Clinical Trial

A recent online article dated June 4, 2015 regarding a planned clinical trial peaked my interest.  It seems the way has been cleared for the beginning phase for a clinical trial of a Q-Cell product  in patients with ALS.  Q-Cells are glial-restricted progenitor cells or GRPs, which are early descendants of neural stem cells that produce only glia.  Glia make up 50% of cells found in the brain and are essential for supporting, maintaining, and even restoring neuron health.  Animal models of ALS and other central nervous (CNS) diseases have demonstrated that delivery of healthy glial cells into the brain and spinal cord has the potential to modify the course of currently incurable CNS diseases (such as ALS) and CNS injuries. 


Someone in the world is diagnosed wit ALS every 90 minutes, and current therapies are not much better than when my husband was diagnosed in 2003. it seems more promising to me than other clinical trials because it, if I am reading correctly, involves some derivative of stem cells.  Since that time there have been thousands of people diagnosed with this horrendous disease.  I hope and pray that this will prove at least to be a beginning milestone in the quest for better treatment, or "Please God" even a cure.


For more information visit www.qthera.com 

Yesterday, Bill would have been 78 years old. I still miss him.

I cried when you passed away.
I still cry today.
I tried so very hard,
but couldn't make you stay.
A caring heart stopped beating,
hard working hands at rest.
God broke our hearts to prove,
He sometimes takes the best.

INFLUENZA VACCINE

Influenza is a contagious respiratory illness caused by a flu virus. As many as 20 percent of US citizens will get the flu each year. Flu season can start as early as October and last as late as May, with the peak months being January and February. The vaccine is offered throughout the flu season. However,it takes approximately two weeks for antibodies to build up to provide the necessary protection. It is best to get the vaccination by October. Symptoms of the flu include a sudden onset of fever, muscle aches and pains, fatigue, and headache. Complications of the flu may include dehydration, sinus infection, and bacterial pneumonia. People with ALS are considered high risk for flu complications. They often face challenges related to weakened swallowing and respiratory muscles including difficulty mananging saliva, coughing, and clearing secretions. A major complication for the ALS patient is pneumonia. Generally the flu vaccine is recommended for the ALS community, but it important to check with the physician for advice regarding the vaccination and any contraindications or precautions. It is important that family members and caregivers, as well as those in frequent contact with ALS patients, take steps to protect themselves from getting the flu. Some simple precautions can be taken to lower the chances of contacting the flu virus. As much as possible avoid rubbing the eyes, nose, or touching the face. Wash hands frequently with soap or use hand gels when necessary. Avoid large crowds, and avoid family, friends, and other people who have cold or flu-like symptoms. For more information as well as where to get the flu vaccine in a specific area, go to www.cdc.gov/flu/protect/keyfacts.htm

PATIENCE VS PRESENCE

DO NO MISTAKE GOD'S PATIENCE FOR HIS ABSENCE. HIS TIMING IS PERFECT AND HIS PRESENCE IS CONSTANT. ...AND SURELY I AM WITH YOU ALWAYS... MATTHEW 28:20

WHY SUFFERING?

This Easter season we are again reminded of the harsh, tremendous suffering that Christ endured on the cross. His suffering was required to pay the great sin debt for human kind. Christianity began with twelve Apostles and the Apostle Paul.  All the Apostles with the exception of John were executed, most by horrific means, for their faith.   Those few individuals have grown today into many millions of Christians wordlwide.  Many Christian martyrs and missionaries have given their lives to spread the gospel of Christ. Not a day goes by that we are not reminded of human suffering, so there must be a plan or a reason. Why does God allow His children to have trials and tribulation; to suffer? Christ Himself said, " If any man desires to come after Me, let him deny himself, and take up his cross, and follow me"... Matthew 16:24

There are those who will not accept a Christ that allows suffering; they expect a life without trouble and say, "God would not do that." But as humans we are unable to comprehend the mind of God and why He allows trials and trouble.  I believe there are many reasons for suffering that God in His wisdom uses for purposes we are not able to fully understand. I strongly believe He expects us to use our suffering to comfort and help others, which is what I attempted to do in this book. I also believe that according to His mercy, He prepares us for suffering. We only have obey and to trust what He tells us in His word.

