I have a new doctor. No, I didn’t dump mine and contend for another. As most of you know, mine lost his practice because of lack of funds, and cutting back on Medicare closed the doors. I can say with certainty that he was most likely the best in the west.

A patient never waited more than ten minutes, tops. His nurse was the best. He spent time with you as if you were all that mattered on his list of patients for that day. You knew he cared and could understand first hand what you were dealing with, having a similar physical fight of his own to deal with. He explained things in such a way so that you felt educated when leaving and could understand yourself what was going on inside of you. He was compassionate and so kind. And he’s not there anymore.

So, I have a new doctor. And while he was ‘okay’, the difference between the old and new was blaring. This new doctor (new to me but near retirement) was kind, smiled at the right times and all the rest, but he was not Dr. Anthony Santiago, MD. MDS. VIP. Didn’t even come close.

Today’s doctor wasn’t bad – he just wasn’t Dr. Santiago. I didn’t know him and he didn’t know me. I am quite confident that I am not going to enjoy these ‘new’ visits, unlike those I had with Dr. S- who always had a smile, a laugh, a genuine concern for his patients. And, I NEVER had to strip down to my skivvies for an exam. What is up with that?

Survey: How common is that (for PD patient exams)? I’ve been to three other neurologists and have never had to do that. (Leave a comment, please.) Weird.

I came home and cried. I just want Dr. Santiago back but I know I have to face this. Problem is – I don’t want to.

Meanwhile, another reason I want my doctor back is for another situation the doctors are looking at. They’re wondering whether the lupus that they thought was a brain tumor and then MS and then ruled it all out by mere lack of evidence and then thought perhaps it was the PD starting in my early 30’s instead of 2004 – well now they’re back to looking at lupus since my ANA is off the charts. I’m curious, however, to find out what it is and if that’s what’s causing so much of the pain. Time will tell.

Until then, we are promised today only and I am so grateful I know Jesus and the unrelenting fact that we don’t go through anything alone.

A friend so timely emailed a link to a beautiful song today. It was waiting in my inbox when I arrived home after my appointment. I clicked on it and listened. God is sovereign and knows just what we need, just when we need it. I hope you’ll listen to it and be as blessed.

http://www.youtube.com/watch?v=diUhGip85U8

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?

The following is a letter I received this past week and with permission, I share it with you and hope it touches you as it did me…

I lost a friend to cancer last week. I wanted to share this with you. Everytime someone “passess over,” I am reminded of why we are here in this world…

Not everyone can empathize with what it’s like to have or be a caregiver for someone with a chronic illness; but sadly many can. Whether you lose a friend to or cared for someone with an illness that
had no cure, the feeling of helpless is the same. Your challenge was to make each day for the sick person one of new hope. Saying “time heals” gives little comfort, but being able to hold your head high and say, “I did all that I could,” is a real blessing, although it may not seem that way right now.

The challenge now is for the church to help the caregiver, family member or friend through this difficult transition period. As the Bible says in Galations 6:9: “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”

Chronic or terminal illnesses can be thought of as the little bit of foothold God allows Satan to have in this life. But in the end, Christ and his followers are the winners. Remember that the Father
had a Son whose whole life was to show us how to live in a sinful world. And I don’t believe it was any easier for God to give up His loved one than it is for us today.

A few years ago a close friend of mine lost his wife to Parkinson’s disease. We went out to lunch shortly after her death, and I could tell he wanted to talk. “With tears in his eyes he asked, “What if
there is no Heaven?” After a few seconds of silence, I replied with another question, “But what if there is?”

We must live each day as if it is our last, because it may well be. The debt for Satan’s presence in this world has already been paid so that we may spend eternity where there will be no more illnesses, no more death, no fear, and no tears. And that expression of love was the best gift to the world yesterday – today – and tomorrow.

Peggy Willocks

Peggy, who has YOPD, is the artist that painted the side of this barn!  You can read more about Peggy here :  An Interview with Peggy Willocks

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

Judy wrote this tribute to her mom in the wee hours of the morning, this morning. Her mom is currently resting at home, with assistance from Hospice. The family can use your prayers. Judy can use your encouragement. If you don’t have her email, please leave a comment of email me if you would like to contact her.

We love you Judy – and your mom, too.

Mom, you should know that I don’t do well at poems,

so i’ve asked for a little assistance

Sherri is really good at ‘em and she loves ya too,

So don’t be givin’ me any resistance.

**

Sit back and enjoy, this one’s all about you – my mom

And I better not be seein’ any rolling eyes.

The world needs to know how much I love you,

but to you , it shouldn’t come as any surprise.

**
My name is Judy and I’ve been especially blessed,

A truth that will not be hard to see

Rebecca Ann Chase Good is my mother -

One of God’s greatest gifts to me.

**
Because I am her daughter,

There are times I just can’t believe -

I’ve had 47 years to know and love my brave mom,

the last seven years have been hard watching you fight this disease.

**
Yes, my mom has given it her all facing cancer,

the big C these last – long, seven years

this time has been the worst -endless tests, treatments and the hospitals -

with each new scheduled scan, we’ve confronted our inner fears.

**
But my mom has fought it, oh – so very well

and kicked cancer in the butt every time,

She’s gotten back up with each instance and gone on with her life

and she has never, nor will you ever, hear her whine.

**
Mom, I wish I could thank you enough

for being a great mother, friend and mentor as such,

if I thanked you a million times – it might get old

and you might just hold up your hand and say ‘Hush up’!

**
This is my attempt to express some things

in this special poem, honoring you by name.

