Of this number of athletic competitions I can say that her dad or I have probably missed less that 20 of them. We have really enjoyed ‘supporting’ her in these activities. That means that we were present at 30 out of 32 sports events she participated in each one of those years. Before those activities she took Taekwondo along with us and we all obtained the status of black belt over a 3 year period. My husband and I will definitely have a void in our lives as Carol moves on to college and wants to take a break from competitive sports to focus on school, working to have her own money, and her relationship with a young man whom she has dated for almost 3 years now.

I hope my husband and I will find an activity that we can do together or individually to fill that void. As I think about the end of the era of Carol’s competitive athletic career, I think of the many good times we have experienced at games and how well she has done in many of the sports. We have met some great people along the way as we became so involved in that aspect of her school. And we are most grateful for the many great coaches and students she played for and with. I would try to list the coaches but fear I would leave someone out.

I would like to mention one man who was in my opinion, a visionary coach. Coach Bob Anderson became Carol’s basketball coach in 7th grade and he was different. He was a hard-nosed coach but it was for a reason. He challenged each one of his players to exceed their potential….to never be satisfied with ‘leaving the bar at the current level of talent’. One could describe a typical player to coach relationship with Mr. Anderson as a ‘love/hate relationship’. They didn’t like his yelling at times, but by the end of one season playing for him, all of the girls had a special affection for the man. Coach Anderson told us after Carol’s first year of playing that she had some awesome potential and if we and she would commit to some camps and hard work that she could excel in basketball.

In 6 short years, and with him coaching 3 of those years, she did exactly that. Carol has played in an estimated 175 basketball games games she has scored over 1000 in the last 3 years of playing basketball at Tri Cities Christian School and has been the MVP of the state basketball tournament in her junior and senior year. She helped lead her basketball team to back-to-back state championship titles the last two years.

Needless to say we are very proud of her and are dealing now with the bittersweet idea of her having played her last high school team sport game at Tri Cities Christian School. But who knows, God may have plans for her to coach, or some other way of being involved in sports that we might not be able to go and cheer for all the time, but no matter what she ends up doing… we will always be proud of her.

My daughter’s school sporting career began right at about the time I was diagnosed with Parkinson’s disease. There have been many times that I prayed that God would allow me to be physically able to see my daughter play until she graduated from high school. The last year or so has been challenging in that regard. I have been there, camera-in-hand at all but a handful of games to document with photos the awesome play of the varsity girls basketball team from Tri Cities Christian School, Blountville TN.

While I am experiencing the end of one era in my life with some dismay, I also dream about the potential end of another era in my life. That era would be the one when a cure for Parkinson’s disease is available! At the end of that era, the emotions would be completely different—there would be joy and not sadness. Many would enjoy the same outcome and all of many people would never have to worry about whether their illness would keep them from going to support their children or grandchildren in their extracurricular activities.

I have become involved with a group of individuals who are working to help facilitate the end of Parkinson’s disease along with Alzheimer’s disease. This group has been inspired by a man I would call ‘visionary’. This man is Enzo Simone and he has formed a project to raise awareness and funds for these two neurological diseases that have affected him personally through his mother (ALZ) and his father-in-law (PD). Enzo has challenged himself and others to climb 10 mountains in 10 years to help in the cure for ALZ and PD. The neat thing is that you can define your own kind of mountain to climb and be a part of the effort along with those who climb physical mountains. And there are others who are joining in the effort because they believe that as a focused group of regular people, (The Regulars and The Army of Change) that they can make a difference in the ending of 2 chronic diseases that affect many millions worldwide. Enzo and the Regulars are half way through his project and I have joined the effort. Becoming involved in this focused emphasis may be where my time is used in the near future. I hope that whether I am moving well or not due to the effects of PD on my body, that there will be something that I can still contribute to the effort. I selfishly want a cure for me personally, but I also want to be a part of the end of the era of PD and ALZ affecting people I know and love.

