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Lee Silverman Voice Training gives patients a sense of empowerment

The world is so uncertain. We live every day, usually hoping for things to come or not come. We often spend our time worrying about things we cannot control. At worst, Parkinson’s can be a dark stranger taking little things away from us every day, or at best, a pain in the ass which we have to cope with. A disease that is incurable leaves few options of what you can do. Our family has chosen to try and do all we can do.

We know that through exercise, I can lessen my symptoms, and research tells us that it can also slow the progression of the disease. So, this weekend I had the privilege to work the LSVT (Lee Silverman Voice Training). BIG people in a certification training session for Physical Therapists and Occupation Therapists.

This program is specifically designed to address movement symptoms of PD. There we 80 participants who were learning about this method, hoping to become certified. I was asked to be a patient in a typical therapy session, so the trainees could observe a session with a live patient. A gross understatement would be that I had fun. Imagine me having a captive audience to show off to, while being fully “on meds.”

By the end of 30 minutes I was in a full sweat and ready to go home. The trainer had taken me out of my comfort zone as he coached me to perform “bigger.” Cecily and I left and went home to relax and prepare for the next day.

The second day was an open presentation of the LSTV product to the local PD community. I had distributed the flyer to members of our support group and five of us were there. The program notice included a presentation on the program followed by a session where the newly trained therapists could work with actual patients, which I thought was a great idea. I was pleasantly surprised when all our group volunteered to be training patients. Expecting to be able to closely watch how our group did, I found my trainers (8 of them) enthusiastic about having a shot at Bob. As each one had their chance to show me an exercise, their enthusiasm drove me to a “bring it “attitude, which led to a very high-level session. All the time all of my trainers focused on my performance and condition in a controlled environment. We even worked on my golf swing. After a few practices I thought I was Freddy Couples (on crack). Only after seeing the video did I realize that the visuals did not match my mind’s eye. (I had two spotters.)

At the end of the one-hour session, we duplicated performance tests and I found that I had achieved a 50% improvement in flexibility and speed. Only then did I have an opportunity to observe other members of our group. Regardless of symptoms, every test subject was showing significantly improved movement. It was truly a moving and exciting moment for all of us, including the trainers.

Patients came away with an enormous sense of empowerment. There was something we could do. It would not be easy, but we had choices. It was a BIG moment.

So regardless of what you choose to help you push back the daily mudslide of Parkinson’s, you have choices. Choose now, be a warrior.



Finding our summit, just barely

It was touch and go for awhile on these ATVs.
It was touch and go for awhile on these ATVs.

Last week Cecily and I went on vacation for 10 days with close friends in Coeur d’Alene, Idaho. The first few days were spent in Walla Walla wine country, which was territory we were very comfortable with. I have been collecting wine for twenty five years and despite a loss of smell thanks to Parkinson’s, I was at ease with wine tasting. Upon our return, we spent a day on the lake. Again another comfort zone. Grew up around boats.

The next day we were planning an ATV trip up one of the many trails nearby. After a comprehensive lesson on how to drive, turn, and most important how to stop the devil’s spawn, I was deemed thoroughly competent to operate the four wheeler. What was still an unknown for me is whether I was physically ready for this adventure, a fear I quietly kept to myself, under withering questioning by my back seater.

The next morning bright and early, we loaded up the ATVs and went to the starting part of this journey. At the end of road to nowhere, we jumped on our trusty metal stallion. After the first few seconds, before the stream crossing, it was apparent to me that my small muscle control was somewhat lacking. I knew this by the Holy s%%^ from Cecily as we jumped and lurched forward. Since neither of us had ever been on an ATV, I was able to convince Cecily that everything was fine (discussed life insurance policies).

To set the stage for those who have neither experienced this type of excursion, the trail was 8 feet wide (or less), the vehicle as 4 feet wide, periodic washouts were common, flat (side to side) was non-existent, direction was definitely up, and the drop-off on downhill side of the trail was anywhere from two feet to two thousand feet.

