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 diagnosis.to 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™.

Wednesday, April 27, 2022

Well Said Michael J. Fox

  We are all used to being asked "how are you doing?" especially those of us playing

 the "back nine" of life.  This has been a source of some anxiety for me and other

 PwP friends because we are not being honest if we give the standard response

 that we are "doing well or fine", which minimizes the challenges we face on a daily 

basis.   I also know that many people are uncomfortable with the truth for a variety of 

reasons. 

 I read an interview with Michael J. Fox in an AARP magazine.  When he was asked 

how he was doing his response was "About average for a  brain-damaged human".  I 

am going to try this one out with friends that I know who are aware that I am living with 

PD.  Since this is likely to result in a request for clarification I would like to be able to 

give them a short-response snapshot of what living with PD is like.  I like Michaeel's 

explanation:

  " It's what you can't see.  The lack of an inner gyroscope or a sense of balance, of peripheral perception.  It's like sailing a ship on stormy seas on a bright sunny day."

If I do this it will not be to make my friends sorry for me, but to help them at least

 begin to understand.  With Parkinson's and other neurodegenerative diseases

 becoming so widespread, perhaps I have an obligation to tell the truth.