Blessings In Disguise

"Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed."

Isaiah 54:10

Editors Note: I have held back and been cautious about what I should share. Tonight, I am stepping outside a very comfortable zone and will start with my pain. Over the next few blogs I will talk about my physical challenges, speaking and eating challenges and finally the hardest one my memory.  Remember each Parkinson's sufferer is different and each day can be a different challenge. 

Have you ever stood in a crowded room and felt all alone? Had a conversation and wonder after it was over what was said? Have you ever wondered ? I mean really wondered? I ask myself lots of questions and I ask God lots of questions about all that is in my life and sometimes I wonder can he hear me? Can he really understand what I am asking?


When I started "My Journey" I was eager to share and chat about all that Parkinson's was doing to me and for me. Yes, FOR ME!. Even when you are dealt a bad hand there are still great things that come into your life and we must learn to embrace it all good and bad.

One of the greatest challenges for me recently is knowing what I should share. Not that any of it is embarrassing or that I have any secrets. Anyone that knows me knows that all they have to do is ask and I will openly share all that I face. I will also share all that God has done in my life during this challenge. 

People have many reasons why they keep information about illness private. One reason may be embarrassment. Another may be privacy. Then there is the concern that others may not understand. There is also the worry of being judged. No matter what the reason these concerns can be real and personal. 

For me, all of the above can be part of why I have been a bit silent about the news lately. There is also the fact that I thought I could hide my challenges well. I mean to look at me I actually look pretty good. I have lost 35 pounds and the meds have helped with the trembling. Of course the weight loss was not planned but that's what you get with a new disease and new medications. 

Then this week there was the realization that I am not fooling those who know me best and one who sees me daily said "you really are not hiding it we just are making this journey with you and not judging the situation but praying with you."  

So here is what has been happening lately in my life and in the life of those who make this journey with me.

My greatest challenge is pain. Ever since my brain surgery I have had continual challenges with pain. However, over the last year I have really struggled with hip, back, leg and arm pain. My leg cramps can be awful as well.  I thought that I must have lifted something wrong and tweaked something but it does not go away. So in August they started looking for a muscular disease. This can be scary and it was something I chose to not share.

Those tests came back negative. That is great but what is it?

According to the American Parkinson's Disease Association:

Of the many symptoms of Parkinson’s disease (PD) that can be disabling, pain can be among the most severe. Not only is pain typically not recognized as a manifestation of PD thereby resulting in tedious, extensive and often fruitless evaluations to identify the etiology, but once identified as PD related, effective treatment can be elusive.

It is estimated that approximately 10% of people with PD will have pain as their initial presenting symptom, preceding any motor complaints. Furthermore, recent published data suggests that up to 50% of patients manifest significant painful sensations during the course of their PD. The challenge for physicians and patients is to recognize when these complaints represent a component of another serious illness and when it may be a non-motor feature of PD. This is especially difficult because the painful symptoms may mimic other painful conditions such as a low back pain, sciatica, joint aching, dental pain, gynecologic discomfort and abdominal discomfort. 

It is shown that 82% experience pain with their illness and the pain they experienced is often severe. Interestingly, for younger patients (those under the age of 60), the most frequently cited areas of pain were the shoulder and foot. For those over the age of 60, it was the neck and/or back.

When a PD patient faces pain as a symptom, a thorough and frank discussion with the neurologist should take place. 

My neurologist said that we had to take a step by step process to rule out what was causing the pain. Too often PD patients suffer from pain and do not report it because PD comes with pain but sometimes that pain can be caused from something else so you must investigate it. 

I had a CT scan and it showed arthritis in my back but it was not believed to be the issue. Next Physical Therapy. After the first session my therapist said this is probably not going to work. I last three sessions. The next step MRI to determine if its my body, back or what? If this comes up inconclusive then we know its the Parkinson's. 

 Late night and daily leg and arm cramps are constant as well. This is not unusual for PD sufferers and at times it like the are twisting my feet off my legs. Last night I found that if I put my shoes on the twisting stops but the leg cramp continues.

One thing that helps is taking a spoon full of mustard. No sugar. Straight mustard. Often that calms the pain down. Interesting that a little mustard seed can produce relief. But what does the bible say about faith and a mustard seed? Look in the book of Matthew.

 What does the bible say about any of this? There are so many challenges. So many sleepless nights I have sat in pain and prayed for guidance, relief, and wisdom. I must admit one night I even asked God to "Please appear right this minute and give me a hug." At least I said please.  There are many sleepless nights for me during this journey but I never feel alone.

The bible says:

God is able to meet all my needs.
2 Corinthians 9:8

He does just that. He puts his shield around me and he sends me what I need. Peace found in friendship. Grace in times of pain and embarrassment. A wife that is so perfect! I cant believe that I was blessed to live with such a perfect love. The love that God sends to all of us. In the worst of times I face each day with the challenges and I face them because God is with me.

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

So today was rough. Tomorrow is a new day. I am not sure what will happen between now and tomorrow when the sun comes up or what will happen over the next few years of my life. But what I do know is that all things that we are presented with in life are blessings. They make us stronger and they make our faith stronger.

I know everyone faces challenges so I pray you find peace and understanding. Most of all I pray that you will continue to find comfort in your relationship with God to tell him your needs and place them at the cross. Tell God how much you love him and let him work in your life. He has great plans for us and I know that what he has for me will be amazing and will carry me as I make "My Journey."

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise