I will ask for forgiveness first and give you fair warning. The following is a conversation I had online with a dear friend who has had PD about the same length of time as I have. We share a similiar passion for photography and have met a couple of times in person, but have had an ongoing friendship online for around 5 years. We recently had a conversation in a private chat area. I asked her for permission to use portions of our discussion here in an effort to try and help others understand a little bit about living life with Parkinson’s disease and the rest of stuff life can often shove in your face. I hope none of this offends anyone. I have no such intentions in sharing this conversation, other than to give people (my family, my friends, the public, and anyone who will care to listen) a glimpse into the heart and soul of two women who find a way to somehow uplift, encourage, rant, rave, gripe and just have a heart to heart about some burdens they share and maybe, just maybe, somewhere along the way someone else will see the need to keep funding research, to keep fundraising, to keep the hope for a cure alive. That is my intention here.

The following conversation may be discouraging to some, but I feel strongly the need to share it. I have tried to remove all personal information that might directly link my friend’s identity, whom I will call ‘Leslie’. She is a person to be admired and applauded for her outlook on Parkinson’s and her willingness to share our talk with you.

I thank my dear friend who shared this conversation with me and has given me permission to share on this blog site our recent talk we had early this morning.

To read the conversation, please click here.

OK folks, this post is going to be a little different. Consider yourself warned from the get-go (Oh, I hope many of you are wondering, what’s Judy into now? I hope you’ll keep reading with eager anticipation!) For those of you who don’t know me well….well, I’m going to tell you the best that I can, why I blog about PD, why I need a support group, why I speak like I never did before, and why I must make more people aware about Parkinson’s disease. I don’t really like to talk about some of this, but it has to be done.

First, here is the nitty gritty, non-glamorous description of the illness called Parkinson’s disease. I’m gonna try and give you the ‘Judy-explanation’ of it.

Ever thought of our body as a chemical manufacturing company? It is. It makes a lot of chemicals and/or cells needed for various functions to be continuously carried on (red blood cell, skin cells, neurotransmitters all over the place). But sometimes parts of the chemical producing factory shut down (in the case of PD due to various unknown reasons) and then you start having some problems. Ok, so I thought this would be short, but hang with me. In my brain, some little cells in the substantia nigra (the ‘dark part’ of the brain) in the basal ganglia–somewhere in the cerebreal cortex (does this sound like Star Wars yet?) have slowed down their production of dopamine. This dopey chemical is really not insignificant in the body’ s movement protocol . When you get 80% or so low in it, you start having very slow movements and/or tremors. Alright, everyone ready for the quiz? Just teasing on the quiz thing, but I do expect you to at least get a little picture as to what causes the symptoms of PD.

Next is where the dark side of PD is……there is no cure. There is still a lot to know about it for a cure or even other potential therapies to happen. The good scientific people are just waiting for a ‘research stimulus plan’ to help pay for all their efforts in research to help find new therapies, and possibly a cure. But you know what??? They are not going to get major funding from the government because it’s risky business –this looking for a cure stuff. So usually only people who know someone who has PD is willing to hope with them that the efforts they offer to help in finding a cure, no matter how big or small, will make a difference.

You know, I’ve been trying to tell whoever will listen about what PD is about in my life and it may not be much in the grand scheme of things, but I feel like I’ve done at least something. Now I’m realizing my hope for a cure is not for merely a selfish desire. I want others to know, I would gladly wait for a cure, but I have friends with PD who are having a much harder time with it than I am and I’d really like to see them get some help for their symptoms…for this illness. That is why I’m urging, pleading, begging, and doing things like wearing a loud and outrageous coat for a chance to tell others about PD. And my hope is that through awareness others will see the challenge of a cure and help us in some way or another get closer to that goal.

But my plea right now is: you may not see my symptoms or my struggle with Parkinson’s, but maybe you know one of my friends….people who need some kind of rescue from the progressive advance of PD in their lives. I have friends who have suffered more than physical problems from PD….like emotional/mental struggles that have almost been overbearing , and struggles caused by indirect problems from PD that have ripped their families apart, caused financial ruin, and personal hardships that no one should have to endure. Then there is the progression of the illness sometimes leaving a friend ‘frozen’ and trapped in their own body–unable to move. There comes a point the medicines don’t always work the best. Fhere are some friends who will consider a major brain surgery called Deep Brain Stimulation (or DBS for short) to help alleviate some symptoms and maybe take fewer drugs for awhile.

I hope you can understand some of why I blog, why I interact with others in a local support group and online, and why I do some other pretty crazy things for Parkinson’s awareness. And, I hope you can understand why I’m asking you (if you can), would you support the effort for a cure for Parkinson’s disease by donating to any PD organization of your choice? I’m not asking for just myself, I’m concerned for my PD friends….friends who have encouraged me along this journey, and friends for whom I will not give up this fight! I know economic times make it hard on us all, and if you are unable to help monetarily would you please pray for those of us and our families with Parkinson’s? That kind of support is also great appreciated!

Some organizations that provide funding for research and education for Parkinson’s disease are:

Parkinson’s Unity Walk www.unitywalk.org

You may donate in my honor or anyone else who is registered as a walker or team member (I am on Team USA PD Pals or just look up my name).

Michael J Fox Foundation for Parkinson’s Unity Walk www.michaeljfox.org/ (Please read about an amazing group of people called theRegulars who are bringing awareness to Parkinson’s and Alzheimer’s diseases at www.theRegulars.org and are affiliated with the Fox Foundation for Parkinson’s research.)

Thank you for helping my friends and me in this journey. And if you get a chance, pass along a link to this site and/or this article! And know I am thankful for all you do in word and deed, and you can know that I am resolved –I WILL endure for a CURE!

Judy Hensley

You can email me about PD issues and ways you may help fight for a cure at idontnoy@gmail.com. Thanks!

I’d like to encourage everyone with or without PD, to find some way to let your friends, your community, your clubs, and/or your online contacts know more about PD. There are many ways, but I’ll throw out a couple: send someone a link to this site or one of your favorite PD sites, post a link to the Parkinson’s Unity Walk to be held April 25 www.unitywalk.com on your site or a link to a local event or support group. Attach with it a summary of your story with PD–make it personal.

I have always thought that we help ourselves in this manner: ME Tell=Awareness for others=Action by others (donation/volunteer) = MORE Awareness = CURE sooner for PD!

So, get to work my friends…I’d rather have a cure sooner. Wouldn’t you?

Also, here’s another little note of encouragement I found this week. I’d like to dedicate it to my blogger buddy, Sherri! PD can only take away your dreams if YOU let it!!

Taken from Go After Our Dreams (by Collin McCarty, Blue Mountain Press, CO):

We live in a world that sometimes lacks understanding and forgiveness. There are times when nothing seems to make sense, and times when it never will. Sometimes the most we can hope for is an inner patience …knowing that the winds of change will eventually send a fresh new breeze into our lives. Sometimes the most we can hope for is someone who understands…who touches us and tells us – without need for touching or words – that it will be OK, and we know that it will be because they are here for us. And sometimes we just need to remember…no matter what the world sends our way, that it is so important to go after our dreams, and to reach for our goals…ever forgetting that, with every smile and effort and hope…we get a little closer…every day.

And Judy might add: with every blog! Thanks Sherri for being an inspiration to me!

Hugs to all of you! NOW get to work creating awareness and chasing your dreams!

This isn’t a poem, but some thoughts that were running through my mind as I look back on getting home from my west coast adventure:

I’ve joined again the reality of my life routine

after time spent with friends across the states

I was so proud of how my PD body coped on the trip

but once home a combo of jet lag and the delayed physical overload on my body ….came and hit me hard.

I sat in a chair most of one day waiting on meds to work and help me move

When I walked I scooted and found I could do little productive work

I had slept well for once but now my body seems encased

and I speculate if the next day would be any better or not

On top of returning home, the regular schedule resumed

with extra items falling in the empty spaces of time each day

I want to scream and say “just let me catch up to the normal routine!!!”

for I know the extras will make my PD hard to rein in

There I go trying to think I can push through it all

but in my heart, I know there will be consequenses should I go it alone

So I tuck my pride inside and ask for some help to stem the tide

It is not getting any easier to meet my goals after 6 years of PD invading my body.

