Struggling……………..

As you should know by now. April is Parkinsons’s Disease Awareness Month. If you don’t, shame on you. That means you aren’t reading my blog, thats for damn sure. Anyway, I have been posting fairly regularly on Facebook regarding certain facts and information about Parkinson’s Disease in order to hopefully educate people more and more about this disease. Typically I will post something daily but have just not been feeling it this month in that regard. I honestly wonder if people give a shit. Parkinson’s disease is not breast cancer where the entire nation wears pink for a month (which it absolutely deserves). Parkinson’s disease is not in the realm of other cancers to even some other movement disorders such as MS and so on. I feel like it is what it is at this point and I will just continue doing my best to educate people that actually want to learn. I have always dedicated my April blog post to educating people about this disease and include some personal experience as well. This time it’s different. This time it is very personal.

As I have talked about in the past, Parkinson’s causes many of us to speak much softer than we think we are, thereby causing most people around us to ask that we repeat ourselves. I do this quite often without realizing it, and my wife constantly asks me to speak up! We joke and say I am speaking “parkinese”. However, in the past 6 months my voice has gotten even worse. I sound like I am constantly hoarse, or have a sore throat. My throat feels very strained if I have to talk a lot or when I sing. Sometimes I flat out lose my voice but that is rare. I reached out to the Parkinson’s community to seek some advice and as always I got some great advice. Two things I was told, do research on the vagus nerve and make an appointment with an ENT. I started looking into the vagus nerve and how much it controls our body from the brain to the stomach. It has various off shoots that effect other things such as vocal cords. Of course people with Parkinson’s already deal with the lack of dopamine in our brains which in turn causes our brains to “misfire” and communication between the brain and our muscles are interrupted causing tremors and slow gate and so on. It also disrupts nerve communication. The ENT numbed up my nose and stuck a scope up my nose and looked at my vocal cords. She didn’t see any damage but did notice some acid reflux which could cause the hoarseness but I don’t experience a lot of acid reflux so I am leaning toward a vagus nerve issue due to Parkinsons’s disease. In this case, it is causing me serious speaking issues. Do yourself a favor and research the vagus nerve and Parkinson’s. There is so much more I could write about on the subject of the vagus nerve, but thats for another time. I go back to the ENT in about 5 weeks to get checked again. The ENT told me to let my MDS know, which I will do this week. Then I will see what is next. More than likely some speech therapy and voice exercises. I will do whatever I need to do in order to at least be able to continue to talk. Even if I lose my voice, I assure you, I will always find my voice for myself and the Parkinson’s community.

As some of you may or may not know, people with Parkinson’s disease are much more susceptible to skin cancer. I know I have briefly mentioned that before. I had a very small mole removed from my nose about 4 to 5 years ago. It was cancerous, they got it in one shot. I really didn’t think much of it as it was a small bump/mole on my nose that had been there many years. About 2 years ago, I had two other moles removed from my head and neck area but they had been there for many years and they were just a nuisance more than anything and turned out to be nothing. In the last 4 or 5 months I had what I thought was a mole pop up near my right temple. This one was different, it would itch and if I picked at it, which I would do, it would not heal up. Even if I left it alone, I just felt something wasn’t right about it. Of course I had it checked out by my Primary Doctor and was immediately referred to a dermatologist. I went to see the dermatologist about a week ago, they removed the mole, along with another one on my left ear and sent them both off for biopsies. She also did an entire body check of all my moles. I was happy to know that she understood that me having Parkinson’s disease put me at a higher risk of skin cancer. I am always impressed when doctors outside of neurology know about Parkinson’s disease and it’s effects on us. This past Thursday, the dermatologist called me on her day off from her cell phone to tell me that the biopsy came back and it was positive for squamous cell carcinoma and that they wanted to see me as soon as possible to have surgery and remove the remainder of the mole. She stated that the sample they took had some abnormalities and wanted to take care of it. Of course I was on board 100%. She then told me they would refer me to an Oncologist to get a scan to ensure it has not spread anywhere else. Of course that freaked me out a bit. Even though the mole I got removed from my nose years back was the same, it was very small compared to this one so once they took it out, I was done and moved on with my life. Naturally I will follow the doctors and everything they recommend. They are the experts and while this is very treatable, it still freaks me out a bit. People with Parkinson’s Disease are almost twice as likely to get skin cancer on the head or neck area. This is where both of my cancerous moles have developed. This second one seems so much more serious. I asked the dermatologist how worried I should be. She put me somewhat at ease as she said that worried might be a bit strong, but I should definitely be concerned. She was concerned due to the abnormalities the biopsy showed and that is why they were taking all these precautions by referring me to an oncologist and that I would be seeing her (the dermatologist) once every 3 months to continue routine checks. I go in this coming Monday morning at 8 AM to have the remainder of the mole removed. The doctor will remove layers and check each layer until he is 100% sure it is completely removed and then sew me back up. The dermatologist did not seem concerned that it has spread beyond this one spot but mentioned that it can wrap itself around nerves, depending on how deep it goes. I will update everyone once I get the oncologist referral and deal with the scan and so on.

I titled this blog entry “Struggling” because the fact is, I am struggling with this fucking disease. I shouldn’t be, I know exactly what it is, I know exactly what I am up against, and I have a pretty solid idea of what my future will be. On April 22, 2023, I will hit my 9 year “parkiversary” of when I was diagnosed. When I was diagnosed and about a year in, my hope was that I wouldn’t need DBS Surgery until at least year 8 to10. I made it 4 1/2 years and new it was what I needed. While it has obviously been life changing, I can’t help but wonder and worry about my progression. What if I can’t speak in 2 or 3 years? I have read about people with Parkinson’s in their later years not being able to speak and how lonely their world becomes even when surrounded by loved ones because they can’t take part in conversation. I don’t know that will happen but it’s a real possibility. Do I even worry about that? What if I continue to have to keep battling skin cancer?

I really try not to dwell on the future, but this past week had been a double whammy because of Parkinson’s disease. It has been a struggle. I just haven’t been able to not worry about the future for a few days now. What I would give to have one goddamn day where I didn’t have to think about Parkinson’s disease but that is just not my reality. As this disease progresses and more symptoms pop up as time moves forward, Parkinson’s disease just continues to spit in my face. It does that to all of us fighting this. I feel pretty good about getting through what is facing me now. I know the skin cancer can be removed and I know I will have to take some voice therapy classes for my speaking. I am still going to live my best life each day and do my best to make the most of those days. This past week has been a bit of a gut punch, It has set me back some in trying to live my best life each day, and it has been one hell of a struggle. I think I am allowed to struggle some days. I am allowed to acknowledge that I am struggling. I am not looking for a pity party or useless prayers. I just have to get it off my chest. I have to express it and while I am doing that, hell I might as well do it here where other people can continue to learn about Parkinson’s disease and what we go through. I guess what better time to have these two struggles hit me than in April – Parkinson’s Disease Awareness month.

Rest in peace John Humphries. Your Positivity and Determination will be missed. The PD community lost a giant.

~Peace and Love

Darryn