Tag Archives: Parkinson’s disease

Medford’s Sole Support for PD

The Sole Support Walk-a-thon was a huge success!!!

Our town raised more per person than the rest of the state and considering Medford is one of the more depressed areas in Oregon, that’s a big deal!

We (myself, Josie, Ken, and the invincible Finn {who is checking out the balloons in the photo below}) did the 1k walk quite successfully. No tripping, no falling…

Our team (Team Grammy, as Finn aptly named us) raised 3 times our  personal goal, thanks to many of you.

Finn’s mommy made an adorable custom shirt for him, which is modeled in the last two photos.

We were able to meet some other local PWP’s and see Holly Chaimov, PRO’s director, hear the Uke-ladies, meet some healthcare vendors and more.

Thanks to all who supported my team and I, once again.

You are a huge encouragement!!!


Grammy’s Team


The Invincible Finn and Mommy


The Uke-Ladies


Holly, myself, and Melissa Moran


Finn, Mommy, myself

(picture courtesy of Holly Chaimov)


I Am My Own Worst Advocate

The other day I stood at my window and watched a man walk down the street. He looked suspitious and he was walking funny. Suspitious because he was checking out every house as he passed by each one and was a bit unkept. Walking funny because he seemed a bit off balance, as if he may have stopped by the local tavern before taking his walk.

I voiced my thoughts verbally to husband who was in the room with me. The moment my judgmental words escaped through my lips, I knew I had made a mistake.

Ten minutes later the same man came walking back and checked out the neighbors front yards and carports, still seeming a bit off balance in his gait. And then he turned up one of the driveways a few houses down and I realized who it was.

Not a stranger, casing houses while the occupannts were away from home, but someone who I didn’t recognize as he’s gone 80% of the time, traveling for his work. And he has a funny walk that makes him look a little off balance, but because I don’t know him well and don’t see him often, I didn’t know it was him and erroneously passed judgement.

I am my own worst advocate.

How many times have I read about the symptoms of Parkinson’s disease and how they are misinterpreted by mis- or uninformed individuals who judge what they know very little of? How many times have I fallen victim to such ignorance?

And yet, there I stood at my window, heaping ignorance upon ignorance as I wondered if the man I was observing was snockered. Just as soon as I had voiced it, as I said earlier, I knew I had done the same thing all those people do when they ask, “What’s wrong with you? You never look happy anymore.” (In reference to the stone face syndrome.) Or, “Do I really make you that nervous?” (In reference to shaking/trembling while holding a conversation with a friend.)

They  (‘those’ people) don’t know any better.

I do.

If I am going to be  an effective advocate for Parkinson’s disease, I need to not be doing what would be expected from someone who is uneducated in PD – making assumptions as to why someone is behaving, acting, moving, or speaking a certain way. There are so many invisible diseases and the truth is, you never know who is fighting what.

Are You Reay to be Loved? RUN!!!

orange_poppies.JPGWhen my son was born, until the age of almost three, he had constant ear infections.  After the third or fourth time, it became easier to identify that another was coming on and I could get him to the doctor before it became too painful.  Most of the time.

I do recall one experience of having that motherly instinct of knowing he was getting another and taking him in to the doctor.  His regular doctor was out and another doctor saw him.  He assured me after checking him briefly that there was no cause for worry.  I wanted to assure him that I was most certain he was wrong.

At twelve o’clock that night, my son woke up screaming, his ear filled with pain.  I did everything I could to help him.  I gave him Tylenol.  I held him.  I rocked him.  I cried with him.  He screamed in pain until morning.

A few weeks ago, I had an ear infection.  It began with a gradual achiness followed by intense pain and pressure for about five days, at which time I felt it was going to burst and to be quite honest, I almost wanted it to just to relieve the pain and the pressure.

No one ever gave me Tylenol.   No one held or rocked me or saw me crying in the dark when I could not sleep because the pain was so intense, but then, they did not know because I was not crying out in agony.

This is what I learned…

When my son, at the age of two, was in pain, he writhed in discomfort and screamed for release from the grip of his ear infection.  Oh how I wanted to comfort him and hold him tight so that he knew he was not alone.  I rocked him to try to soothe him and as I held him closely, I cried with him, wanting badly to be able to take his pain away.

When I was in pain a few weeks ago, for the most part, I kept it inside.  No one else needed to hear how much it really hurt.  No one could rock me and comfort me and it made me think…  Isn’t that what God wants us to do with him?  Yet, we try to keep the pain in our lives and the heartache we experience hidden deep inside, when all the while He is waiting for us to cry out to Him for help.

A friend was saying that another of her friends was not going to be able to do an event that they had planned for this year.  She said the other person had been having some recent struggles and had to cancel.  Then she withdrew and ‘disappeared’ (not literally) from her network of friends.  My friend made a comment that went something like this: “I’ve told her there’s still a spot for her on the team, but she’s got to walk through the door.”

I liked that.

Do I sit and suffer, failing to run through the door crying out to God for relief? The only One who can truly subside the pain? Do I writhe in pain when it hurts so bad inside that I think I cannot tolerate it for another minute or do I run quickly, first, to the One whose arms are always open wide and waiting? The pain of life can come in a foreclosure on the only home you have known.  A divorce.  An illness.  The loss of a loved one.  You lose your job.  The list goes on.

