I was thinking of attitudes and how we express ourselves to others. It is really a choice. I have always liked the saying, “Your attitude is a reflection of your gratitude.” If we are grateful for things and have an optimistic outlook, we tend to act one way versus the way one who is pessimistic may behave, feeling they have no hope or they are beat down.

We all have minutes, hours, and even days were we don’t feel the best and life has just ‘bit us in the butt’, but the journey is much more pleasant when we decide to think positively and look ahead with hope.

So here is my alphabetical choices of attitudes we can have. The choice is yours to make, and I hope your outlooks tend to be more like those in the second column!!!

Accusatory vs. Accepting

Bent-out-of-shape vs.Blessing

Critical vs. Complementary

Dismal vs. Delightful

Emptiness vs. Expectant

Flaming vs. Forgiving

Gossiping vs. Genuine

Hateful vs. Happy

Loathing vs. Loving

Jerks-are-me vs. Jovial

Knave vs. Knight

Insulting vs. Inviting

Mad vs. Motivating

Needy vs. Nourishing

Overbearing vs. Open-minded

Pouter vs. Proactive

Quitter vs. Quickener

Rebellious vs. Reaching out

Seething vs. Soothing

Terrible vs. Terrific

Unlovable vs. Understanding

Vile vs. Victorious

Wicked vs. Wonderful

XYZ– Don’t’ you think this is enough? If you don’t, you can do XYZ for me!!

Thanks
Judy

I’ve been gone. Gone to Kentucky for a week, to be with my brother through his hip surgery and hopefully I was some help afterward. Three weeks ago, I was in Montana helping my mom with my dad after his back surgery.

A lot has happened in between then and yesterday. For example, I broke my toothbrush. What?! you may ask. Yes, I broke my toothbrush. It was one of those electric kind that run on batteries and my hand was refusing to cooperate and the harder I pushed, the harder I scrubbed, well… it broke.

And, that was the last straw. I broke down. For the (I think) first time since being diagnosed five years ago, I was angry and grieving. Through that melt down, I learned several things (not in any particular order).

1. I am tired.
2. I cannot do what I used to do.
3. I can’t cope with disorganization in my life.
4. I am frustrated that I get distracted so easily.
5. I want my doctor back.
6. I came home seeing improvements in the people I cared for, while nothing inside me got better.
7. I know that things can always be worse.
8. No matter what does or doesn’t happen, it will not catch God by surprise.

I started this blog about four years ago as more of a journal. During my melt down, I realized I miss that. Sometimes I think I have to be strong and not let others see the struggle within me because of this disease. I have tremors that are becoming more noticeable, but it’s what goes on inside of me that makes others say things like, “You sure don’t look like you have Parkinson’s disease.”

Sometimes, don’t you wish you could switch birth suits so others might have a better understanding? Everyone’s perception of certain diseases is different. Many people don’t realize all the different elements that can be prevalent in Parkinson’s. Depression. Loss of smell. Pain. Loss of mobility in doing basic, simple tasks like tying your own shoes. There’s so much more, but I don’t need to go into that.

The thing is – I love to write. It’s harder now than it used to be. I don’t even attempt handwriting anymore unless it’s signing a card or something similar. Even the computer frustrates me, especially when my ‘mobility’ isn’t cooperating and my mind is racing with ideas.

I love to encourage others because of what I’ve gone through. I believe that God always places someone a little further up on the path of life, so that they are able to help us on our journeys. Someone a little more experienced, a little bit wiser. They come alongside us and there’s an instant camaraderie. The circle becomes complete when we do the same thing for others.

So, even though my discouragement (and sometimes despair) kicks in and beckons me to walk toward the side of the road where discouragement dwells, I’ll remember my list…

1. I am tired, but I’m still kicking.
2. I cannot do what I used to do, but I am doing something.
3. I can’t cope with disorganization in my life, so I am working on simplifying things in my life so I don’t get so frustrated.
4. I am frustrated that I get distracted so easily, so I am making a concerted effort to improve my brainpower any way I can. (Anyone have any suggestions?)
5. I want my doctor back, but I’m willing to go where God sends me.
6. I came home seeing improvements in the people I cared for, while nothing inside of me got better… and that’s okay.
7. I know things can always be worse and just might, but…
8. …no matter what does or doesn’t happen, it won’t catch God by surprise.

So, I guess this is to say, I hope to get back to posting more regularly and more personally as I journey day by day with PD. After all, it’s when we allow ourselves to become transparent that we can do the most good for those coming behind us.

Who’s following you?

