My Parkinson's Journey by Judy Hensley

               My name is Judy and I live in Northeast Tennessee. I am a mom, a daughter, a                    sister, a wife, a friend, a neighbor, and a woman determined to win in a fight with a                chronic, degenerative illness …Parkinson’s disease!

   I was diagnosed with Parkinson’s Disease in Nov 2002, after having soreness in my left thumb, shoulder and foot for about a year. I remember being so tired that summer. Just two years before that I may have had the first signs of something wrong when after taking Taekwondo for 3 years I was losing steam in class; it was harder to do those pushups; and my left hand would tremor when I held it out from my body. After going to an orthopedic doctor for 6 months and trying arthritis medicine, physical therapy, and a steroid shot in shoulder, he decided I should see a neurologist when I told him that people were asking me why I was limping on my left foot. Talk about getting scared really fast, that will do it to you.

  You know how they say turning 40 is the pits. I can relate. I had just turned 40 when a couple of months later I would have a CAT scan to see if anything was unusual inside my head. Everything in my brain “looked normal” so the neurologist said “I want you to try this little yellow pill”. Thanks to the services of internet searching, I had already read up on what illness I might be diagnosed with based on my symptoms. From reading about Sinemet, ‘that little yellow pill’, I knew if my symptoms were improved by that little pill that I had a problem …..and it’s name in capital letters was PD.

  Sure enough on my follow-up one week after taking Sinemet, my husband and I were told that I had young onset Parkinson’s disease. The doctor put the best possible spin on the diagnosis, but I’m not too sure I heard much after those words: Parkinson’s disease. My mind was racing, thinking “my life is over…I’ll be an invalid soon” and all I wanted to do was not cry in front of the doctor. I made it to the car and wept like I never had all the way home and for several hours later.

  After an easy transition to taking Sinemet and feeling almost like normal again, there were all the thoughts of “how long until…????” and “who do I tell and when????” “what about work????” I knew I had to talk to someone else who had been in this situation. .. In early 2004 I met Peggy Willocks, a lady who has Parkinson’s and who lives in a neighboring city. She has become a great friend, an inspiration, and a mentor to me. She started a local young onset PD group which I joined after meeting her. I’m learning though that support groups are not for everyone, but I find it to be a help and comfort as I can meet and discuss with others who have Parkinson’s how they adjusted to the diagnosis and that helps me figure out how am I going to cope with PD. I have made numerous friends online through some PD websites and have had the great privilege to meet several of them in person. These online friends give me hope and inspire me at almost any time of the day or night!

  I will admit, Parkinson’s disease is a very scary disease—you do not know how it is going to progress, or how many pills you will be taking a year from now, or if you will consider a brain surgery called DBS where and an electrode implanted in your brain may help your tremors, or if you would decide to try a clinical trial to help further research about PD. Then there are more questions like: Will my family help/understand/support me? Will my friends abandon me? Will I be able to make a difference in this world with a chronic illness? These questions with no fixed answers can drive you crazy. But as you live with Parkinson’s disease you ‘discover it’ and realize it is different for everyone, just as the symptoms can be different for everyone you speak to about it. I find a peace in the midst of all my uncertainties by praying in faith to God - who I know knows all the answers! I find a direction and contentment for my life with Parkinson’s disease through the everlasting love of my God. I look around when I get down and notice other lives in darker turmoil or pain and I’m reminded “I have no reason to complain, but every reason to keep on loving, laughing, and living!”

  Some tidbits of advise I would offer you and your family and friends if you have just found out you have Parkinson’s are: don’t retreat from reality, look for the good in every situation, find and hold on to good moral support, take this opportunity to look and learn about yourself, don’t ‘manufacture misery’ by looking too far into the uncertain future, stay active, explore new hobbies or tasks that you may not have considered before, find a cause you can support (like a cure for this illness) and ENJOY life in spite of the shadow PD may cast on your life!

  I have taken this motto to heart: “I WILL endure for a cure!” And I intend to do just that and do my best to help others with this illness find hope and encouragement to face each day!

  I would like to thank my family and many supportive friends for their daily

encouragement and faith in me and in the possibility of a cure for this illness someday. I love you and don’t know what I would do without you!

