I am faced every single day with things that I can’t do anymore due to my Parkinson’s disease. As your PD progresses, it’s the tiny things that you noticed first. Take for example me vs. the stairs. I didn’t happen that I woke up one morning and realized that I had lost the ability to go down a flight of stairs. It began as a fear that I was going to fall every time I tried to descend a staircase. Then it was a slow roll into the abyss.
My Aunt La La… yes, that’s her name… she was always an inspiration to me when I was growing up. I always thought of her as the cool aunt, I wanted to be just like her. I even started to save up for my first coach purse just because she had one… which later became a 20-year addiction to handbags. Still to this day, I can’t pass up on a fantastic purse… the struggle is real… one day at a time. I can remember seeing her college cheerleading pictures and I knew that I wanted to be that girl flying in the air, hitting a perfect “Herkie”. I dreamt about making the high school squad and believed that if I just put my mind to it… Do you want to know what happened? I made the team.
When Aunt La La would come to visit, we would practice my splits and jumps together. I remember her saying that she couldn’t do the splits like she used to when she was in college. That was weird to hear. If she practiced stretching every day, how would she eventually lose the ability to do a full side split?
Being young and naïve this thought left me confused. I couldn’t fathom that life can actually beat you up. Life isn’t sunshine and puppy dogs all the time. It’s chaotic, acrimonious, harsh and surprisingly sarcastic. We lose the ability to do the things that we used to do with ease. Jokes on us.
I lost the ability to go down a flight of stairs because of a neurological degenerative disease impacting my spatial awareness. It wouldn’t have mattered if I ran down a flight of stairs every day. It began with a fear of falling, which led to the need for holding on to the railing and then on to avoiding stairs altogether. Aunt La La lost her ability to do the splits because of past injuries. You know that when she was recovering from back surgery, she wasn’t popping into the splits every time she heard her favorite song… although that would be awweeessooommee!
You hear people say you can do anything if you put your mind to it. You know all those inspirational sayings like, “Believe in your dreams, no matter how impossible they seem” … I can just see Tinkerbell sprinkling fairy dust on my head and waving her wand. But here lies the problem. You see, Tinkerbell never had Parkinson’s disease… which is preposterous, seeing as she is almost 70 years old and has been exposed to massive amounts of pixie dust since birth.
But the truth is, there are things that I will not be able to do anymore. Like being a cheerleader. What’s important is to focus on what you CAN do. Find modifications that allow you to still feel successful in your life. Celebrate daily victories. Look for ways to help others and that’s where you will find meaning and happiness in your life.
Hi Allison, (Rich here),
Both Claudia and I have enjoyed your Perky Parkie column very much. It’s hard to believe it’s been a year and a half since we have attended your very wonderful movement Class at the “Newport Y”. Allison, I just wanted you to know how much Claudia and I have been touched by your struggle, just to get your self back to a normal life. We know you will make it back, because you are a very powerful person. From the first time we met you we both shared how impressive we thought you were. We are very.confident you will make a big breakthrough soon. Allison you are our personal WONDER WOMAN. If you ever need a pick me up, Claudia and I are there for you.
Richard and Claudia, thank you so much for your sweet message! I miss seeing you guys at the Y to! Hope you have a great Thanksgiving! XOXO l
thankyou,thankyou for your uplifting blog. I can still prune roses,mow my lawn, weed my garden it may take a whole day to complete a job that once I could finish in a couple of hours but the garden doesn’t seem to care if I miss a spent rose,leave patches unmowed or leave weeds its always there for me and it rewards my efforts with beautiful flowers, fruit and vegetables. I am so fortunate to have a garden. I agree with your philosophy its so beautiful ….thankyou
Hi there,
It is too easy to think about what is lost, and perhaps also difficult to think about what we still have. But I like taking it a step further – I try to concentrate on learning new skills (things I don’t have now, but will).
I have started volunteering in a kitchen that aids the homeless, and this has shown me how to do food preparation to a much higher quality than I ever had done before.
I know that I might very well lose this new ability one day due to PD, but at that time I will try to find something else, and start again.
Onwards and upwards,
.
Bob,
What a great example of getting the most out of life… forget Parkinson’s. You’re doing good things for others. Thank you for sharing.
Who knew that part of executive dysfunction (inability to multi task), would mean no more jumping jacks (yes that is multi tasking), and even hard time stepping in place while squeezing a ball. But, I make up for it by being the strongest I’ve ever been through exercise
– Rock Steady, Silver Sneakers, PWR, and even table tennis – not all at one time!!
Focus on what I can do, focus on what I can do, focus on what I can do…have to remember this daily. It is so easy to think about what I can no longer do and that isn’t good for anyone. Maybe Pixie dust is that magic cure that we have been looking for. Next time you see Tinkerbell, ask her for a sample and let us know! As always, thanks for making me think.
Lauren,
Tinkerbell is a little stingy with her pixie dust, but I think I can talk her into it.
Ahh, you have discovered the secret to a longer, happier life Grasshopper. Helping others helps you. Bonus time when you get paid back with a hug, (very underrated.) Keep up your outstanding outreach out there!
Thanks Dad! 😘
I love your blogs…very inspirational.
I was diagnosed 8 years ago, and I try to concentrate on the things I can still do, and count my blessings…it could be so much worse.
Dale, you’re so right!
Always love to read your message! You’re definitely a cheerleader to my parki world! Thank you 😉
Veroz,
Awwwww, you’re so sweet! 📣
That was Awesome story yes One Day At A Time, is all anyone has, so we need to embrace life and celebrate all accomplishments 😊
Mary Ellen and Alfonso,
Thank you! See you soon!
I had an escalator experience recently. I thought I would never be able to go down anything but an elevator ever again. But the thought of letting it beat me was unimaginable. So I went back when few people were around And concoured the escalator. There are no escalators in my house,so I practice on the 15 stairs leading up to othe bonus room over the garage. Holding tightly to the handrail and imagining it’s an escalator I do 20 sets. By the I am done I am too tired from picking up my feet , wishing i really had an escalator.
Carol,
What a great story! Escalators used to be so easy! Thank you for sharing!
That was a beautiful post. We must all be grateful for what we can still do. I happened to just do a full split on my left leg but an inch away on my right leg. It was an inspiration to try it after reading this. I may not be able to walk in the morning, but I did it for you! Ha! Love you sweet Ally!
Aunt La La,
Happy to hear that you liked it…bet you were surprised to see yourself on my blog! Ha! Can’t wait to see you at Thanksgiving!
I was a runner in the “olden” days and remember telling myself, the beneficiaries of these strong legs will be my heart and lungs, and together my heart and lungs will keep me alive longer than I dreamed possible.
Then along came Mr. PD and suddenly my brain stopped communing with the core muscles from where the power to run emanates. Then, because of the loss of core strength pain set in. I stopped running to protect my aching back caused by crushing discs in the lower spine. Ten years floated by and my back still aches.
So I lost core muscles and gained an abundance of pain.
Suddenly I wasn’t thinking about living longer, I was just hoping to live out this decade. Well, about 6 weeks to go!
But I miss running, and so does my heart and lungs.
Pete,
I saw some of your speedy running in boxing class! You’re pretty fast! 💨
Right on!!