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

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

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

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

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

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

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

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

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

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

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

Who’s following you?

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

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

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

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

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

~You must be willing to fund raise.

~You will be willing to make many sacrifices.

~You must be willing to raise awareness.

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

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

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

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

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

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

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

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

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

I 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

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.

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.

Often when you read about those who are suffering with Parkinson’s disease, the article refers to those who are a tad bit older, over 60 usually.   We don’t often see articles, information, etc. on people under 50 who are fighting this little monster (often harder because it tends to hit the younger crowd a bit harder).

Thought you all might enjoy this article…

The Young Faces of Parkinson’s Disease

Enjoy!

Sherri

The following is a talk given by Judy at church last Sunday morning, when her pastor asked her to share about what it’s been like to live with PD and what she has learned from it.  You will be blessed.  -sherri

For those of you who don’t know me, I’m Kenny’s fan club manager and if you’d like an autographed 8 x 10 please see me after church with a check for 19.99 to become a new member.

Really, I’m blessed to know this man and his family from his most recent assignment before this one.  My daughter started in youth when Kenny and Angie were youth leaders

Anyway, when he asked if I’d tell some of my story I told him sure, I’d be glad to.

What I’d like to tell you about is some of what God has done in my life since I was diagnosed with a chronic illness almost 7 yrs ago.  Before I tell that story, it might help to have some more details in relationship to me.  here goes….my name is Judy Hensley, I’m a 46.9 yr old woman, born and raised in East TN.  I was a very healthy & active person for 40 yrs.

I am blessed to have Bill Hensley as my husband for 25 years. I am also blessed to be the mom of Carol Hensley, a great basketball n volleyball player who will be 16 in a couple of more months.

OK, now I’m dying to know something about you…so let me ask this:   How many of you know someone with a neurological illness called Parkinson’s disease?  If you didn’t raise your hand, you can when I ask you again at the end, because that is the illness I have been living with for 8 years now.

Parkinson’s disease is the second most prevalent neurological illness after ALZ.  PD occurs because of the death of some cells in my brain which produce dopamine, which is a neurotransmitting chemical required for smooth muscle movement.  When this chemical in not sufficient quantity you can experience tremors or slowness of movement.  Approximately 15% of people diagnosed with PD are called young-onset if they have symptoms before age 50.  It is estimated that over 1.5 million American have PD today and although millions have been spent on research — there is no cure for PD, nor a diagnostic test for it.  Many people are misdiagnosed or not properly diagnosed for many years. Many doctors do not realize the many symptoms that PD can exhibit.

Almost seven years ago, Bill and I heard a neurologist say to me after being referred to him after 9 months of other treatments “you most likely have Parkinson’s disease”. I was relieved to know what it was that was causing my body to be tired and shaky, but I was devastated and immediately thought, “How long will it be before I can’t drive, and then become and invalid?” I remember thinking to myself, ‘just hold it together in front of the doc.” I made it out of the office to the car before I broke down and cried, hard, and for a long time that afternoon.

Since that day, there have been some rough days, but for the most part, my family and I have handled this twists and turns of PD because of a faith in knowing that God is in control.  A special verse in Jeremiah 29:11   has encouraged me since my diagnosis….’For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. (NIV)

Recently I have found encouragement from another verse in Jeremiah.31:13 (the LORD speaks about restoring Israel to it’s glory): Then maidens will dance and be glad,  young men and old as well. I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.    Tommy Walker expresses this verse in a praise song:  He’s turned my mourning into dancing again; He lifted my sorrows.  I cannot stay silent; I must sing for His joy has come.

And I have learned that I can’t live with PD in my own strength, and I know that the  strength  I need  to live with PD is not of my own making but comes the Lord…. and in this trial of PD, I can also experience a JOY that comes from trusting in my LORD.

There have been so many things that have been blessings from the LORD in the midst of having this illness and because of this, I cannot be silent I will praise HIM for his goodness!  I hope others will rejoice when they think of God’s love for us, no matter what the situation.  We can testify to how great the Lord’s love is toward us as it was expressed in the song, ["Your Love Is"].God’s love certainly is deep, high, long, and wide==and we can  not fully know it, except when  we experienced it thru a personal relationship with HIM.

I’d like to share with you seven “P” gifts that I feel God has taught me through living with PD.  These things have affected my physical, mental, and emotional well-being and have made the journey with PD easier.

First, I’m gonna start telling people I’ve got a new degree – a PhD in PD.  My special Philosophy degree in PD is based on new perspectives and new passions.  It basically boils down to this: my physical condition may continue to deteriorate over time but with encouragement from my  family and friends, others living with PD, and from my faith in God’s promises,  will be alright.

