Boxing in the Windy City

“You get so much more out of giving than taking.  Just try to do something nice for others every day.”

Jim Kroeger

There is a Rock Steady Boxing in Chicago, not too far from my daughter’s house on the north side of the city.  I found it last year when I visited her and have gone to several classes there.  As in Los Angeles, the boxers have formed a bond due to Parkinson’s Disease.  I am always greeted with a big IMG_1571“welcome back” whenever I am there.

The owner of the gym, Jim Kroeger, has Parkinson’s, so I took a few minutes of his busy day earlier this week, to talk to him about his journey with PD.   Jim is an inspirational figure, not only running the gym and some of the boxing classes, but he also participates in some of the classes alongside the other boxers.    Yes, he is 10 years younger than me, but I was impressed by how well he does in class.  His reflexes are so fast, it was difficult to keep up with him when we were shadow boxing.   If I didn’t know better, I would have sworn that he does not have Parkinson’s.

Jim’s story began several years before his diagnosis, like many of us with PD.  The signs were there, but no one saw them.  He was a weight lifter who, in his mid-40s, started to notice that his strength in his upper body was waning and that his shoulder was giving him a lot of trouble.  He had an MRI which showed some tears in his rotator cuff, told it wasn’t anything serious by several shoulder specialists and was sent home with steroids.  But his arm would stiffen up again and he saw another orthopedist, who gave him a diagnosis of arthritis.  As time went on, his strength continued to decline and some of the things he used to do became impossible.  He knew something was wrong.  Simple tasks became increasingly more difficult, but he thought his symptoms were just a result of getting older. Things were getting harder and harder to do.

An outing to the Cubs game in 2013 with business school friends changed everything.  The conversation eventually turned to how he was doing.  He told them about his shoulder stiffness and other issues. One of the friends said that he thought Jim did look stiff.  Another friend was familiar with Parkinson’s because his father-in-law was afflicted.  This friend called him a couple of weeks later and said that the symptoms Jim was experiencing were similar to his father-in-law’s and recommended that he see his father-in-law’s neurologist at Northwestern.  Jim never thought that he could have Parkinson’s.  He just thought it was middle age and his body was falling apart.

He googled Parkinson’s and saw that he had a lot of symptoms, but he didn’t want to panic yet.  So Jim went to his regular doctor and said he thought he might have PD, but the doctor did not take him seriously because of his age.  He suggested another MRI on Jim’s shoulder, but Jim refused.   Instead he asked to see a neurologist.  Jim persevered and went across the street to the neurologist’s office that his friend recommended and tried to get an appointment.  It was August and the first appointment available was December 16. He thought since it isn’t an emergency and he didn’t even know if he had Parkinson’s,  he would just wait until December.  He went home and didn’t think about it much, but by Thanksgiving, his condition had declined significantly.  By now, his wife had to help him get dressed and put on his belt, coat, etc.   At Thanksgiving, his family was very concerned about how he looked, but he didn’t want to say anything at that point.

Finally, after 3 years of odd symptoms and declining strength, on  December 16, 2013 he got his diagnosis.

Jim saw an assistant to the doctor who put him through all of the moves.  Count backwards from 100 by 7, which he passed with flying colors thanks to his B-school background, tap your feet, open and close your hands, etc.  The doctor came in and Jim says she could probably point out people with Parkinson’s just by looking at them. Finally getting the diagnosis was a punch in the gut and a relief as well.  Now he knew what he was up against and it could have been a lot worse, citing two friends from high school who had died from ALS.  It all makes sense in hindsight, that the signs were all there, but he did not know what they were.

Having Parkinson’s has changed how he looks at life.  Jim feels that he has a need to help others.  Through his three gyms, he can offer Rock Steady Boxing classes in addition to many other exercise programs.  He found out about Rock Steady from a social worker at his neurologist’s office in 2014.  The only program in Chicago at the time was in the western suburbs, so she suggested that he look into offering it at his gym in the city.  He then convinced some of his instructors to go to the Rock Steady training.