To let you and so many others know,

Exactly what it is that I want to proclaim.

**
The proclamation is this – You’re the very best woman for these jobs:

Judy and Karen’s mother, Joey and Carol’s grandma, it’s true

Bill and Steve’s mother-in-law, you’ve had a lot to do …

and Jimmy’s love for more than 50 years – that’s you.

**
Mom – I’ll mention a few things about you that make me smile -

Many others have told me why you are the best, bar none.

I just love hearing the things they admire the most about you

and when those reasons rhyme,it is really most awesome!

**
I could probably write a book

about how special mom is to me.

And this may seem a bit long

but please be patient and do me a favor, keep on to the end and read!

**
Mom, I don’t know how many people would agree

but I’m telling you straight up, here and now -

YOU’re a woman of great beauty, who knows her place in this world:

taking care of everyone, working, volunteering ..I can only say WOW!

**
These are things I need to thank you for, my dear mom

I’m getting tired so they may not really rhyme.

But I’ll finish it for you and I’ll finish it well,

and for you ,,,,I hope it will read fine!

**
Mom, thank you for……..

all of those great birthday parties

and presents I could have gone on living without

a kind word, a big kiss, an awesome hug –

you always gave, and always gave your all without a doubt

**
Vacations at the beach, going with me to women’s conferences,

Also supporting those of us with Parky’s disease.

It was always so fun when we got together with Karen and shopped n ate n stayed out late,

And when it was necessary , you called ‘Time-out’ in order to keep up the peace.

**
You’ve lived your life with a priority to please the LORD

To so many you are an example of HIS faithfulness and love

And for me you’ve been a great taxi driver, optimist, encourager and more

These are just a few things about you I’ve adored.

**
You’ve been a shoulder that I could cry on

so many times your love for me you have told .

Endless hugs and kisses you’ve given

None of these gifts you gave me ever got old.

**
You have been my very best friend,

The one who led me to the LORD

You taught me much and didn’t have any ‘PhD’ behind your name

Because of you, I am glad I am me –and look where all I’ve soared.

**
I am proud, to be called your girl

And you’ve made me proud, like when you got on a plane

You’ve given me discipline, you’ve given me love, -

How can I live and not want to do the very same?.

**
You’ve been an example EVERYDAY of God’s great love for others

And I know you love me when you still say “call me when you get home.”

I wouldn’t have it any other way, no way – no how
I’m glad God made you – your spirit, your heart, and your bone.

**
You have a big heart so full of mercy

It’s wrapped in grace, and sprinkled with love

It’s extended forgiveness so many times

And it is all so special ’cause it’s from God’s hands above.

**
For all of these things I say thank you, mom

and for many others that don’t come to mind at this moment,

How can I ever thank you enough?

Living my life in honor to God I hope will be my sincere and grateful testament.

**
Your love is a gift I will forever cherish,

and hope to pass along in many special ways -

to my daughter in love as a living legacy,

of just how good God has been to me every day.

**
God knit me in your womb and entrusted to you my life,

you and dad provided everything I ever needed, I’m so glad

What a job you’ve done! I want to tell everyone,

Can you hear me shout loud “What a WONDERFUL MOM I have had!”

**
It’s because of you, I’ve never been more loved,

The honor of being your daughter is one reason my heart sings

I’ve never felt so good or felt so safe

As when I’ve been under the shadow of your wings.

**
Mom, when your heavenly father calls you home,

This promise I make to you -

I will be smiling when I think about you huggin’ your mom,

and I’ll long for the day when I can do the same with you.

**
The day is drawing nearer for us, I can say with certainty

we will spend eternity together in a perfect, glorious world without sin,

so ‘til we’re together again, I’ll be lovin’ you even more,

My mom forever and my loving friend

**
Love, Judy – forever your girl.

I am excited to introduce you to Lori Saviers, another member of “The Regulars”.  You’ll remember that I was able to meet Strong Feather Eileen of the Regulars , and recently I have had the opportunity to chat with Lori on Facebook. I asked her if she would let me interview her so that we could all get to know more about her and share here with you on Parkinson’s Journey.

Lori lives in Columbus, Ohio, and tells how she came to be involved with the Regulars.   Believe it or not, she actually met them on a mountain!

I would like to thank her for graciously allowing me an interview.   I hope you enjoy gettingto know another person who is making a difference as one of the Regulars!  Be sure to take note of Lori’s nickname as one the Regulars… it’s cool!

Enjoy – Judy

Editor’s note:  I was going to publish this in parts due to its length.  I decided to leave that up to you, the reader, if you’ve like to read it in parts and come back to it.  However, let me say that after reading it in its entirety, you won’t want to stop reading until you’ve read the complete interview.

This is one of the best that we’ve presented.  You will truly be inspired.  Let us know if we were right.

============================================================================================================================

Welcome to Parkinson’s Journey, Lori!  Have you climbed mountains before going to Mount Kilimanjaro this summer? How long have you done this and how did you become interested in it?

One of my dearest friends (Margie) moved to the city of Mt. Shasta CA in the early 90’s. If you’ve never seen Mt. Shasta it is one of the most beautiful mountains, ever (aren’t they all ). Anyway, we climbed “around”, hiking in the area for years, and one day I finally said – “Hey! I think I’d like to go to the top! She was very encouraging, although had no interest in joining me. (She has asthma, which gets really bad around 9000 ft). I didn’t make it that first time — only got to 10,500 ft (Shasta is 14,179).

