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!

Are you tired of the cold northwest dumping more than snow on you? Awaiting you is a warmer yet wet little area of the northwest not commonly mentioned.While browsing the internet two days ago, I came across a phenomenal breakthrough in opportunities to fit your specialty.

The Best Job in the World

By clicking on the above link, you will be connected directly to the site where awaiting you is an opening needing the greatest neurologist in the world who also specializes in movement disorders, among other specialties.

Let’s take a quick look at the magnitude of this opportunity, as stated in the job description:

Premier southwest Oregon private practice is currently scheduling interviews for a board-certified / board-eligible Neurologist.

You will have the opportunity to sub-specialize in the following areas (fellowship training preferred): Cerebrovascular Disease/Stroke, EEG/EMG, Epilepsy, Movement Disorders, Multiple Sclerosis, Neurophysiology, Sleep Disorders, Pain or Pediatrics.

-Enjoy a competitive starting salary, comprehensive benefits, pension plan, and partnership track when you join this dynamic clinic (Please note they said ‘dynamic’ – I didn’t have to entice you with big words)
-Be busy from day one (I will be your first patient to guarantee this benefit!)
-Large catchment area of over 600,000 offering a solid patient base (I can also guarantee a solid patient base as Parkinson’s Journey has several of your past patients patiently waiting to hear that you’re not too far away from landing nearby, and ready, if need be, to welcome you at the newly renovated Rogue Valley International Airport, with two baggage turnstiles and all on one convenient level!)
-Well-established physician referral network (I’m not sure how I can guarantee this one.)
-Collegial practice environment (I can guarantee this, as the university is so close and think of all the young minds you could mentor.)
-Terrific work-life balance (I can guarantee this by stating that your drive to work will not be anywhere near what you had to drive to get to Spokane / Liberty Lake – unless of course you find a home that far out again!)

The Medford Neurological & Spine Clinic has a 44-year history of offering comprehensive neurological services. As the only full-service clinic in the surrounding area, our clinic staffs both neurologists and neurosurgeons and specializes in adult and pediatric neurology, electro-diagnostic studies, stealth frameless CT- / MRI-guided cranial surgery, skull base surgery, microsurgical spinal surgery, transphenoidal adenomectomy and stereotactic radiosurgery consultations. (Isn’t that just so exciting?!!!)

Would you consider joining our team? Apply today! (Please!!!)

If the above weren’t enough to entice you, get your wife and read on (I will highlight the strong points for you):

Medford, Oregon is surrounded by beautiful mountains and offers moderate temperatures year-round. (Consider the lack of snow shoveling you’ll have to do!) You will appreciate our outdoor recreation, such as golf, mountain biking, fishing, boating and skiing, as well as enjoy our first-class day spas, outdoor concerts, award-winning theatre performances, and monthly festivals. Medford, Oregon offers affordable luxury homes, excellent public and private schools, and LOW PROPERTY TAXES; plus there is NO SALES TAX in the state of Oregon! And, for those who enjoy the beach, the Pacific coast is a short 2.5 hour drive from Medford. Come home to Medford! Apply today!

And now, if that still hasn’t convinced you, consider these pros (cons are of no concern here):

~ Gardening in Medford cannot be compared to anywhere else on earth. Prize winning pumpkins, world famous pears and more await the avid gardener and his/her spouse.

~ Cultural activities are as diverse as the world famous Ashland Shakespeare Festival or the Jackson County Draft Horse Pull.

~ Guided tours of Harry and David, where free samples of raspberry shortbread cookies are handed out when the tour ends.

~ Holiday events galore to welcome the Christmas season and more – Gingerbread House Festival, Ashland Christmas Parade with the spikey head snowmen and fun beyond belief.

~ Farmer’s Market through the summer months with fresh fruits and veggies. Dogs have been banned which takes away the fear of being devoured while shopping.

~ Discounts at the supermarket Friday mornings on old breads and meats.

~ Nearby and historical Jacksonville offers a peaceful atmosphere and the Britt Festival with world famous musical artists such as James Taylor.

Now, some may think I’m being selfish and that I just want my doctor back (which I cannot deny as being true and don’t relish the thought of anyone else messing with my brain), but really I’m just worried about you not having the opportunity to touch other’s lives with your calling. At the very least, with all attempts of humor set aside, I hope you know just how much you are missed.

Sherri

There have been many stories coming my way lately, regarding the made up scenarios of Parkinson’s disease. What I mean is this – some are being told by their spouses or other caregivers that their faking it or it’s all in their head (no pun intended). Some are going to the doctor, only to have the doctor (not a specialist in PD) tell them – the patient – that they’re just going through a phase of depression and eventually, they’ll get over it.