Although I can still dream that my daughter might still compete athletically someday in the future, I am not so sure of that really happening. On the other hand, with the inspiration and encouragement of so many affected by PD and ALZ, I dream with hope for a day when I can experience the end of the effects of these two illnesses on so many in this world. The vision of one man multiplied along with the efforts of regular people like me and you can make a difference in the end of that era. I hope you will check out the documentary movie, “10 Mountains 10 Years” directed by Jennifer Yee that chronicles the efforts of Enzo and the Regulars as they climbed Mount Kilimanjaro in 2009 and brings to light some of the effects of PD and ALZ on several people who are directly and indirectly affected by PD and ALZ. I think you might be inspired and be prompted to examine how you can help. You might discover that there is a reason to dream along with me of the end of an era of devastating effects on mankind by Alzheimer’s disease and Parkinson’s disease, and that you will join in with the Army of Change to help make it happen!

~ Judy Hensley

References for more information available on Facebook and the Internet at www.backlightproductions.com about the movie which is available as a DVD from Amazon.com. Find out more about Enzo Simone and his project at www.theregulars.org . There are also several blog articles at www.parkinsonsjourney.com about Enzo and other members of The Regulars.

The top 15 list, released January, 2012,  by the Centers for Disease Control and Prevention, analyzes data from death certificates. The report is preliminary; a more detailed analysis will be released later, according to the CDCP.

While the homicide rate took a plunge as the leading contributor for death over the last 45 years, Parkinson’s disease took a hike upward by 4.6%.  Heart disease and cancer still account for about half of all deaths.

The leading causes of death, according to the CDCP and in numerical order, are:

1. Heart disease
2. Cancer
3. Lower respiratory diseases
4. Stroke and related cerebrovascular diseases
5. Accidents (unintentional injuries)
6. Alzheimer’s disease
7. Diabetes
8. Kidney diseases
9. Influenza and pneumonia
10. Suicide
11. Septicemia
12. Chronic liver disease and cirrhosis
13. Hypertension and related renal disease
14. Parkinson’s disease (4.6% increase) and…
15. Pneumonitis (refers to inflammation of the lungs caused by medications or other exposures, such as breathing something harmful over time) due to solids and liquids.

Death rates increased in 2010 for five conditions: Alzheimer’s, kidney disease, chronic liver disease and cirrhosis, Parkinson’s and pneumonitis.

While this is not ‘good’ news, a person with Parkinson’s disease must remember, you don’t die from having PD, but complications from the disease.  So, it could be surmised that, in order to avoid complications as long as possible, exercise, eat nutritionally sound, don’t neglect your regular check-ups, stay away from those who are sick (cold, flu, etc), and laugh.  A merry heart does a body good.   (Click on photo to see picture/ad in its entirety.)

Journeying with you ~

You forget where you parked your car.  Life is stressful, harried, and we have a lot on our minds most of the time.   A common occurrence.

You are sitting at the kitchen table and staring out the window as the snow falls gently on the ground and try as hard as you might, you cannot remember what season it is. ’Spring?’ you think.  ‘Does it snow in the spring?  For heaven’s sake girl, it doesn’t snow in the spring.  Fall then – it must be fall.  It’s cold in the fall.  That’s it.’

That’s a sign to take seriously.  The inability to recognize or track dates or seasons is one of the first symptoms of early onset Alzheimer’s disease, which occurs in 5 to 10% of people under the age of 65.  It is not uncommon to see people in their 50′s with signs of early onset Alzheimer’s (EOA) and because Parkinson’s disease can mimic Alzheimer’s in several ways (mood swings/changes, forgetfulness, difficulty with speaking, etc), I thought I’d give a little info on the signs and symptoms of Early Onset Alzheimer’s or EOA, as it’s also known as.

A lack of motivation or sticking to a task can be mistaken at work as laziness when, in fact, EOA could very well be the culprit.  Instead of being properly diagnosed as an EOA patient, the individual suffering with symptoms they have no control over may result in being dismissed from a good job, associated with mental problems, or other misjudgments.  Relationships (especially the loss of intimacy) may also begin to deteriorate when one or both parties do not understand the connection to something greater at fault.

While losing your keys once in a while or forgetting where you parked your care are absolutely normal, misplacing things consistently and not being able to retrace your steps to find them could be a sign of EOA.  Making a bad decision from time to time, missing a payment once a year on utilities, and forgetting a word to describe what you are trying to say – normal.  However, continually having poor decision making abilities, having a hard time holding or having a conversation, or the inability to manage your budget – these are big players in early onset Alzheimer’s and need to not only be taken seriously, but action should be taken for a diagnosis as to why these symptoms are occurring.