Second, I’m putting my new degree to use in my new profession – a full-time job as a disease fighter, information distributor, enthusiastic encourager,  awareness /advocate promoter, and in my daily life, as well.  Just trying to figure out how to stay out of trouble and keep moving forward.

Third, this new profession has created new passions: a heightened desire to know and praise God more, to support others who are making a difference like The Regulars, and trying to write and encourage others through the media of the internet by blogging some inspiration or just bringing a smile by writing down some of my thoughts at Parkinson’s Journey. There is also an unusual affinity that I have developed for a bright coat – and bongos.  Another passion is to meet and encourage others with PD. This has led me to travel and visit others with PD in numerous places in the US and many have visited with us in our home.

Fourth, I think I’ve developed a propensity to persevere by taking time to observe how others are coping with PD and other life-changing circumstances – like my mom has with cancer.  Like Tim and Ann with his paralysis.  Like Angie and her testimony of living and being cured from MG.  Like Enzo and Eileen who have family members whose illnesses have made then become extraordinary examples of hope for many by climbing mountains for awareness.  Even Paul in the New Testament, who had a thorn in his flesh and who faithfully, still carried on in God’s work.  He speaks of sufferings in Romans 5.  “And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

There are many  others living w/PD I have been blessed to know who have been examples to me:  Kari, who after just being diagnosed went to a conference [by herself, across the country].  Like Peggy, who  has had brain surgery and is such an advocate for us w/PD.   Like David, who had to give up a pastorate he held for 35 yrs but still teaches physics.  Like Mike, whose PD most likely cost him his marriage but he has remarried and has his own business and is a great PD advocate.  Like Annie–Like Becci–Dana and Sherri.  Like Karen , like Nan, like Jeanette, Sass, and many  others I could mention, who each in their own way have encouraged me and others by their outlook on life w/PD.  I thank God for their presence in my life.

Fifth, something I’m learning about this trait of perseverance – it  does not work well without patience.  I think I’m developing that in some areas (some areas still need some fine tuning and heavier doses), but I try to think twice before judging people now, and hope I have more compassion for those who are also struggling.  I try to smile and let people know I’m not going to blow up when then mess up my order at the fast food place.   I also hope I’m trying to understand my daughter better and to be more patient with her…and Bill too.

Sixth, I think God has shown me it’s OK to be me with PD and  a practical presentation of who I really am is what I need to be to others.   I want people to know my heart is genuine and that when I say I’ll pray for you, that I will do it.  You know it’s kind of like when someone says “I know what you are going through.”  They can say that but you realize it when their actions of how they respond to your situation reflect that sentiment.  One of the singers in Casting Crowns said this about one of their songs: “You can say what you think, but you live what you believe.”  I hope that is what I am doing and that it is pleasing to God.

And  the sevenh thing…PEACE.  I finally get it.  It’s not  just a trophy to sit on a shelf to take hold of and look at but comes from within when our heart, mind, and deeds.  It is a reaction to the faith in God’s promises – He will never leave us.  He supplies us with the same strength that He made available to Jesus.  We have hope for a bright future in heaven.  This world is not our home for long and our lives and tests here are preparing us for the wonderful place He has prepared for us.

I think God has helped me maintain a positive attitude while living with PD through the verse that starts like this: “I CAN DO ALL THINGS THRU HIM WHO GIVES ME [HIS] STRENGTH – [HIS PEACE...HIS LOVE...HIS ENCOURAGEMENT...AND HIS UNCHANGING PROMISES].

So, even though I don’t know what my future will holds, I know who holds my future in His hand, and who has promised me that he will turn any mourning I may have into dancing and joy!

So how many of you know a person with Parkinson’s disease?  And how many of you will pray for me and others with PD?

I found this little poem, whose origin is unknown, to be especially true for me:

I asked God for strength that I might achieve,

I was made weak that I may learn humbly to obey.

I asked God for health, that I may be happy,

I was given infirmity that I might do better things.

I asked for riches that I may be happy; I was given poverty that I might be wise.

I asked for power that I might have the praise of men,

I was given weakness that I might feel the need for God.

I asked God for all things that I might enjoy life,

I was given life that I might enjoy ALL things.

I got nothing I asked for but everything I hoped for.

I am among all men, most richly blessed!

Thank you for letting me share my heart with you today.

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Acetylcholine

Chemical messenger released by cholinergic nerves. Normally in many parts of the body, including the brain, and necessary to normal body functioning. There appears to be a reciprocal seesaw relationship between acetylcholine and do pamine and their respective nerve cell systems.