As a point of reference of what I saw on the two hour trip to the top, every time Cecily said look at that I responded in an expletive “No I’m busy, look at that rock.” Have I mentioned the cramps? Right thumb on the throttle control, right leg, left leg……… Short version my hair didn’t cramp. We were on the last big run to the top when I had to stop. Hip cramp (who’d a thunk). Rule #1 don’t stop on a steep incline. I said to Cecily, “I don’t think I can make it.” She said  “What do we do?” Having no other choice, I said “We’ve Got This.” I don’t know if her hug was in loving agreement with me, or her just hanging on, I hit the throttle and within a few minutes we were at the summit. There was no gas in our tanks, although the beast was half full and wanted to continue. Dick, our fearless leader was still slowly getting off his machine, but he quickly found two beers in the cooler to celebrate.

We made it!
We made it!

As we stood there, a calm sense of accomplishment came over me, for about two sips. He suggested lunch at a lake about “10 minutes downhill” and off we went. It was easy compared to “up.” All I had to do was hold the brakes fully locked. Shortly (a little more than 10 minutes) we arrived at the lake which was beautiful. We took out our lunch and the remainder of the one precious beer. That is when we heard the sound of a helicopter. Looking up we saw a water supply helicopter which was actively being used to fight the forest fires plaguing the northwest. To our surprise it was only a few minutes after it took water from the lake that it returned for its next load. CLICK. That is the sound of our collective brains. There was a fire nearby. After less than a minute, we assessed our situation and realized it was a small hot spot with five (number of trucks parked at the lake) firefighters trying to contain the fire’s spread with the support of the helicopter. No big discussion here. We jumped on the devil’s spawn and hightailed it down the mountain gravel road to the ever present sound of the helicopter and chain saws.

I lead the way as fast as I could.

So why this post? I have reflected on a great adventure. All of the details fade behind that one moment before the summit when “I was done.” I could have easily gotten off the ATV and quit, but I didn’t.

When I thought of our journey with Parkinson’s, I remembered all the times I wanted to give up, and it wasn’t an option in my mind. I remembered Matt Mitchell telling me “You are not alone,” and John Ryan and many others (including all of my family) screaming to others, meeting their challenges “YOU’VE GOT THIS”. The truth is we did have it. We knew we could persevere, just like we do every day.



PS. To Sam Fox (Tour de Fox’s 49 summit goal raising over $1,000,000 for The Michael J Fox Foundation), and to all others finding their summits, you are amazing and we know YOU HAVE GOT THIS.

Grief a motivation to stay the course for a cure


“Time waits for no man,” “Time marches on,” “Live for Today” are sayings that we hear from time to time. For those who know me, I don’t worry about the future very much, or so I say. The truth is I am constantly reminded that life and time are precious. But I refuse to spend time worrying about tomorrow to the extent I lose what I do have, today.

Many years ago I was talked into forming a Parkinson’s support group. I was afraid to do that because I didn’t want to “See the Future” as I met patients who were farther along the Parkinson’s journey than I was. But I was surprised by what I got in return for reaching out to those in need.

It was much more than I ever expected, a sense of community that comes immediately upon meeting a fellow journeyer. I found as we talked about symptoms and challenges, there was mutual understanding and a calming sense that “We were not alone.” I learned very quickly that time was not the sole factor defining the daily small losses of physical abilities. So, my approach was to take the best of each day and build on it and to cram as much into each day as I could.

I spend a lot of time raising money to find the cure. As soon as one event is finished, we start the next. We will find the cure, I have no doubt, but “Time marches on.”

This last month has challenged my beliefs and optimism. During the last 30 days, four members of our support group have passed away, in addition to the father of some people we just met at the Florida Summit of the Tour de Fox. This loss is disheartening, and freaky.
Continue reading Grief a motivation to stay the course for a cure

Parkinson’s makes a splash on USA’s Royal Pains

I curled up to watch the season premiere of Royal Pains the other night and the signs popped out at me.

Handwritting that gets smaller and smaller? That’s impossible, the character said. No. No, it’s not. Getting clumsier? Tremors? What does it mean? All of my Parkinson’s sensors went off.

And when the doctor, Hank, told the 20-something Aubrey — a reality TV star — that it seems likely that she’s in the early stages of Parkinson’s disease. Enter the sad, depressing music and a cut to commercial.

