Monday, September 26, 2022

Humpty Dumpty



I have some things in common with Humpty (we are on a first name basis).

While I have had a few falls, I can’t blame them on PD.  Some were the result of vision issues like not seeing that last step (one of those messed up my left shoulder but got me a free pie-another story for another day).

That said, there are plenty of other issues for the King’s horses and men to work on:

·         I have very little vision in my left eye due to a retinal detachment in 2015 (the only reason I know the year is that my younger son was about to turn 40 and he just had his 47th).  Multiple surgeries have created a retinal landscape that resembles the surface of the moon, so anyone on my left side is in danger of being inadvertently hip checked.

·         Constipation (the ever-present C word) is a daily challenge.  And I do mean daily (well, two days tops).  Otherwise, a chisel/jackhammer/roto-rooter is required to get me “unplugged”.

·         I choke on liquids multiple times a week, which is unsettling to say the least.

·         My voice (formerly one of my best features) is “hit and miss”.  I have to repeat myself a lot due to soft speech and is often gravelly.  Once in a while it is clear, like last Sunday when I was sitting in church singing the hymns and the tenor part with the choir (softly so as not to be obvious since I am no longer in the choir).  When the service ended, a lady sitting in front of me turned around and said, “you have a beautiful voice-you should be in the choir”.  I thanked her but felt very sad.  Then I remembered that I still sing with the Tremble Clefs when we are in Arizona!  Not quite the same, but a very good thing!

·         I use walking poles frequently due to “postural instability”.  They have helped me avoid falls and are comfortable for me to use as a result of lots of hiking and skiing not all that long ago (maybe ten years).

·         My “inner thermometer” has a mind of its’ own.  My feet and hands get cold easily and don’t function well in heat above 80 degrees.  A related problem is “night sweats” that soak my nightshirt, pillowcase, and sheets.

·         Sleep is an ongoing challenge for everyone I know with PD.  I have used a variety of strategies over the years, but my current strategy seems to be the best yet.  I get ready for bed and then go out of the bedroom and read for 30-45 minutes.  I have to start thinking about the bedroom temperature for sleeping early in the evening and make adjustments to get the temperature at a comfortable sleeping level.  When it is very hot during the day and nights are in the 60’s, I use AC to bring the temperature down to about 72, then turn on our overhead fan to keep cool.  When night temps are below 50, I open our window and close the bedroom door to cool the bedroom down to the 60’s (ideally 60-65).  I have used foam earplugs to keep out extraneous noise that might wake me up.  The “icing on the cake” is a sound machine that makes white noise all night.

·         A related issue is sleep disturbances.  Maybe once a week I have dreams that involve me being threatened or attacked in some way that will cause me to make noise and kick my legs, punch the bed, etc.  I have “vivid” dreams just about every night.

·         I have hearing loss and ringing in my ears and wear hearing aids.  I can remember asking questions about whether there is any connection between PD and hearing, or vision issues and I was told no.  My understanding now is that PD affects just about every system in the body, starting with the gastronomic system, which is where it is now thought by many to be where PD starts.

·         I have a minor drooling problem sometimes at night.

·         Tremor has been a big problem for years.  I was diagnosed with essential tremor (ET) in 1991.  ET, which is action tremor, is thought to be genetically transmitted (my mom had it and one of my sons has it).  DBS surgery in 2011 did a good job controlling it for about 5 years but it has reappeared gradually, though the DBS reduces it.    PD tremor (resting tremor) joined the party a few years ago.

·         I was diagnosed with mild cognitive impairment (MCI) in 2011.  MCI often progresses to dementia.  I have had memory problems for years as well as issues with complex problem solving, multi-tasking and more.  I think that my reading and playing board games helps slow progression.

Other than that, I am in pretty good shape.  I know that I will never be “whole’” again, but that is what happens as we get older.  I am fortunate to live in a time when there are so many medicines, treatments and therapies to maintain/improve my quality of life as compared to people living with PD in previous generations. 

Wednesday, May 11, 2022

An Exciting New Diagnostic Tool


Parkinson’s is a neurodegenerative disease characterized by abnormal misfolded protein known as alpha-synuclein.  It is one of a group of disorders known as synucleinopathies.  Accurate diagnosis of any of these diseases, especially in the early stages, is challenging which can result in misdiagnosis.

CND Life Sciences has developed a new diagnostic tool called the Syn-One Test™ that accurately detects and visualizes abnormal alpha-synuclein in cutaneous nerve fibers.  The synucleinopathies encompass a group of neurodegenerative diseases that include:

·         Parkinson’s disease

·         Dementia with Lewy bodies

·         Multiple system atrophy

·         Pure autonomic failure

·         REM sleep behavior disorder

An abnormal test that identifies phosphorylated synuclein (p-syn) within cutaneous nerves is highly specific for a diagnosis of a synucleinopathy, but cannot distinguish between the synucleinopathies. Physicians should use the results of the Syn-One Test along with other clinical features to help make a more specific help avoid sub-optimal care recommendations and poor outcomes.


Personally, I want to know what I am dealing with so I can seek appropriate treatment and make informed choices for my future.  While this is not an endorsement, it is a recommendation for Movement disorder doctors, Palliative care teams, PwP’s, care partners and their families to research this new development.  For further information, visit CND LIfe Sciences - Home of the Syn-One Test™.