Each and every day, I am reminded of what Parkinson’s has taken from me. Some of these things that PD has robbed me of are simple, like inability to multitask, slow movements, rigidity or blurred vision. But some of these things that are being seized are important like my balance, freezing or poor speech.
What if I had a magic wand and was able to give you back one thing that Parkinson’s disease has stripped away, or lessened, or weakened, or destroyed in you. What is that one thing that you would want me to use my magic wand and “poof” … that one thing would come back into your life. You will have a chance to gain a symptom that PD has pocketed.
One thing about my blog that I love is when my readers leave comments… it just makes my day. They share their stories, which can be very powerful for others. With that said, I invite you to share with us your answer to the question,
“What if I the Perky Parkie could use her magic wand and “Poof” give me back one thing that Parkinson’s has captured, what would that be?”
I look forward to reading your answers and my poofer is ready…
Allison, I have had PD for almost 10 years. I have experienced denial, anger, bargaining, depression-apathy, and acceptance. It is hard to pick one symptom that is most bothersome but it would bradykinsnia, the lack of movement in the legs. I don’t have to like PD but I do recognize I have it but will fight it. My wife Christie has fought along side me and she inspires to not give into PD. My wife is at my side as I fight this disease and she is the best thing I got going for me.
Thomas, you are so lucky to have someone to lean on in your life with Parkinson’s. It’s nice to know that you’re not alone!
I would like to have back complete control and coordination of my hands. I hate the feeling of trying and failing to do simple things like using a screwdriver, or to write more than just a scribble on paper or to type on my keyboard without making mistakes 90% of the keys when trying to communicate
It’s the small things that we don’t realize how important they are until we can’t do them anymore.
Chaos under my skin- the constant feeling of being mildly electrocuted, as if bubbles were seething and popping in my legs. It’s so intense that I can barely concentrate on anything. Let that be gone please.
Sherrie,
That sounds awful! I am sorry you have to go through that!
I used get that feeling! It felt like my legs were “ percolating ” under my skin. I felt it more when I was stressed,tired or meds wearing off.! Ugh ! I hated that feeling!
I think if your magic wand could take away my fatigue, that would be great. I am currently on a new journey. On April 9 I had my DBS turned on for the first time. They told me I will have to be very patient as I very sensitive to the stimulation. When we go up high to find my threshold I go through a lot of dyskinesia and dystonia. We were barely get into it and I start going through this. Right now I have just a small current and full meds but the difference has been amazing. My uncontrolled tremors are so minute now. For some reason I have been sleeping at least 6 and half hours and the alarm clock has been waking me up. It’s been years since this has happened. I still have some slowness but this is amazing. I can’t wait to see where we go from here. This has been the best birthday for me (April 13) that I can remember.
Gary, congratulations on your DBS surgery. Yes, the programming will require patience, but well worth it! Thanks for sharing!
My lost smile. I am a retired pediatrician and my smile was one of the most powerful items in my medical toolbox I would rank its importance over my nasty dyskinesias,. poor speech, and back pain. When new Parkies join our support group I will ask them to do two things STAT -buy Dr. Eric Ahlskog’s PD treatment Book and sign up for your blog You are providing a great service- especially to newbies. God bless you. Keep healing we need you.
Conner, thank you for sharing my blog! That means so much to me. Yes, a smile can go a long way. I’m going to check out the PD book you recommended.
I would love to have my speach back I can talk loud but I can’t talk in sentences. I can’t think of the words I want to say!
Hi Carol,
I have the same issue… I just cant think of the right word! So frustrating!
Where do I begin? I suffer the usual motor symptoms but I am still ambulatory and work out with Parkinson’s Excercise Program 4You at the Laguna Niguel, CA YMCA. That, no doubt, is why I’m still mobile 6 years in. My biggest and most bothersome non–motor symptoms have to be Pain, Anxiety, Fatigue. Each of those impacts my quality of life more than the motor symptoms combined.
If I were to choose one it would likely be fatigue. I’m no longer able to do the things, mental and physical, that I could ten years ago.
Love your blog and your unrelenting optimism. Please continue to spread the word and be sure to mention the best pharmaceutical available – exercise.
Hi Ernie,
That’s a great one to get back! Everyday activities take so much energy!
