It started with a twitch.
Just a little patch of skin on my left wrist that would twitch every so often. I’d had twitches before from previous surgeries, but this one was different: it came out of nowhere. I didn’t think much of it, at first. I just thought it was what happened after playing 12 years in the NBA.
Then I started feeling very uncoordinated with my left leg, which was strange, since that was my dominant jumping leg. I chalked it up to getting older.
The twitch became a constant tremor. I wanted to try out for ESPN and get back into hoops through the media, but once the episodes started, I didn’t follow through.
It was unnerving to go to any event, because I was so worried about how I looked. In 2008, I went to a Portland Trail Blazers game for Kevin Duckworth’s memorial. 20,000 fans stared down at me, cheered for me, and all I could think of was hiding my hand.
It’s so hard knowing something’s wrong but not knowing what that something is. No one had any answers for me, until I saw Dr. John Nutt at the Oregon Health and Sciences University.
The answer was one that affects only four percent of the under-50 population, and one for which there is no cure.
I was 36 years old, one of 400 people to have played in the NBA for 12 seasons, an elite athlete. And I had Young Onset Parkinson’s Disease.
“Doc, I think your scale is wrong, because there’s no way I weigh that much.”
That’s probably not the typical reaction of someone who just learned they have a life-changing disease, but I had to say something to break the ice.
My reaction wasn’t really too high or too low because of everything else I’d been dealing with since retirement. I was going through a divorce, 15 years of marriage coming to an end. I’d also been battling severe depression, which was a real monster.
I don’t know about you, but before I dealt with it, I thought people with depression were weak. I didn’t think that depression was an illness, I thought it was a state of mind that you should be able to pull yourself out of. Then I got into a situation where I could do absolutely nothing for myself. When I was at my darkest hour, I felt so ashamed, like, oh my God, people are going to think I’m weak. Depression is serious, man.
It makes sense, then, that my next comment was:
Retirement, divorce, depression, now this. I wasn’t angry, I wasn’t sad, I just wanted to know what was next, and whether this would kill me.
I didn’t really know too much about the disease, aside from the fact that Michael J. Fox and Muhammad Ali both suffered from it. So, I went on the Internet to learn everything I could.
Let me tell you, that is the worst thing anyone can do. I had to go through 20 articles describing nightmare scenarios before I found one good one.
Luckily, two weeks later, I received two calls that enlightened me and gave me a new purpose.
One was from Lonnie Ali, Muhammad’s wife. She wanted to know how I was doing, not just with the Parkinson’s, but with everything else in my life. She said that just because I had Parkinson’s doesn’t mean I could ignore everything else that was stressing me out.
The other was from Michael J. Fox.
He put himself in my shoes and said Parkinson’s was going to be extra hard for me. It wasn’t going to be like before where, if something was bothering me, I could just take a pill or get surgery. I was dealing with something that was going to win eventually, no matter how hard I fought. We talked about next steps, and whether I’d join the fight against the disease.
“If you don’t want to, that’s OK,” he said. “But once you step into that arena, you’re in it. There’s no stepping in and stepping out.”
I stepped in.
For a while, though, I wasn’t quite sure how I wanted to fight. The Michael J. Fox Foundation already does a wonderful job with research. The Ali’s are at the forefront of patient care in Arizona.
As I started to meet other Parkinson’s patients, and people who knew others who were dealing with Parkinson’s, I saw that the ones who were proactive and exercising were doing a lot better than the people who weren’t moving around. The more I read about the disease, the more I learned that if you’re not up and active, you’re that much closer to shutting down.
When I realized that, and when I remembered who I was — an elite athlete, a 12-year NBA veteran, someone who knew all about nutrition and being fit — I finally found my place in the fight.
I aimed my foundation, the Brian Grant Foundation, at a new purpose: encouraging and empowering people with Parkinson’s to be proactive with their care.
