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 3 – Learning How to Retire

Categories: Lifestyle New

So, we retired when we were 57 years old and married for 35 years. What are we going to do for the next 4 to 40 years.  (My grandpa Scherr was retired more years than he worked).  The circumstances of our retirement were complicated but briefly it involved our office building accidentally being destroyed and we had to relocate it, changes in the credit card processing industry and how it would affect our clients and our own health.  So with selling/insurance from the building and business and other sources we actually purchased two vacation homes.  One as  a family retreat and meeting place, a six bedroom home on a non-motor boat lake in the Catskills and the winter home in Florida which is a 2 bedroom plus den and 2 bath.  We have a nice soft bed with no metal frame in the den so we sleep more than 6 if needed and the regular guest room is on the opposite side of the house from the master so guests can have a private space.

So how do we keep busy when we are in Florida,   Well there’s the repetitive things like Ron plays racquet ball 7-8a twice a week and tennis at 9 or 10:30 3 days a week.  I have water weights everyday at 9:30 and boxing at 3-4 twice a week etc,  Then there are clubs like photo club, arts and crafts, drama etc that meet from once a week to once a month and then there are shows, some brought in by the homeowners association and some by the clubs (some you can bring guests and some it is only for people in that complex. My son’s in-laws purchased 4mi away but we  hardly see  them because we are doing stuff at our complex and they are at theirs.)  Among the stars we’ve seen are Don McClean, Joan Baez and Peter Noonun, we’ve seen lots of tribute bands and even bigger groups like Capital Steps and also a variety of  local/regional entertainers that also do the cruise boat gigs.  And in on top of that we’ve had several concert and theater venues which we’ve either purchased individual or season tickets.   WE had two years where we juggled two or three Tuesday night subscriptions.  Some sites are better than others on returns and exchanges But you can see how we keep busy.

And then of course there are the visitors and actually this is something you need to check before you purchase,  Our complex does not allow diapers in the pool so my kids really can’t come down again until the 2 year old is out of diapers.  But another nearby complex does not let children in the pool at all. In general Valencia Shores is kid friendly The Men’s Club does all sorts of kids programs (ages 5=17 ish) during the December school break and people often pass around high  chairs, car seats and Pack n Plays

So moving is never easy, finding new stores, new practitioners, doctors, etc, but Ron and I personally made a good choice with Valencia Shores. We’ve formed nice friendships for the future and every once in a while make an acquaintance with some one that shares our past history

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.

Living Well – Parkinson's Disease is Your Partner for Life

Categories: New Parkinsons

I thought I wrote this blog entry Saturday and then read it Sunday morning and realized it was not what I wanted to write at all. Then my internet went down , so now I am re-writing it hopefully as I intended. This too is part of Parkinson’s, the part people don’t really know about until they have it or are a caregiver to someone who has it. Parkinson’s is a slowing of the entire body and that includes thinking and reasoning. So fumbling over everyday tasks is a Parkinson symptom. I’m not going into more detail here but see literature from Parkinson’s Foundation (click here) or other resources for Cognitive Symptoms of Parkinson’s Disease.

So having had symptoms of Parkinson’s since 2004, in 2020 how am I really doing. At the moment I feel better than I’ve felt in years, mainly because my back feels better which I attribute to good physical therapists and trainers. I have more hours of the day when I can accomplish projects. But from minute to minute I never know if I’ll be looking good or not. For example, I might be fine going to play cards at the clubhouse at 1:00pm but by 2:30, even with taking medicines on time I might feel sluggish. This is even more of a problem at night, after sitting through a play or concert I don’t know if my stride will be full or shuffling.

Keeping active, exercise and improving my diet are the keys I believe to my feeling as good as I am feeling at this time. We also do a fair amount of travel which leads me to the point of my thoughts this day, dealing with the unpredictability of Parkinson’s.

I’ve never been a “beauty” and I’ve never been good with having my picture taken but I’ve become self-conscious of how people look at me. When I’m at an event for example, it seems that the event photographer constantly passes over me. I know I don’t take a good picture easily but, they could be more polite and don’t exclude me.

My day has ups and downs. I virtually always ask for a wheelchair when I fly, but if I don’t need it, I just tell the gate agent, thanks but I can walk fine at the moment. Boy do I get funny looks, but people just don’t know.

One last note, have you ever noticed that the forms for new patients at most of the clinics, doctor’s offices, hospitals, etc. rarely lists Parkinson’s on a list of “Do you have or have had any of the following?”