It was a year ago exactly, that I was surfing the net and came across a group of regular people that caught my attention. I didn’t know anything about them, but I was intrigued when I discovered what they were up to.

They call themselves the Regulars. For those of you not familiar with this group, they are a team of ordinary people, on a quest toward a great purpose. They are determined to bring awareness to Alzheimer’s and Parkinson’s disease in order to find a cure.

The group, founded and led by Enzo Simone, began its quest in 2006. A Trail Called Hope was born out of Enzo’s desire to see Parkinson’s and Alzheimer’s disease conquered by bringing worldwide attention to help in finding a cure. His method? Conquering one mountain at a time for the next ten years and forming an ever-changing entourage of members who climb with him each year.

Several have been invited to climb, but not all are able. If physical limitations don’t present a barrier, then the work it takes to just get to the trailhead itself may hinder a wanna-be Regular. In Enzo’s words, “Becoming one of the Regulars is not a flight of fancy and will require you to work hard in more ways than you can imagine. You will promise yourself and others a number of things by becoming one of the Regulars.”

What exactly are those promises? Enzo calls them the Regulars’ 11 Commandments, making it clear what is expected from each team member. Some of them are:

~You must be willing to fund raise.

~You will be willing to make many sacrifices.

~You must be willing to raise awareness.

~You must be willing to pay your own way for all expenses.

~You must be willing to share your experiences with others.

~You must be willing to promote the need for not one, but BOTH Alzheimer’s and Parkinson’s to benefit the Alzheimer’s Association AND Michael J. Fox Foundation – Team Fox.

~Although the following is not a requirement, it is usually best if Alzheimer’s has impacted your family (or Parkinson’s) so that you have seen the devastation first hand and can tell others through your own experiences with these diseases.

Raising awareness and funds for Parkinson’s and Alzheimer’s disease is not just an agenda for Enzo. It is also a personal quest. He sees the devastation it has caused in members of his family. He knows of and has lived within its consequences with loved ones – first hand. However, because of the trail he has chosen to walk, he has seen and/or met hundreds, if not thousands of others who have been affected by these diseases. He knows their struggles, their dreams, and often many times, their hopelessness. However, Enzo’s motto: In the quest to conquer Alzheimer’s and Parkinson’s disease, we were born to end this! In living his motto, he in turn has revived hope in the people who are afflicted with these diseases.

In his latest climb, he and his team conquered Mt. Kilimanjaro in July of this past year. The climb was filmed and sections of can it be seen in the upcoming documentary, 10 Mountains 10 Years, which is being produced by Back Light Productions. The movie’s introduction is done by Leeza Gibbons, narrated by Anne Hathaway and Bruce Springsteen has contributed his time and talent to the project as well. The film festival locations and dates, however, have not yet been released. This is currently the Regulars’ largest awareness project/fundraiser they’ve currently got in the works.

Their next climb? What originally was to be Aconcagua in Mexico, the Regulars have taken a side trail and substituted “The Army of Change” Mount Washington project in New Hampshire to their list of mountains to conquer.  This ‘little jaunt’ was added for the benefit of those who are fighting for a cure for Alzheimer’s and Parkinson’s disease and are unable (for whatever reason) to conquer an Everest or a Mt. Hood but want to participate in some sort of climb. Because of the magnitude of interest the Regulars are stirring, they hope to get at least a thousand advocates climbing Mt. Washington together this summer. (If you would like to be a part of the Mt. Washington climb taking place on July 31, contact Enzo Simone at the Regular’s website 10mountains10years.)

As I said, it has been almost a year since I first heard about the Regulars. Within that year, they have raised thousands of dollars to find a cure for Alzheimer’s and Parkinson’s disease. Within a year, they have climbed a minimum of 19, 341 feet – the height of Mt. Kilimanjaro. Within a year, they have brought considerable attention to their cause – a quest to end these two diseases. Within a year, they have given hope back to those afflicted by two debilitating diseases and enabled them to dream once again because of the attention this team of regular people are bring to these diseases.

If you’d like more information, you can visit their website above or find them on their Facebook page, 10 Mountains, 10 Years. Perhaps within a year, we’ll have witnessed history and seen a cure finally found for Parkinson’s and/or Alzheimer’s disease. Now, wouldn’t that be a mountain top experience!

I’m here to tell you about a team
of girls who play volleyball in east Tennessee
They are playing in the state tournament this week
their goal is simple :  play with heart and refuse to be beat.

They have a game plan emphasizing bump, set, spike.
Do you think any of that would apply to life?
“nah,” you might say but I would like to propose:
we need the strength and discipline of a game plan in life or volleyball…to overcome our foes.