I saw Mt Shasta earlier this year as Sherri and I traveled from Oregon to Northern CA–it was breathtaking!  A truly magnificent sight!  So, how do you train for your climbs?

Mainly – as much hiking as I can. For my second climb of Shasta, I started in January, on a treadmill – every day.  I increased the incline, the time, and the weight in my backpack until I was at 15% incline for 90 minutes with 30 lbs. I decreased the speed as I increased the other variables – from 3.5 mph to about 2.0 mph. This process took 6 months.  I was at maximum for about 6 weeks before the climb.

Now I try to mix it up more. I wear a weight vest (max 40 lbs, I usually use only about 25 at the most) and hike, backpack, and do spinning classes. Just about anything cardio and for building leg muscle.

Which climb is most memorable?

Really, Mt. Hood! There was the blizzard, the 2nd attempt, the fact that actual summit day the weather was perfect – and, meeting the Regulars on top! (see below )

That sounds exciting to hear about!  Have you ever had a climb that was disappointing?

That first climb of Shasta. I really had no idea what to expect. I went with a climbing buddy and I had to give in from exhaustion at 10.5K feet. We ended up bivying up there around 9800 ft and he did summit the next day, leaving camp around 4 am.

During his climb, I went all the way back to the trailhead with most of the camp, drove the car down the mountain into the town and got Burger King, and hiked back up to camp and waited for him. I told him he’d better be back by 4 pm ’cause I was NOT going to call his parents (solo mountaineering really isn’t a good idea).

So I sat there in a camp empty expect for the tent, his sleeping bag and a bottle of water. And reflected on my failure while I waited. It was very motivating for the training for the next climb. (He had chicken nuggets when he made it back. I couldn’t have been happier to see anyone).

I can imagine!  In one of Enzo’s blog’s he talks about you meeting two of the Regulars on a climb in 2008…tell me about it in your words.

Climbing Hood with a partner.  We were driven back on July 4 by the same blizzard that sidelined Enzo and most of the Regulars. We had planned a couple of extra days in case of weather, so we went down and dried out all our gear and went back up the next day.

We bivied at around 9000 ft (rather than making the climb in one day all the way from the bottom), so we didn’t even have to start early – a normal alpine start is somewhere around 11 pm – 2 am.  We hung out and started climbing around 5 am. A few hours into the climb, we ran across Regulars Brett and Troy (who has Early Onset Parkinson’s Disease [EOPD]). My climbing partner is a nurse so was interested in talking with Troy about his Parkinson’s Disease (PD). I was mostly interested in my granola bar .  Anyway, we got to the summit and we were the only two up there.

A few minutes after we arrived, here comes Brett and Troy! Well, they stared unrolling these Alzheimer’s  Association and Michael J Fox Foundation (MJFF) banners and were trying to take pictures. By this time I ’sort of’ got what they were doing.

It was clear that the banners were too large for one to hold while the other took photos. So, I offered to take the photos. While I was not climbing Mt. Hood WITH the Regulars – I was actually on Hood at the same time and took the only photos that remain of that summit (in some mishap, all of Brett and Troy’s photos/film were lost – I took a few with my own camera).

Anyway, had their photos survived, that probably would have been the end of it. BUT – I was interested in the shots and kept going to the Regulars website to look for them. I read more and more, and finally emailed “the webmaster” (who turned out to be Enzo) and we started up a dialogue.

So, that’s how I came to be a part of the Regulars and why Enzo calls me “Premonition”. He says I was my own Premonition – being a part of the team even before I knew what it was.

That is such a cool story!  Do you have any family or friends with Parkinson’s disease or Alzheimer’s disease (AD)?

A couple. A man at our church has PD, he is probably the person I am around on the most regular basis (he’s in church most Sundays). I never knew him before PD, so I can only imagine. His wife (who I’m on some teams with at church) tells me he used to run marathons. He does have difficulty communicating, so you can imagine that I have a hard time talking with him. I can’t tell if he is struggling, in pain, or only finding it hard to respond. I wish I knew how better to interact with him.

I have another friend – a former co-worker – who has EOPD (Early Onset Parkinson’s Disease). She is about our age (maybe a few years older) and diagnosed when she was about 40. She was a huge cyclist (like, 100-mile rides every weekend) and just so active and athletic. She is too determined of a person to lie down and give in to PD, but I know she’s pissed off. I know I would be. I’m sure you are.

My mom’s brother’s wife (my aunt by marriage) died OF Alzheimer’s, WITH Parkinson’s. I guess it is not uncommon for people to suffer from both. Her AD made her quite unpleasant, and her PD was very painful and debilitating. It was a devastating experience for my uncle. He died a few years after she did.

My grandmother died of complications of Alzheimer’s. She lived with my parents the last 9 months of her life after my Grandpa died. Honestly, she was sort of a gruff and demanding woman. In her declining time, she became childlike and very sweet. It really is a testament to the differences in the ways these diseases manifest. Grandma died a few days after her 90th birthday. I think she was happy with her life. She missed my Grandpa terribly. I’m happy they are together again.

You mentioned working.  What kind of job do you have?

I’m in purchasing in the chemical industry. I’ve been in this industry for most of my career, starting out in purchasing, then going into sales for a long time. Now I’m back in purchasing – smarter I hope! I sure wish I had more time off!

I worked in the chemical industry, too!  I have to admit those people in purchasing could make nightmares for us in the lab, but overall they are all right to know – most days, anyway!  So – what do you like to do to unwind?

I love to garden, but don’t do it as much as I’d like. I obviously like climbing, and everything that goes along with it – hiking, backpacking, and just being outdoors. We live on 6 acres and have quite a bit of the property maintained in a “natural” state.

