Dealing with Parkinson's Disease

You may have heard, "everyone's Parkinson's is different" a few times by now. In my case I don't typically have shaking. When my meds wear off, I get slow and stiff--at times it is to the point that I cannot get upright if I am laying down or out of a chair. I usually need to hook my foot under the couch or seat and pull myself up.   It can be painful and led to some awkward situations when I really need to visit the toilet and can hardly move.   I try to remember it will be okay once the meds kick in.  If I'm in a store, most cashiers give me time or even offer to help me manage. I bring this up because the cashier's attitude yesterday. He saw I was obviously struggling, and kept saying 'three dollar' over and over. I started to get anxious but quickly turned his obnoxious three dollar ballad into a game (while I continue struggling to get my wallet).   ?How much is it on Mars?",  "Can I pay for just a bite?", etc.  One trick tha...

A few years ago I went to a LSVT "Move Big" physical therapist that focuses on the movements like arm swing and gait while walking. LSVT BIG trains people with Parkinson disease (PD) to move more "normally" using big movements and steps. People living with PD or other neurological conditions often move differently, with gestures and actions that become smaller and slower. They may have trouble with getting around, getting dressed and with other activities of daily living. LSVT BIG effectively trains improved movements for any activity, whether “small motor” tasks like buttoning a shirt or “large motor” tasks like getting up from sofa or chair or maintaining balance while walking. The treatment improves walking, self-care and other tasks by helping people “recalibrate” how they perceive their movements with what others actually see. It also teaches them how and when to apply extra effort to produce bigger motions – more like the movements of everyone around them. T...

Some of you with chronic illness will relate. When you are forced to stay home due to your illness, cannot make long range plans, often forced to cancel last minute.  People do not want to stand too close to you just in case it is contagious.    Assholes talk behind your back, “d o you think he has it?" Say insensitive comments, "Looks like he had a stroke" or " He’s so full of shit.”  Your usual support network is cut off, spending days, weeks, even months at home. Anxiety. Depression. Fear. Loneliness.   POST PANDEMIC and the world gets the green light to go. After the pandemic your life goes back to ‘normal’ which is pretty much how it’s been during the pandemic. Only getting out to go to doctors or pharmacy. Phone calls are trying to get prescriptions covered or make doctor appointments.  And there are those lists. "If you make a list, it might be easier to accomplish things". I'll add that to my list right now.

 from  parkinsonsdisease.net : Most people think of Parkinson’s disease (PD) as a neurodegenerative motor disorder. When you picture someone with Parkinson’s you imagine someone with a  tremor , slowness of movement and difficulty controlling movement. But in recent years more has been learned about the  non-motor symptoms  of PD. There are a broad range of symptoms that range from  anxiety  to weight management and beyond. read more on   parkinsonsdisease.net

 PD is shitty, we all know this. What's worse is the treatment of ignored caregivers.  24/7/365 thankless job dealing with the PD psych issues, non-motor issues. The motor issues suck, but doctors have a specialty in neurology for the shaking, stiffness and freezing.  What about the nasty moods, paranoia, and other psych issues specific to what is inside our Parkinson's heads?  Anybody? here is some stuff for caregivers, on parkinsonsdisease.net/caregiving