My left arm wasn’t swinging in conjunction with my right when I walked. It just hung by my side. Something didn’t feel right. My doctor refered me to a neurologist. A few tests and questions, and minutes later I had a diagnosis - Parkinson’s Disease. It was a shock! I felt sure that we were probably dealing with some aspect of osteoarthritis, which has plagued me for years. As far as I know, there is noone in my family who has had Parkinson’s.
Naturally, it was upsetting, and I was definitely angry because I had already suffered through two bouts of cancer and was dealing with osteoarthritis and back issues. I didn’t think I deserved this! I thought of someone I knew who was bent over and crippled with PD, and I didn’t want to end up this way. At the same time, I thought of how courageous and gracious she was in dealing with it, and I vowed then that I wanted to be like her. However Parkinson’s was going to look like on me, I wanted to have her attitude, staying positive, keeping socially active, exercising as best I could and living life, albeit a slightly different one than I had visualized.
Since my Parkinson’s diagnosis, I have continued with a regular exercise class twice a week, and I also attend BIG and POwerUP, exercise classes designed specifically for those with PD. The Quincy Parkinson’s Support group has been a source of valuable and helpful information. It is where I have made some wonderful new friends too. I continue to do some volunteer work, am active in church and enjoy meeting up with friends for coffee or lunch. I believe that the key to dealing with PD is to keep doing the things you love, as much as the progression of the disease allows you.
I was diagnosed in June of 2021, and these first two years progression in the disease has been slow. I definitely feel changes, but I think the fact that I keep moving is helping to slow the progression. The three F’s - Faith Friends and Family, are also a huge part of my support system. They are crucial in helping me stave off the feelings of anxiety and depression. Both creep in occasionally, but with Faith, Friends and Family, they are easier to handle.
Hi, my name is Terri May. My husband and I started this Support Group back in 2015. I have Parkinson’s Disease. I first thought I had it in 2013 but my doctor didn’t believe me ; I had no tremor, but my voice was changing and my handwriting had gotten smaller and I told my husband I felt like I had to tell my leg to get out of the passengers side of the car. It took a year and a bunch of tests and therapy to finally get a diagnosis. Even though I had been expecting it I cried on the phone when I told my sister I had it. She too has it and was diagnosed in her 40’s.
She called me up one day and asked if I would like to go to a Victory Summit put on by Davis Phinney. I said “Yes” and David and I drove to S. Carolina to participate. We were bowled over by the energy and camaraderie that we felt at the conference with over 600 people attending and wanted to have some of that! I had an appt. with Dr. Hake a neurologist and when I told him that David and I wanted to start a support group he said that he would sponsor us with the QMG . And that is where the story began. A year later we had an Open House with over a hundred people attending. Then we found our home at the Quincy Public Library where we meet on the 2nd Sat. of the month.
My symptoms have progressed to freezing of gait which is one of the
most debilitating symptom I have ; it causes me to fall often. I use a cane most of the time and poles when I walk in the neighborhood but with all the exercise classes I take, I keep pretty limber and active. I have a class every day from Tai Chi twice a week to the Big and PWR and Fit to Fight classes. It keeps me connected to other people also which is very important for people with P.D.. I still have other connections in the community, our church of St. Peter gives me ways to give back to the community from helping at Horizons to delivering soup to sick people . My husband is a great care partner encouraging me and pushing me at times to get with the program! He heads up a Care givers small discussion group that meets at the senior center on the 4th Thurs of the month from 1-2:15, the same time as the p.d. peoples small discussion group is going on also down the hall. I have learned to take each day as it comes, slow down and take time to smell the roses and I have met the nicest people since starting this journey.
Happy Day,
Terri May
Hi, I’m Jeff. I was diagnosed December 23rd 2010 at the age of 43 and my symptoms at that time were a slight tremor in my right hand and a hitch in my gait. As the disease progressed, I began to experience freezing and other motor issues. In 2013, my doctor recommended Deep Brain Stimulation (DBS). At first, I was not in favor of anyone putting electrodes in my head! However, as my symptoms worsened, I decided to go for it. I had the left side done in June 2014 and the right side in December 2015. I have to say I haven’t experienced a tremor from the moment they turned the first stimulator on. My biggest issues are still rigidity and speech.
At the time of my diagnosis, I was a 200 average bowler; I enjoyed playing golf; and I worked part-time at my church building sets, script writing, directing, and stage acting for the children’s ministry. By 2016, I could no longer do any of those. I was devastated. I spent some tearful nights crying out to God for healing. I even had the elders lay their hands on me. No healing came. I knew hadn’t afflicted me with Parkinson’s but couldn’t understand why God had allowed it.
