not the best of times....2020

I have struggled as to whether or not to write this blog.  It is because so many   people I want  to remember are no  longer here on this earth and many of them died in the last year.

Of course the year 2020 is not over yet.  I did go and vote in early voting to try and change the course of catastrophes and bungles by  the government that it is almost sickening.  On top of it all you don't know know who to believe ...so many things taken out of context at the result of riots and bigotry and senseless destruction of  property and the loss of peoples lives.   Who would have thought it would happen in the good old USA. 

The media says people are tired of wearing masks to try and make a dent in the number of lives affected by  a virus that came to be and spread all over the earth in just a  few months.  They call it COVID19.  The page at the cdc.org tells you how they name these things that can make you deathly sick

None of the people that I know below died from  the virus .   And I hope many of you  only lost the chance to get some toilet paper during 2020. 

There is no way to rank these whose lives were full and made an impact on mime and we are now left to carry-on without them:

James Good, my Dad passed away aug 22, 2020.  He is remembered for the many good things he did along the way.  And two of his and mom's life-long friends passed this year as well.  I also have had a couple of friends with Parkinson's disease who passed on.  There are more buut just know that we may appreciate more a gathering of family and friends to give thanks.  I hope you and yours find a way to be together for Thanksgiving and that you all stay safe.  

  Here is a prayer I wrote for Thanksgiving 2020

A few days before Thanksgiving 2020:

Dear God,

 It is going to be a hard one this year.  Thanksgiving...that is.  How do we be thankful when someone

we love deeply is not here to join us?.  When even our most desperate pleas to you seem to go

unnoticed. 

But we are never comfortable in our own skin and want to be like you always thinking of ourselves aren’t

we? That is not how and why you made us..But we are scared, God, because we don’t feel in control,

and then we ask “why?” because we just think we can handle the answer.  Sometimes we don’t

hear you shouting in our not ears “so you can know that I am for you” 

 It is kind of ironic that all the spread of a virus named Covid 19 has killed so many.  Covid-19 was

named with the 19 at the end to designate the year it killed people in adjacent countries,  )what a

pandemic is known for as well.   Covid -19 was named on the last day of 2019.This 2020. 

People all over the world are tired of wearing a mask to cover our mouths and waiting on

a vaccine (we are an impatient people are we not?)   

 When you are examined by an eye doctor, if you have 20/20 vision you do not need to

have glasses with lens correction to get you to have 20/20 vision.  Lord, help us see

through your lens and light. So that we can see those who stand for the truth.  When

we see those without work, or struggling in some way…. Let us show them mercy

like you have done to us.

  I can remember this verse because we used to sing it in a song, but it seems very

appropriate..it says:this “2 Chronicles 7:14

if my people, who are called by my name, will humble themselves and pray and s

eek my face and turn from their wicked ways, then I will hear from heaven, and I will

forgive their sin and will heal their land.  I am not sure our land can be healed without

your help.  We need to remove HATE and DISCRIMINATION from our HEARTS & MINDS

.  And GOD lead our governments in ways that will honor you.

  It is not going to be easy but I am praying and asking , in your name, with a heart

needing a little extra joy, Amen

Judy Hensley

Alot of special people that have come and gon--+e in my life

.
I don't know if I have mentioned it before, but I have a special memory book that i started a couple of years ago.  I try and write a short description of how some very special  people have influenced me.  If I have gone to their funeral, I put one of the memorial papers in with it, or I print out their obituary and place it with the other papers above.

It seems like this year, more than any other, so many that I know and admire have passed on.

I will be trying to catch up on my summaries of these in the next days.  They have died since the start of 2020 and none by the COVID-19 virus:  
Karen Mankey- friend with PD from Pennsylvania
Reuben Arbogast - almost like a grandfather to me, he was the father of a friend from church
Arlie Eanes- his wife Faye passed away last year.  They were friends of my parents and met when daddy was in the service.

Mary Markland - a dear friend of my mother's when they were in college together.

Enzo Simone-an advocate of epic proportions for PD and ALZ.