"Bessed is the God and Father of our Lord Jesus Christ, the Father of all mercies, and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God."
                                                          2 Corinthians 1:3-4

"Though He causes grief, yet He will show compassion according to the multitude of His mercies.  For He does not afflict willingly, nor grieve the children of men".
                                                      Lamentations 3:32:33

"For I consider that the sufferings of this present time are not worthy to be compared to the glory that will be revealed in us"...
                                                                    Romans 8:18

New Help for Breathing

I recently read somewhere that 340 ALS patients would die on each of the 12 days during the London 2012 Olympics. Close to 5,000 funerals would be conducted during those 12 days because of the devastating effects of the disease.  Death is usually caused by respiratory failure.  I recall wih horror Bill's minute by minute struggle to breath with little help to offer except a ventilator, which he did not want.  It was with a glad heart that I learned about a new treatment to assist with breathing problems in ALS patients.

The FDA recently approved the NeuRx Diaphragm Pacing System or DPS by Synapse Biomedical Inc. In ALS patients, the phrenic nerve which stimulates the diaphragm to contract to assist breathing fails, and the person loses the ability to breathe without a mechanical ventilator.  The device is aimed at electrically stimulating the phrenic nerve to cause muscle contraction much like a cardiac pacemaker stimulates the heart to contract.  This helps the patient to breathe with their own muscles.  Hopefully it will allow people to breathe better, sleep better, delay respiratory failure and mechanical ventilation, and enhance survival and quality of life. If it is able to relieve at all the desperate struggle to breathe which results from this vile disease, then it is a God sent blessing. A minimally invasive procedure is required to place the electrodes.  More information can be found on the Synapse Biomedical/NeuRx Diaphragm Pacing System website.

All these advances to enhance comfort and the quality of life for ALS patients result from ongoing reserch. Remember to support ALS research through the ALS Association.      

A few days ago, I visited the cemetery to place new flowers on Bill'sgrave.  Bill's oldest brother, Jim, is buried in the same cemetery, and I placed flowers on his grave as well. The last time I was there I could not find Jim's gravesite because a storm had leveled several trees and his grave was covered over with brush.  It was good to see that the marble gravemarker had finally been placed by the VA.  On that day, I noticed a large, bronze colored, upright monument  in a nearby section of the graveyard.  Curiousity encouraged me to take a closer look.  Standing at the base of the gravestone, I read these touching, heart felt  words, which had been engraved into the  smooth marble.

I give you this one thought to keep,
I am with you still, I do not sleep.
I am a thousand winds that blow.
I am the diamond glint on snow.
I am the sunlight on ripened grain.
I am the warm Autumn rain.
When you awake in the morning hush,
I am the swift, uplifting rush
of quiet birds in circled flight.
I am soft stars that shine at night.
So do not think of me as gone,
I am with you still in each new dawn.

At he end of the inscription, I read the dates of  birth and death.  This young man had died at age seventeen.

ALS WALK

It was a cool but sunny morning for the Knoxville ALS walk on September 24.  There must have been several hundred people participating in the walk.  I believe the total amount raised was close to $100,000.  Our Family and Friends team raised approximately $800.  The team wore tee shirts with "Walking for Pappaw Knight".  The fact that my book was for sale with proceeds going to the ALS Association was not announced until the end of the event, so I only sold 17 copies.  At least 17 more people can have a better understanding of the havoc caused by this terrible disease.

WALK TO DEFEAT ALS

Every ninety minutes one American dies of Lou Gehrig's disease (ALS), while another is stricken with the illness.  This progressive neuromuscular disease can strike anyone at anytime; slowly robbing the body of the ability to walk, speak, swallow, and breathe while the mind and senses remain unaffected.

The disease is named for New York Yankees legend Lou Gehrig who was diagnosed with the illness in 1939.  He died two years later at age 37.  Although many things have changed since 1941, one thing has not changed--there is still no known cause, effective treatment, or cure for ALS.

Every year throughout this country, walks are held to raise money to defeat ALS.  Contributions collected through the ALS walks fund global research and provide programs and services to patients and families challenged by this horrendous disease.  Believe me, the challenges can be beyond imagination.   

I am a member of a Family and Friends Team and will be participating in the ALS Association Tennessee Chapter WALK TO DEFEAT ALS to be held on September 24th, 2011 here in Knoxville..  The walk is scheduled for 10AM at Victor Ashe Park.  This chapter provides leadership in raising awareness of the disease, promoting patient advocacy, and funding research to find a cure.

Our team will be walking in memory of my husband, Bill Knight, who died of ALS in August of 2004.  My book, A JOURNEY THROUGH FIRE (Memoir of an ALS Caregiver) will be available during the walk for a $10 donation to the ALS Association.