I was lying on my couch watching this, and as the commercial started, I actually sat up — feeling like the wind had been knocked out of me. And yet, while an understandable reaction, I felt mad at myself for feeling that way. It’s been nine years since that moment Dad sat me down on the back patio to tell me the news. It’s been nine years since I heard the word “Parkinson’s” and then couldn’t hear the rest. Or see through the tears. And it’s been a great nine years since thanks to my dad’s attitude and the family and cause we’ve found in the Michael J. Fox Foundation and Team Fox.
Continue reading Parkinson’s makes a splash on USA’s Royal Pains

Real talk on Parkinson’s, depression and Robin Williams

Many of the people I know in the Parkinson’s community have this go-to attitude and optimism that a lot of people would find surprising. To me, it’s par for the course. We’ve been introduced to so many people who aren’t going to wait for a cure, they’re going to help find it. And with that, comes a willingness to bravely look PD in the face with a smile. 

That said, I would guess that many of them struggle with bouts of depression. A lot of us do, whether we have PD or not. I’ve been having similar conversations with friends lately as they struggle, too, with the fact that they are the people others rely on to help build them up and make them smile. Those people sometimes don’t feel like they have anyone else to talk to. If you’re the one who needs to make others laugh and look at the bright side, it’s hard to admit you have your own demons. 

It’s something I’ve been thinking about a lot since the news of Robin Williams’ death. Yes, he was a funny, funny man. But I honestly wasn’t surprised that behind that depression was lurking. A lot of people jumped on the bandwagon to blame his Parkinson’s diagnosis on his depression. His wife had said she wasn’t ready to tell people yet. 

Continue reading Real talk on Parkinson’s, depression and Robin Williams

The blogger becomes the subject

I don’t like writing about myself, but here’s the MJFF Fox Trial Finder blog about … me. 

I used to think that the feeling that I wasn’t doing enough in the fight against Parkinson’s disease was just a neurosis of mine. As the daughter of a person with Parkinson’s, I help my dad with his annual golf tournament. I write for The Michael J. Fox Foundation’s FoxFeed blog, and run our family blog telling the stories of people with Parkinson’s. But I’m always plagued by this feeling that I should be somewhere else, doing more.

It’s a feeling I’ve come to realize isn’t just something I struggle with. Many of my Team Fox brothers and sisters (and my actual sister, Emily), are always willing and ready for the next thing we can do to help. When Fox Trial Finder, the Foundation’s online clinical trials matching tool launched, my entire family signed up. My mother has been enrolled in the Parkinson’s Progression Markers Initiativeclinical study looking for biomarkers for three years. And alerts from Fox Trial Finder would pop up in my email when new trials I was a good fit for were ready for volunteers. But I had a hard time finding something that fit. I would get dissuaded by the length of some trials, since I can’t be sure I’ll be living in this area for 5-7 years.

Continue reading The blogger becomes the subject

Loss never gets easy

After the NYC Marathon: Jeff, Gene, Gwen and John.
After the NYC Marathon: Jeff, Gene, Gwen and John.

My heart really hurts today.

Gwen, a dear, Team Fox friend of mine has lost her father to Parkinson’s. I got word late last night and then I didn’t really sleep.

When our family joined Team Fox and I attended my first MVP dinner with Dad, Gwen was one of the first daughters of a Parkinson’s patient that I met. In her, I saw a more awesome version of myself. Her enthusiasm for finding a cure and her love of her father has pushed her to run, raise money and be a Team Fox mentor (which is how she met Dad).

The night at the MVP that I met Gwen and her father, he was really quiet. Gwen was her usual, excited and animated self saying hi to me and Dad, as she introduced her father to us. We all just talked to each other, about our efforts, our passions and her father didn’t say anything. But what I remember now, probably more so than I did then, was that he was in awe of being there that night. And in awe of his daughter. His daughter who would run a marathon, raise money, dedicate her life to a cause and move home just for him.

Gwen made the tough decision to move back to Texas to be with her family. It’s a decision I know will be tough and that I will do some day. But before she had the chance to officially make the move, he passed away.

I can’t imagine the pain that Gwen and her family are going through right now. And I think it hits me so hard because I know one day I will know that pain. I see what will be myself in Gwen’s loss.

Gwen, I am so sorry for your loss. Words cannot explain how sorry I am. I know that your father was so proud of you, I could see it in his eyes the first time I met him. You will always carry him in your heart and as we continue this fight against Parkinson’s together.

Because we are doing this together. All of us. None of us are alone. I just hope each of us gets the chance to say goodbye, and thank you. For all our loved ones do for us.

To my Dad: I love you. And I’m so proud of you each, and every day.