The year 2021 is almost done

While I’d love to say “time flies when you are having fun.”, that’s not the reason that I haven’t done a blog post since April 2020.   I’ve written many  articles in my head, they just don’t get down on paper.  There are  a variety of reasons why including Parkinsons.  In general, I’d say my Parkinson’s has been stable for the past 18 months but I do have some neurological symptoms that appeared to be getting worse but have recently improved. Sometimes the fear of getting worse does hold me back. 

Whenever I start a task, I think, am I in an A,B, or C place.  If I’m very comfortable, little stiffness, thinking straight, I tackle harder projects like reading an instruction manual, moving files on the computer, anything creative and things that require mobility.  I don’t sleep more than 5-6 hours so between that and Parkinson’s medicine cycles, my “A” time has to be planned carefully.   If I’m not quite at an “A” level , I try to do tasks that are standardized like paying bills, or simple research.  When I’m at a “C” time, I usually pedal the stationary bike, read a book or play computer games until I feel better.  Even as I’m writing this I was an “A” moving towards “B” ; my right ring finger is feeling tight and triggering, so I have to correct lots of typos. One word of advice is to always have the keyboard at your optimum height (I believe this is 25-27 inches from the floor.)    I have considered the possibility of hiring a typist so that I can get all the documentation and photography that I want to do, done.  I think I talk faster than I now type.

We would have never expected a pandemic in our time but while we want to comply, “sheltering in place” is exactly what a Person with Parkinson’s cannot do.  So I continue to take live exercise classes,  physical therapy, water exercise and outdoor bicycling as much as I can but I will use Zoom when necessary.

So my personal goal is to get my blog caught up.  Parkinson’s is such a strange disease and I want to tell whomever is interested about my unique case.  My husband and I never dreamed that I would be as “good” as I am now, even 10 years ago.   I keep thinking of more aspects of Parkinsons that I want to write about but I will them to another day and get to another “A” task before my 6:30pm water aerobics class.   I’d like to move the blog entries on to so watch both sites for more.

My goal is to AXE Parkinson’s (Advocate, Exercise, Education).

55+ Part 1 – What is a 55+ Resort Style Community

Valencia Shores
Valencia Shores, FL

So  this essay is a long time in “the making”.  I’ve written and rewritten it many times over.

We retired at the beginning of 2016 but we actually started looking at 55+ “resort style” communities a year or two prior.  We looked in the greater Phoenix area (Sun City, Canto Mia), and The Villages(central Florida) and the Valencia groups in western Palm Beach county.  We ultimately purchased a resale unit in VALENCIA SHORES.  But let me share some of our thoughts, experiences, and observations. There are so many factors to think about, I hope these notes will help you in making a next stage of life decision.

So first there was “our grandparents condo”.  In the late 1960’s and through probably the early 1980’s our grandparents, many of whom started their lives in the US in tenement houses, purchased condos in places like Century Village and Kings Point.  These were apartments in three to five story buildings.  There were pools and a clubhouse and some activities.  Some had golf courses.  Shopping was often close by.

The next generation were the grown up free spirits of the Woodstock generation.  Most of them had pensions and/or early IRA accounts and did well with their investments in the 80’s.  Their 55+ complexes often had golf/country clubs and townhouse or attached homes

Now the end of the baby boomers are retiring.  They are spoiled.  This generation of “resort style”55+ features single family homes of 3 to 5 bedrooms (often bigger than the homes where they raised their families) with top of the line appliances and lots of activities to participate . 

The website is a good starting point to compare facilities.

A Typical Day with Parkinson’s

Re-reading my April 29 post, it doesn’t really describe how I feel about “Living with Parkinsons” at this point. The bottom line is that it frustrating and scary. It’s frustrating in that it consumes my thoughts a huge percentage of the time. For example, every time I prepare to stand up, I have to “cross check” my body to make sure it’s working well enough to stand up. IF I’m sitting at the computer and accidently click the mouse, I have to be certain that no harm was done. If I schedule myself to go out with friends I have to make sure I have all the meds, etc. that I need including hiking cans and portable chair. Longer travel trips I have to think about waiting times in airports, delays, and time zone changes. I could keep this list growing but I won’t for now.

So, what is it like to be in my shoes and what do I mean when I say “I feel good” Generally I wake somewhat stiff and my stride is short. I go to the bathroom and take my pills I can usually feel my body soften as they kick in. I do some stretches and usually try to get dressed as quickly as I’m able to.

Then I have difficult decisions to make. I know I’m at my best mentally and physically but especially mentally in the morning, So do I do my thinking work or exercise. Since much of the exercise is timed meetings or appointments they usually win (and therefore the frustration of not getting things done.)

When I’m home, again I have to juggle mental and physical. Ron usually wants to take an afternoon or walk or I might have yoga or boxing classes, etc. Often I find myself just staring at the computer because I just can’t process what I need to be doing. Even though I’m retired I still have projects want to do.