You may donate to our team by going to http://www.walktodefeatals.org/ and following the prompts that will take you to our team's donation page.  Any amount will be greatly appreciated.     

ALS Walk Kick-off Luncheon

On July 28, My daughter-in-law, Cindy, and I attended an ALS walk kick-off luncheon.  It was mostly an informational meeting about the Walk to Defeat ALS to be held on September 24, 2011 here in Knoxville.  We sat at a table with a mother who told us about her 39 year old son who is struggling with ALS.  She is heartbroken concerning his situation  A young woman with the disease who appeared to be in her thirties was in a wheelchair.  Her speech was but a whisper.  Her husband fed her lunch because she had lost most of the use of her arms and hands.  These are only additional reminders of the heartache and tragedy caused by this unrelenting, dreadful illness.

We are getting a team together to "Walk for Papaw Knight" on September 24.  Cindy is our team caption. I have permission from the ALS Executive Director for Tennessee to sell a select number of my books during the walk event.  Proceeds from the book sales will be donated to the ALS Association.

I have learned over my long nursing career that every disease or illness has an etiology or cause.  The mystery surrounding ALS lies deeply hidden somewhere.  It is only through the efforts via research of organizations like the ALS Association  and God's mercy that the mystery will be uncovered.  I encourage all who are able to donate and support those who are walking to defeat ALS.      

Interview in the Powell Shopper-News

I was interviewed by Greg Householder for the Powell Shopper-News about my book, A Journey Through Fire. Click the link below to read the newspaper interview

Author Interview

He Alone is Our Peace

My five year old granddaughter, Emma Grace, and I visited the cemetery today and placed new flowers on her Papaw's grave.  She picked up several pink roses from the ground, which had been scattered by the wind and placed them in the vase on his headstone.  She said, "Papaw will love these up in Heaven."  In the process of gathering the flowers, she wandered among the gravestones looking especially for monuments with angels.  She has learned that most of the time angels mark the graves of children.  She found two angel markers today and asked me to read the names on the marble.  A name on one stone was Katie Grace.  She told me she has a friend named Gracie Kate. There was a photo of the child incorporated on the stone.  It's difficult to know how children percieve death, especially the death of a child.

A recent severe tornado-like thunder storm has felled several old trees all over the cemetery grounds and there are huge brush piles and fresh tree stumps scattered about.  A large tree had obviously fell near Bill's grave and had knocked over a near-by marble stone.  Emma Grace was upset because the stone was lying on the ground, and she wanted to know who would fix it.  She said she was glad the tree had not fallen on her Papaw's grave.

Emma had me read her Papaw's name and the inscription on the headstone, "He alone is our peace", a Bible verse from Ephesians 2:14.  She ask me, "What does that mean?".  I told her it meant that Papaw was happy in Heaven...resting with Jesus.  After we completed arranging the flowers in the marble vase, we turned to leave the gravesite and Emma Grace said, "Bye, bye Papaw, I love you".

WHAT AMERICA MEANS TO ME

Many will celebrate the independence of our nation this fourth of July weekend.  Flags of celebration will be flying all over this land of freedom, but will the real significance of that star spangled, red, white, and blue banner be fully understood. The following is an excerpt about the flag of the United States of America from a writing by Francis Cardinal Spellman. May his words be remembered each and every time we are blessed to see Old Glory flying on this Independence Day.

                        What America Means to Me

What does America mean to me?  My heart is drenched with desire adequately to express the great gratitude to God which swells my soul for the manifold glories with which He has graced America, santuary of liberty, democracy and faith.

...America means our flag, red with charity for all men and all nations of good will; red too, with courage to achieve the liberties of man by personal sufferings and sacrifice.  White for the basic righteousness of our national purpose.  Blue for our trust and confidence in God, our Heavenly Father, to whom our forebears long ago dedicated this land of loviness.

I have seen our flag flying aloft in all corners of the world, the flag of freedom that symbolizies justice and love of man for God and his fellowmen, stark contradiction to the red flag of tyranny, symbol of serfdom and pagan opression.  I have seen our American flag in wartime and peacetime; and, as a loyal son of America, I am testament to the truth that even in the time of war the message of that flag means peace.  With rapt heart I recall the sight of our flag at the masthead of a ship, weaving bright colors above the turbulent waters beneath a sullen gray sky, which seems to reflect the world of today, dark with forebodings of disasters yet to come, gray with the accumulated clouds of evils and errors of the past.

