Penguin, 2007). The analysis also points to just how music influences health. The researchers found that listening to and playing music increase the body’s production of the antibody immunoglobulin A and natural killer cells — the cells that attack invading viruses and boost the immune system’s effectiveness. Music also reduces levels of the stress hormone cortisol.

When I have suffered from significant stress or severe pain or bad days from Parkinson’s, I have found that listening to music has had a substantial impact on my symptoms. I love all kinds of music. There are very few kinds of music of which I don’t listen. When I was running every day, and when I was running half marathons, I always had to play music. It helped me keep my pace, which helped me ignore the pain from which I was suffering. I have found that the studies are accurate ad that it does reduce pain, reduces stress, and helps with emotional wellbeing. Let me encourage you to get a subscription to a music service like Google Play or Apple Music. They are relatively inexpensive but provide unlimited downloads of your favorite music. I have music for meditation, for exercise and even to help me sleep,

My love of music started over three and a half decades ago when I was in the Birmingham Boys Choir. Our director, who is still the director today, introduced me to music from around the world. I sang the Hallelujah Chorus with the Birmingham Symphony Orchestra and performed in the opera La Bohem. I attended the Royal School of Church Music and studied years of music theory. These developmental years, I believe, is what gave me my love of music. I don’t think I realized until I was much older the amazing healing qualities that music has. Why do you think many surgeons play music in the operating room? Studies have shown that it reduces the level of stress in the operating room and increases healing time for the patient. At a very early age, I tried to introduce my children to music. My oldest son played tuba and sousaphone through college, and my youngest son now sings in the Birmingham Boys Choir and wants to be a music teacher when he graduates college. According to Dr. Ibrahim Baltagi, It is proven that music has a role in brain development before birth. Listening to music during pregnancy will not only have a soothing and uplifting effect on the pregnant woman, but also a positive influence on the unborn baby.

Around 16─18 weeks of pregnancy, the little one hears its very first sound. By 24 weeks, the little ears start to develop rapidly, and babies have been shown to turn their heads in response to voices and noise in the last few months of pregnancy; an unborn baby can recognize her mother’s voice, her native language, word patterns, and rhymes.

So, the bottom line is, embrace music. It can provide a source of heeling that you don’t have to inject or swallow. If you are living with a chronic illness, why not try it. The worst-case scenario is you get some enjoyment out of listening to something new, but I think you will find that you get many more benefits from it than you thought you would. I also recommend making sure you download Shazam. When you here a song you like on a TV show or a movie, press the Shazam buttton and it immediately identifies the song and artist and adds it to your playlist. It’s a god way to get introduced to new artists. So go out and discover new music. Enjoy

Hope In All Things

If you have ever been in the hospital, you know that you are ready to go home by day two. I think being in the hospital makes you feel worse than if you were at home. Last month, I was in the hospital for eight days, and I am writing this on day five of my stay at the hospital this month. The reality is, the food is terrible; they poke and prod you every hour, so you never get any rest, and the beds are awful. I had the bonus of having a TV in my room about the size of a postage stamp. It turns out having a tiny TV was a good thing; I never turned it on, so I have no idea what is happening in the world right now.

So, last night, the infectious disease doctor who has been managing my case, albeit from afar as it was the first time I had seen him since being admitted, told me everything looked good and that I could go home last night. I was excited. My wife happened to be here already, so she helped me get everything packed up, and then we waited for about an hour and a half. The timing wasn’t great as the doctor had come to see me right around 7:00, which is shift change for the nurses, so I knew it would take a while to get discharged.

After an hour and a half of patiently waiting for my nurse to come to remove my picc line and discharge me, my nurse came into the room and said, “is there anything you need right now?” I told her that my doctor said I could go home and be discharged tonight. She then informed me that I would not be going home. She said my attending physician said no, and he wanted to wait until today when he saw me deciding whether or not to discharge me.

So, basically, there were two larger than life egos on my care team, and there was only room for one at a time in my orbit, and here I was stuck in the middle. All I wanted was to go home and sleep in my bed and take a shower. Please don’t misunderstand me; both of my doctors are excellent doctors with very nice bedside manners. Apart they are great, but when one massive ego challenges another large ego, look out for the fireworks. My Infectious Disease doctor didn’t have permission to discharge me and should have reached out to my attending before telling me I was going home.

I was crushed. Yesterday would be twelve days in the hospital in the last forty-five days, and I was so tired of being here. The antibiotics they had me on were the big guns, so I was having symptoms related to them; I was nauseous all of the time, and my taste buds were all out of sorts. Before they would let me go home, they wanted to see what the blood cultures showed. The crazy thing about blood cultures are they can come back in as few of days as two up to five days on the outside limits. Mine were taking their good sweet time. It is hard enough to be in the hospital, but I needed this infection to be gone so I could get off all of these antibiotics.

