I wake to the sound of my alarm at 6:45 am. The distinct sound of rain confuses me as I open my eyes and strain to see through the blurriness that is all around me. I see my dog Crash stretching and yawning at the edge of my bed. In the middle of the night, he has somehow wrapped himself up like a little burrito in the bedsheets, leaving me with a corner of the blanket for warmth. His lack of concern for my comfort is somewhat disturbing.
As I slowly roll over and hit the snooze button on the alarm clock with the palm of my hand, the sound of rain continues to fill my bedroom. I begin to slip back into a sweet dream of Ryan Gosling spoon-feeding me frozen yogurt when the sound of my alarm chirps at me again. Damn! Can’t a girl get a break? I come to the realization that the rain I hear is actually coming from the sound machine next to my bed, which was set to “Summer Rain”. Now if only they made a soundtrack of Ryan Gosling shoveling Fro-Yo in my face…
This is when the battle begins for me. First I think, “I’m so tired. I’m just going to turn the alarm off and go back to bed.” Then comes the, “just one more hit of the snooze button.” Followed by, “I will exercise an extra 30 minutes tomorrow.” I have a whole list of reasons why I can’t go to my boot camp fitness class that I carefully assess each morning. I know that I have to go exercise. I won’t let Parkinson’s win. But that doesn’t quiet the inner struggle going on in my head. It’s a war against my apathy, which is trying hard to keep me down.
I found that when I say or think, “I have to exercise today” it implies that I am required to workout or that I am obligated to check boot camp class off on my to-do list. But when I think of all the people who only wish that they could get out of bed and exercise… I know how blessed I am.
I remember the days of recovering from my latest surgery… pick one… there are many to choose from. There were times when just getting up and washing my hair or maybe taking a bath seemed like hiking Mt. Everest…. nearly impossible. I would lie in my hospital bed watching TV shows that featured people living normal lives. They would get up, dress, and go to work. Then at the end of their day, they would go to the gym, they made it seem effortless.
There was not a moment during my recovery that I wouldn’t have given anything to be able to stand up and exercise. But now here I am, (knowing very well that exercise is the only scientifically proven therapy to slow the progression of Parkinson’s) having a scuffle with my lack of motivation. I needed to have an intervention with my way of thinking.
I stopped using words like, “have to, must, or got to” and switched to, “I GET to exercise today. If you look at exercise in another light… a positive one… you have the chance to recognize that there are people all over the world that can’t do what you have the ability to do today. So check this out… if you wake up in the morning and start to have self-defeating thoughts, try telling yourself “I get to exercise today.” Now, tell Ryan Gosling goodbye and get out there and move.
I’m very sad reading your story. I am afflicted with the same terrible disease (newly diagnosed July last year) although not YOPD so I totally empathize and want to validate all of your points. From what I understand, everyday is different and maybe some of your days are more enjoyable than other… I hope that you find more and more of those kinds of days. Support groups help too, As far as exercise goes, I hope I don’t offend you, an athletic and active person, to maybe start very small (short time, small movements), and maybe a physical therapist would be of extreme help here. Assemble your team of supporters!
This was my reply to Shannan Lloyd’s comment. Placing it here makes it seem out of place. Or you can just remove everything.
Right on Perkie,re
This apathy thing was magnified when I was stuck at home during the COVID stay in place. I kicked my own butt to go online and do yoga. My dog demands that I take her for a half hour walk twice a day/ But there are times when fatigue begets apathy and that’s nearly immovable. Then I do a little mantra of gratitude and start to break out of da funk. I’ve heard it named attitude adjustment/ I should go there more often.
Cheers,
Rog
Hi Allison,
Do you still coach at YMCA, Newport Beach ?
Jean
Jean, no I do not teach the classes anymore, but there are zoom classes that you can join. Hope that helps.
Allison, I love the expression on Crash’s face, i.e. “are you kidding me”? I’d love to hug that little guy, although he would probably smell my cats and nip me.
Your narrative on exercise is not only entertaining, but provides a cogent reason for the necessity of accomplishing high intensity exercise on a regular basis. I find the right environment for me is a specialized gym with other dedicated people willing to regularly meet with trained professionals and work hard. The hard work includes RSB, urban polling, resistance training, balance, speech, facial exercises, volleyball and planks. I find this high intensity exercise accomplishes so very much for me, physically and emotionally. Amazing what close relationships you develop in this environment. We appreciate you Al and always hold you up as inspiration. You do good girl!
