Dad with a physical therapist from The Weston Group
Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s and is the 14th leading cause of death in the United States. It affects an estimated one million Americans and four to six million worldwide,
There is no cure for Parkinson’s, and 60,000 new cases are diagnosed each year in the United States alone. Source: National Parkinson’s Foundation
Since Parkinson’s Awareness month is in April, I wanted to take a few minutes to reflect on my dad’s journey over the past several years.
“I believe your dad has early onset of Parkinson’s disease.” Approximately eight years ago these were the words shared with me by Dr. Thomas Delvin, a neurologist in Chattanooga. My dad, Jim Beam, was about 71-years-old. A jolly, healthy man, he had only been hospitalized once briefly for a work related injury at the Chattanooga Glass Company. I remember being in shock. Being very analytical, I wanted to know how this was possible. Born and raised in Northeast Alabama in 1936, the fifth child born into the family of 10 kids, none of his siblings or parents had a family history of the disease.
Immediately, I started thinking about the farming community he was raised in: the pesticides used on the crops. But he left there at the age of 17 and never returned to live there except for visits while the nine other siblings remained in the same area for a lifetime. With pride and the will to better himself, he joined the U.S. Army during the end of the Korean Conflict. Serving stateside in Virginia, he has fond memories of his time spent there as a military policeman. Little did he know that his time in the military literally would be a life saver.
After dealing with the initial shock for a day or two, I quickly went into my operational management mode asking questions in the medical community, researching support groups, contacting the National Parkinson’s Foundation and trying to identify future resources and services for my dad. Answers were not readily available…neither were resources. But the resounding theme that I heard was, "Keep him moving”.
Recent research from NPF’s Parkinson’s Outcomes Project has proven that two and a half hours of exercise per week has a significant difference on the quality of life for those with Parkinson’s. Regular physical activity is linked to improved mobility and less cognitive decline.
He continued to be an avid walker and started swimming at the Siskin pool for several months and the YMCA. Within one year, I persuaded my parents to sell their home near King’s Lake and purchase a townhome in Red Bank. The townhome had a management company that provided maintenance so my dad would not have to use a lawnmower or get on a step ladder again. I determined if I could get them into a community only two minutes from a hospital, five minutes from their church and between two grocery stores, a drug store, fast food, and more, they could age in place. My goal was to move them before it was physically necessary.
I wanted them to develop social relationships with their neighbors so when the hard times came and in emergency situations, they would have trustworthy friends to call on. Also, I needed them close to me so I could better serve them as a part-time caregiver. Living in Walden, I could travel the W Road and be to my parents’ within 10 minutes. I set their home up with a security system and call button necklaces, I removed the throw rugs, my husband installed grab bars in their bathrooms and arranged for a friend to provide two hours of light housekeeping and run some errands. This allowed my parents to be as independent as possible but I did not know for how long.
Realizing that they had limited resources to work with, I started planning for their future. I checked ever funding stream available and every community resource. A family friend suggested that my dad check with the VA to see if he was eligible for drug or medical assistance. Although dad’s service time did not qualify for any VA pensions, he could receive medical services and assistance with his costly medications. (The general public often hears the “bad” press about services for our veterans. I can honestly say that we’ve received quality care and all medical visits start with a personal “thank you” for your years of service.) This, coupled with my dad’s SSI and work pension, could mean they could remain in their townhome.
My mother, Carolyn Beam, was dad’s main caregiver. She had already suffered from two mini strokes and had developed Chronic Kidney Disease, so her health started digressing and dad had to keep assuming the role of caretaking for him and mom. My brother, Doug Beam, a registered nurse, and I would take turns visiting them every other day as her health further declined. I would take dad to the VA clinic in Chattanooga and make at least two trips per year to see his neurologist in Murfreesboro.
I then learned my dad’s chronic condition qualified him to receive five hours weekly assistance from a homemaker aide thru Rescare services. These aids were wonderfully trained and this allowed my parents to remain at home. The goal was to allow my dad to lessen the role of caregiver and concentrate more on his own exercise and physical therapy. I became their main shuttle service averaging one-two trips weekly to a physician’s appointment at the VA clinic or for private physician appointments for my mom. We were managing until my mother started having falls about two and a half years ago. Each time dad would call a neighbor to help pick her up and me to take her to the emergency room.
