Last year, I lost someone in my life that I loved, admired, and adored.

My doctor.

Now, I know I’ve harped on this subject plenty of times, but I can assure you I’m not harping today and this post will not be one about wishing he was back, but rather – it’s about a discovery I made – in my brain, of all places.

As I’ve said before, my doctor (I still refer to him as ‘mine’, as – if God wills it, he’ll be my doctor again) was/is the best. If you question my authority on this subject – don’t. It’s just a plain Jane fact. No arguments allowed.

Now, this discovery will incorporate all neurologists who have become Movement Disorder Specialists – young and old, tall and short, round and skinny, blonde-headed or brown.

If you watch TV on Monday evenings, it’s more than likely that you’ve come across a show called ‘House’. It’s a show about a doctor (yes, another doctor show) who is basically, nothing short of a genius. His specialty is solving cases that the regular GP’er can’t even begin to figure out. He’s the Mayo Clinic doctor of all doctors. Rarely do any of his patients pass into the next life.

That’s the ‘job’ of most doctors, right? To determine the source of the symptoms, pinpoint the pain, find a cure for the cause. Most doctors watch their patients walk in, walk out, and don’t wonder when they’ll be meeting up with them again.

This is just not the case with Movement Disorder Specialists, which is why, after my epiphany moment; I now have an even greater respect for these people.

An oncologist has a tough job. That goes without saying. Yet, while they do see many patients breathe their last breath, they also have many patients under their care who are given a new lease on life. An orthopedist is fortunate to have the specialty of fixing up their patients and sending them on their way with say – a new knee. But a Movement Disorder Specialist? Have you ever thought about this? They chose to get into a specific field where they know that the patient referred to them to now be under their care, is another life they will have to, even under the best of care, watch deteriorate and/or eventually come to an end.

I know this is a difficult thought, but please bear with me. When I thought about my doctor (the infamous Dr. Anthony Santiago – superhero Movement Disorder Specialist of the northwest and beyond), I realized that he literally sees his goal as a physician, to try to give the best possible care to those who will most likely not get ‘better’, but rather – get worse with time.

The reason this hit me like it did is that these specialists choose to do this work. They choose to walk beside patients that they know can’t take a pill or undergo chemotherapy or radiation (not that it works for all cancer or other patients with life-threatening diseases) to see if their disease will be eradicated. Instead, an MDS operates with the knowledge that their main purpose is to try to give their patients the best quality of life they possibly can. (I hope this is making sense!)

I guess that’s just another reason Dr. S- was/is so great. You knew, (being his patient) his greatest concern was to make your life the best possible while he fought Little Monster with you. All to say, hats off once again – not just to Dr. Santiago but to all MDS’s out there who have a tough job of not only caring for us PD’ers. Thanks to all of you who care for us and do it so incredibly well.

We appreciate you.

Sherri

With winter (hopefully) over soon, I hope that the warmth and sunshine of spring will overwhelm you with happier feelings than the dark clouds of winter often bring.

If the sun is out but the cold air still prevents you from enjoying it, do as our pastor’s son did and climb in your car, park where the sun hits you and turn the heater to high. Now close your eyes and picture yourself at the beach. Maybe put on your sunglasses for effect. If that doesn’t work, make some popcorn and put ‘Endless Summer’ in your movie player and pretend you’re in the actual movie itself, which is all filmed at the beach. It’s a hilarious at-the-beach movie that will cheer you up.

On the main reason for this post:

Go to http://parkinsonsjourney.com/the-thing-about-doctors and leave a comment re: survey. I am very interested in your experience. My experience shared has got me thinking a lot of things…

Three other surveys, if you please, for my book in progress:

Survey #1 – Men vs. women: As a man (if you are a guy) or, as a woman (same rule applies [women]) – what is (are) your biggest fear(s) as a patient with PD or a chronic illness? (specific physical, non-physical, or both answers, please – can be anonymous or not).

Survey #2 – As a parent of a child witih PD or a chronic illness, how do you find support/encouragement/your coping mechanisms?

