Last week I flew to Arizona to surprise my mom for her well-deserved retirement party. She had no clue I was going to be there hiding in my brother’s pantry. I was waiting for the perfect time to come out of the closet and present myself. My goal was to get her to cry tears of joy… but the bonus would be if I could make her pee her pants. Don’t worry, I came prepared with adult diapers. Always have a backup plan.
I slept at my brother’s house for the remainder of my stay and had some quality time with my niece, 9 and nephew, 12. I don’t know if it was because I don’t have kids myself or maybe it’s the amount of energy these two radiate, but it made my head spin. It was kind of like the movie “Gremlins”, but instead of not giving the ‘mogwai’ water or food after midnight, it was don’t give the kids sugar… like, at all.
In the evening, we would take a walk and enjoy the sunset as my brother tossed a nerf foam football to the
I wasn’t afraid of many things growing up. I would go cliff diving into the lake by our house. One day a boulder broke free and pinned me under the water. My brother and his friend pulled me out and pressed me up against the rocky wall. You would think that I would be frightened by the close call, but all I could think of was the fact that my brothers’ friend was holding me up by bracing me with his hand on my chest. I got back up back on the cliff and continued jumping.
Now being older, I would never jump into a lake. I don’t even swim in the ocean… Yes, I live in California. I am afraid of what’s underneath me that I can’t see… with my luck, a shark will bite off my ears… yes, I know that sounds impossible, but it’s just my luck. I used to love going camping, but the thought of going out into the wilderness terrifies me. Didn’t you read my last post, “Being mauled by a bear?” When did I become so afraid of everything?
As inexperienced children, we view the world differently. We do dangerous, idiotic, and senseless things without any reservation or thought. Then life happens. We get injured. We get sick. We lose loved ones. We learn.
When I was diagnosed with Parkinson’s disease, I became educated on how to protect my brain. This would lead to me adjusting my life to stay away from chemicals or other activities that could injur my head. After my multitude of surgeries this last year, I find myself being very aware of my fragility. I can’t rely on my body to do the things that I once did without being scared of getting hurt.
I wish I could tell you to live your life to its fullest without being scared of it. Fear nothing. But the truth is that it’s almost impossible to not to have any trepidation. So I will put it out in the universe, how do we not allow fear to run our lives?
to Karen,
god has nothing to do with this disease. …if he did , he would be the cruelest of all. i too, struggle every day. i fall close to 20 times /day and drop and/or break something of value everyday. i am not stronger for any of this, just frustrated and sad. if he (she) was so empowered, none of us would be suffering as much as we are. i just hope there will be some good days mixed in with the bad.
COVERING GROUND PLATFORM
The radiologist looked at my PET scan and uttered two words,”I’m sorry”.
I was absolutely numb. I walked down the long colorless hallway vaguely aware of the sterile odor. The technician who held my hand as the dye pulsed through my veins asked me if I was ok. He had rubbed the back of my hand with his thumb throughout the procedure reassuring me that everything would turn out fine.
I went through the motions of getting dressed. I told myself, ‘one sock at a time,’ ‘one more pant leg to go’. Walking towards the subway felt odd. Everything was still the same yet everything was drastically different. I started to realize that my life had just changed.
The diagnosis gave me thoughts of death. I thought I was going to die. Who would come to my funeral? Wait….I’m getting ahead of myself. Words like dyskinesia, bradykinesia and akinesia were going to become embedded into my vocabulary.
I can describe how I feel in great detail. Akinesia: a general feeling of discomfort when my bones grind together and my muscles cramp in waves of evil spasms. I want to change my birthday suit; it doesn’t fit anymore.
I was diagnosed with Parkinson’s disease 30 years ago. My doctors called it ‘young-onset’ PD. PD could have stood for pain daily or push down or patient deliberating or pre-dementia but I knew the secret to their acronyms. PD meant Parkinson’s disease: a neurodegenerative movement disorder that is most commonly diagnosed in people over the age of 65. I was 30.
What started as a misbehaved pinky finger became nine different medications taken daily. They are lined up on my window sill like toy soldiers ready for battle.
