Thursday, May 18, 2023

Support parkinson's research





Help fundraise for The Michael J. Fox Foundation for Parkinson's Research


Cheryl and I will be running on June 16th to support the Michael J Fox foundation for Parkinson's research. Their mission is to Eliminate Parkinson's disease in our lifetime.


Parkinson's affects 1-2 % of Americans.  The Michael J Fox has raised over $1 billion for research.


Just last week,  Michael J Fox foundation announced a major breakthrough in the discovery of the first biological test that can detect Parkinson’s.


Please consider donating to cure Parkinson's disease in our lifetime.


Mahalo nui loa


Cheryl & Chris


Check out my fundraising page for The Michael J. Fox Foundation for Parkinson's Research - https://give.michaeljfox.org/fundraiser/4682147


Wednesday, April 26, 2023

Sunday, April 23, 2023

Falling demons be gone.!



There are 25 Parkinson's symptoms but only one scares me... losing my balance

Falling is scary. Sometimes it slowly happens, Other falls are a complete surprise. I always fall in slow motion. Everything slows down. Often I sense the awkwardness of the body falling followed by the collision and bewilderment. The fear and the quick damage assessment. My mind replays the fall for days or months.

In the past 5 years, I have had 3 really bad falls resulting in significant injuries, 15 falls with no injuries and 60 near falls.

My brain is always assessing the path of the least risk. I have been fall prone for about five years. Every bad fall is too many... but it could be much worse. I am fortunate to make thousands of good choices. The good news is that I have learned the hard way and made some changes which substantially reduced my falls.

While I am tempted to use a wheelchair, I know I will never walk again and my health will decline faster. My best option, is to keep moving, kore fall training anf make even better risk decisions.

My first bad fall was the result of a bad tendency when I froze to lean forward to initiate movement which resulted in an awful shoulder dislocation combined with long emergency room wait causing nerve damage and paralysis of my left arm and hand. The most painful injury.  It's been a long road to regain function and I have a way to go, but I will get back to zero. This injury taught me not lean to initiate moving and to immediately rehab injuries to regain functioning no matter the effort and pain.

My second bad fall was result of rushing to the front door for a delivery resulting in surprisingly fast and an awkward fall resembling a tree falling. It's chipped my front teeth during the pandemic. The chipped teeth reminded me of crack addicts and l avoided leaving my house. I wore a helmet after this fall. I learned of the "how to fall classes" and attended one to reduce injuries.

My third bad fall was a real eye opener falling from the top of a 5 foot ladder backwards onto a hard concrete garage floor. The fall class I took after the second bad fall saved my life. I was totally surprised to find the ladder under me was tipping sideways on two legs.the other two legs were way off the ground. I hadn't sensed any movement until it was too late. Things slowed down. I recalled my "how to fall" teacher saying tuck your head pressing your chin into your chest and roll onto your side. Surprisingly my Parkinson's body responded and I tucked and rolled on my side, my left hip hit the hard concrete and instantly fractured. No head trauma. It was an excellent result fot falling backwards from five feet height on a hard concrete floor. No believed I hadn't hit my head.

I am very fortunate. It still haunts me to this day. I will never use a ladder again. 

Parkinson's doesn't kill but parkinson's symptoms cause falling which does kill. While a wheelchair will greatly reduce falling, the human body is designed to move not sit. Muscles are essential for  everything humans do: movement, eating, drinking, eye sight, talking, bathroom.,.everything. Inactivity is by far the #1 contributing factor to death . My good friend is a chaplain and he says 90% of people  dying are wheelchair or bed bound. 

Keep moving and be safe! .



Maile Point Pillboxes

Maile Point Pillboxes

A short, steep and rocky trail. A great challenge for anyone.
I'm sure 
A test of my Parkinson's balance, strength and climbing skills. What I learned;
  • If wet don't do this hike
  • Starting after a stop is very important tricky.  Be careful
  • Use only one walking stick and use free hand to grab trees and rocks (build left arm strength)
  • Lean into slope 
  • Hiking boots




Sunday, April 16, 2023

Aiea Loop Trail




Longest hike in 3 years

  •  4.76 miles
  • 2:27 hour
  • 1520' ascending
  • 725' descending 
Slight right knee pain


Saturday, April 15, 2023

Parkinson's Quick Start

Parkinson's is a major disease affecting roughly 1-2% of the population. It is highly variable disease with varied rates of progression affecting patients differently. 

Here's what I have learned are the keys to thriving with Parkinson's.


State of mind

Happiness, fulfillment, perspective and positivity are a state of mind.  Everyone has challenges in their life and parkinson's just happens to be your challenge. Dwelling on it will not change anything. Don't go it alone, build support by sharing with your family and friends. You are so fortunate to live in this era of new medicines, technology, live in Hawaii and wealth. Your best days are ahead of you. It's all about your State of mind.


Exercise

Your  Parkinson's symptoms with proper diagnoses and treatments can be managed to retain function but only exercise can slow progression of Parkinson's.  You alone limit or thrive but you must engage in your care.


Medical specialists

Parkinson's is highly varietal, complex and constantly benefiting from new research. To receive the best care available requires a specially trained neurologist called a Movement Disorder Specialist. There are only six in Hawaii. Similar to your primary care doctor, your Movement Disorder Specialist will be your Parkinson's primary care doctor directing a team of medical professionals. It is important to choose medical professionals with experience with Parkinson's treatment. If in doubt get a second opinion, attend your local parkinson's support group and if necessary travel to receive the best care available. 


Home improvements

Your home should be your safe space. Remove or modify dangerous elements. Increase safety in bathrooms with grab bars. Use aids as necessary. Consult with a n accessibility professional and occupational therapist. 

lineAppointment preparation 
Parkinson's is complex with both physical and mental elements. Early Diagnosis of new symptoms requires recognizing and documenting your symptoms and communicating with as much detail as possible. Preparation for medical appointments is critical. 


Your quality of life can be excellent but it is dependent on you being 100% engaged.
Thriving with Parkinson's is completely in your hands.

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