We are a National Wildlife Federation certified wildlife habitat. We have so many birds and critters and butterflies – it is wonderful. A friend started keeping bees on our property this year. I love it.

My other big love is libraries. I’ve always wanted to be a librarian, and in fact completed most of my coursework for my masters in library and information science a few years ago. It’s just hard to step out of a more lucrative career to work in that field. I hope to retire early from my present work and actually work in a library for a few years.

You and Sherri would hit it off in no time.  She loves gardening and books!

Editor’s note:  Yeah!

So who has been the most influential person in your life?

Teachers.  Several of them. My education has allowed me to do so many things that I would never have dreamed possible. My parents were always very encouraging, but neither of them went to college so they were, I guess, sort of inhibited about encouraging me. Really, they just didn’t have the experience to share.

So, I had all these great teachers, starting in the 2nd grade…junior high…high school…and a few special professors in college who really helped me to understand what I could do. It’s a wonderful circle, because I truly think that I was the sort of kid that teachers ‘like’ to have for a student.  I was pretty much willing to do whatever they said! And I learned! Very gratifying for the teachers, and obviously they shaped my life to a large extent.

The best part is that when I am with my parents, I still feel like I’m 12 sometimes. They look at me with shining eyes; and I know they are proud. It doesn’t get any better than that.

I can agree with you wholeheartedly on the great teachers I had, too!  Tell me what it’s like when you get to stand on the summit of a mountain?

More humbling than you might think. I think it is easy to imagine being “victorious”.  You know, ‘Yeah! I came, I conquered!’  But it’s really not like that. You get up there and you are just in awe. It is SO beautiful. You are SO tired.  And a bit anxious…you still have to get down! Mostly, I just think I feel gratitude. So very grateful that this experience can be a part of my life. Wow. Little ‘ol me. It’s humbling.

Okay, Lori – I just have to know.  What do you think of ‘da Coat?

Now, I am very serious about this. I really, really like ‘da Coat. When I first saw it (online), I think I had the reaction many people probably have – Yow! ‘Ya gotta be kidding!  But over the time leading up to the climb, I began to understand the meaning of ‘da Coat, and how it could serve as sort of a metaphor for just the outrageous action that needs to happen to put an end to PD. And when I met ‘da Coat in person, let me tell you.

It was at Horombo Hut, the last real overnight hut on the mountain. We were in the hut, and I asked Eileen if I could see it. She had sort of been keeping it under wraps, to sort of “unveil” on the summit. Well, it was cold in that hut, I will say, but the warmth that I felt when I put on the coat was not from the fact that it really is soft and cuddly.

Judy, I could feel the love in that coat, I could feel the energy of all of the people who’ve worn it. I could feel your sweet self and the power you create by traveling all over the world in the guise of that coat. That coat is magic, girl. It is special. As are you.

Now I know why I like you so much! Thank you Lori, for that kind compliment.

When you tell someone about the Regulars…what question do people ask you most about the mission/the team?

Mostly technical questions really, about the climbs, and climbing in general. People do ask my why I’m doing this. After all, I can, have, and probably will climb other mountains not related to this cause. But this means so much more – it connects me with a purpose that is so much higher than my own personal entertainment. I feel like maybe, in a small way, I could make a difference. In the words of a song I really love, “I’m ready to use the gifts I’ve been given, to make this world a better place to live in.” This is something I CAN do. So I’m doing it!

You may not know how much those of us living with PD and AD appreciate your efforts, but we do.  Now tell me one funny thing about Enzo, and one other person that climbed Mt. Kilimanjaro.

I hope this doesn’t fall into the category of “you had to be there”, but honestly this was so crazy-funny.

When we all arrived in Africa, one of Jen’s bags didn’t make it. Unfortunately, we had to go off on the safari without it being recovered. It had her climbing gear and some of her filming supplies, so it was critical for the climb.

During the safari, she was spending a bunch of time using Enzo’s cell phone to call the insurance company, the travel agent, the tour operator, etc. So there we were, on the safari. Enzo’s in the vehicle I’m in and Jen’s in the other.

Just as we were watching the lion and lioness make a kill (probably THE most exciting thing on the safari…they were just outside our vehicle, about 7-8 feet away), Enzo’s phone rings. He answers it, whispering.  When he realizes it is someone calling about her luggage, he says in his best “secretary” voice:

“I’m sorry; Jen can’t come to the phone right now. She is in another Land Rover and there is a lion eating right outside, and she can’t come out. Can she call you back?”

Seriously, I thought Eric and I were going to die laughing. Right there.

Next is…Jay. He is so hilarious. He arrived a day late, having missed his first flight. So we picked him up after day one of the safari. I’d never met Jay. I’d only seen photos of him on The Regulars site and heard a bit about him. So, there is a photo of him doing some rock climbing, and he’s this big, strong, athletic-looking guy. I really thought he was a REAL climber (as opposed to me).

So, he gets in the truck and everyone starts talking. I don’t remember exactly what I said, but probably something about him being a climber and he says (paraphrased), “Me? I’m no climber! The only thing I ever climbed were the steps in Philadelphia that Rocky climbed in the movie! And I was out of breath at the top!”

I really thought he was joking – took him a few minutes to convince me. Well, climber or no climber, Jaydragged himself to the top of Kili. Whether he was a climber or not when he arrived in Africa was irrelevant. He’s a climber now. 

Briefly describe your impression of the climb up Kili – the most impressive thing, or the most memorable.  You pick.