End of Year Summary

It’s been an interesting year.  On one hand I say that my life is in a state of equilibrium at the moment but I continue to be frustrated with my body and it’s aches and pains.  I guess in one respect things are good – my friends have stiffness, aches and pain and at least I have an excuse for it.  But I’m learning that Parkinson’s is unlike almost any other “normal” illness.

For Parkinson’s – we deal with multiple symptoms at the same time and these can be neurological, physical and psychological (but I must add for one person’s sake – it is in no way referred to as a mental illness and it can be inslulting and degrading when it’s hard enough to go out in public every day).  It is a slowing of the entire body including thinking, logic and vision.  Unlike almost every other calamity, except perhaps epilepsy, that  will always have to take medicine and more importantly the dosages CANNOT be missed.  The dosages have about a three hour half-life and need to be replenished.  And  while   people recover from bouts of cancer, heart disease, bad knees, etc.,  there is no recovery from Parkinson’s, only working at it 24/7 to live as well as we can.  (I don’t know how the PT’s  that work with Parkinson’s patients knowing that they can’t make them better, just stronger to deal with the pains, etc.

So, between good doctors, neuro-physical therapist, trainers, etc. I’m getting around pretty well.  I still start twisting internally when I stand at kitchen height counter, so I can only do a limited amount of cooking but when the meds are working I am flexible and pain free.     I do water weights up to six days a week and when I feel really good or the weather prevents swimming, I’ll do an inside class.  I also box twice a week and do a drumming and balance class (2 hours total).  But  I’ve been feeling well enough that I’ve taken on responsibility for Hadassah and for some training on computers.  Sometimes it seems overwhelming but I enjoy it.      But there are times that I get overly nervous and can’t accomplish what I plan to accomplish  and as a result I try to avoid time based  commitments.

But I’m never really totally pain free, usually either  my back hurts a bit or my shoulder, etc.  I’ve also been getting “buzzing” sensations in various spots of my right side.    This may be due to the C Spine again but it’s transient and intermittent not like 15 years ago when it was painless and constant.

So I’m going into next year, relatively healthy but cautious .  As much as I want to play pickelball, I’m avoiding it, I try to be careful not to Fall.  On the other hand, I’ve been in touch with some old NMB and RPI friends and I look forward to visiting them.  I hope to continue doing advocacy work on Parkinson’s and hospitalization and advising people who are newly diagnosed.  But alas I know that at some point this phase will pass.

Night and Day

Categories: New Parkinsons

In the past few entries , I’ve mentioned that I’m feeling better than I have in years.   So I went back to my notes.  I’m definitely better than I was before the Mediterranean Cruise in 2014 when the back pain increased.  Part of it is just healing of the back over time, but a lot of it is good PT, trainers, and massage therapists and lots of exercise on my side. 

PD is progressive disease and it shows on this PDRS graph, although I think part of the changes is due to me understanding the symptoms better.

It’s a bit awkward to outwardly look like I’m getting better. It feels good for people to say that “you look great” but I know that they don’t see the “behind the scenes”.  There’s a huge difference between 6am and 6pm.  At 6am, I am stiff, I use a walker to get to the bathroom; At 6pm, I can play pickleball or walk a mile.  I don’t understand it.  I know the trainer says to keep doing the exercises, stretches, etc. but I know no matter how hard I try I wake up stiff.   I’m glad I have part of the day feeling good and  hopefully will stay this way for a long time.

Also, I’ve realized that I’m the one who has had PD the longest in my boxing class. I sort of like to brag about this as a way of showing what you might be able to do if you work hard with your body.

What a difference a week makes

When we are at our family retreat, I attend a 9am yoga class. It’s close so I usually drive.  Two weeks ago, as I pulled out, I asked myself if I took my medicine and I doubted myself but thought I did. I was okay through the class but a little stiff.  Sure enough I got home and saw the pill next to my computer.  The next week I made sure I took it and class went a lot smoother.  Just another reminder that medicine must be taken on time, every time.

Advocating for Parkinson’s Care

Categories: New Parkinsons

A few weeks ago I had the opportunity to attend a training session on the general topic of what happens when a person with Parkinson’s is hospitalized.  I’ve encouraged people to order these Aware in Care packages for years, but now  I have an even better understanding of WHY we want these bags and how to use them. For more information on the Kit’s themselves, click here – AIC Bags.

I won’t go into greater detail about the  kit here but what we learned at this training is that for the greater medical community, they know little or nothing about Parkinson’s and in looking back, it’s easy to see examples.  Included in this was the first time I saw a new PHP she made a big deal of telling me how she read up on Parkinson’s and gave me a ton of literature.     I doubt she had any other PD patients.