What i miss most is spontaneity. Every hour of every day is planned. Meds every 3 hours, one good hour out of 3, being aware of on and off times. planning when I have a shower, when I can go out to grocery shop, planning appointments and exercise classes that don’t fall within my best times between medications, when to eat protein so it doesn’t interfere with meds, allowing time for rest. I can never just go out the door without a lot of preparation. Oh, to be free again.
Donna,
What a great answer! I forgot how much out on and off times really impact our lives. I never know when I will get out the door sometimes. Ughhh!
Donna I’m a newbie to all of this and your comment best describes what I’ve noticed the most about being diagnosed with Parkinson’s and being on medication. Everyday and everything is a schedule. It’s…different.
An intriguing question. I’ve written at least 150 poems since dx in 2005, i’ve not written one from a prompt like this. the forced-choice question is always a good one, because it reveals so much about us. So, here goes. The most disruptive and difficult symptom of mine is pain–constant, unrelenting, brutal pain. Osteoarthritis makes it worse. Pain is also the symptom that most hurts my wife and family. It increases their sense of helplessness in the face of my disease, and nothing hurts like NOT being able to help a loved one in pain! Other symptoms are annoying as hell, and degrade the quality of my life in various ways, but pain is the biggest factor.
Wayne,
Pain is something that unless you’ve experienced it… and I mean (chronic pain), you can’t ever know how it can impact every moment of your life and for those around you! Thank you for sharing.
I’d use that wand to buy back just 24 hours of feeling normal/symptom free.
Brian,
Just 24 hours? Are you to the point that you don’t remember what feeling normal/symptom free is like? Somedays I can’t image what that would be like.
Totally! 7 years yesterday – but, DBS at Stanford in 3 weeks!
Hi perky. Nice to come across you. I am on the beginning of my parkie journey so am grateful to still be quite functionable. But the lost things …. ah the ability to touch type and write so that i can work well. To be able to plan my day knowing i will be full of energy, vigor and concentration…. to be able to move my arm so i can wash pots and cook and it be a pleasure …. to bounce around easily in the bedroom!!! . ….to be free of chronic shoulder pain . So many things. But as this is magic and i have just one wish. Lets go for the daft. I would like to be able to give my dogs a jolly good fuss you know like i used to. With both arms and hands playfully scratching those big shaggy ears and scruffy and soft coats.
What about you? I dont have a magic wand but am in league with the faeries and can send your request. They are sometimes gracious at midsummer eve . If you can wait!
Zingy,
Ha! I love my dog too! Aren’t they the best! He is a rescue but sometimes I’m reminded of who is saving who. Speech is a big one that I miss. I used to have such confidence. Thanks for sharing!
The ability to FEEL emotions like he used to.. ( my hubby)
Toni,
I can only see how your hubby might appear to have the lost his emotions. But I’m sure he loves you just as much, it’s that Parkinson’s strips him of being able to show it. Thank you for sharing… I’m sure many of our readers can relate.
I LOVE the magic wand idea! I would ask for my balance back. I can deal with it all, but the lack of balance effects every minute!
Windy,
Balance is a great one! You don’t know what you’ve lost until it’s gone.
Balance is a big one…..I hated not being able to pick up my children just incase I fell on them. It’s amazing how easily you can hurt yourself by stumbling… let alone hurt someone else…..
I’d like the energy and confidence back. The joy of waking up and knowing that the day held unlimited possibilities and that I could handle whatever came my way. That feeling of being.
Dannielle,
I hear you Loud and clear! So true!
I read this earlier and it was a great post with a great question. It’s a tough one for me to answer, because the things I enjoy are so simple that in ways I feel like Parkinson’s hasn’t taken anything away from me. It’s given me a great story, but also something I would like the magic wand to take away.
Great story first:
I’m coaching a bunch of 6 and 7 year old little leaguers and this one boy is acting up all throughout practice. I’m throwing batting practice and am waaay overdue for my parkie pill. Finally this boy who has been talking back to all of the coaches comes to the plate. I’m barely hanging in there and throw a couple of bad pitches. I suck it up and get ready to throw a good pitch, my tremor kicks in, and I drill this kid in the back. He runs off the field crying to his mama. Practice over. On the way back to the car this boy looks up at me and says “you did that on purpose, didn’t you dad?” I look at him and say… Parkinson’s. 🤷🏻♂️
Now what I wish would go away:
When I was diagnosed I told my wife. I told her that if she wanted out, then now was the time. I told her I wouldn’t hold it against her if she left and then asked what she wanted to do? She paused, and paused, and paused some more before telling me she was in. I haven’t been able to get over that pause and look at her differently now even though I know she had a right to take even more than a pause to think about it. I wish you could take away that pause though.
