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Parkinson’s Disease Answers are a Phone Call Away

Interview with Beth Coffman

Beth Coffman lives in Traverse City, Mich., and is 79 years young. She is a wife, mother, grandmother, great grandmother and a member of numerous community groups. Five years ago Beth learned that she has Parkinson’s disease (PD). After retiring from her 40-year teaching career she still strongly believes in the power of information, which is why she calls the National Parkinson Foundation (NPF) Helpline.

Beth’s lifestyle and mobility is now restricted due to Parkinson’s, but she remains active. The keys to her life are family, education and accomplishing at least one thing every day. She doesn’t let her PD interfere. Beth wants to tell the Parkinson’s universe about her Helpline experiences, which have led her to feel empowered. Since its 2010 inception, NPF’s Helpline has answered more than 51,000 calls ranging from Parkinson’s symptoms and medication questions to healthcare professional referrals and providing callers with emotional support. Beth has called the Helpline more than 10 times about different PD topics and feels that each time her question was answered.

Question: Paint me a picture of your life.

Answer: I was a teacher for 40 years. I have a fabulous husband, Ken, of 60 years. I wish I could tell you I knew how to knit and crochet and embroider, but I don’t. Education is my background. I’m short of hobbies because people are my interest. I read and am involved in book clubs and the church. I’m very glad to have a good family. Even on my worst day when I have a good family and strong faith what more can you ask for?

Question: Why do you call the NPF Helpline?

Answer: The specialists I speak with are very knowledgeable. They are very courteous and are responsive to what I’m asking. There is no belittling like it’s too small a question or too intricate a detail. They are attentive and you feel like they are really trying to be helpful. Many of the people who have Parkinson’s are elderly people. As we get into this age range we are not as capable of memory and dexterity as we used to be. It’s very nice to have a person to talk to because many of us can’t function on the computer as well anymore.

Question: What type of questions do you ask the Helpline specialists?

Answer: I ask a lot of minutia that is needed to live well each day with Parkinson’s.

Question: What is the best advice the Helpline has given you?

Answer: There’s hope, and keep the faith. Keep asking questions. We’re there for you. That kind of thing is exceedingly important. The idea that you have this disease but you can still live a satisfying life. The positivity that they feed back is very important. Whether asking about a new medication or lifestyle, they provide you with hope, encouragement and assurance that you are not alone.

Question: The Helpline mails many callers a customized packet containing materials pertaining to the issue discussed on their call. Have these materials helped you?

Answer: The material is excellent. As I have talked with the Helpline they recommend other [NPF] books depending on our conversation. I called when I received the book on exercise and was told to reference a certain page and we went through the materials together. They are very sensitive to the fact that I stay up to date. Right now exercise is imperative to me and I called the Helpline to learn more about what I can do to stay in good shape. I walk two miles a day, six days a week and my physician says it’s remarkable that I’m this physically healthy.

Question: How would you describe the NPF Helpline to a friend?

Answer: You’re very fortunate to be able to contact the Helpline because they are ready, available, willing and supportive. You can get your questions answered and feel more positive about your circumstances.

Question: Have you recommended the Helpline to others?

Answer: I really do. I do more so for people who do not have Parkinson’s. I share with people I’m mentoring and social contacts. I tell my children and grandchildren. I’m very upbeat with convincing people to pursue whatever their problem is or become educated on problems that may affect them. If they don’t have Parkinson’s, they may know somebody who does and they can become aware.

Question: You have called the Helpline many times. How can NPF improve the Helpline?

Answer: I have no recommendations there. If they can’t speak to me then they call me back. They’ve been really faithful on that. I appreciate their up to date information. I keep a note on what day I called and with whom I spoke. And they do too. That means a lot to me and I think it would to anyone who is not feeling well.

Question: Any final thoughts you’d like to share with the Parkinson’s community?

Answer: I want to go to bed every night and feel that even though I haven’t been energetic and even though I have a lot of fatigue I did accomplish something. And that makes me feel much better. I find it very important to prioritize. As I age with this disease I have days where my energy is limited and I get tired just thinking about managing my medicine schedule. On these days I set out to accomplish one or two things that fits into my priorities. That way if I’m not feeling very good that day I can go to sleep and say “I’m happy to have accomplished this one thing today.”

We’re in a pretty chaotic world and it’s very important for us to share encouragement and to share any happiness that we possibly can to improve our lives and the circumstances we find ourselves in.