The most impressive thing about Kili was its size. Hands down. Every single mountain I’ve been on just seems so incredibly massive – even Hood, which really isn’t all that big.

When you are on a mountain, you look across a vista and say — hey! I think I’ll go over there to “that ledge”. When you start walking you realize there is a gully the size of a football stadium between you and the ledge, and the ledge is 3 miles away. Take that feeling and multiply by 10 and you get Kilimanjaro.

You know that little bit of white (snow) you can see in most of the photos – that is on the left, as we approached the mountain?  Well, that is not snow.  It is ice. It is the glacier. And when you get up on top and are walking around the rim, you are to the inside of that ice. And guess what — there is a gully the size of Memphis between you and that ice and it looks like it is a couple of miles away.  From the bottom, it seems to be snow that you might even be walking on. Not. It’s just SO massive. I think a person could walk for their entire life and never see that entire mountain. Remember, we walked up the “tourist route” . THAT is supposedly the easy way!

Tell me about the picture of someone you took, with you at the top – where you had the drawing to pick a winner.

I received a donation on my MJFF page from a tmanogue@xxxxx. Well, I ‘knew’ a Tom Manogue, but he died in 2005 of pancreatic cancer. I worked with Tom; he was the QA manager at our plant in Wisconsin. When I saw the donation, it really spooked me. I thought about it for a few days, asked a few people if Tom had any sons (no…he had only daughters, which is what I remembered).

So I sent an email to the donor’s email address, thanking them for their donation, saying that I had known Tom, and asking if they were somehow connected to Tom. Well, the response was from Tom’s wife. Her brother, who also works at the plant, told her the info about my climb, and she was moved to a very generous donation to the MJFF. She told me that her favorite uncle had died from PD, and that he was a strong man who used to run Clydesdales in competition. She said that she was heartbroken as she watched him succumb to PD. She told me that she knew Tom would have supported me, wished me luck and told me that she knew that “Tom would be waiting for me at the top.”

There were about 160 individual donors to the two causes, all of whom were entered into the drawing. The editor of my local paper drew the winner. When he read out Tom’s name everyone there was confused as it slowly dawned on us what had happened. Because of fate or luck, or something else I think I will call God, a man who left his physical body in 2005 would now be climbing Mt. Kilimanjaro. Yes, his wife got me a digital photo and I had the banner made and carried it to the top. Enzo and Jen held the banner up while we took photos of Tom’s image under the Uhuru Peak sign. Tom climbed Mt. Kilimanjaro. Take that, Pancreatic Cancer!

That is so awesome!

Okay, lastly, what would you tell someone to help them to decide to participate in the event Enzo is planning for Mt. Washington in 2010?  Can anyone participate?

I will steal Enzo’s words (he’s so good at it:). This is an opportunity for your OWN personal Everest!  Not everyone could climb Kili, and most people probably wouldn’t enjoy the undertaking of most of the other mountains on the list. But guess what? Mt. Washington is a real, honest-to-goodness respected mountain, and if you can walk, then you can climb it! Whether you go up a path, a trail, or the road, YOU TOO can summit Mt. Washington and be a part of this effort. This is YOUR opportunity to make a difference. That is exactly the point of the Mt. Washington climb; anyone can participate. And everyone should. You are going to be there, right Judy?

I hope to!  And I hope some of you reading this might want to be part of an army of change, and experience the power of, “Together is one!”

Thank you Lori for the awesome interview!

You, our readers, can find out more about the Regulars at www.theRegulars.org and on Facebook Groups at: 10 Mountains 10 Years; also at their blog site at 10mountains10years.  And, don’t forget to contact Enzo through one of the websites about joining the Mt. Washington climb!

You can also find Lori on Facebook:  Lori Pulley Saviers.

Thanks for joining us!

If you happened to have spent much time in church, you may be familiar with the song called “Love Lifted Me” . ….the lyrics start out saying: “I was sinking deep in sin, far from the peaceful shore, very deeply stained within, seeking to rise no more…but the Master of the Sea heard my despairing cry, and from the water lifted me… now safe am I! Love lifted me, love lifted me….when nothing else could help….Love …Lifted……Me!”

Just a few mornings ago I was contemplating some of the recent circumstances in my life, and thought about how life is like riding in a raft on a river and then the song above popped in my brain as well. We carry on most days riding easily on the ebb and flow of the water as we try to stay adrift in this journey called life or our destination may be just to reach a peaceful shore. Some days life is like floating in a raft that is right in the middle of a raging, mighty river. On other days we can drift along easily and be able to manipulate the raft to the shore, or we may encounter raging rapids that threatened to overwhelm our raft and threaten the completion of our journey. We know not what is beyond each turn in the river.

If you are a wise raft guide, you will have learned from navigating previous rapids and by watching others as they go before and experience the swift and changing water. You might even become confident and brag to others passing by how well you did going down some heavy and swift waters. You might be stronger from previous runs in the river where the going was rough but you made it through. You might even believe you can make it through anything alone.

But then you find yourself heading into the same turbulence you saw others in and thought to yourself “I ‘ll be able to handle that rough water without help from anyone else!” Isn’t it amazing how different it looks like from the shore than when you are surrounded by whitecaps???? You learn what life has in store for you might be overwhelming and that your raft is not as big and stable as you’d hoped it would be.

You learn how strong you need to be and just how weak you can be at times on the river of life. Paddling becomes more efficient with prayer and guidance from the One who made the river and who knows what is in store for us around each bend. He offers safety, security, and love on the appointed shore for us. He may place someone on the shore or even in our raft to encourage us to not give up; to paddler harder; and when your own strength is gone, He will lovingly provide His own to you.