Let me tell you a tidbit of my story… At the age of 30 or so, I started having some things go wrong – healthwise. I was getting extremely tired. My eye began being weird. I suppose you could say that was the symptom that got me to the doctor. The eye doctor.

Before my eye exam, I explained what was going on. My eye would burn terribly and hurt and then I was seeing these little ‘fireball’ type objects. I likened them to the fireballs in the Mario Brothers Nintendo games. During an eye exam, my eye doctor slid over to the light switch on his little black stool and flipped the lights on. Something he had never done before.

“Has anyone in your family ever had MS?”

My heart sank. “No.”

At that response, he went down the hall and brought the ophthalmologist back with him. Off went the lights and the ophthalmologist examined my eye (the other doctor was an optometrist. The lights came back on again.

“Your optic nerve is hemorrhaging. What your’re seeing and is making your eye burn is blood.”

According to the two doctors standing there, Multiple Sclerosis, Rheumatoid Arthritis, and Lupus can often begin with what was happening inside my eye. However, there was one other thing it could have possibly been and they immediately had me come back in the morning to have an MRI of my brain done, to make sure it wasn’t a brain tumor pushing on my optic nerve. An MRI would also show if there was any build up of myelin on my brain – another symptom of MS. The MRI came back negative for a brain tumor but showed some slight myelin build up – a symptom of MS if the build had been greater.

Eventually, they called it Lupus and treated me accordingly for it. Ten years later, I was diagnosed with Young Onset Parkinson’s disease. The symptoms have been consistent with all I’ve read about PD. I think they got it right this time around.

The point of me telling you ‘my’ story, is to show you that often times, certain diseases may ravage our bodies and never be seen with the naked eye. No one else could see my eye hemorrhaging and what was causing the awful burning I could feel (and see!). But it was real.

And now I have PD, as do so many others who thought they were signing up for one thing, only to find out they were given another. A life of leisure gone wrong.

What does PD look like? That all depends. First of all, it is different for everyone who has it. Some may shake uncontrollably – all the time – while others shake less but have terrible back and/or shoulder pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their disappearing voice, while others take speech lessons (or talk to themselves).

Some have a difficult time with speech, walking, etc. However, most people don’t and most likely won’t ‘see’ this.

You won’t see the restless legs that keep them awake half the night, pacing the floor to get it to stop. You may miss seeing when your PD person falls and scratches up their forearms and elbows.

You won’t see them struggle while getting dressed because they want to try to do it themselves just one more time. You won’t see how it becomes harder and harder to swallow their medications.

The fact is, you won’t see a lot symptoms common for PD or MS or Lupus, etc.k, even if they are visible, because you may not really understand the disease or know what to look for. But, the PD patient is fully aware of what is going on inside of them and no one believes them because they can’t see it and think they’re faking that they have the disease because they badly want attention..

May I ask a favor? Don’t dispute what they are trying to tell you or are dealing with. To lose the support of a spouse who thinks you’re merely putting on an act can be devastating to the one suffering. If you’re in denial over what your spouse has been diagnosed with, seek out a support group for caregivers.

Whatever you do, don’t push their diagnosis away and pretend nothing’s wrong. Believe them or they’ll seek support somewhere else. Is that really what you want?

And PD person, if you’ve got a doctor that doesn’t believe what you’re telling him, get a new doctor.

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

About a week ago, I met one of my neighbors. They travel a lot in their motor home and just pulled in from a long stretch. They were gone all winter to Arizona and for the summer, they were camp hosts over at Crater Lake. So, I wasn’t being ‘un-neighborly’. They are just never there.

I had gone to the mailbox and on the way back my neighbor was standing at the back of his motor home with two other older fellows. They were chitchatting or as some say, shooting the breeze.

I had been singing as I walked and brought it down to humming to myself as I approached the threesome and was about to walk by when my neighbor broke the conversation with his two friends to tell me to “Lighten up. Things aren’t that bad.”

Oh good. Another one of those people. Now, I have nothing against ‘those’ people. I’m not even sure what I mean by ‘those’ people, except to say, they don’t get it.

Some people measure happiness and joy by the smile plastered across someone’s face. If they’re smiling, they are doing great. How many times have you put on a smile for the crowds, meanwhile inside, your world is falling apart? Yet, it doesn’t work the same in reverse order. If you look down, people assume you are down. They aren’t familiar with the effects of Parkinson’s disease (PD).

Many think that PD is simply an illness that makes a person shake and it does. However, that’s only the tip of the iceberg. Did you know that PD can include:
- loss of smell
- loss of balance
- stumbling
- depression
- fatigue
- dry eyes
- lack of muscle control
- tremors
- severe pain
- inability to walk safely
- stiffness
- etc

So, when my neighbor, standing across the street, interrupted his friends to make his comment about me putting a smile on my face and added, “Now, isn’t that better?” when I forced it, I was frustrated. I was happy.