Action Tremor

Rhythmic, involuntary movement of a limb when movement is initiated, e.g., when writing or lifting a cup. Not usually seen in the earlier stages of Parkinson’s.

Agonist

A chemical or drug that mimics neurotransmitter activity.

Akinesia

Absence of body movements.

Amantadine

A drug which stimulates the release of available dopamine in the brain.

Anticholinergic

Adjective applied to a substance (medication) that reduces the action of acetylcholine.

Antihistamines

Drugs opposing the actions of histamine; commonly used to treat allergies. Used in the past for Parkinson’s as they sometimes had beneficial effects on symptoms due to their anticholinergic properties.

Apomorphine

A derivative of morphine and a dopamine agonist. Currently experimentally used as injectable treatment for severe Parkinson’s.

Ataxia

Loss of balance

Athetosis

Dyskinesias in which there are slow, repetitive, sinuous involuntary movements.

Autonomic Nervous System

The branch of the nervous system that controls internal organs in the body, i.e., heart, lungs.

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Basal Ganglia or Nuclei

Deeper structures in the brain, concerned with normal movement and walking. The caudate nucleus, putamen and Substantia Nigra are basal ganglia affected in Parkinson’s.

Benign Essential Tremor

A condition characterised by tremor of the hands, head, voice, and sometimes other parts of the body. Essential tremor often runs in families and is sometimes called familial tremor. It is sometimes mistaken for a symptom of Parkinson’s . However, this is an action tremor and there is no rigidity or bradykinesia.

Beta-Blockers (§-Blockers)

Drugs which block the action of epinephrine at certain sites. Usually used to treat hypertension and heart disease, they may be effective in the treatment of benign essential tremor.

Bilateral

Occurring on both sides of the body.

Blepharospasm

Spasmodic blinking or involuntary closing of the eye lids; a type of dystonia.

Bradykinesia

Slowing down of a movement. Bradykinesia involves slowness of initiating and executing movements and fine motor movements and difficulty in performing repetitive movements. It is a major symptom of Parkinson’s.

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Carbidopa

The ingredient in Sinemet which prevents the breakdown of the levodopa in the body before it can reach the brain.

Central Nervous System (CNS)

Consists of the brain and spinal cord.

Cerebellum

Part of the brain that is involved in coordination.

Cerebral Cortex

The largest part of the brain; responsible for thought, reasoning, memory, sensation, voluntary movement.

Choline

A naturally occurring substance which is a precursor of acetylcholine.

Chorea

A type of dyskinesia (abnormal movement), characterised by continuing, rapid, dance-like movements. May result from high doses of levodopa and/or long term levodopa therapy.

Choreoathetosis

A dyskinesia characterised by choreic and athetoid movements.

Cogwheel Rigidity

Stiffness in the muscles, with a jerky quality when arm and leg joints are repeatedly moved.

Constipation

Diminished ability of intestinal muscles to move feces (stool), often resulting in very hard stool. A common problem in Parkinson’s.

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Deprenyl (Eldepryl, Selegiline, Jumex)

A drug that slows the breakdown of chemicals like dopamine by inhibiting the action of certain enzymes. It increase effects of dopamine in the brain.

Dopa Decarboxylase Inhibitors

Drugs that block the conversion of levodopa to dopamine outside the brain.These include carbidopa and benserazide.

Dopamine

A chemical produced by the brain; it assists in the effective transmission of electrochemical messages from one nerve cell to the next. It is deficient in the basal ganglia and Substantia Nigra of a person with Parkinson’s. It governs act ions of movement, balance and walking.

Dopamine Agonist

Drugs that mimic the effects of dopamine and stimulate the dopamine receptors.

Dopaminergic

An adjective used to describe a chemical, a drug, or a drug effect related to dopamine.

Drug Induced Parkinsonism

Parkinson’s symptoms which have been caused by drugs used to treat other conditions, e.g., neuroleptic drugs, and reserpine, used to be used to treat hypertension

Dysarthria

Speech difficulties caused when the muscles associated with speech are affected.

Dyskinesia

Abnormal movement of voluntary muscles. Dystonia, athetosis, and chorea are types of dyskinesia.

Dysphagia

Difficulty in swallowing.

Dystonia

Involuntary spasms of muscle contraction that cause abnormal movements and postures. May appear as a side effect of long term drug treatment in Parkinson’s and may worsen in response to stress.

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Encephalitis

Inflammation of the brain usually caused by a virus infection.

Encephalitis Lethargica (Sleeping Sickness)

A specific kind of encephalitis which occurred in scattered epidemics throughout the world during the period 1916 to 1926; it usually caused sleepiness, double vision, trouble swallowing, and drooling. M any of those affected developed advanced Parkinsonism as depicted in the movie Awakenings.