Karen Bacon Barnette- a friend since elementary school.

All these and just when I thought I was about to catch up on my memory book.  Sigh.

All such special people with special gifts and big hearts.  I know I am getting old but this is ridiculous.

ARticle about USA PD PD PALS and their walk at the Unity Walk in 2006 by Tina Stokes

www.unitywalk.org

P.O. Box 275
Kingston, NJ 08528
toll free: 1-866-PUW-WALK

USA-PD PALS Top Fundraising Team

 During Their Very First Unity Walk (4-06)

By Trina Stokes

Ann Marie (Annie) Konopka of New Jersey and Judy Hensley of Tennessee, Team Captains of USA PD PALS, didn’t take their diagnosis of Young Onset Parkinson’s disease lightly. Undaunted by such a diagnosis of PD, they both have become involved in two different states in a common effort to reach out to the public to raise donations for research and to help others understand Parkinson’s disease. One of the major efforts in this quest was to have a team in the 2006 Unity Walk and raise $10,000. These two women have stopped at nothing to reach and then exceed their team goal by $7,000. “Some people with Parkinson’s aren’t able to get involved with the cause—Judy and I are lucky that we can,” says Annie.

Annie resides in Kendall Park, New Jersey. She was diagnosed two years ago at the age of 39. Her pride and joy is her husband, Joe and their son who is 10 and their daughter, age 5. She stays very busy with a wide range of interests, i.e. painting and poetry.

Judy is from East Tennessee and works full time as an analytical chemist. She was diagnosed over 3 years ago at the age of 40. She has been married for 22 years and has a daughter who is 12 years old.

These two friends met through an online support group. “I was responsible for interviewing ‘a person of the week’ for our newsletter. I read Judy’s story and realized we had a lot in common—such as our hopes for the future,” Annie stated. And they became friends in a year’s time.

Annie began to champion support and started a new online group called USA PD-PALS. “She is a go-getter. She likes to tackle new things so she started a chat group through Yahoo and began to see membership and interest increase,” mentioned Judy. “This is an educational support group where we host special chats one night a week about a specific topic of relevance to PD. It’s really neat to be a part of a support system that understands each other. We have grown to over 75 members, including people from England and Australia. The name of the group is only indicative of where it originated. Anyone is welcome to join this caring online support group,” noted Annie.

Annie and Judy try to cope with their disease in similar ways. However, their diagnosis came down two very different paths.

About one year before Judy’s diagnosis she had gone to her primary care doctor with a sore thumb and eventually a hurting shoulder. Still having questions—her doctor sent her to an orthopedic doctor. By that time she had developed a limp on the same side. That was enough to get a referral to a neurologist.

“A few months before I was diagnosed I read an article in my local newspaper about Peggy Willocks, a leading advocate for Parkinson’s disease and a Young Onset patient herself and from the description of her symptoms, I knew that a diagnosis of Parkinson’s disease was a real possibility,” said Judy.

“My husband was with me in the neurologist's office when I was told that I had Young Onset Parkinson's disease. we asked a few questions but left not knowing what this diagnosis would mean to us. I felt numb leaving the doctor’s office—and I cried all the way home. Since then my family and church have been great sources of support. You may know all you can about Parkinson’s disease but it is really an emotional adjustment to come to grips with it. Also, talking to other people with Parkinson’s is a big help—they help me see how others cope from day to day,” Judy expressed.

Annie goes on to say, “Unfortunately, for me my diagnosis wasn’t as quick. It took 5 years. I had terrible pain in my left arm and had a lot of facial pain. My symptoms were coming and going.”

“At one point I had a very bad sinus infection—then I began to see doctor’s to try to get answers. I saw a world of doctors. They were telling me it was stress related and that I should see a physiatrist but while I was pregnant with my daughter my symptoms seemed to subside,” Annie said.