John, WOW! What two awesome stories you’ve shared! One being, a reality of sometimes you’ve just gotta say… “Parkison’s. Ha! And the story about your wife who paused a little too long… I’m sorry you felt that. Maybe she was in shock that you even had to make that statement? Thank you for sharing your story!
I can’t in my wildest imagination see you freezing! That could only occur if you were laying in a box with your hands folded on your chest.
Bob,
The freezing comes from my rigidity. It’s not severe, but enough to be concerning. Love your comment! Ha!
My sense of adventure to go out and be able to do whatever, whenever. Will I have the energy/stamina? Will I be able to be dressed and ready to go by 8:00 am? Will I be able to stay focused in conversations? It’s hard to be a slow mover in a fast paced world!
Mary, I’m right there with you! The world doesn’t slow down just because you do. Thanks for sharing!
Hi Allison,
I would probably use your “ Abrakadabra“ to get rid of my anxiety…no more Parkystress…Hope the magic will do in those moments where my mind can‘t…
I wish you a magical day!
Very,
Anxiety is a good one that people don’t necessarily relate it to Parkison’s. Hope you have a magical day too! 😉
My mother
Foxtrot, I’m sorry to hear that your mother has been so devastated by Parkinson’s. Thank you for sharing.
I’m tired of falling.
Scott, it’s scary when you fall. When you’re unsure how your body will move. Thank you for sharing!
I wish I had the strength to feel comfortable holding my newborn grandson who now weighs 12 pounds .
My left arm tremors so much and this precious baby was truly a gift from heaven and I know my daughter is nervous for me too but does her best to hide it.
Dianne, that’s a wonderful thing to wish for. Thank you for sharing!
I only hold my grandchildren while sitting on the couch with lots of pillows around me! Just in case!
I struggle to speak clearly. i speak slurganeeze, and unfortunately nobody else does. it is exhausting to have a conversation.
And I am your translator!
I miss being able to write by hand. I had been keeping journals all of my adult life, it helped me to process and explore my emotions. I do have a digital journal but it is not the same, typing uses a different part of the brain and I don’t feel the same emotional release. Plus, not being able to a write by hand limits what I am able to do at work.
Love your blog, it gives me inspiration.
Patt,
I can feel you on that one. I used to love to journal… but doing it on a keyboard is just not the same. Thank you for your comment!
I agree – you!
Awwwww, Peggy! Thank you!
I would love to not have the freezing when I walk, some days are good, some not so, frustrating.
Scott,
I can imagine how frustrating freezing would be and scary when you can’t rely on your body. Thanks for sharing!
That’s an easy one ……. YOU
I am sure that most readers of this blog wish that you could use your wand to have YOU come back.
Clever….
I wish, hope and pray that you could get everything back that Parkinson’s has taken away from you. I’m not sure what is wrong with me myself but I have the shaking hands, blurred vision, lose of balance. I have the trembling of my hands so much as it’s hard to feed myself at times without food spilling off of my fork and flying all over the place. It gets so bad at times it scars me. At times it gets so bad that I feel I need to see a doctor but I won’t because of the fear of what the cause of it may be. I would rather live with it than find out that it’s something that can’t be fixed like Parkinson’s disease.
I will keep you in my prayers Allison. I have always looked up to you and am proud to have worked with you and proud to say that I can call you my friend.
Keep up the fight and know that I am right there fighting with you.
God bless you,
Tom & Lori Ferreira
Tom, the unknown can be scarier than finding out that you have a diagnosis. If you choose to go see a doctor about your symptoms, let me know. Thank you for your kind words.
Tom,
I encourage you to go to your doctor ASAP.. I was a mess for years before I was diagnosed with Parkinson’s. My medications began working in about a week. ( I didnt think anything would work). I began walking, moving, thinking clearer, reduced anxiety.,…. They gave me back my life!!!!! Been 3 great years since.