Alzheimer’s does not happen overnight, regardless of age.  It takes different degrees of progression, depending on each individual.  A person of any age will experience a few to several symptoms.  Common symptoms are:

• forgetting information learned recently
• asking to repeat information over and over again
• inability to remember without help (notes, family members intervention, etc)
• trouble following familiar recipes
• lack of or difficulty in concentration
• difficulty doing familiar tasks (heating in a microwave, TV controls, etc)
• taking a walk and losing your way
• visual images are confusing (difficulty in reading and judging distance)
• difficulty speaking or being part of a conversation due to forgetfulness when trying to form words
• misplacing items and inability to retrace steps (not uncommon to accuse others of stealing)
• judgment decreases in regards to handling money
• personal hygiene may suffer
• removal of one’s self from normal activities; becomes more introverted
•  mood and personality changes may occur (suspicious, depressed, etc)

It is important to remember that a person may be experiencing some of these symptoms and not have any connection to having EOA.  A proper diagnosis needs to be made by a knowledgeable physician.  It is also important to remember that if diagnosed with early onset Alzheimer’s disease, a person may only experience a few of the symptoms listed above while another, several.  Each person is unique and the disease is unique to each person, although similar in many ways.  The best advice when determining whether you or someone you love may be experiencing EOA is to see a physician.

Journeying with you -

©2012 Sherri Woodbridge

In response to a question posed to those with Parkinson’s disease, “What were your first symptoms of PD?”, the following is a list of answers – an important reminder that PD affects no two people the same way.  (FYI – Since this post was originally published, it has been updated and includes newer responses that may not have been previously mentioned.)

…First thing I noticed was that I was having a hard time with my balance. …I was working as an order and receiving clerk, so I was on my feet quite a lot. I had this counter that I used when checking in merchandise and I would find myself leaning against it to get some support…I found myself also actually curling my toes to help with balance. To this day the toes on my left foot are curled down. About this same time, I noticed that my hand writing was getting worse and worse and went on to being very small. Then shortly before I was diagnosed with PD, I was walking in the Mall and started feeling very strange and was having a very hard time walking. At this point I also noticed I had little or no arm swing. Shortly after this I was dx. It had taken almost 2 years to get it figured out. Within a few days of starting meds, I felt like a different person.

…right thumb would twitch and I thought it was stress and being over tired. It has progressed to my whole hand and sometimes arm shakes and my head bobbles and when the meds do wear off, I can feel my whole body tremble.

…a tremor in my left hand then my neck would sometimes feel like it was vibrating; arms didn’t swing when I walked. …8 yrs later my balance is bad – I fall sometimes; no tremors because meds help that. …fatigue is horrible. Seems like everything I try to do I end up needing help.

…Left hand tremor, stiffness and slowness for me.

…my hand witting. It had gotten quite small and seemed to always slant down. Then came the balance and my legs started just feeling strange and on my right side I started noticing I had no arm swing.

…intermittent pain/spasm in right neck that massages, chiropractors, and acupuncturists could never fix. For five years I had what I thought was an “intention” tremor of right fingers until a friend saw me at rest and said “Is that a little Parkinson’s I see?” Denial. About that time my handwriting was so small even I couldn’t read it.

…intention tremor and uncoordinated trying to put shoes on. …ratcheting in neck.

…a right hand tremor and a feeling of unbalance.

…slight tremor on left thumb.

…my left arm wouldn’t swing while I walked. Soon after my left would shake to a point my entire arm is one big tremor. My left flank is on and off in a rigid state.

…tremor, stiffness and slowness in my left hand, combined with dizziness, somewhat sudden loss of coordination and most of all fatigue.

…stiff right neck, tremor and slight weakness left arm, then slightly dragging right leg—but agree most debilitating symptom is fatigue like I always have flu. …tightness in ribs so that I can’t quite take a big breath.

…handwriting became atrocious. Then I discovered I could barely wiggle my right toes. Then it felt like I had to drag my right leg. It seemed dead.

…started with a tremor in my right hand. I had several people ask why my hand was shaking. At that point I also had a pinched nerve on my right side witch made my hand numb.

…handwriting became smaller with each line. I felt “anxious” and tense with slight tremor and dizziness.

…tremor in left hand and extreme fatigue.

…Gait issues/weakness in legs and rigidity had to be my first signs.