Ethopropazine (Parsidol/Parsitan)

A drug sometimes used in the past for Parkinson’s due to its anticholinergic effects.

Extrapyramidal Nervous System

Refers to the caudate, putamen, and Substantia Nigra. It is affected in Parkinson’s.

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Festination

Walking in rapid, short, shuffling steps.

Flexion

A bent, curved posture.

Freezing

Temporary, involuntary inability to move.

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Glaucoma

A sustained increase of pressure within the eyeball which can injure the optic nerve and cause impaired vision or blindness. Treatment with anticholinergics may exacerbate glaucoma.

Globus pallidus

The inner part of the lenticular nucleus. The lenticular nucleus and the caudate nucleus form the Striatum.

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Hypokinesia

Abnormally diminished motor activity.

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Idiopathic

An adjective meaning “of unknown cause”. The usual form of Parkinson’s is idiopathic Parkinson’s.

Intention Tremor

One occurring when the person’s attempts voluntary movement.

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Lenticular nucleus

This group of cells along with the caudate nucleus form the Striatum or Corpus Striatum.

Levodopa

The international generic name for the medicinal formulation of L-Dopa. It is contained in Sinemet and Prolopa.

Levodopa-Induced Dyskinesias

A side effect of medication which may occur with prolonged use. These abnormal, involuntary movements may be alleviated by reducing the amount of medication.

Lewy Body

Pink, staining spheres on damaged brain cells; markers for Parkinson’s.

Livido Reticularis

A purplish or bluish mottling of the skin seen usually below the knee and sometimes on the forearm in persons under treatment with the drug amantadine (Symmetrel).

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Micrographia

The tendency to have very small handwriting due to difficulty with fine motor movements in Parkinson’s.

MPTP

A toxic chemical, exposure to which can lead to Parkinson’s.

Myoclonus

Jerking, involuntary movement of arms and legs, usually occurring during sleep.

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Neostriatum

Vital part of the brain comprised of two basal ganglia (caudate and putamen).

Neuroleptic Drugs (Major Tranquilizers)

A class of drugs which act as dopamine antagonists (by blocking some dopamine receptors). They can aggravate symptoms of Parkinson’s. This class includes Haloperidol (Haldol), and the phenothiazi nes, e.g., Compazine, Stelazine, Chlorpromazine, etc.

Neuron

A nerve cell.

Neurotransmitter

A specialised chemical produced in nerve cells that permits the transmission of information between nerve cells .

Nigrostriatal Degeneration

Degeneration of the nerve pathways from Substantia Nigra to the striatum. These pathways are normally rich in dopamine and are those affected in PS.

Norepinephrine (Noradrenalin)

Chemical transmitter found mainly in two areas of the brain involved in governing the involuntary autonomic nervous system.

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On-Off Fluctuations

Fluctuations that occur in response to levodopa therapy in which the person’s mobility changes suddenly and unpredictably from a good response (on) to a poor response (off).

Orthostatic Hypotension

A drop in blood pressure during rapid changes in body position (e.g., from sitting to standing).

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Palilalia

A symptom of Parkinsonism, especially the postencephalitic form, in which a word or syllable is repeated and the flow of speech is interrupted.

Pallidectomy

Excision or destruction of the Globus Pallidus, which is part of the Lenticular Nucleus, which is part of the Striatum.

Paraesthesia

Sensations, usually unpleasant, arising spontaneously in a limb or other part of the body, variously experienced as Òpins and needlesÓ or a feeling of warmth or coldness (thermal paresthesias).

Parkinson’s Disease

That form of Parkinsonism originally described by James Parkinson as a chronic, slowly progressive disease of the nervous system characterized clinically by the combination of tremor, rigidity, bradykinesia, and stooped posture, and pathologically by loss of the pigmented nerve cells of the Substantia Nigra in the brain.

Parkinson’s Face

A stolid masklike expression of the face, with infrequent blinking; it is characteristic of Parkinson’s.

Parkinsonism

A clinical state characterized by tremor, rigidity, bradykinesia, stooped posture, and shuffling gait. The more common causes of Parkinsonism are Parkinson’s Disease, striatonigral degeneration, and a reversible syndrome induced by major tranquillizing drugs.

Paralysis agitans

The Latin form of the older, popular term shaking palsy, which was used to designate Parkinson’s in James Parkinson’s time.

Parlodel (Bromocriptine)

A dopamine agonist useful in treating all of the primary symptoms of Parkinson’s. It may be used alone or with other antiparkinson medications.

