MY JOURNEY THROUGH PARKINSON’S BY CHRIS PRIMM

Greetings Friends

I met Nancy when we were both in a class given by Ohio State University called Speaking With Purpose.   Because this class was on ZOOM, and because Nancy lives in Dayton, Ohio and I live in Columbus, Ohio, I have never met Nancy, but her infectious smile came through very clear on zoom and it was contagious. I thought this girl has Parkinson’s - where is her masked face?  Did she ever have one?  I don’t think so!!!

I was diagnosed February 2019. After my grieving period, I think I just realized...this is it!!!  I can wallow and become a hermit or reach out to others with Parkinson’s and share information about all the help and classes that are offered to us. I think I've become a more positive person and realize I have a lot to be thankful for. I feel so fortunate to live in Columbus which I've been told is the Hub for Parkinson's.   I am so thankful for David Zid and Jackie Russell (co-founders of Delay the Disease) and MJ, our exercise leader at the Gerlach Center and Melinda, who led our  Support Group and all my "Parkie friends" all of who you will hear about as we go further along in my journey with P.D. In addition to all of those I mentioned above, and last but not least I am so VERY thankful and grateful for my husband, Larrry, who is my rock and has been by my side through this journey the past four years.

It was one month after my diagnosis.  I had joined the Lee Silverman’s Big and Loud Program.  In this class I worked with PT, OT and ST five days a week for I believe it was for 6 or 8 weeks.  It was a very intense class and I quickly learned that exercise was the key to living with Parkinson’s.

When that was over I joined the Delay the Disease program at the Mc/Connell Health Center.  This also was great. In that, this is where I met my first P.D. BFF’s Karen & Nancy “P.”  (I.E. Nancy “P”. not to be confused with Nancy Mellon who writes this Blog.)  I remember Jackie Russell giving all of us an assessment to be sure we qualified for the class.  I thought “Oh no, I knew I could not do Sit to Stands if my life depended on it.”  I shared this with Jackie and she simply said  “Nah, that’s not a problem.”  I knew right then and there I liked this lady and we were going to get along just fine,  We learned how to exercise BIG and to speak LOUD.   Hmmm, these two words sounded familiar to me!!! We also learned how to smile again. We would all go stand in front of this mirror that covered the entire wall of the room and we would smile and make faces.  We all found ourselves laughing hysterically.  YUP, we can do this smile thing again.  Piece of cake!!!! 

FAST FORWARD TO SEPTEMBER 2019 – Karen called me and told me about a class at the Gerlach Center.  She shared that it was a Delay the Disease class every Wednesday at 11am and it was fun.  Well, Karen said the key word “FUN” and off I went every Wednesday.  Nancy “P”  couldn’t join us right away because she was still working but soon joined us a few months later when she retired. It was led by a gal named MJ and she was the reason it was fun!!! Besides all of the exercises MJ would have us do, the one thing she did every week was to have the “Question of the Week.”  I remember one week it was what do you think the score of the Ohio State football game is going to be this weekend? 

 MJ went on and taught us how to walk BIG like John Wayne!!  (there’s that word BIG again) And then to end your walk BIG .  BIG walking meant to take long strides when you walked and landing BIG meant to have your legs spread wide when you landed.   This would prevent falls!  If you weren’t walking BIG or landing BIG, MJ would say “Chris, Karen, Diana, Jane, Bill, Clyde, Barb, Marvin and Jim, you are all going down at the mall.”  This made us all laugh.  Afterall, Laughing is the best medicine, but, seriously, we all really knew everything that MJ was doing for us was for our own good!!!  She just always made sure we were having fun too.   Man oh Man, I miss MJ so much!!!

FAST FORWARD TO CHRISTMAS 2019 – Melinda was our support group leader and we would meet with her every Wednesday immediately following MJ’s class.  Melinda planned the Christmas party and asked us all to bring something to eat. Two members of MJ’s class were retired Pastors……Pastor Bill and Pastor Jim and they did a little skit called Parsons With Parkinson’s !!!  and they were great!!!  Oh and before I forget, Pastor Jim would gather us around in a circle of chairs following the Wednesday exercise class with MJ and he had a prayer group.  It was short-about ten to fifteen minutes and the thing that I found amazing was if you stayed for the prayer group, that was fine and if you left right after exercise class, that was fine too.  Never, ever was there any gossiping or judging anyone.  Man oh Man, I miss all those new friends I made!!!!