All the best wishes for you in your journey,

       Judy Hensley

POEM The Coat that Could (part 4 about da coat)

One day in 2005, I (judy) went into a discount store

my eye was caught by colorful coats by the door

I looked at the tag and gasped at the original retail price

and then I thought "at $15, this 90% discount is really nice!"

So I shelled out the cash and took the gorgeous coat home

and planned to wear it when I deemded that the time was right.

the day Carol left for church camp that  seemed a perfect time
for the coat to appear and help break any camp grind

and on that glorious day,the bright multicolored coat had it's debute
and a remarkable journey of smiles with family and friends began

But Carol did not share in the vision of fun of thisin the 15 dollar, bright and gaudy coati had found
and she would have nothing to do with me and this new 'da coat' as I shared it with everyone around! "

She begrudgingly took the coat to camp for all of them to enjoy for the week

and planned it's demise so that there would be no more coat repeats!

One day while Carol was away, I got a call asking if da coat might stay at camp Where it could continue the ministry it had started and was deemed a camp-champ!  
the counselor assured me that Carol's request was sincere
so I gave permission allowing the coat to stay, 
but as soon as i hung up the phone i regretted it and went to buy another one that day! 

off i went to to see if i could find another one of these incredible coats,
and with luck and good fortune ....I  found one marked at half off in another  BigLots store
and i was elated with a joy mixed with mischievousness that i danced with glee, 
 all the way to the register, to purchase another 'da coat....he he heeeee!

You should have seen my girl's face the day they returned to town, 
When she saw what i was wearing ,
Oh how quickly that smile turned into a frown, 
as i danced and giggled with joy as i wore another one of 'da coat I had found.

It became my mission to show my daughter

that 'da coat is special and she was the only doubter

so I asked many friends at church and other places

to join in some fun and put it on and make big smiley faces!

I soon began to wonder if my obsession with this coat could be due to my PD

so I took 'da coat on a trip to a PD conference to see.

Some of my Parkie friends were skeptical of it's power

but when they saw others put it on, their mind was changed in less than an hour.

This coat now has a life of it's own

if you get a chance to put it on, just do it and you'll see

it feels wonderful, it's so bright and cheery, you'll have to also put on a smile

and let me take your picture to show everyone it was worthwhile.

What once was "Judy's coat" is now referred to as 'da Coat

because it is no longer mine but it represents a community of mine

of family, friends, men and women with Parkinson's disease

who are not afraid of having some fun--thank you, try it on, please!

In July 'da coat will accompany Strong Feather Eileen of The Regulars

as a team climbs Mount Kilimangaro in Africa to raise awareness of Parkinson's and Alzheimers

I hope the coat makes it to the top, but if that should not come to be

the Regulars all are heros to people like me

You see they know that 'together we work for a cure'....

Me, you, kids, friends and many others who live ordinary lives

but make an extraordinary difference in our future

by being bold and courageous, tand helping all of us with PD to live with  hope and survive.

'da Coat has traveled near and far

it's been worn by people, animals, statues, and even a couple of preach'ars

and I've got over 400 pictures of others and such joy wearing the coat,
and although my daughter still does not like 'da coat, it will not stop my ploy

to sharing a little bit of joy along each of our pathways

Come along with me and da coat  and enjoy the little things each and every day!

If you have worn the coat and would like to tell how it made you feel, I'd like to share it with others in a selfish effort to bring awareness to Parkinson's disease!  

Thanks,

Judy Hensley ....a gal living in Tennessee diagnosed with Young onset Parkinson's disease, still determined to endure for a cure! 

judy 8/19/15

The Coat that Could Part 3

Part 3--Learnings from the Coat

I thought I would write some things that my outlandishly wild coat has taught me. This is the coat that brings me great joy whenever I put it on or have a new friend put it on. Besides learning that my daughter thinks the coat is atrocious, I started thinking about how some people reaction to this bright coat and my suggestion to try it on has some parallels to a Biblical story and my chronic condition of PD.

