Offering support for those with Parkinson’s

In his first inauguration address, Franklin D. Roosevelt uttered the memorable line, “The only thing we have to fear is fear itself.”

Carol Reed of Malta had determined that a little fear won’t stop her from living her life.

Reed has Parkinson’s disease, but she doesn’t let her diagnosis define who she is. She has made it her personal goal to inform, support and inspire other people with Parkinson’s.

Reed, who was diagnosed in 2010, started a Parkinson’s support group with Visiting Angels Owner and Director Mary McIllece. In February, Reed shared her experiences after being diagnosed with the disease with more than 25 people. That first meeting went so well, it spawned a monthly support group for people diagnosed with Parkinson’s and their supporters.

Reed and McIllece met with MidWeek reporter Katrina Milton to discuss the Parkinson’s support group, its founding and what it offers to the community.

Milton: What is Parkinson’s disease?

Reed: Parkinson’s is accelerated aging. It’s the slowing down and aging of the body. It is a neuromuscular and brain disease. There are good days and there are bad days. … Some neurologists say that it is becoming an epidemic. Parkinson’s is hereditary. You have to have the genetic marker and then have it activated in some way, maybe by chemicals or your environment.

Milton: What are the symptoms?

Reed: Your muscles ache and you feel extremely tired, exhausted and fatigued. You also can have uncontrollable movements, tremors, dizziness and fainting. Each of these things comes and goes. But no two people experience it alike. It may not affect another person the same way as you.

Milton: Is there a cure?

Reed: There is no cure for Parkinson’s, just the management of it. You are diagnosed according to your symptoms. When you go to the doctor, they diagnose you by ruling out other things. Vitamins and minerals do help. It’s important to have a nutritious diet and to take your medications. Medicine helps slow down the process. There are also new studies that show that coffee can help delay the process as well. … Although there is no known cure, we must not leave out that possibility. There are so many options and things you can do to help.

Milton: What is the average age of Parkinson’s diagnosis?

Reed: The average age is about 65. But it can be much earlier. Michael J. Fox was diagnosed in his 30s. Go to the doctor when you are first seeing symptoms. Sometimes, it’s an uncontrollable tremor and that’s all it is. In early stages, there are usually symptoms on only one side of the body. In later stages, it progresses to both sides.

Milton: How were you diagnosed?

Reed: I was going to physical therapy at the Rockford back clinic because I had back problems. After the second or third month, the physical therapist told me that they cannot help me and that I should go to a neurologist and be checked for Parkinson’s.

Milton: Why did you help start the support group?

Reed: I wanted to focus on the need in the community, for people who are really isolated or alone. I could be a tremendous help to them. … There’s a need, and I wanted for people in the group to feel valued and appreciated. I wanted to give others hope and support them going forward. Through information and support, I hope to inspire.

Milton: How did the support group start?

Reed: It started when I took a memory test at the senior center in Malta. I didn’t really want to go because I was afraid of the results. But I decided that I was not going to let that defeat me. I did well, I passed, and that’s where and when I first met Mary. It was like divine intervention.  At that time, I was not openly telling people that I had Parkinson’s. But Mary wanted me to talk to some of her clients, and we scheduled an informational meeting.

Milton: When was that meeting?

Reed: That first meeting was in February, and between 25 and 30 people came. After the meeting, they wanted to know why we couldn’t do this regularly. They started to suggest topics, and we knew that this had to become a regular event.

Milton: What topics were suggested?

Reed: They were interested in more information about living wills, estate planning, DNRs and medicine. … We wanted a variety of people, including care-giving businesses, social workers and physical therapists to come and give talks, just so that people could find out what’s available. The idea that there is something available, that there is more, gives you hope. We meet once a month, and we already have a list of topics and speakers that will cover the next year.

Milton: Is counseling important?

Reed: I think that people with Parkinson’s should recognize the importance of counseling. I went to a number of conferences, and one of them had a list of five things that can help: exercise, counseling and talk therapy, medication, diet and a positive attitude. These are thing we can do if we have patience with the process.

Milton: What activities can help deter and slow down the process of Parkinson’s?

Reed: I think that yoga and meditation or prayer can help, as well as just having that calming, alone time. Exercise is crucial. Each of our meetings starts with mind-clearing time, with meditation and yoga exercises. Everybody rushed to get to the meeting, and it’s nice to just let go and relax your body.

Milton: What happens after relaxing and focusing on the meeting?

Reed: Meetings usually last about two hours. The speaker gives a presentation and then they answer questions from the group. Afterwards, we have a discussion session and break up into two groups: the people with Parkinson’s in one room, their family or friends in another room. The discussion groups always are confidential and private.

Milton: What are some of the advantages of having people with Parkinson’s meet together without family or friends?

Reed: By meeting alone with others who have Parkinson’s, it gives people a sense of independence and space. Maybe they feel like they are being dismissed by their family or others are hovering over them. By sharing suggestions and ideas, we come not only to receive, but also to give. It gives the meeting a positive dimension. We become caregivers in a way. … We are able to relate to each other. Everybody is going through the same thing. You can feel that support and make new friends. There is a socialization aspect as well. You finally have somebody speaking your language.

Milton: Why do you think that holding the meetings is important?

Reed: I think that there’s a reason for every experience we have. We are constantly learning. We should look at it as an opportunity to make a change and make a difference. We can make a positive impact on the lives of people. It’s about a need in the community. I’ve been grateful to have yoga and meditation, to develop and learn about these tools that can help. It’s about getting prepared for the next stage and enjoying and making full use of the stage that we are in.

Milton: Do you see Parkinson’s as a death sentence?

Reed: I don’t see it as a death sentence. It’s not the best thing that could happen to you, but it’s not the worst. It depends on how you face it. You can either make it your own death sentence or die from something else. Just because today’s a bad day, it doesn’t mean that tomorrow will be bad, too. Parkinson’s is my history, not my identity.