So often, we think unless the other person is smiling, something’s wrong. We assume that something is troubling them. People with PD have a disadvantage in this area – being able to show on the outside, how they feel on the inside. A person with PD often loses his or her smile, as the facial muscles in a PD patient has caused their smile to disappear. Many people, who know nothing about PD, don’t understand that reality and make it their lot in life to yell at others to put a smile on their face, if they don’t see one there already. If that weren’t enough, they follow it up with, “Now, isn’t that better?”

Being happy doesn’t mean you walk around with a smile plastered on your face. I see many sad, disheartened, lonely people all over the place who have a plastered smile on their face and inside they are dealing with the darkest places of their life.

The next time you see someone who looks lonely, sad, down – ask how he or she are doing. You might be surprised at their reaction.

When you’ve been blessed with the companionship of the Little Monster we so familiarly and ‘un-affectionately’ call Parkinson’s Disease, you may get tense and tight at the mere mention of… PD.

For some with Parkinson’s, you haven’t experienced much stiffness. Maybe no pain.  Maybe lots.  Whether you have or not, there is something you can do for yourself that will keep you a little looser, a little more mobile, a little happier.  It’s a little treat you can give to yourself.

A massage.  Massage therapy has been proven to improve the patient’s day to day activities, sleeping habits, walking, stress, and more.  Rigidity, stiffness, fatigue and more have also been proven to get relief from this little treat.  If these symptoms aren’t addressed, depression, a poor self-esteem, and or isolation can set in or get worse.

In a five week study where patients with PD were given muscle relaxants versus massage therapy two times a week, both groups showed improvement but the trophy went to those receiving massages.  They showed a greater response in their ability to handle day to day activities and in their stress levels (going down).

We’ve always known a back rub feels nice.  A massage will not only help the rigidity, stiffness, stress, etc., it will leave you feeling great.  Most neurologists or Movement Disorder Specialists will advise you to add this as part of your treatment.  So, grab your car keys and tootle on down to the local massage therapist (make sure you choose someone reputable – consult your doctor), and make yourself an appointment.  Maybe you’ll have timed it well and be next.

Check your healthcare insurance program.  Many will cover this type of treatment to some degree, as it is considered treatment for Parkinson’s Disease.

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.

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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!

In a study conducted by the University of Chicago, there seems to be a common thread amongst ‘happy’ people – not watching television.

What’s that have to do with Parkinson’s disease? Plenty.

As a PD patient, you know that you’re already susceptible to depression. Sitting on the couch and channel surfing isn’t going to help you out. Sometimes when we’re depressed, we are heavily focusing on how we feel. In other words, we’re focusing on ourselves. The best way to combat that is to get up and do something, especially for another person.

In the study done by the university, it also stated that happy people spend a large portion of their time socializing with other people, going to church, reading and more. 45,000 Americans responded to this lengthy study, concluding that out of 8-10 activities that happy people are involved in (such as those listed above), TV was the only activity showing a negative response.

In some cases, that may be easy to see why – news reports are depressing, many of the shows offered on prime time TV include broken relationships, immoral subject matter, violence, crude comedy, etc. I don’t know of many shows aired currently where you can walk away and feel better.

For people who struggle with chronic illness, television can add to their depression, depending upon their channel choice. Couple that with today’s unemployment rate in a family who is already struggling, and depression can escalate.

So, how to you battle this darkness if you’re a PD patient? First, if you’re doctor doesn’t have you on an anti-depressant currently, make a point of discussing it at your next appointment. If you’re faring well in terms of emotional stability, you may be an exception. Depression isn’t something to be ashamed of and PD can cause extra stress, anxiety, anxiousness and more. A low dose of anti-depressant may help you cope more easily with all the other side effects of PD.

Whether you choose to go with a prescription or not, get off the couch. Grab a cane, a walker, whatever it takes to get you moving around the house or community. Get someone to walk with you or take you for a walk. There is so much beauty to behold, even if it’s on a busy street – find a smile on someone’s face.

Cant’ hold a book in your hands? Have someone read to you or get an audio book. There are hundreds of popular titles out today.

There are several different software programs and equipment add-ons for computers now that enable the disabled. Check into them for yourself or for your loved one. These are beneficial for the patient who can no longer type but can still hold a conversation. It enables face to face from anywhere in the world. Support groups are also now accessible this way.

If you are physically able, volunteer at a preschool. They could always use help and what better lift-me-up than to play with toddlers?

Volunteer at the library, for a youth sports team, for tutoring, by reading to an elderly patient in a nursing home. The possibilities are endless. The main idea is, do something. Don’t just sit there. If you are struggling with depression, planting yourself in front of another episode of ‘As the World Turns’ will only enable your world to shut down.

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.