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MAGAZINE / The Lonnie Ali Interview

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The Lonnie Ali Interview

Lonnie Ali is the wife of heavyweight boxing champion Muhammad Ali, a Parkinsonís disease caregiver and a tireless national caregiving advocate.  Gary Barg, Editor in Chief, recently sat down for a wide-ranging interview with this champion for family caregivers.

Gary Barg: Itís 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 Parkinsonís disease?

Lonnie Ali:  Itís important for all caregivers to keep a very positive attitude and to realize that this is a disease that can be managed. Itís 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 Parkinsonís patient as well, is extremely important in the management of this illness.

Gary Barg:  Itís important for your own health and well-being too.

Lonnie Ali:  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. Itís important that you realize that youíre not in this fight alone, and that there are others who can help you. Weíre here to help you. You have to call on family members and your support team to come in and assist you.  Itís 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.

Gary Barg:  I love your Caregiver Tip Sheet. Itís so very empowering.  So much of your tip sheet explores caring for yourself as job one for any caregiver.

Lonnie Ali:  Absolutely. Especially if youíre the primary caregiver, because everything rests on your shoulders. If you fall or get ill, then it affects everything. It affects the person youíre 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, ďYou really have to have time for yourself.Ē Itís important that other caregivers recognize that as well. And donít let people make you feel guilty for taking time for yourself. You are entitled to it.

Gary Barg: 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?

Lonnie Ali:  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 itís an essential component of caregiving.  Not every community has a Parkinsonís caregiver support group, but where they exist, they are valuable and itís a meaningful resource that people should take advantage of.

Gary Barg: Why do you think family involvement is so very important in the well-being of someone living with Parkinsonís disease?

Lonnie Ali:  Itís important for the family to be educated with regards to Parkinsonís disease because they need to understand what that patient is going through and what the caregiver is going through. Itís 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 things that they want to do.  Itís great when you have family that is nearby who can offer that kind of assistance and support to you.

Gary Barg: What role do you see spirituality playing in being a caregiver for your loved one?

Lonnie Ali:  You never know why you are given a certain cross to bear. Sometimes you feel like youíre in this fight alone, but I think that if you have a strong spiritual base, that thereís always going to be a higher being there to support you and that you can always turn to. Itís been a very important thing in my life, and in my husbandís life, and I donít 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 weíre all here for a reason, even in your role as a caregiver.  Itís 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 youíre doing may not just help yourself, but thousands of others. My husband felt that way, and Iím sure Michael J. Fox felt that way in his fight for Parkinsonís research; and because of their celebrity, theyíve been able to garner a lot of money for research, not only from Congress, but from private, individual, philanthropic donations. So, you never know why you have something, and my husbandís attitude has been, ďI work with the cards dealt me, but I donít let it define who I am, and I donít let it stop me from doing what I want to do and what I need to do.Ē

Gary Barg: 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 Parkinsonís disease, it all means so much to them.  I think it is extremely morale-boosting for caregivers.

Lonnie Ali:  Exactly, it is a morale booster, 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.  Itís just a wonderful opportunity for me, as a caregiver, to share with others who are doing the same thing that I am doing.

Gary Barg: If you were able to give just one piece of advice to family caregivers, what would that advice be?

Lonnie Ali:  Make sure you find the best Parkinsonís specialist that you can get for your Parkinsonís patient. Make sure you get the right pharmaceutical treatment as well. Make sure youíre aware of whatís out there and are able to utilize that information when you go in to see that Parkinsonís specialist.  Ask those kinds of questions about whatís new and what you can do to improve the quality of life for your loved one.

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