In the meantime, his mother connected him with Eric Johnson, a personal trainer, who was also from Madison, WI, where Jim grew up.  Eric got certified to teach with Jim and the program took off as did their friendship.

Jim says boxing really keeps you sharp.  Everything about boxing is perfect for all of the symptoms of PD.  When he is hitting the focus mitts, he doesn’t hold back and hits as hard as he can.

His advice for the newly diagnosed:  keep moving, get involved, keep a positive attitude.  It is easy to get down – look at someone like Robin Williams.  You can’t have that attitude.  What has been great about RockSteady is that he is helping others along with himself.  It is so rewarding.  He sees this as the next chapter in his life and he is in a position to give back.  He looks to people like Bill Gates as an inspiration, who give back using the success that they have to make the world a better place.

He has learned to appreciate life so much more.  He says “You get so much more out of giving than taking.  Just try to do something nice for others every day.”  He sees how people in his classes improve and it feels great.  If he can make people feel better, then it is certainly worth getting out of bed every day.

boxing-gloves

For more information on Rock Steady Boxing Windy City, go to:  https://www.rocksteadyboxingwindycity.com/

Riding it out

“Float like a butterfly, sting like a bee. The hands can’t hit what the eyes can’t see.”
Muhammad Ali
At age 74, Muhammad Ali died last night in an Arizona hospital from what family members said was a respiratory condition related to his Parkinson’s disease.
He was so strong, so fast, so beautiful (really beautiful), so charismatic, so smart and so witty.  He was inspirational.  Who can forget his most memorable quotes, such as the one above.  It is hard to believe he is gone, and harder still to visualize him after Parkinson’s took such a toll on him.
And his passing points out one of our greatest worries and one of our greatest challenges.  When living with a chronic disease we are torn between, on the one hand, making sure we are taking the best care of ourselves that we can, but on the other, not getting melodramatic and overwrought about the aches, pains and other issues that are simply part of aging and life.  It is a tough balance to strike.
After an extended period of feeling really good with my PD symptoms minimized, along came a cough, some chest pain and some internal tremors (try explaining that one to someone who does not have PD).  I got scared.  Was it a heart attack?  Something else?  A trip to the doctor confirmed that my heart and lungs were fine.  The pain may have been a flare up of costochondroitis, an inflammation in the joints where the ribs meet the sternum.  I have had that before and it eventually went away.
We then left for a long trip, planned long ago.  The pain remained.  Some extended rainy days made it worse.  At this point, part of your brain tells you it’s nothing and to ride it out.  Another part is screaming at you that the PD has taken a turn for the worse.  So you ride it out.  But you’re scared.
On returning home, I went to see my doctors just to make sure that nothing serious was going on.  The pain was pretty much gone and the tests have ruled out the most serious and obvious and scary stuff, but the investigation continues into what was causing the symptoms.  And as I feel better, the “ride it out” side of the brain starts to build confidence and subdues (but does not eliminate) the panic side of the brain.
This is a description, not a complaint.  It is the process that anybody with a chronic disease or condition must grapple with.  And the best way to deal with it that I have found is simply to get gritty about it. Listen to the debate in your own head and get the best medical advice you can, take the best care of yourself that you can, exercise the most mature judgment that you can and then decide you are going to ride it out.  Take a step (or two or five) back in your activities; curl up with a good book; let you body — and mind — rest.  And when you can, crank up the mental and physical activity with the goal of getting first back to where you were and then even better than that.  That’s my plan. I’m going to ride it out.  And it’s working already.

 

 

Two Stories from the Heart

Last month I had the chance to interview two more women with PD.  Since each of us experiences our PD differently, it is always interesting to hear how each person approaches her diagnosis and finds a way to move forward with her life.  We can learn so much from each other, finding our way on this lifelong journey with each other’s support and encouragement.