Survey #3 -Caregivers: What is the best way you have found to ‘cope’ – that isn’t the best word, but I think we all understand what I mean. This is for all who care for someone with ANY illness/disease.

Thanks to all who can help out in any way.  You can leave your answers as a comment or send to sherriwoodbridge@hotmail.com.

Sherri

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!

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 met Elliott Fike through Facebook. Elliott has Young Onset Parkinson’s disease.

Welcome to Parkinson’s Journey, Elliott. You were a firefighter, is that correct?

Yes, I was a Firefighter/Paramedic for the Bazetta Township Fire Department, located in northeast Ohio, in Trumbull County.

Was it a childhood dream to become a firefighter or if not, was it a ‘grown up’ decision?

This was not a childhood dream, but what lead me to firefighting was that I was talked to by a member of the department who asked me to join and give it a try. I began in 1981 as a junior volunteer and have been in the business since for 28 years.

What did you enjoy most about it?

The enjoyment initially was the rush that you would get on a fire or EMS call. Now, it’s knowing that you did make a difference in the life of an individual.

When did you first notice ‘something’ was wrong? What were your symptoms?

Several years ago, I had a lot of people, constantly asking why I looked angry and had no expression on my face. I could not answer, other than to say I was not angry.

I noticed a small tremor in my finger, and I also noticed I would become easily fatigued. I was an avid weightlifter/strongman. I would work out with weights and thought that it was due to me getting older and my body was not taking it like a younger body would.

I would change workouts, take time off, but none of this would really help. I was unable to do a lot of the outside work at the pace I was use to. I just took assumed again that it was due to growing older and perhaps some stress.

About two years ago, my muscles would twitch and there were involuntary movements with my body. Tremors haven’t really been the problem as they have been minor. After I would workout at the gym or do any work, I would be unable to move, have severe body–wide pain and severe stiffness body wide. My hands and feet would cramp. I was beginning to think I had perhaps overworked the muscles and this was the problem. It came to a point where my wife noticed I was shuffling my feet more, and would tell me to pick up my feet. I could not – it was like I just could not pick them up. Stairs were harder, I was known as the person who would fall going up stairs. This was due to the dragging of my right leg catching on the lip of the step, causing me to fall forward.

I am learning how to do certain tasks a different way, and I have help from my son.

How old is your son and how has he helped you?

My son is 19 years old. He does some work around here that he knows may be dangerous.

How did your wife respond to your diagnosis?

She experienced her father having Parkinson’s disease, and he passed away in June 2008. She knows the frustration, especially when doctors do not want to come out and say that you have Parkinson’s, but some sort of mental illness.

What did you do when you found out you had Young Onset PD? What was your response and what action did you take?

We did some research, and the symptoms matched a variety of neuro disorders, but what stood out on some was Parkinson’s. I have been referred to doctor after doctor who would range in diagnoses from telling me that I am fat and depressed and need sleep, to I was putting on a dog and pony show.

My present doctor believes 70 percent of what’s wrong is Parkinson’s, but still believes there may be another factor here due to other symptoms that I have. She did place me on medication with improvement in symptoms, but still has not given her 93 percent diagnosis at this time. She stated the only way I would get 100 percent is by dying and having an autopsy.

She really said that? Was she kidding? I’m not questioning you – I’ve just never heard of that.

No. She is not kidding. In fact, now she has reneged her diagnosis, stating that she never gave it, when in fact, she told me to my face she was at the 70 percent. But this statement is not a joke. She will not give any higher diagnosis than a 93 percent, which has now put me on the list to have an autopsy.

I have accepted the fact of having a movement disorder.

How do your family and friends cope with your PD?

Well, family does well, as far as friends, I cannot answer that. I have not been contacted by anyone, or asked by any friends how it is going.

Elliott, what (if any) are your greatest fears?

The biggest fear I have is reaching the final stage and needing someone to constantly take care of me.

I think that’s one of mine, too. I suppose it’s not so much a fear as much as a feeling of becoming a burden to someone.

Do you take part in support groups? Would you recommend support groups for people with PD?