Evenings are the most variable and that makes me afraid to go out, especially if it’s past 9 :00 to return. Ron and I used to have a signal that if I said “it’s time to go” that means “My meds are wearing off and I must get to the car and home ASAP or I won’t be able to walk to the car” It still works but it takes a lot more prodding. I rarely sleep through the night. Sometimes, but rarely, I wake up and go back to sleep. More often I get up and go to the bathroom and take a sinemet if it’s after 2:30a. If I wake up in the 4:00 hour I’ll often read or turn the TV on.

So at the moment – I would say life is at an equilibrium. I’m in a livable amount of discomfort and actually I’m doing things that I haven’t been able to do for the last 4-6 years. I’m helping more in the kitchen and with chores. I can’t remember when Ron took that over but I think it was after the trip to Krakow, Prague, Vienna and Budapest but before Nava was born. So it was late 2014, early 2015. Among other accomplishments of late – I’ve been able to lift my feet higher at exercise classes and I can finally walk close to a mile without much pain and stand for close to an hour. I even played pickleball a few times this winter. This may sound trivial but these are huge accomplishments from where I was. My two biggest fears are 1. What happens when this comes crashing down on me and 2. What happens if and when Ron has a medical emergency. He’s been great with me (most of the time) but I hardly be there for him (when my meds are low I can hardly talk on the phone). I guess these will become points for the next blog entry.

Living with Parkinson’s April 2019

This is a long overdue update on my “journey with Parkinson’s.” As previously mentioned every case is different. Dr. Barbano stated that progression is usually linear but at the moment my slope is approaching zero and in reality I’m doing much better than definitely a year and up to several years ago in the motor skills, although probably a little (but not much) worse on non-motor symptoms.

So I think this improvement is due to two great neuro physical therapists at Cayuga Med, along with Marla and Jessica in the Valencia Shores gym and Renee and Peggy for therapeutic massage and the addition of amantadine to my prescriptions . (Also Rock Steady Boxing and Pound it Out drumming and various water weight classes) In the past few weeks I’ve been able to cook a bit (I made two great Passover deserts) and help around the house a bit more. I forget how long ago Ron took over the kitchen – it was before Jonathan’s wedding so it’s been 4-5 years. Last year I wasn’t able to do any setup or cleanup for my Chanukah or Pi parties, I almost didn’t do them this year (Chanukah was just us and three others) but I was able to “do my part” to help with the Pi party this year. I even played pickleball a few times this past winter and I was able to meet new people without having to explain my condition (either dyskinesia’s or walking issues). Marianne said it was about 3 months after I met her that she heard I had Parkinson’s.

 But my Parkinson’s is very time dependent and I guess I should try to plan for the worst. I take the Sinemet 25/100 every three hours, even when I wake in the middle of the night. For about a half hour before and after I take the meds, I slow down – both thinking and movement. Some days and times are better than others, mornings are usually better than evenings. I was nervous about our theater subscriptions that end 10-10:30 but so far, so good – I just try to get an aisle seat so I can easily get up if I panic. When I get up in the middle of the night, I often use the walker to get to the bathroom and while over the past few years I used my hiking sticks, walker or even a wheelchair in public,, I’m generally just carrying (and later in the day using) the hiking sticks. I can walk between 1/2 and 1 mile without pain in my center back. When the pain starts, I sit and stretch for a few minutes and then keep going . I usually request a wheelchair at airports but cancel it if I feel good when I get off the plane.

The non-motor problems bother me more. Maybe I read too much but I’m constantly second guessing my thinking so some of this may or may not be “real” but it’s real to me. I have to think extra hard to remember things, I try to make notes but when I can but when the meds are low, I can’t read my writing no matter how hard I try. I forget where I leave things and I know I’ll but something somewhere temporarily, telling myself I’ll get back to it. This is especially troublesome if it’s a computer file. (An unplanned project for this summer is to reorganize my files across cloud and regular drives)

We are constantly busy. The exercise schedule takes a lot of our time. In NY we are out M-F mornings and Ron is out a few nights and in FL I have water weights 6 mornings a week and I have afternoon classes three days a week and Ron has a few evenings too. That leaves little time for hobbies and other recreations like cards, mahjong, etc. It’s frustrating.

So please be patient if I don’t get things done as fast as I should – I try to do as much volunteer work as I can but I try not to commit to time sensitive tasks. I hardly sleep more than 5 hours a night and I often wake up very stiff but in general, I’m in a good place right now. We did an excessive amount of traveling from August 2017 to October 2018 but this year we are just going to a Parkinson’s conference in Japan in June and a cruise to Key West and Havana in December. We have a cruise out of London in August 2020. I’m planning to just bring the sticks to Japan – hopefully it will work for me.