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).

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?”

Parkinson IQ and YOU

Categories: Parkinsons

On January 11, 2020 Ron and I attended a Parkinson’s Symposium sponsored by the Michael J Fox Foundation, called Parkinson’s IQ and YOU.

These sessions are being held throughout the country and started last fall, I believe this was the third one. The next one is March 7, 2020 at the Diplomat Hotel in Hollywood, FL.

This program was similar to other symposiums targeting patients and caregivers but was presented from perhaps a more humanistic (or how do I live the best I can, even with this disease) I helped with the Parkinson Foundation table, discussing the Aware In Care program. But we also had time to visit with Kevin and Kathy and Aunt Estelle.

Ron and Gloria Friedman with
Kathy and Kevin Murphy
Arboretum near Phoenix
  • Designed for people diagnosed less than 5 years and/or early onset.   But everyone should take away something valuable
    • Cost – FREE
      • Breakfast, snack and lunch are provided
      • A copy of MJF Foundation’s Parkinson’s 360 Real Talk for Patients and their Families
      • A program guide with an Appointment Checklist of things to ask  your doctor
  • Why is this different from other programs. 
    • My personal advice to someone newly diagnosed is — education, exercise , and a Movement Disorder Specialist.  This program shows you how following those three bits of advice can lead to “living well with Parkinson’s”.  So in summary, it’s presented from a “human” point of view
  • Program -Hosted by Larry Gifford, a Canadian radio personality who has a podcast “When Life Gives  You Parkinson’s”
    • If I Knew Then What I Know Now
      • Title is self descriptive, a panel will give pointers for what has worked for them or their loved one.
    • Seeing a Movement Disorder Specialist
      • Volunteers will do a example of what a meeting with a movement disorder specialist should “look like” on an initial visit and on a visit 10 years later.
    • Exploring the Latest Parkinson’s Research
      • This session starts with an explanation of “what is dopamine”
      • Covers products close to coming to market that should be more effective than current products
    • Building Your Care Team
      • This was the most lively session of the day in Phoenix
      • This session will include a movement disorder specials, a physical therapist, social worker or other people that will explain their roll in your care team.
      • It is important that everyone works together
  • Vendor Fair Examples, not a complete list, of vendors
    • Patient Care and Research Opportunities
      • There were several companies and medical schools looking for specific people for clinical trials
    • Allied Healthcare Providers
      • Groups with specific programs such as LSVT and Parkinson Voice Project
    • Support Group and Exercise Programs
      • Rock Steady
      • Pound Community Organizations
      • Local to area such as Senior Centers, local music groups,  home safety and nutrition
    • National Partners
      • Parkinson Foundation
      • American Parkinson Disease Foundation
      • Caregiver Action Network
      • Davis Finney Foundation
      • Michael J Fox Foundation
    • Pharmaceuticals
      • Products shown included Rytary, a new version of Amantadine, scanning equipment for diagnosis, etc.

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.


Categories: Parkinsons WPC2019

References from WPC2019

New sites and organizations (at least to me) that I think will be useful to my friends, support group members and others with Parkinson’s Disease

When Life Gives You Parkinson’s Get Larry’s Podcast Here

Larry Gifford has developed an excellent podcast about Living with Parkinson’s.  He did a special series for the Conference but has I believe 17 episodes available for download

Perseverance by Tim Hague Order book link

Perseverance by Tim Hague.  This book, written by a person with Parkinson’s who won The Amazing Race Canada has received good reviews as a motivational book. 

National Parkinson’s Foundation Link to their site

National Parkinson’s Foundation.  This is the group sponsors Moving Day, an event that I participate in for both their Rochester and Boca Raton offices. After a merger of two groups a few years ago, I believe that they are the biggest group of this kind for Parkinson’s Support and Education. that U of Rochester Neurology affiliates with and they have an office in Rochester. They have lots of patient literature and programs.  They are involved with advocacy  and the have a Q&A board staffed by doctors and a support group  forum.  (note, no s in their name)

PMD Alliance Website

PMD Alliance . Their mission is to provide opportunities for people with movement disorders to live better, learn and network with similarly afflicted people.  †

American Parkinson Disease Association Website

American Parkinson Disease Association This group has a lot of website information for newly diagnosed and supports local support groups.

Michael J Fox Foundation Website

Michael J Fox.  Fund raises and supports research to find a cure.  Also hosts educational webinars and educational material. Has a listing of available clinical trials.