Permax (Pergolide)

A drug similar in action to Parlodel but more potent.

Postural Deformity

Stooped posture.

Postural Instability

Difficulty with balance.

Postural Tremor

Tremor that increases when hands are stretched out in front.

Precursor

Something that precedes, e.g., a sign or symptom that forewarns of another, such as muscle aching may be the precursor of a tremor.

Progressive Supranuclear Palsy (PSP)

A degenerative brain disorder sometimes difficult to distinguish from Parkinson’s especially in the early stages. PSP symptoms are rigidity and akinesia, difficulty looking up and down, speech and balance problems. Those with PSP often have poor response to antiparkinson medications.

Prolopa

Trade name for the antiparkinson drug composed of levodopa and benserazide. This drug combination contains a ratio of 4 mg. of levodopa to 1 mg. of benserazide (Prolopa 50-12.5, 100-25, 200-50).

Propulsive Gait

Disturbance of gait typical of Parkinsonism in which, during walking, steps become faster and faster with progressively shorter steps that pass from a walking to a running pace and may precipitate falling forward.

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Range of Motion

The extent that a joint will move from being fully straightened to completely bent.

Receptor

A sensory nerve ending that responds to a stimulus.

Resting Tremor

Shaking that occurs in a relaxed and supported limb.

Retropulsive Gait

Walking that is propelled backwards.

Rigidity

Refers in medical usage to a type of muscular stiffness encountered when examining people with Parkinson’s. It is characterized by a constant, even resistance to passive manipulation of the limbs.

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Seborrhoea

Increased discharge of the oily secretion sebum from the sebaceous glands of the skin.

Seborrhoeic Dermatitis

Inflammation of the skin sometimes associated with seborrhoea.

Shaking Palsy

Old popular term which James Parkinson employed to designate the specific disorder we now call Parkinson’s.

Shy-Drager Syndrome

This is a condition in which the symptoms are the result of abnormalities in motor function and problems in the autonomic nervous system. A person with Shy-Drager Syndrome has Parkinsonism, extremely low blood pressure which wo rsens upon standing, bladder problems, severe constipation, and decreased sweating. This condition is quite rare.

Sialorrhea

Drooling of saliva.

Side Effect

A drug’s effect that is different from the beneficial effect for which the drug is being taken.

Sinemet

Trade name for the antiparkinson drug that is a mixture of levodopa and carbidopa. This drug combination contains a ratio of levodopa 4 mg. or 10 mg. to carbidopa 1 mg. (Sinemet 100/25, Sinemet 250/25).

Sinemet CR

Controlled-release Sinemet. 200 mg. Levodopa with 50 mg. Carbidopa in a capsule contained in a matrix (outer layer) releasing the drug more slowly in the body. These capsules are not to be taken all at once, but rather in separate doses over the course of a day.

Stereotactic Surgery

Surgical technique that involves placing a small electrode in an area of the brain to destroy a tiny amount of brain tissue.

Striatonigral Degeneration

This is a degeneration of the nerve pathways travelling from the striatum to the Substantia Nigra. People with this degeneration also appear to have Parkinsonism. However, they respond differently to drug therapy than pe ople with Parkinson’s.

Striatum

Area of brain controlling movement, balance, and walking. Connects to and receives impulses from Substantia Nigra.

Substantia Nigra

Black pigmented area of the midbrain where cells manufacture the neurotransmitter dopamine.

Sustention or Postural Tremor

Tremor that increases when hands are stretched out in front.

Symmetrel (Amantadine)

A drug that releases dopamine and is useful in PS.

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Tardive Dyskinesia

This is a movement disorder associated with long-term use of neuroleptic drugs such as Chlorpromazine, Haloperidol, Loxapine, etc. Movements of a person with tardive dyskinesia are similar in appearance to those of a person with levodopa induced dyskinesias, but the causes of the two conditions are different.

Thalamotomy

Operation in which a small region of the thalamus is destroyed, achieved by stereotactic techniques. Tremor and rigidity in Parkinsonism and other conditions may be relieved by thalamotomy.

Thalamus

Anatomical term designating a mass of grey matter centrally placed deep in the brain near its base and serving as a major relay station for impulses travelling from the spinal cord and cerebellum to the cerebral cortex.

Toxin

A poisonous substance.

Tremor

Rhythmic shaking and involuntary movement of part(s) of the body as a result of sequential muscle contractions.

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Unilateral

Occurring on one side of the body. Parkinson’s symptoms usually begin unilaterally.

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“Wearing Off” Phenomenon

Waning of the effect of the last dose of levodopa, associated with abrupt reduction or loss of mobility.