“Six months post partum, a tremor in my left hand became more prominent. I thought I had Multiple Sclerosis. However, I took one doctor’s advice and saw a neurologist. The neurologist I saw at the University of Pennsylvania tested me for Multiple Sclerosis and couldn’t find evidence of the disease and told me to come back in 6 to 9 months if the symptoms worsen and speak to his colleague Dr. Stern, a Movement Disorder Specialist,” remarked Annie.

“In the meantime, my husband and I continued to seek out answers. I went back to the University of Pennsylvania and we weren’t in the doctor’s office for a minute when Dr. Stern, a Movement Disorder Specialist, diagnosed me with Young Onset Parkinson’s disease,” Annie said.

Annie went on to say, “the not knowing was worse—then just having my concerns validated—it was bitter sweet.” And Judy agreed by saying “at least when there is a proper diagnosis you know what you are going to face.”

USA PD-PALS made their debut at the 12th Parkinson’s Unity Walk. They had over 30 family and friends walk that day. “We love the Unity Walk,” said Annie. And after a first time visit to New York City, Judy said she is ready to return.

“My husband, daughter, sister and two friends from church came with me. They could have given a lot more monetarily to Parkinson’s Unity Walk but they wanted to show their support by participating in the Walk—this meant so much to me,” said Judy.

Both Annie and Judy described another exciting activity they were able to do while in Manhattan. They went to the Today Show to be spectators during the outside concert on the Friday before the Walk. “We were standing outside and asked one of the crew members if we could give Katie Couric something. She came over and we gave her a booklet, Stories from our Parkie Hearts, that we compiled from stories written by other Young Onset PD patients about their lives and we gave her a tulip magnet which has an inscription ‘Cure Parkinson's’. We told her we were in New York City for the Unity Walk the next day and she wished us the best. We later got to go in the studio shortly after the show was over and got to meet and talk with Katie, Matt and Ann. They were so gracious and encouraging and let us take pictures with them.” commented Annie.

This was Judy’s first time to New York City. She told me that she felt a little intimidated to come to such a big city and experience 10,000 people in Central Park. However, she became comfortable immediately. "I took over 250 pictures during my visit—I just couldn’t believe the awe-inspiring environment and people that were there the day of the Unity Walk,” mentioned Judy.

“We feel like people are doing themselves a disservice if they don’t try to come—it’s a great social gathering—but the educational information is invaluable,” Annie mentioned. Judy told me “You know Trina, I was reading about the 1st Unity Walk that had over 200 people and raised $16,000—this was our first year and our team of 14 raised $17,000. We couldn’t be more excited!”

Annie remarked, “this team started early—we started our fundraising in October. We had individual goals of $5,000 and $2,000 and a team goal of $10,000 at first and had to quickly increase our individual goals. Our fundraising agenda included: Pennies for Parkinson’s, Pizza for Parkinson’s, selling tulips, meeting with local banks and schools, and an online raffle. The donations began to roll-in and we received lots of support from family and friends through on-line donations on the website. On April 13th, two weeks before the Walk we hit our team goal of $10,000 and did not stop.”

These two go-getters give a little advice. “People should realize that even if they aren’t able to come to the Walk they can still help at home, by using the phone or computers to help get the word out. It doesn’t hurt to ask people for a donation—the worst they can do is say ‘no’. Tell someone about Parkinson’s disease—don’t be shy about raising awareness,” stressed Judy. “Everyone has a different way of doing things—network, use your talents and don’t give up!”

Each person participating in the Walk has a very personal reason for doing the walk. Annie and Judy said they felt excited every time they checked to see how the donations were adding up on their team page. It is their ultimate wish that some of their effort will result in a cure for the disease that is affecting their lives, their friends lives and many others who live with
 fax: (609) 688-0875Parkinson's disease. Together they have found a way to personalize, through the Parkinson's Unity Walk, their determination to work for a cure. Annie ended the conversation when she said “Parkinson’s has changed my life—but I’m choosing how it will!”

Thank you to all our Teams that help us get one step closer to a cure.

Trina Stokes

Annie and Judy meet Matt and Katie from the Today Show.

USA-PD PALS at the 2006 Walk.