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.

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My Story

Categories: Family Parkinsons

I have had a movement disorder issue since mid-2004. It was ultimately diagnosed as Parkinson’s Disease. Parkinson’s Disease is diagnosed by observation of symptoms and their reaction to dopamine. While most often thought of as tremors or jerky movement, in general it is a slowing of the body due to lack of dopamine and various medicines and other procedures are implemented to increase dopamine. In my opinion education and logical thinking are the key to surviving this road block in our life.

Education includes understanding your own situation, making sure all of your medical professionals understand your situation, seeing a Movement Disorder Specialist as opposed to a general neurologist and learning about what research is being done and participating in clinical trials and join a support group to know you aren’t alone.[more..]

Here is my history with Parkinson’s. My journey with Parkinson’s started the year my son graduated high school, 2004. And therefore, it’s been Ron’s and my journey since the kids were largely out of the house and have not seen the daily battles with this disease. Very briefly, In 2004 I started with knee pain, Ron also notice my right arm not swinging. By the end of the summer the pain stopped but my walking became more and more difficult. In August 2005 I was told Parkinson’s or MS but then a MRI showed spinal stenosis and I had a laminectomy C4-C7 (no fusion). Recovered partially, diagnosed Parkinson’s January 2007. The key to living with Parkinson’s is education and understanding your body but I will cover that more later. I participate in several support groups. My movement disorder specialist keeps telling me that “I look great” and take relatively low amounts of medication but without that medication I don’t walk or move AND I don’t think well because Parkinson’s is a slowing of the whole body. Very briefly the three main medicines are Sinemet which is artificial dopamine, Requip which helps the body make more of its own dopamine and Azilect which helps the body use what dopamine that is there more efficiently.

Thanks to a recommendation by my friends Kathy and Kevin Murphy, I’ve been using hiking sticks for I don’t remember how long as a walking aid when I get tired. This works better than a cane because it reminds me to stand straighter (and my physical therapist agrees with this). So I was pretty stable for many years until we took a trip to Europe and walked about 35 miles in 12 days (most in the first three). After this I started with severe back pain. I had a discectomy L2-3 July 2016 but problems at L3-4 and possibly sciatic region were not addressed and the pain persists.

With every pain, you must evaluate if it is from Parkinson’s or not. In other words does the pain reduce when the medicines are at their peak time. So for the past two years I’ve been fighting the pain including exercise, massage, physical therapy (she specializes in neurological cases). I’ve tried acupuncture and CPD oil (no THC) with mixed results along with steroid injections which didn’t do much. I use a high end chiropractor who helps me review my situation and where to turn to next for help. I recently started Rock Steady Boxing and Pound it Out which are both exercise classes for people with Parkinson’s. These have increased my self confidence a bit and the boxing class (at least the one in NY) has me lifting my legs more, etc. The Pound It Out class (drumming on Pilates balls) helps my upper body strength. The second key to Parkinson’s is to KEEP MOVING or in other words USE IT OR LOSE IT.

As I prepare this page in 2018, I am 60 years old, married for 38 years. Both my children are married and my daughter has two daughters,. I hope my entries are helpful to you if you are fighting Parkinson’s Disease or Caring for someone with this disease.

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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

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55+- Part 2 – Not Your Grandparent’s Condo

Categories: Lifestyle
PI Day 2019

Purchasing a unit in one of these units new can be a full time job.  It takes 40–60 hours to pick all the colors and fabrics, landscaping and more. We opted for a resale unit that was about 10 years old. The disadvantage was that most original owners are 10-15 years older than  ourselves but the advantage was that the clubs existed and had leaders, whereas the new construction was just starting to organize clubs, etc.

There are a lot of little things that might not seem importanto but could cause you to love or not love the new home in the long run.

So in no particular order, here is a list:

  • Orientation of house, where does the morning sun and evening sun hits thehouse.
  • General landscaping  what does the HOA take care of and what can you customize
  • Mail delivery-to home or central pick up (newer communities are central)
  • Sports – type of court surface, procedure for court times and how to
  • find players . How competitive. Teams?
  • Sidewalks, bikes, shopping
  • Clubs, how to join, etc.
  • How to buy tickets, any special seating or other things you should know
  • Unique customs like how to buy cards and certificates for condolence and happy occasions
  • Card playing- – how to find and join games, what expected
  • Do people entertain or go out , who pays who drives (frankly I don’t mind going out and splitting down the middle unless one side h s drinks or wine and other, but I prefer Friday nights homecooked. (Of course there was the time that we accepted an invite from someone wo said she used to be kosher and I said we were kosher style.  Ron especially wasn’t too happy when she served chicken parmigiana).
  • Closets (how many, layout – the difference between a bedroom and a den is that a bedroom has a closet and door and a den doesn’t have to have either
  • Colors (Dark woods that you love up pnorth may not vi
  • Flooring (open layout – we wanted to be able to do a table for 20 for seder if necessary)
  • Kitchen
  • Street names  (Our complex has really odd street names generally two unrelated words  but our street is on of the funniest – Playa del sur Blvd – which translates to South Beach Blvd.  WE are a standard E-W street in the northeast corner of the complex)
  • Grandchildren Friendly
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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.

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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?”

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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.

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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.

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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.

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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.

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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

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