 

First the coat is colorful and draws some attention, and it reminds me of the Bible story of Joseph and the coat of many colors his father gave him. And although I'm sure it was a treasured item because his father gave it to him, it caused some bad feelings with his brothers and ultimately was the straw that broke their backs. That coat brought Joseph adversity from his brothers; he ended up sold into slavery. He overcame that and became a personal servant of the queen only to end up in jail over a misunderstanding. He overcame that and became the right hand man of the ruler after interpreting a dream. All that started with the coat? Yes in a way.

 








When I thought about it ...wearing that coat kind of parallels having Parkinson's. The symptoms eventually make us stand out; we may be ridiculed by others for standing out in an such a way that we may not have much control over. But I'm here to tell you, PD may be an adversity we face, but we can turn it into an advantage in our lives if we just keep a positive attitude. My Parkinson's has allowed me to meet so many wonderful people; it has helped me move out of a comfort zone into an active roll in the effort to fundraise for a cure; and it has helped me become more attentive to life around me and more compassionate to others.

Next, the coat makes me stand out and gives me an opportunity to tell others why PD makes us stand out. It is at first an uncomfortable feeling you have from standing out when you put the coat on....kind of like when you first find out you have PD. You wonder how people will accept you. I've found people who really don't find the coat that appealing will still put it on as a form of acceptance for me. It also gives me a chance to tell them this may be the coat I have to wear for now, a disease I have to live with for now. I ask people to not ridicule people with handicaps that may cause them to have unwanted attention drawn to them, but to treat them with compassion and be helpful if you can.  While I may stand out in this coat or my illness, I am going to take the opportunity to tell people about PD and let them know what it's like, and hopefully they'll be more inclined to support a cure.

Third, the coat has become somewhat of a trademark or way I am recognized--as a really crazy Parkie lady! I had my picture taken wearing the bright coat and a clown wig to be included in a published book called "Proud Hands of Parkinson's" This book includes stories of 28 people whose lives have been impacted by Parkinson's. I've subtitled my own page in my book as "Proud Coat of Parkinson's". But I'm learning that like wearing this wild coat, my life with PD is unique to me and I'm learning to be more comfortable in it. I mean, just think of these other people who have trademark clothing or accessories and how well associated they have become with them: Captain Kangaroo and Mr. Greenjeans, Mr Rodger's and his cardigan, ELVIS--enough said, Mr. T and his pile of gold jewerly, Minnie Pearl and her hat with the hanging price tag, Barney Fife and his gun with no bullet, Granny and her long dress and spectacles from Beverly Hillbillies, and what about Tarzan and his loincloth, Daniel Boone and his coonskin hat, and Batman with his hooded face cover and those gloves and shoes? Soon to be added to the list: Judy with PD and the multicolored coat.

The Coat that Could Part 2

PART 2 of Judy’s Story of da Coat

I've described my COAT of many bright-colored flowers that I purchased at a discount retail store and sent with my daughter to church camp around 2006 in a previous post. I will continue to share some things I have learned from this coat here in Part 2. 

It seems that people either love or hate the coat. I even asked myself why I liked the coat so much and I wondered if my PD would have influenced my sense of style?

 I wondered if I liked the coat so much due to changes in my brain from PD, so I thought "I'll see if other people with PD like the coat?” So I took it with me to a Young Onset Parkinson’s Disease in Reston, VA in after Carol returned home with the coat in the summer of 2006.

 A couple of friends who were also going to be at the conference were very vocal about not being seen with me  and the coat anywhere near me. You think that bothered me? No way!

The first night, our hotel room was the meeting point for about 7 ladies with PD.  I told them to get ready and got the coat out and modeled it. I then asked if anyone else wanted to wear it? And everyone did except for one person. I’m not the type to pressure anyone, so I left it at knowing 6 of the 7 ladies loved the coat. They put it on and modeled it, twirled in it, laughed in it, had pictures made in it! I told you …..it is FUN to wear! After a couple of days people were asking to see the coat so I took it to the hospitality room one night. Much fun was had when even the guys put it on!

  The COAT even made a guest appearance at a PD

fundraiser in New Jersey in 2007!  One of the band members wore it the whole evening. So as you can see, the COAT has a wide reputation. For me... when I am wearing it …Ican feel free to laugh and forget the symptoms of PD for a little while.