Sometimes that is the only thing we can and should do.  Sometimes that is the best thing to do.  To become like a child and run into the arms God and just let Him hold you and rock you. Let Him soothe you and wipe the tears as He wraps you safely in His arms.

He is waiting to love you.  Are you ready to be loved as only He can do? Then… Run!



I am one of those people who could easily, depending on the size (of course), wear the shirt that says, “I’m correcting your grammar in my head as you speak.” For as often and as many mistakes as I make in typing, whether it be grammatical or in the area of spelling or punctuation, it still bothers me to see spelling errors in something typed professionally that I know was edited by someone. Or punctuation done improperly. Or ill-grammar usage. Even though it is a pet peeve of mine, I make just as many blunders and they slip by unnoticed. I don’t get frustrated with the writer (myself excluded), just over the mistakes. Maybe it’s part of having OCD (obsessive compulsive days).

Unfortunately, it happens now, more than ever. Take today for example…
I filled out a form today that asked my name, my email, and to check a little box. That’s it. So, I filled out my name, my email, and left the little box unchecked.
37 seconds.
37 seconds is what it took to fill out my name, my email, and the ignore that little box.
I used to type at 72 wpm. When I first started having tremors it began to decrease to 65, then 60, and who knows what it is now – probably 10-ish or even less. And it frustrates me because one of the greatest joys in my life is writing.
Writing articles, children’s stories, devotions, inspirational stories, and so much more. But it can be sooooo frustrating because the going can be sooooo slow and full of errors and mistakes and going back and fixing and fixing and fixing. Whatever the reason, I keep doing it because I love it and believe that for some reason that I don’t understand, God wants me to keep doing it. Perhaps it’s because often it is therapy for when I am weary. Perhaps it’s encouragement for others. Perhaps it’s something else.
I don’t struggle with tremors as much after having surgery for DBS (Deep Brain Stimulation), but I do struggle with making my fingers work the way I want them to. They seem to have a mind of their own. Yes, I want to throw the computer out the window sometimes. Writing by hand isn’t an option. No one would be able to read it by the second line.
But… I keep on. I have to keep on. I don’t have an option. Writing is a lifeline. It is a joy. It is a gift God gave to me and since He hasn’t asked for it back, I will keep using it as long as I have breath. Until then, anyone know of a really good program for those who are ‘writing-impaired’? I’m trying to better my typing speed.

Where Does Your Strength Come From?

imageGrieving can and often does involve suffering, sorrow, sadness, hurt, depression, a feeling of affliction, and more. Grief is most commonly related to and thereby put into a category of death and dying.  However, grief covers so much more than our expression over the loss of a loved one.  

I was reading a verse from Nehemiah 8:10 which says, Do not grieve, for the joy of the Lord is your strength. Grieving can be an every day part of life for someone with a chronic illness like Parkinsons disease.  The first occasion to experience grief is upon diagnosis.  You realize that from that moment on, nothing will ever be the same.  There was no physical death, but eventually you realize that life from that day forward will be looked upon differently.  Some days will be looked upon with grief in the form of sadness and sorrow while others will be met with smiles and laughter.  Our path will not have necessarily changed, but we will face it with different emotions.

People who live with a chronic illness can be easily upset with life if they feel theyve been dealt a hand they dont deserve or refuse to accept.  This is a form of grieving in the way of anger and of asking why.  Why me? Why this? Why now? (As pondered in the justified mind of a Young/Early Onset Parkinsons patient.)  The whys of life can leave a person grief-stricken, as they can be hard to make much sense out of and/or hard to understand, if not impossible.  This can often lead to a deep sadness or depression and weve learned that depression is one part of the whole picture that patients often have to deal with, (It is wise to seek treatment if you are in this stage of grief.)  You may be waiting for a good day to come and, if youre fighting depression along with all the other challenges PD has to offer, that good day may not come.  


Affliction comes in several different ways through Parkinsons disease.  Pain, tremors, lack of balance, difficulty swallowing – the list goes on and on.  Each day we encounter different tests’ this disease seems to constantly give.  Will you lost your balance and actually fall this time? Will the tremors cause you to withdraw from the social activity you scheduled for the day?  Will the pain rob you of doing what you love?  Will going out to lunch embarrass you should you begin one your choking spells? The list of afflictions doesn’t end there.  We can feel slightly pricked or punched hard in the gut, depending on the severity of the test.  Its a state of misery that leaves you feeling helpless, sometimes hopeless and hopeless is such a dark place to be.  


There is hope.  I started this out with a verse that I had read today.  Do not grieve, for the joy of the Lord is your strength.’  Its not always easy to not settle in with grief as our companion.  Life as we once knew it has changed and some days have been replaced with deep sorrow over what we have lost or may lose.  Anticipation has been replaced with anxiousness and fear.  Fear of the what ifs.  Borrowing trouble from tomorrow.  Thats what the’what-ifs’ are made of. Tomorrow’s un-guaranteed trouble.


Instead of what-iffing ourselves into depression and sorrow, let’s learn to allow the joy that comes from the Lord to be our strength. Let’s replace sadness with hope, sorrow with thanksgiving, grief in its entirety with trust. His joy will build us up through this trial of life called Parkinson’s disease and keep us from falling into the abyss.  And joy is so much better, don’t you think?

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