Medication doesn’t work for everyone. But exercise that opens you up like Yoga and Pilates, as well as being conscious about your nutrition, is going to positively affect the way you progress. I guarantee, if you put me next to two versions of myself 10 years from now — one who is active, and one who isn’t — you’d see a major difference.
The support I’ve received from the NBA community has been amazing.
Charlie Rosenzweig, who works for NBA Entertainment, came out to our inaugural golf and gala event, Shake It Till We Make It, helping get retired and active players involved. He was immediately sold on the cause after that. Bill Walton, George Gervin and Charles Barkley have all participated in the event, too.
Sometimes, support has come from the most unlikely places, like an old foe.
A few weeks after I went public with my disease, I got a call from number I didn’t recognize.
“Brian, it’s Karl Malone. I just heard about your disease and I was wondering if there’s anything I can do to help.”
As it turned out, I did have an idea.
“Do you remember Games Five and Six of the Western Conference semis?” I asked.
“I’ll never forget them.”
“Well, after Game Five, I went home and watched your interview. When I had my interview the next day, they asked me what message I had for you. I didn’t want to talk smack. I just said that you’re my idol, I patterned my game after you, and I heard you like to hunt and fish, and I’m hoping that one day we can go fishing together. So I think a fishing trip with you and me would be a really great auction item.”
All he said was: “Done.”
We raised $107,000 from that one trip.
The Brian Grant Foundation is already becoming a place that’s helping people figure out what they need to do to help themselves. It’s helping them be proactive with their care. We’ve done a great job assisting those in the Pacific Northwest and California. Now it’s time to help people across the nation.
Parkinson’s manifests in so many different ways. I’ve been lucky. All that’s really happened to me since the diagnosis is the tremor in my left hand has moved to my left foot.
But two friends of mine who were diagnosed at the same time I was — who haven’t been as active — have struggled with dystonia, bladder and bowel issues. A lot of men end up getting catheters in their forties. It’s such an unimaginable blow, both physically and mentally. Your body fails you, and you have to start using things you didn’t think would come into your life until you were 70 or 80, or at all.
Think about how hard that is, not just on the patient, but the people around them. I’ve seen couples who were married for decades split because of this disease. Maybe at the beginning, immediately after the diagnosis, they say they’re going to be there, but as the symptoms start to manifest — maybe you’re not walking as well, maybe your face starts to sag — it’s a challenge for that significant other to stay in it.
They didn’t sign up for it. They signed up for the Brian Grant who was running up and down the court, dreads flying. Now he’s gained a little weight, he’s not as coordinated, he’s a tad bit insecure about himself.
But I never say anything about people who can’t hang in there. It takes true love and commitment to the relationship to stay through it all. The ones that do hang in there, though, really inspire me.
So do my kids. Always.
I have two little boys, one is three years old, the other is one. They’re going to grow up with the progression quickly taking hold. I wonder and worry about that sometimes. But I know I have to be honest with them and let them know what’s going on.
My older kids, my 13-and-14-year-old daughters, educated themselves on the disease. They know dad’s going to be all right. As I progress, though, I’m constantly asking them to do things that used to be simple tasks.
“Can you button this for me?” I’ll ask my daughter.
“Will you ever be able to button it yourself?”
“Probably not. Which is why I have you. You’re never getting married, you’re just going to be here and take care of me forever!”
That’s the other thing I’ve learned: you have to have to have a sense of humor.
It’s not easy. Nothing about this disease is easy.
The hardest part, for me, was losing my ego. I’m so used to being fit, toned and in control. Now I’m losing control, and I have to do that with dignity.
Sometimes I’m really good with it, and other times I feel like I don’t want people to feel sorry for me. But I have to be able to open up and allow people to help me, even though I may think I want to deal with it myself. If my kids, my family, my friends reach out, I have to be able to let them in.
The Brian Grant Foundation provides exercise, nutrition, and emotional support programs for people with Parkinson’s. Please join the fight against Parkinson’s by supporting the foundation’s CrowdRise campaign.