He can do these things because He made the river, He intends for you to grow stronger from your journey, and He promises to never leave you if you’ll just turn over the rudder to Him. He knows your every circumstance; He smiles at your dreams; He shares your pain; He promises to always be a faithful guide; He will provide strength when you are weak; and He promises a most peaceful shore to finally arrive at some day! He gives you HOPE to carry on!

All this is available to me, to you, to anyone who believes that the Master of Creation is in control of our journey, and wants to see us face to face on the final shore where He can say “Well done…come rest, feast, sing and find peace in this place I have made especially for those who have put their trust in Me.” Then maybe, just maybe…we’ll start to know what these rapids on this journey are for….we’ll realize just how sweet the journey was…and we’ll comprehend a little more of how much His love can lift us and bring us through the roughest , the deepest, and the most difficult circumstance or rapids we are going through.

So when you feel you are ‘sinking’ and you feel you won’t ‘rise again’… know that he will hear your ‘despairing cry’ …and His love will lift you up and guide you on to the peaceful shore!

Next time you head out on the water….don’t forget your life jacket and paddle (His WORD and your direct line to Him—prayer). Push off toward the peaceful shore and while you paddle along, hum, whistle or sing a song of thanks. And keep hold of this faithful reminder: “when nothing else will help….Love (it will have) lifted me!”

See ya on the river!

Love,

Judy

I want to welcome Peggy Willocks to Parkinson’s Journey! When I met Peggy, I was back visiting my blog partner and good friend, Judy Hensley. What a treat! A woman under little monster’s curse living her life as blessed! She was so positive, despite the long day she had that day and welcomed us into her home – and heart. Thank you Peggy for sharing a part of you with us, today.

Sherri –

So, you’ve got PD, too. Can you share a bit of how you were diagnosed, your first symptoms, or what led you to the doctor’s office?

Peggy –

The first sign came with a “twitch” in my left-hand ring finger. Then the whole hand had a slight tremor, but only at rest. It wasn’t a hard shake, just a slight tremor. I began to type the wrong letters with my left hand, and it was slower to move. (like I was waving in slow motion). But I still didn’t think much about it, until one evening our family was walking at this trail. My oldest daughter (who was a nursing student at the time) asked me, “Mom, you look like you’ve had a stroke. Your left arm doesn’t swing.”

Reality check; my arm wasn’t swinging. I had a friend who had been a librarian at our local high school who had been dx with PD for about 5 years. I began to “watch” my body more carefully and compared my movements with hers. I was, of course, referred by my doctor to see a neurologist. And I told him what I thought I had before he told me. That was 15 years ago. Even then I was in denial. I asked him if I could see a Movement Disorder Specialist, and he complied. I went to Emory in Atlanta, and she gave me the same news.

Sherri –

How has your view of having PD differed, if any, from when you were first diagnosed?

Peggy –

It’s like night and day. I was absolutely devastated when I was first dx’d. I had gone back to school after my 3 children were born, had taught only 7 years, and had landed the principal job just 3 years earlier. I broke down trying to keep the same course of life. I was hospitalized with what the neurologist called a “Parkinson’s crisis.” That was on a Saturday morning, and I never went back to school. It took a good year to control my symptoms (depression will kill you!) Then I started wanting to know everything about this thief.

Sherri –

What was your greatest fear then and what would you consider it to be today?

Peggy –

My greatest fear was that I would not get to see grandchildren. And if I lived that long, I feared I would never get to do fun things with them because of PD. I would picture myself in a wheelchair and even used to imagine my daughter forcing her children to “go talk to nana.”

But since I have learned that “Parkinson’s isn’t a DEATH sentence; it’s a LIFE sentence.” I have watched 3 strong women be torn down by advanced PD – I know what is to come. I guess that’s my greatest fear today. They went out of this world with broken bodies, but much greater spirits.

Sherri –

You have been involved in clinical studies. Can you talk about one and why you decided to do it? Would you do any more?

Peggy -

For two years after I went on disability, my symptoms were escalating at a rapid speed. We tried every combination of meds we could find. At a visit to see the MDS in Atlanta, she told me there was a new surgery being tested; it was deep brain stimulation. But she warned me that there was a long waiting list to be in that trial. I went home thinking I would never have a chance of getting in.

Then one morning I received a call from the research nurse at Emory. I got real excited! Then she explained that this was another study, one where cells would be implanted in my brain. I told her if it had any connection with aborted fetuses, I would not participate. She explained that this was retinal cells from a donor eye from an eye bank. Retinal cells produce dopamine. So she scheduled me a date to come.

There was a lot of testing with the screening. I was afraid that I wasn’t bad enough. But I qualified and became the second person in the world to have this surgery. It has been 8 years, and the endpoints were not met in Phase II (I was in Phase I), so the study was stopped. However, they are following the 6 people in Phase I for life.

Sherri –

What has been your biggest hurdle?

Peggy -

That would be making others understand about this disease. It is so hard for others (family included) to understand how one minute you can do about anything, and the next minute you’re like an invalid. (It’s even difficult for me to understand/)

Sherri –

What has been your greatest help with living with PD?

Peggy -

PWP [people with Parkinson’s] support by far! If you stay isolated, you go deeper into that hole of depression. Who would have thought in my simple search for answers to a debilitating disease, that I received my greatest blessings? And my faith also has sustained me. These hundreds of people that I know (or they know me) weren’t there just by chance; I am convinced it’s a God thing.