Yes, I believe that everyone has their own expertise and not every health profession needs to know about  Parkinson’s, we as PWP need to make sure all of our team, including dentists, PT, etc. are highly knowledgeable about PD if at all possible. A friend was recently  hospitalized for a heart problem.  After surgery he was in rehab a few days and they complained his blood pressure was irregular and sent him back to hospital and it took 3 days for them to realize that this was a Parkinson’s disease symptom.   Parkinson’s Foundation’s statistics state that Parkinson’s patients are generally in the hospital more days than non-Parkinson’s patients.   3/4 have mistakes made in their medicine and 2/3 of those have complications, usually from wrong medicines, wrong timing, etc.  Other problems that can happen include a PHP or hospitalist using a wrong code to label a Parkinson’s symptom as something else, for example, mistaking Parkinson’s constipation for IBS. This can have long term side effects in our medical records.

The Ambassador program is going to address several audiences.  We are going to address the following groups:

  • Support Groups – make sure everyone obtains an Aware in Care bag and an explanation of what’s in it.  We want to stress the importance of insisting on your medicine at the correct time and NO substitutions, offer to user our own if necessary.  Encourage them to use MDS if possible and be careful if their neurologist does not specialize in PDF
  • Movement Disorder Specialist practices – Leave post cards for ordering AIC bags and other literature to download.
  • Other medical practices- give them the basics of PD, stressing how important it is to get medicines on time, the variability of symptoms, etc.  Order literature kit for them if they want it
  • Hospitals – same as above, but also encourage them to have a policy to call a neurologist and Parkinson’s aware physical therapist whenever a PWP is hospitalized.
  • Medical and nursing schools.  Review the whole presentation for Parkinson’s Foundation and give them ideas for working with PWP in the future.

So in general I’m excited about working on this both in NY and Florida but  I’m concerned how many people are we talking about.  I didn’t know if  a typical hospital see’s 1,10, or 100 PD patients a month for example.  So I’ve started on support groups, but I’ve waiting on some of my other contacts.

So my message to my friends with Parkinson’s is to question every professional including dentist, chiropractors, etc. as to how many Parkinson’s patients they treat and look at every new symptom as to whether or not it can be from Parkinson’s.  Also make sure your pharmacist checks any new prescription for compatibility

Update on how I’m living with Parkinson’s Disease

Categories: GSF New Parkinsons

We all know that Parkinson’s is a degenerative disease.  But my Movement Disorder Specialist says that if it starts slow, it usually stays at a slow rate of change and visa versa.  In other words the younger you develop this the longer you are going to have to live with it.   He also says you don’t die from Parkinson’s but rather you die with it. (Perhaps due to complications from Parkinson’s)

Actually much about how I’m doing is still as described in my April posts, so I won’t repeat.   I still am pleased that I’m doing well and can participate in some cooking and chores around the house.  I’m pretty sensitive to temperature changes so the heat spells doing do very well for me

My biggest frustration is that my best cognitive time going to and traveling between exercise classes.  By the afternoon it’s a lot harder to concentrate and be organized.   I still want to get out more in the afternoons to socialize.  Evenings can be hit or miss.  I don’t really like going out to dinner because it’s easier to not eat very much rather than take my chances of having difficulty swallowing.  I try to make sure I take my 9pm pills early or leave an event before my walking stride minimizes.

I’ve switched personal trainers in NY. Diane knows a lot more about Parkinson’s than Marcy (see next post).  We’re making a picture for each exercise and she’s very strict about body position.  That said, I’ve come to the conclusion that these exercises might make my muscles stronger but they aren’t really going to help me feel better in the long run.  I’m still going to be stiff in the mornings but I can help myself turn better with stronger arms.  (I assume).  And I guess I’m better at forcing my body straight.  One puzzling observation is that I often wake up and can move relatively easily and pain-free in the bed but when I stand I have both pain and stiffness (and lack of walking stride).

So I guess I’m looking as good as can be expected for having Parkinson’s about 15 years.   I’ve been able to meet people and not have to explain my appearance right away.  Many say “I never would have guessed.” But without taking medicine every three hours I don’t know how I would appear to strangers.  Also I’m often pain free mid-day for a few hours.  However if I walk too long or stand at the kitchen counter too long.  The pain starts up.  Looking back at  my notes, a twisting feeling when standing at the kitchen counter has been a complaint almost since the beginning.

A lot of people have more serious problems but many issues “go away”              Parkinson’s is my constant companion but I try not to let it stop me.   But as my friend, I hope the readers of this will be patient but not condescending with me.