Wayne,
Thank you for your kind words. I am happy you have found a place to add to your Wolfpack!
where do you get those great classes?
So true! I was diagnosed with Parkinson’s 12 years ago and, recently, Chronic Regional Pain Syndrome. It is a struggle to get out of bed each day. As I write this it is 9:30 am and I have been laying in bed since 6:00 am. I battle the negative self talk each day but know I will feel better once I get up, shower and start my day. Lately, my exercise has been just a walk around the block. It’s not a lot but it’s what I can do for now, not forever. After reading your blog I know I’m not alone. Thank you for sharing your journey and reminding me with each post that I’m not alone.
Christine,
Thanks for sharing your journey. I am happy my blog could help a bit!
Thanks i need a little push,ihave to remember when the going get tough the tough get going. I admire your toughness. Thanks Jim
Jim, thanks for reading my blog!
You’re so inspiring, Allison!
Thank you Jan!
I, on the other hand, am dreaming of Emma Stone dancing around the room when I need to get up to hit the gym. But you’re right, exercise allows me to function at a higher level and ride my Ducati. Later for Ryan, keep up the good work!
Thanks Dad! 😘
You are a total inspiration! Thank you for sharing your awesome message that exercise is daily medication, and can slow the progression of PD. I coach Rock Steady Boxing and I see daily how exercise can change lives. Keep on sharing your message…..we are all listening!
Misty,
Thank you for being a coach of Rock Steady… exercise is so important!
Before Parkinson’s, I taught the dance class. Now I can’t dance anymore!!! I am so angry at this disease that makes me feel like I am not me anymore. Thank you for your words. Sometimes a shift in tthe way you think about things gets you on track again. I keep forgetting that I AM an athlete. I have always been an athlete, and i only compete with myself!! I will push through. And I will win!! Thanks
Yes, you will win! The only disability is a bad attitude!
I am having the same struggles with accepting my life with Parkinson’s…I just turned 40 in December, I have a 4 1/2 year old daughter, I was diagnosed just before my 34th birthday. The beginning of the symptoms started 1 year after I got married, I was only 30 when the initial noticeable symptoms began, but I think back to my 20’s and wonder if some things were signs then. I was a dancer too and taught classes at the studio I danced at. I competed in the Miss Delaware America system from 2000 to 2005; I was 3rd runner up in 2001! Exciting years! I tap danced for my talent but it seemed like everyone but me was noticing that I had a droop in my right arm…I thought I was holding my arms evenly, but apparently not. Was that an early sign? My father passed away a year after I got married, in July 2010, somewhat expected, and I had already been preparing myself, if you can really prepare yourself for losing a parent or close loved one. My dad had been diagnosed with COPD and congestive heart failure 5 years prior, continued to smoke, was on oxygen 24/7 at the end, and there started to be regular trips to the ER about a year prior to his death. I had said to myself when he was 1st diagnosed that if he didn’t quit smoking he wouldn’t live more than 5 years at most…boy did I call that! Then in September 2010 I had a sudden, random panic attack and started having severe social anxiety and stomach issues, started on a vacation in Florida and you can only imagine my anxiety when we went to board the plane to go home….I started having the stomach cramps while in line to board, then I was bent over in the line feeling like I was having a heart attack and I knew it was my 1st panic attack. I made it onto the plane and made it through the flight home and the ride home, but it was all over after that…..a year of trying different antidepressants/anti-anxiety meds, Clonazepam for immediate issues, and the ok to take Immodium as often as needed led to a referral to a neurologist. During the year my dr kept changing my meds because I developed a slight tremor in my right leg, my toes would also curl very tight on my right foot, and I developed REM sleep behavior disorder. My dr assured me that the symptoms were most likely from the meds, so after a year, I was more stable, so my dr stopped everything but the Clonazepam as needed and the immodium as needed which was less frequent than initially, and said the symptoms should go away…3 months later they hadn’t so I went to the neurologist who just saw me every 6 months because while the symptoms were annoying, they weren’t to a bothersome state yet, he hinted at Parkinson’s but brushed that off because I didn’t fit any of the typical criteria, so he said it could be a benign tremor, because they had ruled out the typical MS, the category that I did fit in. He left the practice and I was switched to the PA just when my symptoms