Hope is a precarious thing. It can motivate and help keep one’s spirits up, but it can also be damaging. If you are hoping for something and then it never comes to fruition, it can crush you emotionally, spiritually, and even physically. I have seen it keep a person going, and I have seen it destroy a person’s faith. It is easy to get wrapped up in other people’s issues, and when their problems don’t resolve in the way that they had hoped, they are blindsided.

Hope is defined, according to Dictionary.com, as the feeling that what is wanted can be had or that events will turn out for the best. Faith, like hope in scripture, describes it in Hebrews 11:1 (NLT): Faith shows the reality of what we hope for; it is the evidence of things we cannot see. Faith and hope are uniquely tied together. You need to have faith to have hope. That may be faith in God, in science, or many other things. Hope, with the right expectations, can bring peace and give clarity to an unclear situation. Hope should be in all of us, but unfortunately, some people, because of events that took place earlier in their lives, have abandoned hope and cannot cope with any adverse circumstances that come their way. You can have hope again, regardless of where things have taken you. My hope comes from God. Everyone is different, and I am not condemning you if you believe differently than I do. In the deepest part of me, I believe God has a plan for me. If He has a plan, I have hope in the future and that it will all work out to His glory.

So I am finishing this post from home. The attending doctor in the hospital who wouldn’t let me last night came in my room around 8:00 and said, “you ready to go home?” I wanted to say something inappropriate, but I refrained. Whenever I go to the doctor or am in the hospital, I end up waiting a long time, so I wasn’t surprised when two doctors couldn’t come to a simple decision. No matter the situation and no matter how frustrating it is, I still have hope that it will work out. So what is one more night in the hospital? It is easy to get frustrated at doctors, at hospitals, and circumstances in general, but what does that solve; nothing. It is better to accept your conditions and have hope. Now I am not saying you should take abuse or mistreatment or discrimination. If you are a victim, stand up for your rights and speak up.

The bottom line is you will face difficult circumstances in your life, especially if you have a disability or a chronic illness. It may seem like you are alone in all of this, but if you have hope, you can see yourself through any situation. I know it is what keeps me going every day. If you are reading this and are searching for something to keep you going, try looking past your circumstances, looking for the best outcome, and hoping that everything will work out for the best in the long run.

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.

Don’t give up hope

Applying for disability can be one of the most frustrating processes. Did you know that the Social Security Administration denies 97% of all initial claims? My first bit of advice is get a lawyer. It’s almost impossible to navigate the process on your own. A lawyer experienced in disability claims knows the process and can help you along the way.

I first applied in February of 2018. I had an appointment with a doctor that is a contractor for the SSA. I got my denial letter about a month later.The next step is to file an appeal (this is where you really need the lawyer).

After you file for an appeal it takes a couple of months to get a date assigned for a court hearing with a federal judge. Depending on where you live that can take anywhere from two to four years to get a hearing date. In Birmingham its about a year old and a half. When I finally got my date is was for October of 2019.

Now I was very fortunate that I had Long Term Disability Insurance so I was at least getting an income while I was going through this process. As a side note, no matter how old, or young you are, if you have this option through your work or through an independent agent, do it. You never know when something in your life might change and you might need it.

When my court date finally came I was nervous. I felt like I had one chance to convince a judge and a doctor that I couldn’t work. When I arrived, I met my lawyer in the lobby and waited for about an hour (they are always running behind). When we were finally called back, we were in a small room with the judge and a court reporter. There was an occupational health doctor on a speaker phone. The judge was very prepared and reviewed all of my medical files. He asked me a few questions and proceeded to ask the doctor for his recommendation. Your fate is really in the hands of the doctor who determines if there is any work that you can do. Luckily, the doctor on my case said no there was no gainful occupation I could do.

Now sometimes if you get the right judge, they will tell you then what their recommendation is going to be. Mine did not. At this point he just excused us. My lawyer said we should get the judge’s ruling in a week or two. Several months later I still had not received a ruling so my lawyer made a recommendation. She told me to reach out to my local congressman and ask that they intervene. I had to fill out a release and fax it to my congressman’s office but within one day of that, we had a ruling from the judge. He was going to award me full disability.

By the time I got the letter from the judge it was mid January 2020 and I got my first check in February. The other thing you will get at this point is back pay starting six months from the time you filed for disability. This is typically where your lawyer will get their fee. In my case I had to pay back all of the back pay to my insurance company.

The whole process took me almost exactly two years to complete. It was very frustrating at times but in the long run it was worth it. Be patient, get a lawyer and plan on sticking it out for a while. I realize if you have no income at all coming in these may seem like empty words but all I can tell you is don’t give up hope.