This is my personal story. My 30 year old ride from an extraordinary over-achiever to a extraordinary compromised life.
I offer my story in the hope that all of us struggling with a degenerative illness will find the strength to continue dancing!
Julie, what a journey! Thank you for sharing your story!
It’s so good to read everyone’s comments on this subject. I find fear tied to falling, especially. So, today, I left the house and joined some Parkie girlfriends to play some Ping-Pong. I spoke of my current desire to meet with a therapist who is tied to my neurologist’s practice. Come to find that they are equally as interested. So, I found Peace and Joy in a most unlikely place. I recommend all Parkies get a “cabinet” of friends from exercise class, support groups, etc. and use each other to talk it through. Fear cannot stand up to us now..
Annie, that is exactly why I became a Psychotherapist… everyone needs someone to talk to.
What a timely message, Alison. I am in Ireland, the home of my family and ancestors. After nine years of PD, I was afraid to make this trip. Now the trip is almost over. It has been challenging, with tremors and dyskinesia at the most inopportune times. While I have been periodically chagrined, it has been do-able. Living well with PD, Garrett
Garrett, How nice… Ireland. I’m happy to hear that you still decided to go even though you would face challenges.
i m going to go back home next year if all goes well to ireland i have got pd also .i am hoping i dont have any problems ,i will be staying with my sister .no bathroom downstairs what can i do ? i fall a lot and freeze up to .i am a mess
Liz, no bathroom downstairs… now that is a challenge! I hope that Ireland has many Parkinson’s resources to help you with your freezing.
Maybe stay at a hotel nearby? Perhaps your sister will stay with you for a few nights like a sleepover? If she has kids maybe it can be like an escape!
You go, Garrett !
Hey perkie
One of the greatest lesson I have learnt is that Parkie is not just a movement disorder I.e. get yourself a neuro psychiatrist for your parkie care team. Pretty exotic beasts but indispensable.
I have Dbs via an Abbott infinity stimulator with direct insertion into both sub Thalamic neuclei. I’ve had problems with stability of results. Dial up a personality?!
About 2 months ago i had a jpeg inserted with a day and night pump. This currently is achieving great stability and I’ve been able to eat protein again. I suspect at the frequency of levadopa pills I was a victim of random gastro events. My levadopa response is good to the pure natural original (comes from mercuria puriens) velvet beans, ajvedic medicine from 2000 bc.
Prior to this I had one big psychotic episode directly as a result on my then neuro putting me on virtually every antagonist there is and then not being contactable when the shizzke hit the fan. Poor wife survived that relationship challenge with children less accepting …
Amazing site you got here. Am currently trying a licorice extract on aphapsyneuvpclin folding and potentially allowing levy body destruction.
John, Thanks for sharing!
N.p. Perkie
I take Mirtazapine primarily for Pd anxiety. In my full off state i’m completely paralized and locked in thats scary as hell unless u get used to it. (2 years of psychotherapy and meditation). When I left hospital I could only walk about 3 meters and was wheelchair bound. I take 1/2 a Diazepam for extremely painful Leg cramps. 1x Melatonin for sleep and 2x Tamazepan for anxiety / sleep.
The antagonists are the dopamine antagonists, basically fake levadopa. (Sifrol, Neupro, Amantadine (wife recons Stevelo’s coating as well)) With Risperidone I basically died for a few minutes. Was so rigid I could not even blink or breathe. The idiots at this hospital put me with the ice addicts…
2x Mirtazapine 30 mg are what I needed to counteract the PD.
That’s a really good question. With PD, I find I am even scared to be out in public, especially when meds are off. It’s not related to anything specific…just everything. I’ve never been a particularly daring person, even in my younger days. I just keep plodding along trying to defy the fear. Friends and family who like to encourage can be helpful. Thanks for sharing your story and starting the conversation.
Thanks for your comment, Karen.
I’m sorry, but did you say yes’m? 😂
Lol!
I love your attitude, a combination of pragmatism and sense of humor. LIfe is sometimes tough due to PD, but irony helps a lot.
You are my hero!