FAST FORWARD TO MARCH 2020 – COVID 19 hit and oh boy, we all felt the hit, didn’t we?!!!!   They had to close down the Gerlach Center. What did this mean for myself and for all my Parkie friends.  Well, rest assured, everyone and I mean EVERYONE came through for us!!!!!  There was David Zid and Jackie Russell who started offering FREE classes  …. That’s right….. FREE classes on ZOOM and to this day, they are still offering a free class on ZOOM every Wednesday  Then, there is Melinda who set up a  ZOOM for us to continue with her Support Group for all of us Parkies, and then there’s Pastor Jim who created a HOME VERSION of Delay the Disease with sending all of us Jim’s Question of the Week. And YIKES, one year later, COVID was still with us.  None of us ever thought it would go on for as long as it did and to be quite frank, we were all pretty sick of it!!!  We wanted to see all of our friends at the Gerlach Center!!

FAST FORWARD To the MORNING OF APRIL 8, 2021 – My sister Pat, in New York, called to tell me that our Mother had passed away that morning. Mother was almost 102 years old and had led a good life.  She suffered some from dementia and simply could never understand about Covid and why everyone could not come and visit like the way we once had. Mother lived in Assisted Living.

FAST FORWARD TO THE EVENING OF APRIL 8, 2021 - My daughter-in-law, Stephanie, called a family meeting on ZOOM that evening and both her and my son, Michael shared that Michael had Testicular Cancer and was going to start chemo right away! And after lots of rounds of chemo, he is in remission.  I thank the good Lord above every day that Michael is OK.  I really believe that the angel watching over him every day through his chemo treatments and to this day, was my mother and Michael’s  Grandma.

FAST FORWARD TO OCTOBER 2021 – COVID  was not completely gone but it was a whole lot better in Ohio.  So I had gotten with Pastor Jim,   Karen and Nancy P., my three PD BFF’s and asked them what they thought about getting together with some of our other Parkies for Lunch.  I had found a restaurant in Upper Arlington that had a private dining room that held 42 people. They right away said “Sure.”   I proceeded to send an email to almost 30 people and about 14 to 16 responded YES.  And so, to this day, we still have the original people and some new members that we have picked up along the way.  We have become known as the Parkinson Pals.   We’ve even gone so far as to have speakers.  I was at my appointment with my Neurologist, and she asked if we had speakers at our lunches. I said we sure do.  Then she asked me if she could come and speak.  I thought WOW, this is great and she was great as well.  And I think sometimes that this started out as a bunch of Parkie Pals getting together for lunch!!!  But LIFE WAS GOOD!  We were all together again!!!

FAST FORWARD TO SEPTEMBER 20^th, 2022  - On the morning of September 20, I woke up around 3:30 with this excruciating pain in my left side.  After about an hour or so, I woke Larry and told him, “I think I needed to go to the ER.“ He immediately jumped out of bed and got dressed  and off to the ER we went.  You will never guess what happened when we arrived at the ER.  The pain had subsided and was almost gone and I was ready to go home!  Someone came out and wanted to take blood.  And then they wanted to do more tests.  We were still there in the ER until well into the afternoon, when the doctor came and spoke with us said, I had Peritoneal Cancer.  They wanted to keep me overnight and do some more tests the next day.

When I got home I immediately called Karen who graciously volunteered to take over the Parkinson Pals monthly lunches. That’s what I hoped she would do. And to this day, she is still doing it for everyone. The one month, when Karen couldn’t be there, because she was going to be out of town, lots of Parkies stepped up and volunteered.

I was getting chemo every  3 weeks and now it’s every 2 weeks.  I will get # 8 or 9 on Thursday, 4/6.  I know this cancer is serious and although it would not have been my cancer of choice, I have faith that all will turn out well

And so I leave you with a request from me to anyone reading this post.  If you believe in the Power of Prayer, please say a prayer for me that I will beat this awful cancer and also that my son Michael’s cancer remains in remission.

I, in turn, will pray for all of you as I do for all of my Parkinson Pals.

I thank you all from the bottom of my heart!!!

Sincerely,

Chris