Fortunately, there were no broken bones until a traumatic fall last summer which resulted in a 33-day stay in rehabilitation at Alexian. After her release, I determined that it was time to try out an assisted living center. Because of being proactive earlier, I had already researched several centers and basically narrowed my list to two. Knowing that my parents thrived on having family support and social interaction we chose to place them at Morning Pointe of Hixson. My brother and I live only seven minutes away. After one month, we could see much improvement due to better nutrition, having a nurse administer their meds on time, having social activities with other residents, community speakers. My dad started “living” again. He enjoys playing bingo and Rook at the center, pedaling an exercise bike and getting physical and occupational therapy services onsite through the Weston Group. Right now, he is working on balance and hip flexion to be able to get in and out of the bed. Something many of us take for granted. He enjoys attending two church services on Sunday evenings and a Wednesday evening worship service in the activity room at the center. He volunteers onsite with Hixson United Methodist Church packing “Food for Fuel” nutritional snack packs for area school students.
Realizing it was only a matter of time until I ran thru most of their savings, I decided to inquire about the Aid and Attendance pension through the VA. My husband started checking over their budget, squeezing each penny, and keeping a spreadsheet of expenses, we were able to assist my dad in making an application last December. Last week, we finally received a huge blessing…Veteran’s Affairs approved my dad’s application for Aid and Attendance. This should help with his costly care and allow me to know he is in a “safe” place along beside his wife of 58 years. If you or a loved one has a recent diagnosis with this disease, please learn what you can now. It will make the journey a little smoother and help you to plan and make necessary adjustments as needed.
As a daughter, I pledged to walk this journey with my dad and be there for him. I try to do something each day to fulfill that promise. I have been blessed to watch him remain optimistic and be an encourager to me and others. I realize that I have been given the gift to say a long goodbye vs. a quick one. I am convinced it takes a village, a family, a strong support system to live with Parkinson’s. The patient has to have an advocate. Many days, I want to run away from that role. I want to retreat to the Bahamas for a month. I want to live my life. But then I stop and pause, and thank God for another day, a day to say grace and know that he has provided for my parents and to “keep us moving” and learning together. I realize that I am living in the present more while praying for the future.
If you or a loved one has a recent diagnosis with this disease, please learn what you can now. Education will enable you to know when it is time to make the necessary medical, financial and lifestyle adjustments to manage this chronic disease. There are several programs available, but we still need many more for our Hamilton County residents. I asked the National Parkinson’s Association today for the number of Parkinson’s disease patients in Tennessee. I was told the Centers for Disease Control and Prevention is not recording that information, yet. But it is many; I see them, I talk to them every week. So first, know you are not alone.
Contact the National Parkinson’s Association toll free at 800-473-4636 or email them at helpline@parkinson.org. Their website is parkinson.org
The association offers several helpful booklets to educate you about the disease and identify other available resources. Next, visit or call area social service agencies to find out what is specifically available in our community. I would highly recommend a Thursday exercise program designed specifically for Parkinson’s patients. It is led by Shelly Mitchell, an occupational therapist from Life Care center at Manor House Assisted Living on Mountain Creek Road. You can reach Shelly at 693-2603. Talk to your doctors and ask the hard questions. Together…lets learn, share and keep our community moving.
Today, I received word that a personal friend, much younger than my dad and with an earlier, more aggressive form of Parkinson’s is not fairing as well. He is probably closer to the end of his journey. I look forward to a day when we can nationally and locally place as much emphasis on a cure and further research for this disease as we do for others more commonly advocated.
Brenda Purcell
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We read with interest Brenda Purcell’s opinion piece and we hope that Ms. Purcell and her family and friends know of Siskin Hospital’s Parkinson’s Disease Support Group, which exists to provide encouragement, information, and camaraderie for those coping with an ongoing medical condition such as Parkinson’s.
It meets the first Tuesday of the month at 4:30 p.m. at Siskin Hospital, Conference Center (2nd Floor). For more information contact Will Hutchinson at 634-1578 or whutchinson@siskinrehab.org.
On May 3 join us for a research update on cognition in individuals with Parkinson's from Dr. Chris Young. We will then be learning more about Rock Steady Boxing, a new exercise regimen for those with PD.
For more information about the support groups at Siskin Hospital, visit https://www.siskinrehab.org/resources/support-groups/#Parkinson
Deborah Taube, M.A.