An interview in memory of My “Big Sis” Sharon with Jo Bidwell, Southwest Parkinson Society on June 24, 2024.
Please tell me about yourself.
I am Jo Bidwell, Director of Southwest Parkinson Society. My journey with PD started twenty-seven years ago, for what at the time seemed like very selfish reasons. I did not know at the time where that journey would lead. I was newly divorced teaching part-time at a local college with two small children and frankly needed another part-time job to make ends meet. At the time I accepted the position working with the PD community my organization was part of a national Parkinson’s organization, and I anxiously started a twenty-hour a week job. I was only aware of two people that I knew who had PD and then I knew nothing about the disease. Wow how quickly things changed! On my first day on the job, I attended a national conference sponsored by the organization I worked for and almost immediately I fell in love with the PD community. Little did I know that in a few short weeks not only would my job go from twenty to over sixty hours most weeks, but it would also become my passion and my lifelong career. I raised my children by dragging them to support group meetings and fundraisers, but I am so thankful I did! They have both been involved with the PD communities since that time, and I believe their willingness to serve others in various ways stemmed from the years they spent helping me. In August I will start my twenty-eighth year serving the community that I love and now I get to do it with my two small grandchildren.
I was determined when I started working with the Parkinson’s community to keep it very impersonal and professional, but that lasted for about a day before the patients and caregivers that I work with became like family. Parkinson’s became even more personal almost five years ago when my older sister was diagnosed with Parkinson’s disease and began her short PD journey.
Tell me about your loved one who passed.
Sharon was beautiful inside and out! She was very shy, but you would never know it because she hid it behind an infectious smile. She had big dimples and eyes that seemed to sparkle when she cut one of her smiles at you. She was the kind of person that you felt like you had known your entire life when you first met her. She was kind, generous, friendly, and loving. She was a great friend that you knew you could confide in. Sharon was a devoted wife for just short of 50 years, a wonderful mother to her two sons, a loving grandmother to four beautiful grandchildren and a wonderful sister.
Sharon loved the outdoors; she enjoyed fly fishing and camping in Colorado and New Mexico with our family. She enjoyed hiking the canyons in the Panhandle of Texas, she was an accomplished swimmer and taught dozens of small children how to swim. She once could do an almost perfect swan dive or jack knife off a springboard. She enjoyed horseback riding and for many years rode in parades and rodeos with our grandad. She was very athletic and enjoyed playing almost any sport including boxing (while in college). She was an avid Red Raider (Texas Tech University) fan and attended as many of their events as possible.
Sharon was a strong Christian who lived her faith daily. It was her faith that sustained her during her struggle with Parkinson’s disease.
In her early forties she decided to change careers and became a nurse. Sadly, not too long after completing nursing school and starting her nursing career, a combative patient broke a couple of vertebrae in her back which ended her nursing for a period. This resulted in several back surgeries over the next few years and severe pain for the rest of her life. A positive that came from this tragedy was it allowed her to become a coordinator for a Parkinson’s Information and Referral Center for almost two years. During that time, she developed a program on the Healing Power of Humor for patients and caregivers and took on the persona of “Nurse Feelbetter”. She would wear an old nursing uniform, stuff it with balloons so she looked like Dolly Parton, carry a huge syringe and thermometer, and go into a comedy routine. Then she would remove the balloons, turn around and get serious about the important role of humor. Eventually, she was able to resume her nursing career and retired as a nurse.
In an unusual twist of fate, almost five years ago, as I helped my older sister Sharon and her husband unload their car just before my son’s wedding I noticed a slight tremor in her right hand. Almost jokingly I asked her “what’s up with that, you look like you have PD.” Sharon and her husband were both nurses and she had spent almost two years working with the PD community, so she was very aware of the symptoms of Parkinson’s. Despite that we both laughed it off, never believing that she had Parkinson’s. When they returned to Texas from the Oregon wedding, she saw a neurologist and received the PD diagnosis. She was 63 when she was diagnosed. This was in early July. By October her tremor had advanced from being barely noticeable in her right hand to involving her entire body. Her PD seemed to advance at warp speed from the beginning. We all questioned whether she had it for a long period of time and we had missed the signs, but who knows. She was a gifted athlete and played college basketball back in the mid-seventies and played city league softball and baseball for years. She loved to dance and “back in the day” she and her husband Robert could tear up a dance floor.