Comments from others who have gotten the coat to wear:

Karen in CA:...Well I have to share with you Judy has been calling every day asking my hubby if "the box" had arrived yet...Behold the famous Judy4etsu Floral Coat was inside...along with goodies from the Unity Walk... and other wonderful items. It was the highlight of my day!!! I have had so much fun showing this and explaining it to my friends. And I'm so glad I gotten to make new friends who share challenges of pd with spunk and determination.

See part 3 for “Learnings from the coat…”

The Coat that Could Part 1

Da Coat and Its Origin and Objectives by Judy Hensley

Part 1—How I Came to Obtain This Lovely Coat

Many people have asked me to tell them about this coat I started showing off around the year 2006.  I had been diagnosed 4 years with Parkinson’s Disease at this time.  My daughter Carol was 13 years old…that age where they expect their parents to act their age.  Well my daughter got me with PD and a need to be seen and heard and to embarrass her whenever I could. So here we go…sit back and read the story of “The Coat that Could”!

 My picture wearing this coat is the one that will also be in the "Proud Hands of Parkinson's” book along with a brief story of my Parkinson’s journey there. Just so you will know, I'll tell you the story of how I got this bright colored coat and used it to spread awareness about Pakinson’s disease and as only a mother can do, I used it to embarrass and make a point to my daughter.

Part 1 How I came to Aquire the Coat

  A couple of summers ago I went in a discount store and saw some bright floral, light rain jackets with a designer name tag and an original retail price of near $200. I thought of buying it for $15 to use in skits at church. I thought the larger jackets felt better on, so I bought it, took it home and put it in a closet.

  A week or so later my daughter was leaving for church camp, so I thought “just in case she gets sad about being away from her Dear Mom and Dear Dad”, I could lighten up the occasion by wearing the coat. She got in our van as I picked up a few more snacks out of the pantry and as I grabbed the coat out of the closet I put it on with some really cool sunglasses and bounced out to the van!

 My Dear Daughter gasped and said "Mother, where did you get that ugly coat? And why do you have it on?" (I know I have really done a great job embarrassing her  when she refers to me as 'mother'--she was 12 at the time.) My reply was "Baby, I'm sending you off in style!!" And you know the next thing she said, don't you? YES, it was “You ARE taking that jacket OFF before my friends see you, aren't you?" To which I just smiled and we proceeded to the church as my mind was formulating a plan. 

 As soon as we got to the church, Carol bolted out of the van got her stuff and gave me that look….you know the one…it is the “I-dare-you-to-get-that-thing-close-to-me” look.  It didn’t work on me and since I could not go with them that summer to camp, l sent that coat with them.  I had to, everyone was going crazy over it!!!! My Dear Daughter left that day swearing that she would find a way for the coat to stay at camp!  I heard her little plan and told her it had to return or she was gonna be in big trouble!

 As it turned out, the coat went to church camp in South Carolina and it was a big hit there!  Just like I knew it would be. Camp was almost over and I got a call from one of the adults who went to camp with the kids. She said, 'your daughter has something to ask you and I think she is sincere'. My Dear Daughter then tells me in her most sweet angelic voice that she would like to donate the coat to camp so that many people all summer might enjoy it! I told her I could tell that she had honorable intentions, so I agreed to let that coat stay in South Carolina.

  The next day on my lunch hour, I popped into the discount store in another city, and low-n-behold....there was my beautiful coat, and on CLEARANCE for $7.50!!!! Now who could pass it up? I could not wait to pick up my Dear Daughter the next day in the coat she just loved!!! Her look when she saw me....well, it was priceless!!!!!!!!!!!

 Since my daughter hated the coat so much, it became my goal to demonstrate to her that she was in the minority on this, so it became my goal to ask as many people as I could to put the coat on and let me take their picture in it to show my daughter how mistaken she was about the lvely, multicolored coat. I tormented her with that coat,  pictures of others in it, and even mailed it to people in several states and they would send me pics of them and their friends with the coat on.  I think she finally realized the only way to get away from the coat was to move.  So she went and got married in the summer of 2012 and the tormenting her by the coat ceased. I had to promise on my life NOT TO HAVE THE COAT SHOW UP AT HER WEDDING.  I was a good momand honored my promise.

 

Stay tuned and I will tell you more about the coat's adventures in part 2.