Sherri -

Have you found things more difficult to do? How do you handle that?

Peggy -

Yes. I am much more emotional; the slightest thing can set me into spin of anxiety. I have been on an antidepressant since my diagnosis. I try to avoid situations where I know how I may react. I keep saying to myself: “It’s not you; it’s the medication.”

I also am easily fatigued. Then when I should be sleeping, I have insomnia. It’s a vicious cycle.

Sherri –

Judy took me by the barn, on which you painted a beautiful mural. That has been since your diagnosis, correct? How did that come about and how long did it take?

Peggy -

Yes, I did that a couple of years ago. There is a family that lives in a trailer behind that barn. One day the lady living there told me, “I wish that barn wasn’t there. Every time I come on my front porch, I have to look at the back of that old barn.”

Don’t ask me why, but I felt like I had to paint that barn. I tried to do a little every morning. It was a hot summer. But after holding my arms up to paint for about 3 months, I realized something was wrong. I had surgery on my cervical spine (neck) twice for herniations. There’s a little more to finish the entire back of the barn – I don’t know if I’ll ever find the time. But it has made a lot of people smile (especially that lady in the trailer).

Sherri –

I know you are part of a support group. What would you say are the greatest benefits of being plugged into a group?

Peggy -

A support group is just that – another arm of support. And nothing makes you feel better than helping someone. People come looking for answers – what doctor should I see? What medicines should I take? How do you cope? It fuels my fire to help others – it’s a lifeline for many of those folks.

Sherri –

Rumor has it that you met/knew MJFox personally. How did that come about?

Peggy -

When I first went online, I connected with an online support group, People Living With Parkinson’s (PLWP). One of the co-founders lives about 2 hours from me, so I drove down and spent a day with her. She said she had met Michael J. Fox and we heard he was going to be at a meeting in Washington, DC. So I went with a group from PLWP to hear him talk at a forum sponsored by the Parkinson’s Action Network (PAN). Mike came in and sat at a table next to ours. He started talking about how he kept his PD hidden from the public for 7 years. Then he said he had learned so much about living with PD from some online friends, then he named the two co-founders of PLWP. I was so proud to be sitting at the same table with these new friends. Then he said, “I have learned a lot about this disease and how to cope by chatting and reading online . . . and one is pegleg.” My jaw dropped! I don’t think I heard another word that evening. Mike went to every table and talked with everyone that night. When he got to me we hugged, and I asked if he meant me. He smiled and said, “Yep. I don’t know too many pegleg’s.” I have seen him at many events after this. It’s just a casual wave and acknowledgement, but it derives home how careful you should be writing and talking online. You never know who is listening or reading.

Sherri –

What has been your greatest obstacle since having PD?

I have really neglected my family at times in my quest to try to find a cure or help cope with PD. Making them understand the connections between people who know what it’s like cannot be explained, and I wouldn’t wish this on anyone.

Sherri –

What has been the greatest blessing of having PD?

As I said earlier, it has been the people and doors that have opened. I would have never had the opportunities I have had if I didn’t have PD. So I guess I am saying having Parkinson’s has been my blessing – my chance to give back to those suffering.

Sherri –

You said you were a school principal. What was the hardest part of that job and what was the greatest joy?

Peggy –

The hardest part was keeping everybody happy. If it wasn’t the teachers complaining, it was the parents breathing down your neck. I had nothing to hide in the way I ran the school. Whatever problem came up, all you had to do to solve it was answer one question: Was it best for the students?

The greatest joy was making a difference in a child’s life. And I know I did because many, many have told me so – still today, 10 years later.

I know that to be true for a fact, having been in a restaurant for dinner with Peggy and having a former student come over and dote on her.

Sherri –

What do you do to stay active?

Peggy –

I like to swim –used to like biking, but can’t keep it balanced now. I am involved in advocacy work, local support group, church, and make presentations everywhere. I don’t have any spare time to just relax.

Sherri –

If you could thank one person in your life that has been a support/example for you during your journey with this disease, who would that be and why?

Peggy -

Pat Messimer had been diagnosed with Parkinson’s three years when we met. I had worked with her husband, also a principal. Pat could barely speak at first, and totally lost her voice the last year. She passed away only five years after diagnosis – they called it a Parkinson’s plus syndrome, Multiple System Atrophy. I befriended her because nobody understood her. Another friend with PD usually went with me to visit. Here were three ladies who were in their prime of life, yet they were suffering from a debilitating disease.

I also vicariously befriended a lady in a similar situation, Milly Kondracke. I met Mort and Milly the same night that Mike said he knew me. I told Milly how she reminded me of my friend in TN. We started an email relationship that lasted until she couldn’t sit at the computer any more. Then her husband, Mort and I continued to email. We continue to be friends today. Morton Kondracke is a Fox News contributor, the Executive Editor of Roll Call, a popular newspaper in Washington, DC, and author of the best-seller, Saving Milly.

Pat Messimer never wavered in her faith in God. She and Milly taught me that you can make the best of any situation if you have to – ANY situation. They both died fighting, in very different ways, but they went out with grace. They are my heroes/heroines.

Sherri –

Any other comments/areas of interest?

Peggy –

In 2003 I received an award through PAN for being a good advocate in my state, the Lewis Fishman Award. In 2005, I received the Milly Award, right after Milly died, for outstanding advocacy. I was the first of two PD patients to be on PAN’s board. I resigned just this past year. I worked with that organization nearly a decade. I still work with various orgs, mostly Parkinson’s Disease Foundation, located in New York City. I have worked with several pharmaceutical companies, also, and am a charter member of the Parkinson’s Pipeline Project, a grassroots group of patients who are working with a variety of people in speeding up the treatment approval process. Oh, in 1997 – one year before I had to go on disability, I was named TN Principal of the Year.