Probably because of her athleticism and maybe the endless miles we walked hoeing cotton growing up, her knees were shot and so her gait was affected for several years before she finally had knee replacements. Was it her years of sports and hard work or could it have been PD causing the gait issues? I guess we will never know. By the next spring they had increased her C/L dramatically and she started taking Rytary, but the increase to control the tremor caused extreme dyskinesia. New symptoms continued including REM Behavior Disorder with active often violent dreams, followed by hallucinations and delusions. Almost exactly one year ago after almost burning their house down twice and trying to drink toilet bowl cleaner during a middle of the night dream, her husband and two sons determined it was no longer safe for her to live at home and she moved into a facility. Late March after eating dinner one night she told the staff she wanted to go to bed early, so she said goodbye to her husband, and they helped her into bed. The nurse walked a few feet into the bathroom to get something for her and when she returned, literally a couple of moments later, she found her asleep. The nurse tried to rouse her, but Sharon had drifted off very peacefully into her permanent sleep. It was shocking to say the least and once the sadness and shock passed, we all agreed that it was truly a blessing. She is free of her short battle with PD! The last few months her memory was fully intact, both short term and long-term memory, but she lived most of the time in a delusional world that she could not seem to escape from. During her brief moments of lucidity, she was very aware that her mind was not functioning like it should and she would often remind everyone that she was not crazy. She often questioned why God was punishing her and at least occasionally realized that the people she saw and visited with were not real. During the short almost five years of her PD journey she saw two Movement Disorder Specialists who both seemed to believe she had idiopathic Parkinson’s. Maybe they are correct, but if so, it was the most aggressive form I have ever seen! Oh, how I miss my rock, my “big” sister, the one who taught me so much in life, but how thankful I am that she is free of her PD.
What was it like to be a caregiver?
Since my sister was married and had a family, I was not the fulltime caregiver for her, however, before she was placed in a home, I did take her on numerous outings and visited with her as much as possible in part, to give her husband a break in his caregiving duties. I also took her on a couple of out-of-town trips to see family members and to meet one of our new great nieces. These were interesting and challenging trips to say the least. After she was moved into the nursing facility, I usually spent several hours with her on the weekend.
What do you miss most about your loved on?
It is hard to say what I miss the most about Sharon, because I just miss her, and as I write this, I am realizing just how raw my emotions still are. I miss HER! I miss her smile, her quick wit, her reminding me that she is the much older and wiser sister. I miss her smart remarks, the long conversations we would have about life and death. I miss dropping by her house “just because”! I miss her always being there for me when I needed her the most, I miss her stupid jokes, and I miss her occasionally making fun of me because of some stupid thing I said or did. I miss our family “pick up” games of basketball or softball and playing games of HORSE with her.
I miss our long conversations on Sunday afternoons after she moved into her new home even though she was only lucid for a few minutes of each visit. I miss her chastising me during those conversations because I was interrupting, she and her “friends” even though I was the only other person in the room or telling me I needed to get hearing aids because I did not hear part of the conversation from the other people there. I miss our talks about the cruelty of Parkinson’s disease, God, death and dying, and heaven. I miss reminiscing about our life growing up on a farm in the Texas Panhandle and the hours we spent in the cotton fields, at the swimming pool or hiking in the canyons. I miss the stories we shared about our brother and sister and our parents who had already passed and the fun times we had together. I miss the time we spent going through my mother’s things summer before last after my mother died, before Sharon’s mind got so bad, and the squabbles we had because we both wanted to keep the same insignificant “stuff”, like the little glass Davy Crockett cup that came out of a box of Dash soap when we were just kids. Oh, how I miss Sharon!
How did Parkinson’s impact your family and your life?
I have devoted almost thirty years of my professional career to working with the Parkinson’s disease community or my “family” as I often refer to it. In that time, I have watched many people as their lives were dramatically changed by this cruel disease, and as it slowly robbed them of their abilities and often stole their mind in the process. I have worked with two young men one diagnosed at 12 the other at 15 and I have been awe struck by how they have bravely navigated their journey with PD, even though they missed out on many of the things that other young people experience. I have held the hands of several friends as they drew their last breath and finally succumbed to their battle. I have spoken and sung at the funeral for several patients. I have attended so many funerals and memorial services across Texas and New Mexico that my children often say I am a professional at that alone. Through it all I have been amazed at the incredible positive attitude of those suffering with this disease and how somehow despite the curveball that life has thrown them they manage to keep smiling and laughing and loving. I have never been around people who can maintain so much joy under such horrible circumstances. Simply put I have been blessed!
What else would you like to share about your loved one?
Nothing would please me more than to find a cure for Parkinson’s disease and to be forced into retirement but until that happens, I am going to do all I can to make the lives of the PD community a little easier and to continue to educate people about this disease that I despise so much.