Monday, August 25, 2008

August 25/2008

This past week I was reminded again of the fraility of life. I attended a funeral of an infant that was born perfectly healthy and contacted a viral infection and died after two weeks of life.
I thought to myself, how fair is that. Some people get to live a long time while others barely get to experience life at all. Even though some things in this life just don't seem to make any sense at all, I remind myself that God is in control and I need to put my trust and faith in him. I found this poem which helps me realize no matter what we face, we can still praise God.

I Still Will Praise Him
If I never see another dayOf sunshine here on earth,I still will praise the great CreatorWho gave to me new birth;And if I never see a brilliant moonOr sparkling star again,I still will praise my Heavenly FatherFor His great love for man.

When dark clouds hover all around me,And I can see no light,I just turn my eyes upon JesusAnd everything looks bright;In the midst of darkness and sorrow,He undergirds with care,And I can face each new tomorrowJust knowing He is there.

God’s great kingdom shall ever prevail,No matter what may come,And His people are ever secure,Abiding in His Son;He is my Refuge, Hightower, Strength,Great Redeemer, and Friend;Though the mountains tumble to the seaAnd all around caves in…I Still Will Praise Him!
~ Connie Campbell Bratcher

Friday, August 22, 2008

One Day At A Time

“One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.”

I read this and thought about how true it is. That pretty well sums it up for me, one day at a time. Today is all any of us have.

Monday, August 18, 2008

August 18,2008

Yesterday we had church at Gap Park. The weather was absolutely wonderful and the food was delicious. The worship team really sounded great. I was wishing I could still be a part of the team. I really miss not being able to play guitar any more. I always looked forward to Sundays so I could play.

But in spite of all my losses, I still have so much to be thankful for, my family who support me so much, my church family that support us with their prayers and host fundraisng events to help with medical equiptment and supplies that insurance won't cover, and my wife and sons who are always there for me when I need them. Even though I'm extremely limited to what I can do, I think that I am still able to remain fairly indpendent.

My son Clint is getting married in the spring, so that is something I look forward to and am excited for him. By the look on his face, I think she probably said yes. LOL!

Thursday, August 14, 2008

ALS Clinic Visit

Every three months I go to Hershey to the ALS Clinic. The purpose of these visits is to assess my condition and make suggestions to help me maintain quality of life. I meet with the clinic nurse, the neurologist, occupational and physical therapist, pastoral counselor, social worker, licensed professional counselor, and research coordinator, The MDA representative.
I lost some weight, lost a little more strength in my arms and hands but my breathing went from 85% last visit to 93% this visit. That is good news because that means the muscles used for breathing are not getting weaker. All in all it was a fairly positive visit. Due to the increased weakness in my hands the OP suggested looking into voice activated typing software. I'm also getting these fuzzy looking boots to wear to bed to relieve the pressure on my heels when I sleep.
They should keep my feet nice and warm this winter. My feet are always cold due to poor circulation.
We are also looking to replace our current shower with one that has no step in the front so I can wheel right into the shower with a shower chair. It is so hard for me to step up into the shower the way it is now.
Thank you all for your continued support and prayers.

Tuesday, August 12, 2008

Random Thoughts

The last several days my thoughts have been with Carl and the family. For those of you that don't know Carl he is a friend of mine who had a motorcycle accident that left his legs all busted up. I'm praying for a complete recovery for Carl and peace and strength for the family. Thank God for giving us doctors that have the knowledge and skill to do what is necessary to help our bodies heal.

Sometimes I struggle to make sense of it all. Why does God allow these types of things happen to us?

I firmly believe that God could heal me in an instance but then I think, what makes me more special to God than the millions of other people that need healing. Like the children in Africa stricken with aids and starvation. God loves us all right? In the Bible, Peter tells us not to be surprised at the trials that come upon you, but rejoice as you share Christ's sufferings so that we may rejoice and be glad when his glory is revealed. To be quite honest, I find it hard to rejoice in my suffering, but I'm trying.

I'm looking forward to tonight when some of my friends come and we hang out at a restaurant and have fun. I'm thankful I can still get out some.

Sunday, August 10, 2008

Reason for Blog

I thought about doing this for some time but kept putting it off. I will attempt to keep everyone informed as to how I'm doing, what some of my needs are, share my feelings, and how you can pray for me. Your support is greatly appreciated and helpful for me as well.

My Diagnosis

I was diagnosed with ALS in April of 2006.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive wasting away of certain nerve cells of the brain and spinal column called motor neurons. The motor neurons control the voluntary muscles, which are the muscles that allow movement. ALS is a progressive, disabling, usually fatal disease. Walking, speaking, eating, swallowing, breathing, and other basic functions become more difficult with time. . In most cases it does not affect intellect, memory or the senses..The life expectancy of an ALS patient averages only two to five years after diagnosis. There is no known cause, prevention or cure for ALS at this time. In the United States and most other parts of the world, 1 to 2 people per 100,000 develop ALS each year.

It was sometime in the summer of 2004 when I was walking my dog that I noticed my left foot would slap the ground as I walked. it wasn't long after that I began experiencing foot drop and tripping alot and started having balance problems. Dec. 2004 after seeing an orthopedic doctor because of hip pain, I had x-rays taken and everthing was normal. He did some reflex testing and told me they were abnormal and suggested I see a neurologist. After 3 months I was able to see a neurologist. He did a complete examination and ordered all kinds of tests. MRI, blood work, lumbar puncture, and a EMG. His original suspicion was that I had MS. None of the test results proved anything conclusive. Then he ordered a CT scan and mylogram which came back negative. He just labeled it as idiopathic spastic paraplegia. He suggested waiting six months and redo some of the tests or I could get a second opinon. I opted for the second opinion. August 2005 I got an appointment at Hershey Medical Center with a neurologist specializing in ALS. He ordered some more tests and did an extensive EMG which basically revealed the same thing, spastic parplegia. There wasn't sufficiant evidence at that time to prove it was ALS. To make a definite diagnosis for ALS, you need to have both upper and lower motor nueron disease. He said I should come back in three months to see what changes I had or if I continued to progress. After six months of montoring my progression, he did another extensive EMG. The test results were convincing enough to rule it as ALS. April 6, 2006 I had a diagnosis ALS.
Even though I suspected that I had ALS because of all the research I did on the internet, hearing it from the doctor was devastating. Needless to say the trip home from Hershey was an emotional one. We cried, we wondered what do we do now, to silence. I knew from that moment on our lives were about to change forever. I had to leave my job because I struggled to do even the simplest of tasks. Within a year I went from using a cane, then a walker, to a power wheelchair. To date I cannot walk, go up stairs, need help with bathing and dressing.
This disease will eventually take away my ability to do many of the activities of daily living we all take for granted. Despite the devastating nature of this disease, I will not lose my faith in God. I refuse to let ALS cause me to become an angry or bitter person. I will use faith, hope, courage, love, and laughter, to help me make it through each day. I know he will provide me with the strength and courage to take me though each day.