IMG_0825
Linda and Gail

Linda

Linda was a dancer. When she was in NY several years ago, she discovered that Mark Morris Dance Studio, the premier modern dance studio in NY, has classes for people with Parkinson’s.   She went in and there were about 50 people at all levels who were dancing. It is such a beautiful program. We know that exercise is good for us. It brought in music, imagery and creativity and it was so much more fun than slogging away on a treadmill for exercise.

Mark Morris dancers trained Invertigo Dance Theater to run the program. It must be run by professional dancers, because they really understand strategy of how the body works.

“A doctor told me 10 years ago when I was diagnosed that dance is going to help me stay well. And I am doing pretty well. Maybe it is the dance. We don’t make any medical claims. It is just a real dance class that is modified for PD.”

 

Linda thought her first symptoms were just the aging process, even though her mother had died years earlier from PD.   “I thought it was age. I was taking jazz classes but I couldn’t turn all of a sudden. I was getting dizzy when I turned on my left side. I thought, that’s unusual, since turns were always easy for me, and I wasn’t quite as flexible and I was stiff. It wasn’t till I was on vacation and I started getting a tremor in my left leg and I got worried. It started and stopped at the beginning and then eventually it just wouldn’t go away.   It only bothered me when I was resting. And that’s when I went to a doctor.”

She knows she had symptoms before. She had a couple of falls and other symptoms 5 years prior that she attributed to age. “When you look back it kind of resonates. I always had a reduced sense of smell. I broke my nose when I was 10 and so I never thought of that as a symptom.”

Initially she went to her internist who said “You don’t have Parkinson’s”. “I said maybe I have Parkinson’s since my mother had it. My mother had been bedridden for a number of years with Parkinson’s before she died. Then Linda went to a general neurologist and he said ‘I don’t know, you need to go to a movement specialist.’ I was going to NY to visit my children, so he suggested I go to a movement specialist in NY, which I did , and then I went to UCLA afterwards. They said time will tell. And they were right. It took 2 years to find the right doctor to treat her.”

She gets her info about PD from groups like ours, and from her doctors who have also given her a lot of information. Because she goes back and forth to NY so often, she also sees a doctor in NY who is one of the premier PD doctors in the US. All of her doctors have agreed on a course of action, and progression, which is comforting to know that the best doctors think along the same lines.

Linda started with Azilect, then the Neupro patch, which they recalled. Then Requip. And now Sinimet. It is the same medicine her mother was on. “I do see a difference after several years. It wears off sooner, I have to take it more often, but I am still on a relatively low dose.”

She is in a telemedicine study with the University of San Francisco. She thinks it is terrible, it has a long way to go to make it work. She is interested in the exercise study at USC, but travels too much to participate.

So what keeps her going?  Linda is doing the things she likes, like volunteering to teach this dance program.   It is satisfying and keeps her going.   She takes dance classes that are not so hard, but she is still dancing. And her grandchildren are her vitamins.   She travels often to see them.

What makes her experience so unique? Her mother had PD. She sees how different her life is than her mother’s was with PD. Her mother wasn’t active, so the trajectory of her disease was very different. She had a different life and wasn’t well. Linda says “I see all of us making the most of a situation that can make you want to crawl up into a ball and do nothing. But we are not letting it. We are trying not to let it.

Her one piece of advice for others is to keep moving. It really makes a difference.

Gail 

Gail was diagnosed about 4 years ago. In about 2005 she noticed her foot bouncing occasionally at odd times. She got a referral to a neurologist who said it was something neurological, but he didn’t know what. If it gets worse come back. In 2008 she thought it was getting more frequent and went to Dr. Steven Sykes at Cedars, who also said he didn’t know what it is, but if it gets worse come back.   November, 2011, while at a movie, she realized she had a tremor in her left hand and whispered to her husband “I have Parkinson’s.” I went to Dr. Sykes in December, who said he had good news and bad news. The bad news is that she did have Parkinson’s, but the good news is look how long it took to get to this point. In 2008, he had written in her record Parkinsonism. Something like, but he couldn’t make the diagnoses at that time. He thought I would have a slow progression and I think I have. I went on Azilect right a way. Started Sinimet about a year ago when I realized that my balance was off and I was stiff and I wasn’t moving. I could look in the mirror and see that it wasn’t me. The Sinimet really helps.

