One diagnosis changes so many lives

Editor's note: Messenger Post Media teamed up with the Parkinson's Foundation of Greater Rochester and UR Medicine Thompson Hospital to share this second part of a two-part series on Parkinson's disease in our community. The first part published last week can be found at MPNnow.com.

Of all the things chronic illness steals, time is the most valuable. Dr. John Paul and his wife, Pat Smith, are determined to preserve their lifestyle as much as possible, but John’s unremitting symptoms require daily attention. Most of the responsibility falls to his caregiver, Pat.

"You just do what you have to do,” she said. For her, that means hands-on care, as well as coordinating the rest of the team that assists her husband.

Five days a week, John’s day begins with a home health aide assisting him with a shower and getting dressed. An aide returns to help in the evening three times a week. A registered nurse from the Veterans Administration visits once a week as well. The Center for Disability Rights provides transportation to a day program twice a week. The Loud Crowd speech therapy group meets weekly; John is an enthusiastic participant. The VA recently provided a course of home physical and occupational therapy. He continues to have regular check-ups by his neurologist and other providers, sometimes several per week.

These professional services provide the base of care, but John is fortunate to have a support system of friends, family and community members as well. A friend picks him up every Sunday to attend church. His pastor visits or calls on a regular basis. He has nieces and nephews in the area who visit and will help with household tasks if needed. Other friends and neighbors visit with news and conversation.

His monthly highlight is the meeting of the Parkinson’s Support Group of the Finger Lakes. Along with being a founder of the group, John remains very involved for the many benefits he gains from it. He is a very social person but said, “Being diagnosed with Parkinson’s made me feel alone in the world. At the support group I know I am not the only one.” The meetings are facilitated by Dr. Stuart Gillum, a semi-retired physician.

“The fact that some people travel over two hours to attend is a testimony to its success; people are desperate to meet other people with the disease,” said Gillum. He echoes John’s thoughts: “Socialization is central to the treatment of any chronic disease.”

“One person will talk about a symptom and then I will see eyes light up around the room, and others will share they have that symptom also,” Gillum said. At the support group they have a place where their tremors, slow movement and speech problems are accepted by others. While they are sharing, their caregivers are as well.

Each meeting, held at Wood Library, consists of a first hour that includes a short exercise session, a featured speaker on a Parkinson’s related topic and a snack time; and a second hour that is reserved for the caregivers and those with Parkinson’s to meet separately. Dr. Gillum leads the session for the people with the disease. He answers questions about new findings and treatments, but finds it is more important for them to share experiences. It is also important for the caregivers to have support and share their struggles as well.

The dynamic of remaining a spouse while being forced into a caregiving role is difficult to balance. As the disease progresses, a form of grieving begins for the caregiver. Their previously involved partner becomes dependent and unable to fully participate in normal married life.

One partner put it this way: “I now have to make all the decisions — that’s sad.” The spouses expressed worries, such as when does encouragement become nagging, and how much good does it do? They have uncomfortable thoughts of, "How do I balance my needs with their need — how do I retain some semblance of normal in my own schedule?”

A common source of frustration is living on “Parkinson’s time.” Pat explained, “Everything happens slowly, every task takes longer than expected.”

However, the person with Parkinson’s thinks he or she can do everything as fast as before and resists being hurried. That is where the frustration comes into play. With good humor, the caregivers resort to telling little white lies about what time an appointment is scheduled. Some even advance the time on clocks, only to be found out by their observant spouse. Most finally resign to always being late.

Living with a chronic illness is a deeply personal experience. Only those afflicted can fully know the walk with a life-altering disease. The loss of independence is a muddy rut, sucking the energy out of every step. However, this personal journey takes many others on the path: Some alongside, some pushing, some pulling. Those fortunate enough to have a devoted spouse experience the sacred promise of “in sickness and health” being fulfilled.

Other dedicated family members and friends do much to straighten the path and move obstacles. Beyond family and friends, paid and volunteer organizations offer skilled assistance. Home health aides, underpaid and hard to find, often feel honored to help care for a treasured family member.

The medical establishment may appear impersonal from the outside: A maze of forms, tests, invasive treatments, embarrassments and waiting. But at some point, there is a face-to-face encounter between patient and professional. The professionals carry every encounter with them forever, occasionally as a bright ray of success, often as a feeling of helplessness. Greater society helps pave the way for care. Medicare, Medicaid and other tax-supported programs provide much of the money for treatment of the chronically ill.

This challenge offers an opportunity for anyone to help. A simple visit or occasional meal from a friend is invaluable. Donating time or money to one of the organizations helps support research and treatment. Primary care providers need to be aware of the support groups and treatments available, and refer patients for early interventions. All of us can show some kindness when we hurry around the slower paced.

People with a progressive disease start on a solitary path that becomes a network of many trails. Some have partners to go hand-in-hand for the length of the journey. Guides enter and exit, helping only as far as needed. There is the steady tread of fellow travelers; some leading, some following. It is this interlaced system: Complicated, often inefficient and always expensive that makes up the care of every family walking with Parkinson’s or any other chronic, progressive disease.

Resources

The Parkinson’s Support Group of the Finger Lakes

Email: psgfl9@gmail.com

Meets on the last Wednesday of the month, from 1 to 3 p.m. at Wood Library

Thompson Health Department of Speech Pathology

Call: 585-396-6057

350 Parrish St., Canandaigua

Information for SpeakOut!

ParkinsonVoiceProject.org/speakout

Thompson Health Rehabilitation Services

Call: 585-396-6050

350 Parrish St., Canandaigua

Information on LSVT BIG

LSVTGlobal.com

Parkinson’s Foundation of Greater Rochester

1000 Elmwood Ave., Suite 1600, Rochester, NY 14620

Phone: 585-234-5355

Email: greaterrochesterinfo@parkinson.org 

If you go

Moving Day Rochester is the Greater Rochester Chapter of the Parkinson's Foundation’s annual fundraising walk event. It is a fun and inspiring event that unites families, friends and communities both large and small in the fight against Parkinson’s disease.

WHERE: Monroe Community College, 1000 E. Henrietta Road, Brighton

WHEN: Sunday, Sept. 30; registration opens at 9 a.m. and the walk begins at 11 a.m.

INFO: Visit www.movingdayrochester.org to register or for more information. Any questions about how to get involved or how to donate to Moving Day, contact Kim Collins at kcollins@parkinson.org or 585-234-5355.