I want to thank Peggy for her time to respond to my interview questions. What an example of grace and beauty. I hope this was encouraging to all who read this and remember that PD is not a death sentence but a LIFE sentence. Live it as full as you are able… today.

Dear Diary,

I wish I were writing to you as I did when I was a young. I wish I were telling you about the test I passed in chemistry, much to my surprise (not to mention Mr. Elemince’s look when he handed it back to me with raised eyebrows and a quirky smile).

I wish I was telling you about the part I got in the school play, only to have gotten a phone call from Mrs. Alwazdrumadic, the drama teacher, telling me that they had made a mistake and were giving the part to Rosie Mustgiterway. You and I both know it was because her dad was the mayor. I wish I were writing about how mad I was and prayed that the crickets in scene three would get loose and crawl up her britches.

I even wish I were telling you about my sixth grade crush on Brent Thinksheesallthat and how he looked at me that one fine day and smiled. I wish I could forget it was Mae Missgetsallthat, walking right behind me, that he was smiling at instead.

Instead, I’m writing to you about the pain from today and wishing I was that little girl once again. However, you did once remind me, in the pages of my past, that it could always be worse.

Did you know that I dream of putting on my tennis shoes, tying the laces and going for a run and being FloJo? Instead, I have given those tennis shoes away. Slip-ons are the footwear of choice, now. Well, I suppose not necessarily a choice, but a necessity. My fingers just do not want to move the way they once did, when I was able to tie a hook to a fishing line or crochet a row on an afghan. Okay, well, so crocheting was a little boring but you can see how things have changed – look at my writing! It’s horrific! However, nowadays there’s this thing called a laptop. No, it’s not a breakfast in bed serving tray, but types as you push little buttons and strives to make you, my journal book, obsolete. It could always be worse – but it isn’t.  You’re still here and, so am I.

I also dream of going for a walk and not stumbling, tripping or fearing a fall. Instead, I take short steps, small steps, steps that slow others down. One foot drags, the other mimicking every now and then. To walk – just walk – without fear. However, it could be much worse and even though they’re short steps, small steps, steps that slow others down, they seem to be the perfect steps when Boo and I go for a walk. It could always be worse, but it isn’t.

My mind is such chaos at times that I find myself dreaming of clarity, where thoughts are able to process, one at a time. Instead, they can be so mixed up that I want to close my eyes and wish those thoughts away and I fear I often near the brink of being crazy. However, I still can write and think clearly (at times!) and it could always be worse – I actually could be crazy but I’m not (or am I?)!

I dream of smelling a rose, a skunk, a cow farm, the sea. Instead, there are no smells, there are no tastes and life often seems rather bland in the sensory area of my life. However, it could always be worse – I could smell the skunk that frequents the vicinity of our bedroom window at night or the dog when she has bad gas – but I don’t.

And oh, how I dream of speaking eloquently and being understood. Without having to repeat prior statements in order to clarify not meaning, but the just the mere words that were spoken. How grand that would be! Instead, I stammer, silently begging God for my words to return, only to continue to fumble upon them as they exit my mouth, should they choose to even exit! But, it could always be worse and I might not be able to speak at all (though some might consider that a blessing!).

I have many dreams and just as many wishes, too. For now, however, this is the present, the norm of what is to be. So, in my daylight dreams, I have decided that I will look up and thank God for what He has done and what He is doing still. For not everyday is filled with only dreaming those dreams, but actually living out those dreams. Days of playing with children and singing every song heard, actually remembering every word.

When on the days those dreams become clouded over with the reality of what is today, I have decided that – still I will praise Him. He never has (nor will He ever), allowed anything to pass through His heart, to His hands, and then into my life that has not grown me or made me stronger.

So, I will thank Him for all the walks, whether they take me into flowery meadows or keep me closer to home. I will remember there are many who have no feet at all.

I will thank Him for my slip-on shoes and give the laced ones to those needing them far more than I.

I will thank Him for twice the beauty I have seen in a rose when once I was so easily distracted by its lovely fragrance. I want it to remind me of those who have lost the desire to be a fragrance for Jesus. I want it to cause me to stop and pray they will desire that fragrance once more.

When I verbalize insufficient messages, I will thank Him that I am learning how good it is to listen, far more often than it is to speak. I want to think of those who have never had the opportunity to utter even a sound.

And I will thank Him for my thoughts (and that I still have them!) and chalk the ‘jumbledness’ up to a non-stop gift of creativeness that will not let me give up! I want never to forget that some have lost all ability to remember those who love them most.

For Diary, you know just as well as I, that I very well could be unable to move my fingers at all, unable to speak or voice the words you have spoken through me. I could be stationed in an immovable chair and have no where to go, no one to see, stationed in a empty room surrounded by strangers and no one comes to call . Instead, though I often am quite slower than others wish I would be, I am able to walk and though at times misunderstood, I am able to talk.

I’m going to go now, my friend, but before I do, I want it noted that I am thanking God for the now – not all the time, but sometimes – the norm. No matter how hard it is, it could always be much, much worse.

Thanks for listening and understanding…

Me

P.S. Don’t ever tell that I was the one who let those crickets loose on the night of the last show. Poor Rosie – I never knew she was that afraid of bugs.

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