She goes to 3 support groups. She has made wonderful friends and learns a lot in the groups. The doctors don’t experience the weird little things that happen to us. We can always ask in the groups “does anyone have????”

Apathy has never been a problem for her. She goes to exercise classes and has so many activities to choose from. She loves the exercise class at the Westside Pavilion.   When she first started she could barely do many of the movements and has seen a big improvement in what she can do.

What makes her story unique? Loving support groups. If you reach out and use the support groups, it is very valuable. The thing that is really exciting to her is that she is on the board of the new PD organization that is starting in LA.

Her advice to the newly diagnosed: find all of the kinds of exercise and do the things that you enjoy and go to support groups.

growing-old-cartoon-doctor

I hope to continue to interview more people with PD in the coming months and post their stories here.  Guys, that includes you, too.   Please contact me directly if you would like to share your PD story.

Ups and Downs

You suffer the blow, but you capitalize on the opportunity left in its wake.

I try to stay upbeat about having Parkinson’s, but some days things just don’t go right.  Actually, it is some weeks.  As I wrote a few weeks ago, I kept losing things.  And then, I ran out of Requip.  I thought I had another bottle, but I couldn’t find it.  An email to the mail order pharmacy to renew the prescription followed.  But the prescription had no refills left and took a few precious days to get approval. The meds were shipped out, but then disappeared!  There was no tracking info, so I called them back to get approval for an emergency refill, which  was approved.

When I went to the pharmacy the next morning, I was told that no, the mail order pharmacy did NOT approve the emergency refill.  So I spent the next 45 minutes arguing with the bureaucracy that insisted that the medication would come that day, so they would not approve it.   Yes, the refill came in my mail, very late in the day.  By then I had been off of it for about 4 days and was feeling the effects of withdrawal from it.   To make a long story short, it took about 10 days from the time I ran out of Requip until I started feeling halfway normal.

This all happened because I lost track of my prescription.  It was my mistake that was exacerbated by the insurance company policies.  As Michael J Fox says, you have to capitalize on the opportunities that your mistakes have created.

I think I am done with mail order prescriptions.  My life is too stressful as it is, and I certainly don’t want to add to it.  My local little pharmacy takes care of me just fine and I would rather give them the business.  As someone who takes multiple medications, as I am sure most people with Parkinson’s do, it is important to have some control.  When the insurance companies take that away from you, there is little you can do.  I can’t imagine how people who don’t know how to advocate for themselves and work the system manage to get the care and meds they need in a timely manner.

Today we are leaving for a 3 week trip to Spain and Portugal and the most important thing on my checklist is “where are my meds?”  Everything is in my carry-on bag which will stay with me the entire time.  In the original bottles with the prescription number and name of the medication.   I can’t risk any more down days while on vacation.  Now I am in control.

 

 

Parkinson’s Awareness Month

April is Parkinson’s Awareness Month and there are lots of great articles on the internet.  Here are just a few.   If you want to tell your own story, please send it to me and I will be happy to share it.

7 Things I Wish I Knew When I was Diagnosed With Parkinson’s

by Gil Thelen, research advocate with the Parkinson’s Disease Foundation and a National Parkinson Foundation Moving Day® Walk for Parkinson’s participant

7 Things I Wish I Knew When I was Diagnosed With Parkinson’s

 

Lisa Cone writes:

Is sisterhood the secret for women with ?

http://bit.ly/1SsXIHG

Lisa attended the Women & PD Initiative conference sponsored by the Parkinson’s Disease Foundation with me.

From The Shoe Maven – a video about the #HeelsOnHeadUp campaign

There are many more articles, but too many to post.  When you can’t sleep, check out some of them on the internet.  And make your voice heard too.