…tremors both hands/wrists/arms and even both legs at times too.

…NON-MOTOR symptoms such as multi-tasking, organizational skills, prioritizing, memory, anxiety, insomnia, fatigue (these last 3 have been mentioned). …Restless Leg Syndrome, cramping toes, and there is the loss of the sense of smell, sometimes taste goes along with it. …I began to notice that my right arm didn’t swing, I caught the ball of my right foot – wearing new shoes and employer had installed new carpet, I told myself – and would stumble. …my right foot would bounce if I crossed my legs or didn’t have it planted. Next came the MJF pinkie flutter, the index finger and then the thumb.

…tremors …then came the pure exhaustion. I felt like just sleeping on my porch, I was too tired to get up and go to bed. My legs hurt bad, had muscle pain and cramps.

…slight tremor in my right hand last year followed by a frozen shoulder. I developed major anxiety that I have never experienced before and then a weird feeling in my right foot that impaired my walking.

…right hand tremor plus a numb feeling in my two little fingers.

…noticed my right thumb shaking… occasional drool is also a symptom.

…fingers not flexible; hard to wiggle/maneuver them…very tired/sore back; trouble walking; slower

…exhaustion…shake uncontrollably when excited, angry or scared. …a gait.

…tremor of my right hand….at times my whole arm would stiffen and ache…shaving was a nightmare. I was in denial for quite a while after diagnosis.

…left hand tremor especially noticeable when I was eating.

…tremor in my left hand. …loss of smell and shoulder problems were also symptoms and I had those years before the tremor.

…balance not so good; handwriting got real pinched.

…left arm didn’t swing and I was starting to drag my left foot. …heel made a scuffing noise.

…loss of movement in my left arm.

…tremor in my right hand/foot. …sore joint and even a bump at the sterno-clavicular joint (at the top of the sternum where the clavicle connects to it).

…right leg resting tremor, which got worse with stress…whole right side is affected, hand writing is weird sometimes, thinking it’s not so straight, and I limp a bit

…micrographia (tiny, undecipherable writing).

…the movement of my fingers on my right hand. I couldn’t wiggle them. Then I started noticing my back would ache, especially if I was tired.

…lack of coordination with my left side and falling – then tremor in my left hand.

…tremor in left hand; rigidity; terrible handwriting

A heartfelt thank you to all who contributed!
Journeying with you ~

©2012 Sherri Woodbridge

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 experiencing(healthwise) some different things. I was getting extremely tired. My eye began burning and I kept seeing bright reds and yellows. 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 my kids would play. During the middle of my 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.  I knew what MS stood for – vaguely what it was.  I answered.  “No.”

At my response, he excused himself and walked 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 you’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-up 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 Parkinson’s disease. 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 Parkinson’s disease 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., 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 what they 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.

Journeying  with you ~

This picture was taken for Time Magazine several years ago by Ben Baker. It was inserted into an article regarding Fox’s fight for research for Parkinson’s.

I was looking up articles on Fox, always fascinated with him as I watched him grow and go from Family Ties to Back to the Future to now – living and breathing a disease that changed his life.   And mine.

MJF was diagnosed at the age of 30 and while I was finally diagnosed with Parkinson’s Disease at the age of 45, it actually began at 31 or before, when it was misdiagnosed as Lupus, with the possibility of it “becoming a more definitive diagnosis of something else”.

Looking at this picture of Fox, I see myself so clearly. Looking like a normal 47 year old human being, yet in a corner with a disease, a diagnosis, a turn in the path that was unexpected. You are young and yet you feel so much older than you look and at the same time, you can look so much older than you feel.  At least in your head!

Michael’s hand holds him balanced as he sits on the floor.  As I look at his hand, I see stiffness, rigidity and a hand that has a mind of its own. It looks like a hand that has been a victim of a stoke to me, but as far as I know, he hasn’t had one of those. He has Parkinson’s Disease and his hand looks like mine feels.

I sometimes feel lost in a corner, lost in the world with a disease I’m not quite sure what to do with .  A disease that leaves me sometimes wanting to hide in a hole.   Tired, hurting, uncertain – wanting to find refuge where someone might understand for supports sake and not pity.  Looking for a corner where a friend might be found.