Let’s start with receiving the opponent’s serve
Life can throw things at you that will test your nerve
Face it square on and claim your ‘game on’ strength
With God on your side– that’s the best defense.

Realize you are not out there all alone
Use the team around you to gird up your bone
You must work together and know this one thing is true
God has promised he will never leave or forsake you.

Your next move might be to pass the ball to a teammate
By doing that you show your trust even if they should make a mistake,
God has put friends and people of support in your life
and if all of that fails His Holy Spirit will ease the strife.

Some games are easy, others are hard and we may lose
But if we keep our faith, then through it all, God will honor what we do
And then the game and our life will come to an end
We may look back and ponder how it all began.

A journey, a game, a lifetime, a match,
Some games had great bump, sets and spikes and others we’d like to scratch,
it’s not just how we play a game or live our lives today ,
but how we do it all through life that determines our eternal way.

A final reward is to meet the Coach upon whom we’ve depended
On His courts of praises that will never be ended.
There He will proclaim whether we have done well
or never trusted Him to help, and in our own self we did dwell.

So when you play that game of volleyball – the next time,
Or face something in life that could turn out bad or be just fine,
Give it your all and don’t give up hope
GOD is with you always and will help you cope!

Judy Hensley
10/28/09

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.

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’m an exception…if you haven’t already noticed! I don’t drink coffee or hot tea in the morning. I rarely even have hot chocolate, but we’ve got plenty of mugs, so I put my morning drink in one of my favorites. Most people have a favorite cup/mug/drink container, don’t they? I do, especially for my morning drink.

I suppose I’m like many with Parkinson’s, I awake in the morning and head straight to the pill drawer and for a cup of water to wash 4 pills down my throat. Then I survey the cabinet for one of my favorite mugs into which I put in my morning beverage (something other than coffee or hot tea). There is just something comforting about having one of those favorite mugs to start the day out with!

So as to not keep you in suspense I am including a picture of some of my favorite mugs, and I’ll tell you a litte about them. You never know, you may gain some insight into my ‘exceptional personality’ by this blog, but if not, don’t worry…I was grasping for something to blog about…lol!

Ok, starting left to right…the two blue/whitish pottery looking mugs…I love the uniqueness of pottery. And apparently I have a liking for blue or grey colored ones. Anyway, the round one is larger and quite appropriate for a big cup of chocolate milk most mornings. The mug with the gulls on it I bought one year at Myrtle Beach, and it always brings back fond memories of many summer vacations that my family spent there. I like putting my cold diet sodas in it (I know they are not good for you, but neither is all this weight on me). The next mug with the brightly colored butterfly and tulip on it is one I pick out on days when I think things might go a little rough, and I smile when I drink out of it. The mug with the bear friends on it was sent to me by a very special person who has an amazing outlook and energy for life. (Thanks Bnana!)

I wish many mornings I could sit and share a morning drink and discussion in person with many of my online friends. But I’m glad to be able to chat or read a note from them many mornings and that makes the day start out just right!

The mug on the far right is another one with a butterfly on it. It came from Dollywood about 90 minutes down the road. Not only is the butterfly a symbol of hope to me, but Dolly Parton’s life and her willingness to give back something special to her community make it special to me. For some reason this mug is the one for good cold sweet tea!

So there you have it…maybe you could tell us about something that is a favorite of yours? We’d be delighted to hear from you!

I hope you’ll enjoy reading about my mugs with your morning drink or brew, and have a fantastic day!

Judy

P.S. will brag on hubby–he brought home the flowers the other day! Wonder what he wants? lol

You’re not alone..

Our website exists to share experiences with others who may have Parkinson’s Disease or know someone who has Parkinson’s Disease. Why? Because at some time or another, many of us may feel alone in life and there is a great sense of comfort knowing we are not alone. I wanted to share with you what helps me when I get that lonely feeling, and maybe you know about it or have other means of not feeling alone and hopeless. But first let’s think about that lonely feeling…

It is a powerful feeling, loneliness, isn’t it? Some get so lost in it they lose all hope and take drastic measures to escape the loneliness. So many situations in life can make us feel lonely – an illness, family issues, a lost job, financial problems, emotional struggles, and stresses all around us. Hopefully our past experiences help us learn how to cope with such instances, but sometimes something comes from out of left field and knocks us for a loop.

You get up and wonder ‘What happened? Where am i?’ and I would imagine you’d start asking, “Is anyone else here? Anyone know what’s going on? Can anyone help me figure this out, or get a clue, or just say ‘Hi’?” It’s when no one answers you feel that complete and utter sense of loneliness.

Sometimes loneliness is beneficial for us. We may start to look inward and evaluate our problem on our own. When we finish the evaluation or an attempt at fixing the situation, we may realize “Hey, I need a little help here!” and we want to find someone else to relate to our situation. If we find no one or nothing else helps, then we get desperate, irrational, we lose hope, we lose will, we …just lose.

Consider some intentional uses of loneliness to our detriment. War prisoners are often put in isolation to break them and obtain information; the pirates would make their enemies walk the plank, and fall into the ocean and leave them there to die. I cannot imagine how lonely that would be! On the TV show Survivor, one of the contestants can be banished to ‘Exile Island’ for a day to diminish their spirit, and I’m sure you can probably think of others. Even peer pressure can be a form of isolation.

Even God made a mate for Adam so he would not be lonely.

When we are under the cloud of loneliness, it can be hard to think straight, but I’d like to remind us that we have support mechanisms to look to for help. If you have a strong and supportive family, that is a great blessing and a source of help when we get lonely. We as family members need to remember reaching out to lonely family members sometimes means just being there to listen and give a hug.

Next is your network of friends. A close friend may be the one you look to, and good friends often know just what to say or do to help with loneliness, and if they don’t then they may know someone else to contact to help. These personal contacts are often what we need to help us in these times, but I’ve found that many times my efforts to not feel so lonely can be helped tremendously by looking to my faith in God. Knowing that He can provide comfort by His spirit or through the actions of friends or family (that may be lead by His power to help) is a great source of comfort when I am lonely.

So whether I look to my faith first or last, I know I am not alone. Another thing I might throw out is our belief in ourself. You may not think you have the strength to overcome your present battle or loneliness, but you never know until you try. Never give up on yourself! Know that you are never really alone, reach out and take a helping hand when it is offered! I think you’ll be glad it was there.

And one last tidbit of info that I read by Max Lucado in “Traveling Light for Mothers” is this: meet today’s problems with today’s strength. Don’t start tackling tomorrow’s problems until tomorrow. And he states that we simply have enough strength for each day, and that God will provide strength for each day if we seek Him for it.

In Hebrews 4:16 NLT it says “We do not need to know what will happen tomorrow. We only need to know He leads us and we will find grace to help us when we need it.” I believe that grace can be a friend or someone else helping us or it can be God himself moving in our circumstance to help us. We just have to ask.

So I guess some advice would be: take one day at a time, and ask for help when you need it. You are not alone, and I pray you have faith, family, and friends who will provide the grace and love you need when things look bleak. And I pray that 2009 will be a year in which we can grow strong and develop new relationships and that research now and next year will lead to a PD treatment breakthrough that we can all benefit from.

Endure for a cure, my friends…..and until then…. keep the faith and be strong.
Judy
12/29/08

Inspired and dedicated to Judy Hensley

I wish I could form words without someone thinking I was drunk

like saying, “Yes I do think” instead of “Yes I did thunk”.

I wish I could carry a glass with cold ice without shaking

and rattling so loud it sounded like a martini I was making.

I wish I could speak loudly so others didn’t say “Quit muttering”

I wish I could snap back and say, “Well then you quit your stuttering!”

I wish I could walk without dragging my feet

and stay in step with others instead of always feeling beat.

I wish I could not take pills to make me stand straight

oh my gosh – now that would be GREAT!

I wish I could walk without dragging my feet

and almost trip when others I meet

I wish I could hold things without fear of them dropping

but am thankful I still can walk without always stopping

I wish the pain in my neck and back would disappear

But the stiffness just gets worse is what I hear

I wish brain surgery wasn’t in the future for me

but what is – is and what must be will be

I wish things were different for me

I wish the same for others with this thing called PD

but they’re not and that’s okay

for I’ve learned to be content anyway

I’ve got friends who live near and far

friends who know just who they are

some who understand and some that just care

walking with them I have learned to bear

oh how I thank God for all of it, you see

For without PD these things would not be

the friends, their concern, the many lessons learned

even when my heart’s been heavy, my hope has turned

to the One who’s never left me to walk unsteady

the One who stands faithful, true, protective and ready

oh my Jesus, how can I say how great You are

without tears falling from my face, captured in your jar

tears of fear, tears of pain

tears of weakness turning to strength in You I gain

how can I live one moment of my life

whether filled with smiles or filled with strife

I have seen purposes and plans

that could only have come through Your hands.

so I just want to say thank You

honor, praise and glory to You alone are due

I want to shout Great are You Lord Almighty

for loving, protecting, and carrying me.

Sherri