Christian, thank you!
There’s a reason why we send our youth off to war. They think they are immortal. And once, I thought it of myself. Now I calculate the “probability” of everything.
Having Parkinson’s I find myself slowly becoming lazy minded, not just afraid. I am low on energy, and my mind is additionally fatigued, so therefore, I rationalize NOT doing certain activities that I am well equipped to handle, but to cautious or apathetic to act on,
Allison, there are good reason to be afraid, or cautious, or calculating, but you just keep moving forward in spite of the things that scare you. Put your dukes up and keep moving forward so we all have a role model in you.
Thank you Pete! I forget how our brain also impacting how we view our fears.
Thank you Allison for sharing the Story about Fear. We will try to live life to the fullest without fear and lean on faith, Alfonso wants me to share this with you, ( Fear is a faults event appearing to be real ) We know it’s hard sometimes we have to read that little phrase over and ove ourself. Have a great weekend thank you for your courage 😊 you are an awesome Lady
MaryEllen, love your Phrase! Hope to see you guys soon!
When I was a kid, I would jump out of the hay loft in our barn into a little pile of straw covering a cement floor. No fear. (Except for the first time, when I was nine or ten, and then I asked a friend to push me. After that, I was hooked.) We went camping every weekend. I lived in a swimsuit. Now I am embarrassed to be seen in a swimsuit, I can’t swim anymore anyway, and I am too germaphobic to go camping.
I am at the point in my Parkinson’s where the meds kick in once in awhile and give me an hour or two on ontime every now and then. I fall at least once every day. My neurologist is out of ideas. He said the only thing I can do is get a walker and a lifeline alert button with a fall detector. I have so many layers of bruises on my butt!
In January, my husband died. I am alone most of the time. . Just getting out of bed every morning takes more energy than healthy people need for the day. Getting dressed and out of the house every now and then takes more courage than being chased by a bear, or mauled by a shark, or spending a week with a couple of teenagers. But. I trust God. I have learned that most of the time, he doesn’t take our burdens away. He gives us stronger backs.
Karen, what great to think of it! Thank you for sharing!
Allison – we don’t allow fear to run our lives by following inspirations like you, for you have shown far more courage and determination in your adult life than most of us can even dream of.
Dave, thank you for your kind words.
I totally disagree with one part of this post and it’s all I can think about. Staying out of the ocean isn’t being scared…it’s being smart! It’s not impossible at all…a shark will bite off your ears. This reminds me of something I said a few weeks ago about the water here in Galveston being blue and their being no way in hell I would get in it. Sharks live in the ocean, it’s not a vacation home they visit during the summer, no it’s their home home. Anderson Cooper just said that a Great White was found in Long Island for the first time ever. He said it while he was wearing a tight t-shirt so you know it’s serious. They’ll tell you that sharks only like to eat seals and fishes. I like to eat Skittles, but if you throw a bag of gummi bears in front of me, I’ll maul them. That’s all we all to a shark is a bag of gummi bears. You won’t even hear them coming to eat you, because of the last shark that ate your ears. You’re not scared Smitty…you’re a genius! Oh yeah and Gremlins is one of the best movies of the 80’s!
John, funny! And yes’m Gremlins is a classic!
Wear a stylish bike helmet and carry a pair of gloves under your belt so it looks like you just arrived or you’re just leaving? Move away from wussie California?
Great idea Dad!
I wish it was only having to say that we’re not afraid, but I find the fear and terror come on their own. In the meantime, have fun with the mogwai.
Thanks Dan!
I am scared of kerbs.
Marie, they can be frightful.
That’s fear not airplane. Seri doesn’t understand me
What a time you’re having. Come out of the closet at your mothers and she kicked you out of the house and you have to stay with your brother and his gradeschool kids. Talk about a slap in the face! When you start recalling unbelievable happenings that invaded your life like being groped by Trump under the water that makes you fearful of what’s around you. Airplanes to roles in our life. One that keeps us alive. Two it challenges us. We make the decision of which path to follow. You’ve done good grasshopper! You made great choices! Keep the faith.
Thank you, Bob.