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?
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.
GB: Itís important for your own
health and well-being too.
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
GB: 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.
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.
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?
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
GB: Why do you think family
involvement is so very important in the well-being of someone living
with Parkinsonís disease?
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
GB: What role do you see
spirituality playing in being a caregiver for your loved one?
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
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 Parkinsonís disease, it all means
so much to them. I think it is extremely morale-boosting for
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.
GB: If you were able to give
just one piece of advice to family caregivers, what would that
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.