Monthly Archives: November 2018


Dear Parkinson’s

Dear Parkinson’s,

December 12th will be the sixth anniversary of our official, diagnosed, life together, although we were getting to know each other years before that.  I feel that our relationship is progressing. I remember when we met among the nerve cells of the substantia nigra. By the time we were officially diagnosed, we had already lost 80 percent of our dopamine-producing cells.  If it’s all right with you, I would like to name the surviving dopamine cells to let them know that they are needed and loved and should stick around.

Do you think we should get an anniversary present for each other? Metal or wood is traditional for the sixth anniversary, but I can’t think of anything made of wood or metal that I would want.  I have an idea. We could get masquerade costumes. Parkinson’s has already given me a mask to go with the costume, due to decreased facial expression. There are some gifts you have given me that I would like to return; I don’t really need them.  Are there gift receipts for these things I got from you? I would like to box up and return muscle rigidity, stiffness in the arms, shoulders and neck, voice changes and unsteady walking. If you’re willing to take those back, I’m sure I could find a few more.

On the other hand, there are some other things you have given me that I love and wouldn’t mind more of:

Give me more flexibility in adjusting to change.  There are parts of my life I have no control over.  Every day poses unique challenges and I need to be able to quickly shift course.

Remind me, Parkinson’s, to have a positive attitude. Choosing to have a positive attitude impacts my relationships with others and how I take care of myself.

Keep teaching me compassion.  You may have changed my way of moving, working and living, but you also taught me to have compassion, empathy and appreciation for those affected by all types of illness.

And, Parkinson’s, let’s keep being open and unashamed about what you give me.  This openness has lead to wonderful friendships, and a most supportive community.

You can continue to give me the gift of gratitude. I believe that you have increased my gratitude for the simple things in life that are often taken for granted.

So Parkinson’s, like so many relationships, we have had good times and weathered some bad times.  May we continue in our journey together for many years to come.


Combatting depression

Mental health is extremely important in PD. Although common in other chronic diseases, research suggests that depression and anxiety are even more common in PD. It is estimated that at least 50 percent of those diagnosed with PD will experience some form of depression during their illness, and up to 40 percent will experience an anxiety disorder. 

The Parkinson’s Foundation Parkinson’s Outcomes Project found that taken together, mood, depression and anxiety have the greatest impact on health status, even more than the motor impairments commonly associated with the disease. 

Read more http://parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression


Thomas Allen 1940 – 2018

Tom and Patty Allen were active members of our group.

Thomas M. Allen, 77, of Rexford, died peacefully at home surrounded by his loving family on Sunday evening, November 25, 2018, after a 30-year battle with Parkinson’s Disease.  Tom was born in Tannersville, NY to Harold Allen and Suzanne Worth Speenburg.  

He is survived by his loving wife of 54 years, Patricia; sister Jeanne Allen, sons Thomas Allen (Mary Doherty); David Allen, Brian Allen; and three grandchildren, Morgan, Greta and Carter.  Tom was a devoted and beloved son, brother, husband, father, friend and mentor. He was an active member of the community throughout his life, and was a communicant of St. Mary’s Church in Crescent. He enjoyed coaching his sons’ baseball, football and basketball teams, gardening and dancing with his wife and he was an avid hunter and fisherman.

Tom graduated from Hunter-Tannersville High Schooland obtained degrees in Civil Engineering and Environmental Engineering from the University of Vermont and Rensselaer Polytechnic Institute.  Tom served as an Army Aviator in the 101st Airborne from where he served in many leadership positions before being Honorably Discharged as a 1st Lieutenant in 1966. Tom’s work as a professional engineer focused on improving water and air quality with the NYSDEC, where he served as Director for the Division of Air Resources from 1988-1995. He was instrumental in the development of the 1990 Clean Air Act Amendments. During this time Tom also served as the President of the State & Territorial Air Pollution Program Administrators (STAPPA) and led the efforts of Northeast States for Coordinated Air Use Management (NESCAUM).  Tom was awarded the Air & Waste Management Association’s S. Smith Griswold award in 1996, which is a national award given to an individual who has outstanding accomplishments in the prevention and control of air pollution. In retirement, Tom co-founded an environmental consulting business, Air Resources Group and for over a decade worked throughout the country as an instructor for the California Air Resources Board training new staff in air program activities. Tom loved music and dancing with his wife Patty, which they did at home and during their travels together across the country.