were becoming bothersome, late 2014. My 1st appointment he went through the typical exam: walk straight and turn around and walk back (no right arm swing), pretend to screw in a light bulb ( fine on left, slower on right), open and close hand with index finger and thumb touching upon closing (slower on right again), sitting taps and full foot stomp (right leg was slower). He asked how I was really feeling, what was I thinking. I told him I was done “watching” my symptoms, they were beginning to be bothersome, and I wanted answers and relief. He flat out told me he believed I have Parkinson’s and asked me to wait while he went to get the head neurologist who he had told that he was seeing me for the 1st time that day, and they had reviewed my chart together and had discussed my case and he wanted to see me when I came in. The PA took off running full speed to get the Dr and ran back, out of breath saying the Dr would be to the room in a minute and then he walked in…I repeated the walking, hand stuff and leg stuff and he confirmed that he felt the PA had the right concern for Parkinson’s….but they didn’t officially diagnose me, I was referred to the movement disorder clinic at Johns Hopkins who officially diagnosed me in November 2014. 1 bilateral DBS in 2019 and a left revision in 2020 almost exactly a year later. I still have struggles. My balance has gotten worse with each surgery, my speech is now slurred most of the time and programming is not going well. I feel totally out of control of my life and miss out on so much with my daughter because of my struggles. I couldn’t dance now if I tried. I’m just trying to stay standing on my 2 feet! I find it hard to even imagine exercising…I’d be on my face! I try to be optimistic and positive but it’s just getting harder to put a smile on my face and I’m scared about how much longer I’m going to be able to work….and disability income is a joke, and I love my job and that’s one big thing that makes me get out of bed and moving during the week….
Hear, hear! I find group exercise class to be the most beneficial, as I push myself harder than I would alone. So what if it’s me (69 year-old professor) and ten 20 or 30-something women in the class! I find it hard to keep up an exercise regimen when I am traveling. I am just finishing two weeks of visiting friends and family in the Northeast and Canada, and am now moving my youngest daughter into her freshman dorm at NYU. All good, but exercise has been hard to fit in.
Second thought – I start teaching Fall classes this week at the university. I wonder how long I will be able to do so. It worries me. Alison, are you working? Do you have any thoughts on working and having PD? I was diagnosed six years ago… Garrett McAuliffe, Norfolk,Virginia
I do work full-time. But I have a unique situation, I work in my Neurologist’s office, so he understands my limitations or if I am having a bad day. I think continuing to work can be mentally stimulating and help with depression, just as long as your work is manageable and not too stressful.
It also helps to have a cool group and trainer to work out with.
So true! Love my bootcampers! 💕💕
7:04 here…After reading your latest post …I do feel blessed to go and exercise to start my day! Thank you for sharing your positive vibes !
Véro
Get it!
I feel the same way you do. I was diagnosed 21/2 years ago and at first it was a real struggle to even get out of bed . Doing so much better now, I just get up and do it and I feel so much better . And having a positive helps.
Parkinson’s doesn’t procrastinate, though it’s stealth like rate of progression makes it appear that way, somedays, especially when my meds are on.
I’m a strong advocate for daily exercise, as a means of treatment when addressing my PD, whether it’s stretching or high intensity activities ie Rock Steady Boxing.
I consider being able to exercise, a privilege, so it’s now part of my ‘day’ just as sticking to my Med schedule is imperative to me… to maintain my quality of life.
I feel privileged that I’m given the ability and the opportunity to exercise. I do not take this privilege lightly – to the point that I’d feel that procrastination becomes my option.
Just as denial has become the bedfellow for many trapped in a life dominated by substance abuse, procrastination seems to feel right at home cozied up next to Parkinson’s when exercise is a means of treatment.
I don’t want there to be a day when I look back at my life when Parkinson’s and its sidekick, procrastination, joined me and think to myself, “I wish I had.”
So true Shane! No regrets.
Shane,
Your comments are very convincing. I need to leave procrastination and apathy behind and daily remind myself that it is a privilege to exercise daily. I’m not there yet, but these comments are helping me realize and accept that there is no choice here- I must take care of my health and no longer take it for granted.
Thank you,
Suzanne
Yes!!! This!!!