I was so focused on the things I could no longer do I slowly dropped out of everything. I allowed myself to become isolated. COVID didn’t help. It was towards the end of COVID that I came across a production called “The Chosen”. My wife and I binged watched the first three seasons in a week. An episode in Season Three depicted Jesus healing the paralytic at spring in Siloam. Jesus asked the man who had been lying on a mat beside the spring for thirty plus years, “Do you want to be healed?”
The man replied, “Yes.”
Jesus told him to get, take up his mat and walk. And the man did.
When on of the disciples heard of this, he came to Jesus and said, “I heard you healed a man you didn’t even know. I’ve had this issue with my foot all this time I’ve been following you. I want to be healed.”
Jesus put a hand on the disciple’s shoulder and said, “It’s true. I healed the man and he left telling everyone who cared to listen about what had happened and praising my name. Think of how much more powerful your story will be. I’ve nothing for you and yet you believed and followed. You are much more valuable tool for God if I choose to leave you just the way are. The paralyzed man will be rewarded for believing, but so much greater will your reward be because you believed without receiving anything.”
Now, you won’t find the conversation between Jesus and the disciple recorded in the Bible. It was a creation of the writers of the series. However, I believe it is within the character of Jesus. I broke down in tears. I decided that if I’m more useful for the Gospel with Parkinson’s and I can reach more people by inspiring them through my struggle, then so be it. But I couldn’t remain isolated. If I were to inspire anyone, I had to be visible.
I returned to serving in Children’s ministry again. I can’t build sets or be on stage anymore, but I CAN run tech. I also serve as an online host for our internet ministry and I maintain this website. I know I’m not going to better unless God intervenes, but that doesn’t mean I allow the disease to defeat me. I’ve got to continue to find joy in the things I CAN do and trust in God to give me the strength to do them. New Paragraph
Hi, I’m Jeff. I was diagnosed December 23rd 2010 at the age of 43 and my symptoms at that time were a slight tremor in my right hand and a hitch in my gait. As the disease progressed, I began to experience freezing and other motor issues. In 2013, my doctor recommended Deep Brain Stimulation (DBS). At first, I was not in favor of anyone putting electrodes in my head! However, as my symptoms worsened, I decided to go for it. I had the left side done in June 2014 and the right side in December 2015. I have to say I haven’t experienced a tremor from the moment they turned the first stimulator on. My biggest issues are still rigidity and speech.
At the time of my diagnosis, I was a 200 average bowler; I enjoyed playing golf; and I worked part-time at my church building sets, script writing, directing, and stage acting for the children’s ministry. By 2016, I could no longer do any of those. I was devastated. I spent some tearful nights crying out to God for healing. I even had the elders lay their hands on me. No healing came. I knew hadn’t afflicted me with Parkinson’s but couldn’t understand why God had allowed it.
I was so focused on the things I could no longer do I slowly
dropped out of everything. I allowed myself to become isolated. COVID didn’t help. It was towards the end of COVID that I came across a production called “The Chosen”. My wife and I binged watched the first three seasons in a week. An episode in Season Three depicted Jesus healing the paralytic at spring in Siloam. Jesus asked the man who had been lying on a mat beside the spring for thirty plus years, “Do you want to be healed?”
The man replied, “Yes.”
Jesus told him to get, take up his mat and walk. And the man did.
When on of the disciples heard of this, he came to Jesus and said, “I heard you healed a man you didn’t even know. I’ve had this issue with my foot all this time I’ve been following you. I want to be healed.”
Jesus put a hand on the disciple’s shoulder and said, “It’s true. I healed the man and he left telling everyone who cared to listen about what had happened and praising my name. Think of how much more powerful your story will be. I’ve nothing for you and yet you believed and followed. You are much more valuable tool for God if I choose to leave you just the way are. The paralyzed man will be rewarded for believing, but so much greater will your reward be because you believed without receiving anything.”
Now, you won’t find the conversation between Jesus and the disciple recorded in the Bible. It was a creation of the writers of the series. However, I believe it is within the character of Jesus. I broke down in tears. I decided that if I’m more useful for the Gospel with Parkinson’s and I can reach more people by inspiring them through my struggle, then so be it. But I couldn’t remain isolated. If I were to inspire anyone, I had to be visible.
I returned to serving in Children’s ministry again. I can’t build sets or be on stage anymore, but I CAN run tech. I also serve as an online host for our internet ministry and I maintain this website. I know I’m not going to better unless God intervenes, but that doesn’t mean I allow the disease to defeat me. I’ve got to continue to find joy in the things I CAN do and trust in God to give me the strength to do them.
Dave and Terri May,Facilitators
Phone: (217) 224-7027
Email: 1tsmay2@adams.net