This ain't no picnic...
So, the call for "personal definitions" went swimmingly! Thank you to everyone... Rocky especially as I used his for the static page. That said, I wanted all of you to have your voice so I compiled everyone else's in this first of many guest posts. Being so new in my Dx, it was awe inspiring, touching and terrifying to read these. I thank you again in in for your openness and candor.
Take it away Joe...
Joe S PD is a disease of frustration. Once you have it, you’re subject to all it’s crazy twists and turns. You never really know where it’s going to attack. The meds are a roller coaster ride. You’re up then down. Life becomes somewhat unpredictable. However, despite all this, many of us learn to appreciate the good moments and fight against the bad ones. It may one day defeat my body, but it will never defeat my soul!
Edie N For me, young onset, has completely slowed me down. I have sore muscles, especially when I lay in bed. I take a ridiculous amount of meds throughput the day. I don’t sleep more than 4 hours a night. Movements make me feel like a weirdo, I can’t sit still. I shift my feet, like a dance sort of, back & forth as I stand. Trying to stand in line somewhere or standing at the kitchen is a chore. I am so worn out and tired, yet I can’t sleep. It has taken over my body. But praise God I can still do many things! Thank you for asking. Thank you for listening. I try to ignore it most of the time. Still functioning and working. Loving my grandchildren. Just need to take breaks more often.
Kimberly S Parkinson's disease (PD) a publicly private disease. Publicly people see tremors or gait challenges. Privately its aches and pains (both physics and emotional). We may have trouble with gait communicating, swallowing discerning real from hallucinations or performing daily tasks. It can be isolating, frustrating and lonely as we remain locked in a body that doesn't follow our commands PD is a full mind body disease with no cure but many warriors working together to educate all and help current and future PD patients. This from my mom who is fighting this dreadful disease than you ever thought was possible.
Jane B You freeze and can’t move. My dad stares out into his darkness and can’t tell you what is wrong. Can’t feel that he is sitting in a wet diaper. No longer cares about grooming. Will walk out of the bathroom half nude. Can’t dress himself. He will put both legs in one pant leg or put an arm into the head opening. Very sad
Cheryl M Your brains receptors are receiving a type of white noise and it can’t process movements or any other necessary non-motor functions very effectively. As time goes on the white noise increases. This is why sometimes thinking about music or another person’s touch can calm down a tremor or release a freeze. This white noise can make it hard for someone with PD to follow a conversation or think through complex thoughts.
Nancy N Frustration your mind telling you can do it and the muscles not letting you. It's pain when you hurt so bad you just want to give up Its embarrassment when you eat you make a bigger mess than when you were two the inability to stand up by yourself. The inability to move fast enough to make it to the restroom. It's knowing that getting anything done takes five times as long including getting dressed. It's learning who you can depend on and who your true friends are. It is learning that your stronger than you ever thought was possible.
Carol H PD from the spouse’s view is watching torture applied to a loved one. I think of a frog put in water with the temperature slowly raised to boiling. After twelve years patience is difficult to find, meditation is momentary, and frustration climbs over the wall you built against it. Joyful exercise becomes hard to endure, a lifetime of running is reduced to ten minutes on a treadmill. It’s too risky to be in class as you might injure someone when you fall. Double vision makes reading and TV less meaningful and with slow mental processing you lose the plot.
Hearing aids are made for someone with fingers that are nimble. Spaghetti is impossible. Medication becomes a mystery—will it work? Maybe, maybe not.
Which to choose? A cane, a walker, an electric chair, a wheelchair? Where to sleep? On top of the covers, on a bed, on the floor after falling out of bed, in a recliner (how to get out of it in the dark)?
Toileting? Forget it! Mentally—maybe it’s depression but maybe it’s a normal reaction to slow unremitting torture.
Jana S Parkinson’s Disease is not just a grab bag of symptoms. Articles everywhere mention that each individual experience a unique combination of neurological symptoms impacting the entire body. Some common symptoms include tremors that begin small but can eventually move from one side of the body to the other; loss of smell which impacts the way food tastes; problems with gait that affect mobility; trouble with balance; extreme fatigue; apathy/anxiety/depression; cramping with muscular and bone pain, etc. But what the doctors and articles don’t explain are how symptoms vary day to day, offering hope one day and disability the next. It is unpredictable, unkind, exhausting, and impossible to hide. Like a liar, it makes us appear drunk, mentally impaired, and uncommunicative, so that others can’t see the real person underneath its symptoms, the person who still laughs, enjoys life’s beauties, and has dreams. So, what is Parkinson’s? It’s a life sentence with no time off for good behavior and with no parole this side of heaven!
Gail T For me it's not knowing what the day will hold. I know that it is what life's about but with PD you have no control over how it will be. It's made my boys do more for me than most 20 and 24 year old should and that saddens me. I don't want to be defined by it, but it defines me.
Mark E For me getting Parkinson’s was like the death of Superman. It is as if my veins are infused with green kryptonite. The super hero I was before is long gone and withered away. My special powers are no more. After 11 years I have learned to be like Batman now. Through sheer will and determination my powers are back! Gadgets now support my powers not blood!
Mateo N Someone takes your body away and gives you a new one. That doesn’t work like the old one. You are like an old computer trying run the newest software. My screen saver goes on a lot. I have to reboot often. Your hard drive shuts down sometimes and you have to wait for it to work again. You only see the screen but most of the problems are on the inside and seemingly random. Depression is part of Parkinson’s not a side effect. My speaker is softer. Takes me a long time to open programs, if I can stay focused and open the one i intended to. Pain 24/7. Opioid Epidemic is making pain management almost impossible. Your new body makes you feel like you are Bambi learning to walk. It sucks.