Alzheimer’s Associate hosts ‘A Love Not Forgotten’ fundraiser gala

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The Alzheimer’s Association Desert Southwest Chapter is hosting “A Love Not Forgotten” fundraiser gala with keynote speaker Matt MacLeod to raise money for research for the disease.

John MacLeod, former coach of the Phoenix Suns, was diagnosed with Alzheimer’s in 2008. His son now works closely with the Alzheimer’s Association to spread awareness and help fundraise. He says his father is only aware of his condition during portions of his treatments, and they become emotional moments. Matt’s mother would try to shelter him from the potential realization because he feared it would happen to him since it happened to both of his parents.

“It’s very similar to what we hear day in and day out,” executive director of The Alzaheimer’s Association Desert Southwest Chapter Dan Lawler says about Matt’s situation. “We like having Matt involved in letting families know there are supportive services.”

Matt says it was difficult at first to seek help because “you don’t want especially your dad who you’ve been growing up with, who you have a relationship with and who’s your hero – you don’t necessarily want to put him in harm’s way and have people potentially judge him.” However, as he got older, he realized along with his family that they needed to find his dad help.

Lawler explains that every case is different with Alzheimer’s individuals. The fact that it’s always unique to the individual makes it a challenging disease to conquer. Lawler joined the association 12 years ago, and he says they are light years ahead in research since he started there. However, the association’s focus is to help the individuals and their families, but they are still the third largest funder of research in the world, Lawler says.

“You can’t do it alone, and that’s what I’ve been saying,” Matt says. “Once you have that backup, that support system, you know that other people are familiar with what you’re going through, that you’re not alone, there is a feeling of relief.”

“A Love Not Forgotten” is a black-tie event taking place at the JW Marriott Camelback Inn on Feb. 3 at 5:30 p.m. There will be a silent auction and dinner served. For more information, including where to buy tickets, click here.

Ted Simons: An estimated 5.5 million Americans live with Alzheimer's disease and one is a familiar name to long time valley sports fans. Former phoenix suns head coach John MacLeod. His son Matt MacLeod has become an advocate for research and support for the disease, MacLeod is here talk about his father's diagnose and he is joined by Dan Lawler, the executive director of the southwest chapter of the Alzheimer's association. Thank you for being here. Your dad. When did you find out?

Matt MacLeod: He has had it for about a decade. In 2007 we had suspicions, he wasn’t officially diagnosed until 2008. In 2007 we didn’t know if it was just being elderly, he was 70 at the time. He would ask the same question repeatedly. Eventually it morphed into something a little bit more different, with spatial challenges. He would get up from dinner, and where he would push the chair under the table but it would be backwards. We thought maybe it was a fluke, but then it kept happening repeatedly and repeatedly. Then with his driving, we noticed that there was some spatial issues as well. That is when we realized he needed additional help.

Ted Simons: Was he aware of these problems?

Matt MacLeod: It is strange at portions of his treatment he was which was difficult because those were the emotional times when he had a realization what was happening. It was short lived and brief but he would have issues with that for 10-20 minutes where he was aware of what was happening. But in the early stages he didn't. His parents had it. I think that was one of his greatest fears so I think to some extent, specifically my mom, tried to shelter him from his potential realization.

Ted Simons: Does that sound somewhat typical for Alzheimer's families?

Dan Lawler: It is similar to what we hear day in and day out. It is especially family members who are close to the individual who see the minor changes first that can be the key indicators there is a bigger problem.

Ted Simons: And the bigger problem of course just gets worse over time. The challenges caregivers and families have in dealing with this.

Dan Lawler: It is. One of the things we are proud to have Matt involved and be an advocate is let families know there are supportive services, there is a system out there to help them and their loved ones, as well as the family as whole.

Ted Simons: Was it difficult to reach out at first? From a distance it seems like you do something like that but this is personal stuff here.

Matt MacLeod: Absolutely. I think there was that hesitance to reach out because you didn't want, especially your dad who you have been growing up and have this relationship with and who is your hero, you don't want to put him in harm's way and have people judge him or say things about him you would not want to. As we got older and more familiar with the disease, we realized we need to put those feelings aside and get help for him.

Ted Simons: How is your dad doing?

Matt MacLeod: He is hanging in. He is still at home, but he is in the end stages but he is still fighting and every now and then you still see his spirit.

Ted Simons: Every time we do a story on this it is heartbreaking. What kind of progress are we seeing in research? In development? In the whole nine yards?

Dan Lawler: That is the $25,000 question. It is a focus of the association as a whole. I will say I have been with the association for over 12 years. Where we are today versus where we are when we started light years ahead. The association while focused on care and support of individuals and families facing the disease we are also the third largest funder of research here in the world. So it is an important problem and an important issue that we are tackling. But it is a challenging disease especially as it affects each individual.

Ted Simons: Was it important to you when you reached out to Alzheimer's association and such to know, you know you not alone, but when you reach out and get the feedback you know you are not alone

Matt MacLeod: You do know that. You cannot do it alone. That is one thing I have been saying throughout my time on the board. You cannot. Once you have the backup that supports us and other people are familiar with what you’re going through, there is a series of relief. There is no one who has any background in, unless you talk to professionals, you’re going to be lost.

Ted Simons: Is every Alzheimer's case different?

Dan Lawler: Every Alzheimer's case is different. If you met one person who had the disease you have met one person who had the disease. It is very unique to the individual.

Ted Simons: Are we getting better at focusing on what is going on?

Dan Lawler: I think immensely better. I think from Matt's generation and generations before people thought it was getting older but Alzheimer's is a disease and not a part of normal progression and diagnostic tools to say it is Alzheimer's and what’s going on, have improved dramatically.

Ted Simons: We have an event this weekend at the camel back inn. Correct? Talk to us about that.

Matt MacLeod: It is the annual gala that’s put on by our board’s chapter. It is loved not forgotten and I am fortunate enough to be giving the keynote speech which is addressing my father on a personal level and not just the coach we all know.

Ted Simons: Is it difficult to talk about? I am sure at first -- but I interviewed your dad. People think they know your dad even though we don't. Is it difficult to go through this in that respect?

Matt MacLeod: It is but I have been doing it for so long I am accustomed to it and I think people he touched on personal level throughout his career want to hear about how he is doing and reminded about what his life is really like.

Ted Simons: It is important for someone with that kind of stature to be out there and get the information because it can happen to anyone.

Dan Lawler: It can happen to anybody. Former president Reagan is the most prominent individual who disclosed a diagnosis to it. I encourage families to get out to seek help and support. I encourage the viewers to get out and reach out to their elected officials on either side of the aisle from Sinema to Biggs. This is an issue that effects everybody and we need everybody to raise their voice -- affects -- around it.

Ted Simons: We have seen so much advancement with cancer research let's hope we see similar things with Alzheimer's. Thank you for joining us and best to your dad. Friday on Arizona "Horizon" it is a sports edition on the round-table. We will look at the super bowl and the phoenix open and the many new coachers hired as of late. A sports journalists round table, Friday right here on Arizona Horizon. That is it for now. I am Ted Simons and thank you so much for joining us. You have a great evening.

Video: Arizona "Horizon" is made possible by contributions from the friends of Arizona PBS, members of your PBS station. Thank you.

Matt MacLeod: Father diagnosed with Alzheimer’s in 2008
Dan Lawler: Executive Director, Alzheimer’s Association Desert SW Chapter

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