I look at this picture of Michael and I see strength and determination.   Qualities I hope to possess.  The quality of strength that endures and fights and a determination that presses on and never quits or gives up.   A calm and gentleness that says “I understand” and  determines that to quit is never an option.

And yet, the tiredness that comes with Parkinson’s Disease is obviously evident in this photograph.  A tiredness that says the pain is real.  The medications are tiring.  The fight is draining.

The good, the bad, the ugly.  It’s all there.  In that picture.  The picture of a thousand thoughts.  A thousand feelings.  A thousand words.

Journeying with you ~

Team ALI-FOX!

Whether you’ve got ‘regular’ Parkinson’s disease (disease manifests itself after age 55-65) or have been diagnosed with Young Onset Parkinson’s disease (PD manifested before age 50), sooner or later you’re going to want to talk to someone who really understands – someone who’s been there and fighting their battle to win.

A support group is like a team.  There needs to be a captain – someone who leads, keeps things going, encourages the team, downplays the negative.  In order for the team to perform well, each player needs to be in the game.  Just because you’re part of the team in number, doesn’t mean you’re ‘part of the team’.  Bench sitters don’t appear to contribute a whole lot but some do and others certainly can.  Bench sitters have  a great opportunity to offer encouragement to their teammates.  To offer  a cup of cold water when a team member runs to the sidelines.

As a player on a Parkinson’s team, maybe you’re a bench sitter right now, not fully able to participate; but you sure can cheer those on around you.  And if you’re a player who is still able to move freely without many constraints, don’t forget about the bench sitters who long to be in the game, but find themselves ‘benched’ for now, through no fault of their own.

And – remember for every team, there are fans.  They faithfully come out, watch the tough plays, and cheer on the team from the sidelines.  They are there in the rain, the cold and biting wind, the hail, the scorching heat, the stormy winds…  No matter the weather, they always show up.

Whatever part of the PD team you’re in or on, you’re not alone.  As a patient or caregiver, contact us if you’re feeling isolated and need some encouragement.  That’s why we’re here.

Journeying with you,

 Some guidelines:

If you know a person who has Parkinson’s disease, don’t ask them “What’s wrong?” or “Are you okay?” if they aren’t wearing a smile.They may very well be smiling on the inside but have lost their ability to move the muscles that allow them to smile on the outside, where you can see.  Believe me – they’re aware of it.

Also, don’t judge a person’s happy-meter by the expression on their face. How often have you put on a smile while in pain on the inside? The opposite is often true for a person with PD – they are smiling inside but again, may not be able to convey it.

Remember the old saying, ‘Don’t judge a book by its cover’? Well, everyone has a story to tell, so that makes us all books.

Please… don’t judge us by our smiles (or the lack thereof). 

Journeying with you,

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I have this little monster
It was a gift, a blessing you see
I didn’t ask for it, wasn’t shopping around
But it was left on my brain’s doorstep, quite anonymously.

At first I wanted to send it back
Refuse the gift given to me
I’ll toss it out – I’ll throw it away
But alas, it was mine to keep.

Little Monster makes me do crazy things
And feel a little crazy too
He makes me sleepy, move a little slower
Doesn’t let me always do what I want to do.

Somedays I want him off my back
Far away, never to be heard of again
But I’ve learned to turn Little Monster
From a monster into a new kind of friend.

Little Monster has allowed me to see
Suffering and sorrow in a different way
And how the pain Little Monster brings
Affects its recipients from day to day.

Little Monster stays quiet in a little pocket
Deep inside my head
Some people never see him
Some people have seen him, or so they’ve said.

I can see him and feel him and touch him
For he’s with me every day
Staring back at me in the mirror
Reminding me this is not a game.

But I play this card called ‘My Life’
Putting everything in it I’ve got
All my resources, my time, my everything  – all
It’s not much, but I call it a lot.

Someday I will take Little Monster from my brain pocket
Set him down, and as he’s staring back at me
I’ll say enough is enough, good riddance to you
You’ve taken enough of my energy.

Then I’ll pull up my foot and slam it back down
Smashing the pejeepers out of that little guy
Because when all is over and everything’s been done
It’s who you are in your heart and not what’s making you shake outside.

I may have PD, but it doesn’t have me
That’s my new motto in life for today
I’ll live however I can, give what I can with what I’ve got
And thank God for whatever comes my way.

  © 2007 Sherri Woodbridge