Calling hours will be held on Sunday, December 2nd, from 3 to 6 p.m. at the Catricala Funeral Home, 1597 Route 9 in Clifton Park, with a funeral service on Monday at 9:30 a.m. at St. Mary’s Church in Crescent. Burial will be in Saratoga National Cemetery following the funeral service at 11:30.

In lieu of flowers, donations may be made to The Michael J. Fox Foundation,
P.O. Box 5014, Hagerstown, MD 21741-5014, or to the Community Hospice of Saratoga, 179 Lawrence St., Saratoga Springs, NY 12866.


Parkinson’s Disease Vaccine Shows Preclinical Promise

from https://labiotech.eu/medical/united-neuroscience-parkinsons-vaccine/
The biotech company United Neuroscience has developed a candidate Parkinson’s disease vaccine that targets a protein linked to the condition.

The vaccine teaches the immune system to attack aggregations of alpha-synuclein. When this protein aggregates in neurons, it can lead to several neurodegenerative disorders, including Parkinson’s.

In United Neuroscience’s preclinical study, the vaccine was able to prevent the protein from aggregating in cell cultures, in mice and in post-mortem brain tissue of patients with Parkinson’s, Lewy body dementia and multiple system atrophy.

The company, headquartered in Dublin, has not specified when the vaccine might go to the clinic. As alpha-synuclein is involved in other diseases such as Lewy body dementia and multiple system atrophy, this vaccine could target several diseases in the clinic.

United Neuroscience has used the same platform to make a vaccine against Alzheimer’s disease, which is currently being tested in Phase II, with results expected at the end of this year.

There are companies that have Parkinson’s immunotherapies in the clinic already. Earlier this year, Affiris, an Austrian biotech, reported good safety results for its own alpha-synuclein vaccine in 24 patients in Phase I. Another Irish company, Prothena, in partnership with Roche, is running a Phase II trial with a different approach: injecting alpha-synuclein antibodies directly into patients.


Book: The Power of Habit: Why We Do What We Do in Life and Business – by Charles Duhigg,

If we want to reach a goal, we may need to develop or change habits.  This book will help us understand how to do that.

A young woman walks into a laboratory. Over the past two years, she has transformed almost every aspect of her life. She has quit smoking, run a marathon, and been promoted at work. The patterns inside her brain, neurologists discover, have fundamentally changed.

https://www.washingtonpost.com/news/inspired-life/wp/2015/03/02/expert-ten-super-smart-ways-to-build-good-habits-and-make-them-stick/

https://www.goodreads.com/book/show/12609433-the-power-of-habit

https://en.wikipedia.org/wiki/The_Power_of_Habit

 

 


Blocking Inflammasome-induced Neuroinflammation in Parkinson’s Disease with a Potent, Orally Available Small Molecule

Parkinson’s Disease Drug That Cools “Brains on Fire” Could Enter Human Trials in 2020

Study Rationale:
Our brains are full of immune cells called microglia, which fight infections and clear the brain of toxic products. In Parkinson’s disease, these cells are constantly active, leading to brain inflammation that damages neurons (nerve cells). Evidence of this inflammation is found in the blood and brains of Parkinson’s patients. To fight this damage, we developed small molecules (suitable to be be taken as a pill) that get into the brain, where they stopped brain inflammation in pre-clinical models of the disease. We hope this treatment could halt or even reverse Parkinson’s progression.

Hypothesis:
There are many different possible causes of Parkinson’s involving age, genetics, diets and lifestyle. Whatever the cause, we think our immune system’s response to produce inflammation in the brain is a key factor that drives Parkinson’s disease, and small molecule drugs that can penetrate the brain and stop this inflammation may be able restore the health of our brain immune cells, so they can get back to ‘cleaning up’ brain toxins.

Read more https://www.michaeljfox.org/foundation/grant-detail.php?grant_id=1521

https://www.sciencedaily.com/releases/2018/10/181031141520.htm

https://www.businesswire.com/news/home/20181031005717/en/Inflazome-Validation-New-Target-Parkinson%E2%80%99s-Disease

 

 


How Do I Know If I’m Doing the Right Exercise for Parkinson’s Disease?

Recent literature strongly suggests that exercise has a therapeutic benefit for people with Parkinson’s disease (PD). There is evidence of benefits from varied types of exercise such as Tai Chi, treadmill training, boxing, progressive resistance training and adapted tango. It can be confusing to understand which type of exercise is optimal for you and how often you need to be exercising.

Read more

https://www.michaeljfox.org/foundation/news-detail.php?how-do-know-if-doing-the-right-exercise-for-parkinson-disease