No, I do not belong to support groups, though I do see a psychologist who feels that I have handled my PD well and would be more of an asset to those with the disease due to my caring ways and the talent to be a motivational speaker. I would recommend support to those who do have a problem of coping with this disease.

What sort of things have you spoken on in regards to PD and where have you spoken (lately)?

I have not spoken yet due to the doctor not giving me the diagnosis completely. I cannot understand why with the symptoms and signs, and on one hand telling me yes, and then stating in a report that she has not given the diagnosis.

What is the greatest obstacle you’ve had to overcome?

Currently, I am filing for disability. With this disease, along with the side effects of the medication, I cannot be a fireman any more. The greatest obstacle is doctors who have the attitude that people my age cannot have Parkinson’s and try pushing it off as another problem. Even when the medication for Parkinson’s works, they still do not believe the problem is Parkinson’s.

I know I am not alone in the crowd. I have read a lot of stories of other patients. It is sad, and I now know why depression is a big factor. Being told you need sleep or are faking, when you know something is wrong, can make you crazy. And – I am still fighting this. Even with a Parkinson’s doctor. We know our bodies – they don’t.

I think many of us can agree with you in regards to feeling crazy when no one believes you have something wrong (because they can’t see it). It is frustrating.

You mentioned depression. Do you find you struggle with that (or did) and how do you cope with that, other than more medications?

The depression is not from the problems of the illness, but from the hassle I have been through from the medical profession. When your own primary doctor believes it is anxiety disorder, and my psychologist who has been treating me for a year and a half, states that there is no anxiety disorder, you have to wonder what to believe. I tremor, get stiff, shuffle, cannot write well, pain. I think part of the depression is when someone important shows a sign, they have it, but the general population shows the signs and symptoms, they are automatically diagnosed with a mental disorder.

What is the greatest thing you have learned from having PD?

Believe it or not, those doctors should receive more training in recognizing this disorder in younger people. I have learned to do different tasks in a different way to complete them. I will not let this disorder own me, but I will own it.

Do you have any hobbies and if so, what are they?

I have a wood shop. I build numerous projects from small to large. I also refinish pieces of furniture or wood work. We do have one rule of the shop, when the wife is not home, I cannot play with the power tools.

If you could leave our audience with a word of wisdom and/or encouragement, what would it be?

Do not give up. Refuse to be told that it is all in your head if you are still in the process of a diagnosis. We know our bodies better than anyone. Do not let this disease own you, own it. As much pain, stiffness, and tremors I have, I make sure everyday I do something and not sit. The mind is very powerful. I did not ask God why me, I ask God, what is it you want me to do. Become an inspiration, there are some people who will have difficulty in dealing with the diagnosis, but life is not over. I will talk to anyone who is having this difficulty. Two years and numerous doctors, was actually made to take a psych evaluation. But throw all you want, I will not falter.

Anything more you’d like to add?

This has been a painful road for me. To have doctors tell me that it is all mental. I read through my primary doctors notes from the last year and on everyone, he wrote, Anxiety disorder. He refuses to assist me in any way with this. A doctor in Cleveland Clinic, a movement disorder doctor, also stated an organic brain disorder, but believes this is a mental disorder. A local doctor actually said to me, that I was fat and depressed and needed sleep. It is time, that neurologist, movement disorder doctors receive more training in the recognizing Parkinson’s in the young. It is demoralizing, degrading, and embarrassing to be told this over and over.

Thank you so much Elliott, for sharing with us. I am awed at your perseverance and insistence. You are a fighter and I know there are many at PJ who believe in the power of prayer and will be praying that God brings the right physician your way that fully understands what you’re dealing with and can help with determination to give you the best care and compassion. Those kind of doctors, though sometimes hard to find, really do exist.

And for all of those at PJ and/or who struggle with the issues of having a chronic disease, there are other issues such as healthcare that Elliott is fighting. Please pray for relief for him and his family. If you have a story that you’d like to share to encourage someone else, please let us know! Next interviewee: Kris Kessling – Painter, Poetry writer and Parkinson’s fighter!

~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

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.