Lonnie Ali is the wife of heavyweight boxing champion Muhammad Ali, a Parkinson's disease caregiver and a tireless National Caregiving advocate. Lonnie has helped launch "Fight For More" - a national campaign that provides support, educational information and resources to people who care for the more than 1.5 million people living with Parkinson's disease. "Fight for More" provides caregiver tips based on Lonnie's real life experiences on how to keep a loved one active, juggle family commitments and manage medications. Gary Barg, Editor in Chief, recently sat down for a wide-ranging interview with this champion for family caregivers.
Gary Barg:
Can you tell me something about your "Fight for More" campaign?
Lonnie Ali:
The "Fight for More" campaign is a national educational campaign for caregivers of Parkinson's disease patients, and the millions of people who care for them on a daily basis. I am so honored to be a part of it and that I am able to share some of the information that I've acquired over these past 20 years and hopefully connect them to a Parkinson's caregiver community. I am blessed to have the connections that I have because of my husband, to assist in his care, and to be able to share that with others.
GB:
It's impossible to talk about Mohammad Ali and not talk about positive thinking. What role do you think attitude plays in the well-being of a caregiver of someone living with Parkinson's disease?
LA:
It's important for all caregivers to keep a very positive attitude and to realize that this is a disease that can be managed. It's not something you have to be afraid of; the more you know, the more empowered you become. If you have a positive attitude, you can put things into perspective and actually become a better caregiver. Keeping a positive outlook on things, and trying to convey that to the Parkinson's patient as well, is extremely important in the management of this illness.
GB:
Isn't it important for your own health and well-being too.
LA:
You need to do things so you can keep that positive attitude. You need to go out and socialize and keep some of the routine you had before. It's important that you realize that you're not in this fight alone, and that there are others who can help you. We're here to help you. You have to call on family members and your support team to come in and assist you. It's important that caregivers realize this, because so many caregivers are used to taking care of people by themselves and thinking that they are the only ones experiencing this. We have a web site,
www.FightforMore.com, that caregivers can go to and not only learn about the disease itself, but also get caregiver tips that I have developed over the last 20 years and tips from leading Parkinson's specialists as well.
GB:
I love your Caregiver Tip Sheet. It's so very empowering. So much of your tip sheet explores caring for yourself as job one for any caregiver.
LA:
Absolutely. Especially if you're the primary caregiver, because everything rests on your shoulders. If you fall or get ill, then it affects everything. It affects the person you're taking care of, it affects you and it affects the family. So you are the lynchpin, and you really have to make sure that you are well cared for and not feel guilty about taking time for yourself. I have a real issue with that. Whenever I have to leave and go do something, or take time and spend it with friends, I feel very guilty about that a lot of the time. I have to talk to myself and say, "You really have to have time for yourself." It's important that other caregivers recognize that as well. And don't let people make you feel guilty for taking time for yourself. You are entitled to it.
GB:
One of the tips you offer in your Young-Onset Care Partner Tip Sheet is to get counseling or to attend support group sessions. Why do you think support groups are so important to family caregivers?
LA:
Support groups can be extremely important, not only for connecting on a social level, but also for supporting the whole caregiver process, and the notion of taking care of that patient. If someone has already been through an experience, they can connect with other caregivers, telling them what they can do to meet those challenges so that they are able to manage better. I would never diminish the importance of a caregiver support group in the community because it's an essential component of caregiving. Not every community has a Parkinson's caregiver support group, but where they exist, they are valuable and it's a meaningful resource that people should take advantage of.
GB:
Why do you think family involvement is so very important in the well-being of someone living with Parkinson's disease?
LA:
It's important for the family to be educated with regards to Parkinson's disease because they need to understand what that patient is going through and what the caregiver is going through. It's important to involve family members and also to realize that the caregiver is going to need relief as well. They need people to come in and give them time so that they can be away, so that they can do some things that they want to do. It's great when you have family that is nearby who can offer that kind of assistance and support to you.
GB:
What role do you see spirituality playing in being a caregiver for your loved one?
LA:
You never know why you are given a certain cross to bear. Sometimes you feel like you're in this fight alone, but I think that if you have a strong spiritual base, that there's always going to be a higher being there to support you and that you can always turn to.
It's been a very important thing in my life, and in my husband's life, and I don't want to be preachy, but it is just a part of our life; and I think that it is almost a foundation in the lives of many caregivers. You have to realize that we're all here for a reason, even in your role as a caregiver. It's keeping that positive attitude and not letting it get you down, because you never know, you may be the example for someone else; and what you're doing may not just help yourself, but thousands of others.
My husband felt that way, and I'm sure Michael J. Fox felt that way in his fight for Parkinson's research; and because they are celebrities, they've been able to garner a lot of money for research, not only from Congress, but from private, individuals, like philanthropic donations. So, you never know why you have something, and my husband's attitude has been, "I work with the cards dealt me, but I don't let it define who I am, and I don't let it stop me from doing what I want to do and what I need to do."
GB:
The work that you, your husband and your family as well as Michael J. Fox and his family are doing has helped to make the discussion so public. And as I talk to caregivers and people living with Parkinson's disease, it all means so much to them. I think it is extremely morale-boosting for caregivers.
LA:
Exactly, it is a morale booster, and that's what really one of the joys of being a part of this Fight for More campaign does for me because I know that people look to Mohammed and I, and to Michael J. Fox to give them the right information and to give them the right resources. It's just a wonderful opportunity for me, as a caregiver, to share with others who are doing the same thing that I am doing.
GB:
If you were able to give just one piece of advice to family caregivers, what would that advice be?
LA:
Make sure you find the best Parkinson's specialist that you can get for your Parkinson's patient. Make sure you get the right pharmaceutical treatment as well. Make sure you're aware of what's out there and are able to utilize that information when you go in to see that Parkinson's specialist. Ask those kinds of questions about what's new and what you can do to improve the quality of life for your loved one.