It causes some emotional pain when grander goals can no longer be obtained

But adventures are still worth planning, attempting, and achieving ..

even if they are not as grand and the speed to accomplish them is going down.

so I set smaller goals and celebrate ones that are accomplished…and it adds to my joy.

Some days the accomplishments may be few and most insignificant

depending on how demanding of my strength PD becomes

but as long as I can have some hope, and strive to cross even a small finish line

I’ll have pride that I have not let PD win

And minute by minute, day by day, year by year,

I will endure until someone finds a cure

or until my Maker says it is time to be made new in a permanent home

then I will lay down and my mind and heart will be content

I’m seeing that through the bad PD days

so much like an overcast day with lots of rain

there can come the minutes or even seconds …

of sunshine and blessing like a beautiful rainbow.

I’m hoping at the end of one of my rainbows

there will not be a pot of gold but a pot with plenty of PD cure inside

but if it never comes to be, may I still stand in wonder

….at what my God has brought me through

…..and give Him the honor and glory in all I do!

Judy Hensley 3/26/09

I just caught a few minutes of a show my daughter was watching. It was a dance contest for America’s ‘best dance crew’. The finalist crews’ names were ‘Super Crew’ and ‘So Real Crew’. Each had about 6-8 members. As it showed their journey to the finals, they emphasized that each group had some big hurdles in getting there.

Of course, since my teenage daughter was watching this, it isn’t the type of dance most of us might think of. No cha cha cha, polka, or even disco. No, these young dancers incorporated break dancing and some interesting non-choreographed moves, many of which left you sitting there thinking ‘That is impossible!’ It only goes to show what the human spirit can do when it is challenged and we devote our effort to a passion – something that is a very part of us, enhanced by the sharing of it with others who are just as passionate.

I was struck by one young man’s statement in his interview about his crew’s performances and their determination to win. He said, ‘You will have to kill us to stop us!’ His crew had come back when others thought they couldn’t win more than any other group in the show’s history – three times. Concerning the other team – one of the judges noted their strong performances and their belief in what they were doing even when some of their family members were not so supportive. He said they believed in themselves, then their crew, and then they made the judges and the audience believe in their passion and their dream.

I stood there and watched just a few minutes, but I was impressed. I thought, ‘These young people may not have been able to do something so impressive on their own, but they worked hard together, taking a shared vision and making it contagious.’ They didn’t listen to others who said ‘You’re out of the running!’, but instead stayed with their idea of what would work for them, even when it was atypical to most dance move history.

Now, what these young people have accomplished may not change the world, but it is a shining example of what the human spirit is capable of producing when one believes in oneself, in a common cause, or in success for the future, and all because of seeing that nothing is impossible with those kinds of attitudes.

All that made me think of the times in my life when I’ve experienced a wonderful feeling of contributing to something special. Some of those times include: playing in band in high school, playing on softball and volleyball teams, helping coach a volleyball team that came out of the losers bracket and would not give up in order to win a tournament last year, meeting and talking with others on the internet with Parkinson’s disease, and being a part of the Parkinson’s Unity Walk the last three years. The sports competitions were for personal gratification. The effort I put out for Parkinson’s is a personal passion.

My body has symptoms caused by Parkinson’s and it can make life somewhat more complicated than normal, but I want to stay determined to do all I can to help work toward a cure. I have to believe there will be a cure. I have to surround myself with others who will encourage me not to lose hope – then my spirit will endure!

I won’t make a cure for Parkinson’s disease happen on my own, but with the cumulative power of determined spirits within others who live with Parkinson’s and who want to be a part of something very special one day (a cure), we press on.

Will you believe that we can make a difference?

Will you endure?

Will you join the journey for a cure?

Will you look at each day, determined to find the things that you can rejoice in and revive your spirit? When you can’t seem to find anything joyful in the day, ask a friend to help you find it. Get in the rhythm again. Feel the joy of the dance of life.

The world will look at those of us with Parkinson’s and see us dancing a little bit out of sync on the outside, but they will never know the rhythm of hope we have together unless we can let them see it through our collective efforts of dancing/pulling together. It is then that I think they will see and know that a cure will come, and until it does, that rhythm of hope and belief will be a wonderful healing.

Judy