Throughout  my short journey with OT, I have had a lot of friends, family, doctors, and lawyers, telling me that I had to be patient.  It’ s been just over 9 months since I last worked for Giant Eagle as a pharmacist.  I went through a few months of waiting for my first Neurologist to figure out whether I had early onset Parkinson’s disease or Essential tremor (a disease that I did not mention in the last post while talking about a tremors, this disease affects nearly 10 million Americans.  These tremors are also rhythmic tremors that mainly affect the upper body, but can also can radiate throughout the body).  The way they determine Essential tremor is treatment based, meaning they give the gold standard  treatment of propranolol, which is a beta-blocker that was originally designed for blood pressure, but also works for tremors or even nervousness.  Some people who are afraid of public speaking will take propranolol before they have to get in front of a crowd.

As I was being patient about my diagnosis and taking ever-increasing doses of propranolol, that did nothing for me, my original Neurologist was attempting to get me approved for a procedure that is about 95% effective in diagnosing Parkinson’s disease called a Datscan. I waited for a few months for my insurance to first deny initially and then the appeal, my then doctor’s gut told him that it wasn’t Parkinson’s and the propranolol didn’t touch it so it wasn’t Essential, so it must be partly due to anxiety and stress.  Now I had been a retail pharmacist at this point for 17 plus years, so I know what anxiety and stress feel like, and this wasn’t it.

So, this lead me to the seeking or referrals to bigger medical centers and my eventual diagnosis with OT, where I was told to be patient, because, very little was known about the disease and the treatment was not extremely effective and had to build up in my system to show signs of improvement.  I was at this time placed on short-term disability that had a time frame of 6 months.  I tried this increasing medication and added physical therapy while my condition didn’t improve and my 6 months was getting closer and closer.

After my 6 months, my employer notified me that because I did not come back to work and was starting to be reviewed for long-term disability, that I would effectively be terminated at that point.  Talk about a test of patience!

So here we are a little more than 3 months from me being terminated, and initially denied long-term disability and dealing with appeals and conversations between lawyers from my side and from Giant Eagle about possible accommodations that could be made for me, I sit here as I write being patient.

The point to this is that I am by most definitions lucky.  How you say?  Some people have waited years, sometimes decades for a proper diagnosis of OT.  I have chosen to be voice for these people as well as myself to bring more awareness to miss or no diagnosis of neurological conditions.  I hope by me taking the “risk” of speaking out and the people who read my words sharing them, that somewhere and somehow individuals do not have to endure so much patience and anxiety for a proper diagnosis and answers to much-needed questions.

So I will continually thank you for reading and sharing my message to as many people as possible.  Please continue to provide feedback and I will continue to be a voice amongst a few until OT is given its proper status and funding as Parkinson’s disease and Essential tremor.

Thank you for reading, have a fantastic day even if you are buried in snow, and as always God bless.




3 thoughts on “Patience

  1. I admire your strength in telling us all about this disease. You are truly a hero. I pray that they find out more about OT, and find a better treatment plan and a cure. God Bles you nd your family, Matt.

    Liked by 1 person

    1. Thank you Ginnie. I appreciate the sentiment, but heroes wear uniforms. I’m just a regular trying to stand up for all of us. Your comments inspire me to do more, so Thank you!!!


  2. Hey Matt, I was a dental assistant with essential hand tremors, I have been on propanalol 10mg twice daily for many years. I use to just take it on days I worked (part time). I also have been on Gabapentin 900mg, 3 times daily, though now 1300mg 4 times daily. I had cervical pain from assisting so long. But OT found its way through those medications.
    And oh my I understand the insurance appeal system. I am Medicare age and with Cigna as a supplement. It took a good case manager to help me appeal, appeal and do a fast appeal to get me to Mayo Clinic for diagnostics. So many failures in that process, I became very depressed. Did not want to be a burden to my husband and had great fears.
    I am so sorry that you are so young.
    My hope is that researchers get on that POT Facebook group and study the ages. There are a shocking amount of young ones. And I like you intend to fight for awareness.
    You and I may be a lot a like. 😊


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.