Suddenly a gust of wind enfolds the listless standard at the masthead and there streams Old Glory, challenging the somber colorings of the sky.

Father's Day

"By profession I am a soldier and take pride in that fact," said General Douglas MacAuthur.  "But I am prouder, infinitely prouder, to be a father.  A soldier destroys in order to build.  The father only builds, he never destroys.  The one has the potentialities of death; the other embodies creation and life.  And while the hordes of death are mighty, the battles of life are mightier still.  My hope is that my son, when I am gone, will remember me not from the battle, but in the home, repeating with him one simple daily prayer, 'Our Father which art in Heaven."

May God bless every father, everwhere.

ALS Shows no Mercy

We had four young grandsons when Bill received his ALS diagnosis.  During one period of despair he commented, "I'll never live to see even one of the boys grow up."  He lived less than two years following that statement. 

When I visit Bill's grave, I tell him about the grandchildren.  Justin (19) graduated from highschool last year and is still contemplating his future.  John Morgan (16) enters his third year of highschool next year and wants to be a doctor.  Recently, I attended a band recital where Sean (13) did a fantastic job on the drums.  At the end of the school year Andrew (11) received three awards during his school's awards ceremony.  All four boys are smart and beyond wonderful.

Bill always wanted a little granddaughter to spoil, but ALS ended his life before Emma Grace (5) was born.  On May 24 she graduated from preschool.  Today, she turned on her music, put on her dance costume, and entertained me with her various forms of dance.  Bill would have loved it.

To see his grandchildren grow and thrive would have meant the world to Bill.  However, anyone who has witnessed the devastating effects of this horrendous disease knows that it does not allow for the fulfillment of  life's dreams and erxpectations.   They understand that ALS shows no mercy.

ALS - Recipe for Spoon Bread

Being  country boy, Bill enjoyed Southern style food.  A favorite was cornbread and pinto beans.  When the ALS began to affect his swallowing, the cornbread usually brought on a severe laryngospasm or choking episode.  I could mash or puree the beans, but the cornbread continued to be a problem.  I discovered that he could tolerate Spoon Bread, made with more milk and eggs and less meal, fairly well.  The Spoon Bread has a smoother consistancy, yet it retains the cornbread flavor.  It also goes well with soups and stews.

SPOON BREAD

3 cups milk
1 cup self rising cornmeal
1 tablespoon butter or maragerine
1 teaspoon sugar
3 eggs,seperated

In a saucepan, scald the milk to 180 degrees F; stir in cornmeal.  Reduce heat and simmer for 5 minutes (stirring constantly).  Remove from heat; stir in butter and sugar.  In a small bowl, beat egg yolks.  Gradually stir in a small amount of the hot mixture into the yolks; return the yolks back into the hot mixture and mix well.  In a mixing bowl, beat the egg whites until soft peaks form.  Fold egg whites into hot mixture and blend well.  Pour into a greased 8 inch square baking pan.  Bake at 350 degrees for 40-45 minutes or until well puffed.  Use a spoon to serve.

May is ALS awareness Month

A Journey Through Fire Book Trailer

Click on the link below to view the book trailer for my book,
                           A Journey Through Fire
                           Memories of a caregiver
                  A Journey Through Fire Book Trailer

We Will Never Forget

On May 5, 2011, President Obama paid a somber visit and led a ceremony at Ground Zero in New York.  The President and a New York City firefighter laid a red, white, and blue wreath at the foot of the pear tree that had survived the collapse of the Twin Towers.  The unprovoked attack occurred nearly ten years ago, but it will never be forgotten.  Obama later visited and had lunch with firefighters of Fire Engine Company # 54.  He thanked them for what they did on September 11, 2001.

My husband, Bill, was a proud firefighter for nearly thirty years.  The following is an excerpt from  my book, A Journey Through Fire.

I vividly remember the day the towers came down.  Bill and I were watching a national TV show in our living room.  We watched in horror as the first airliner, and then the second, crashed into the sides of the two buildings.  We saw some people leaping from windows, to a certain death, in order to escape the blazing inferno.  It is still difficult to comprehend the enormity surrounding the events of that day.  I will remember those horrifying scenes depicting untold injuries, numerous deaths, and vast destruction as long as I live,

Over 3000 people died in New York that day; over 300 of these were firefighters.  Bill was especially distraught because of  the many firefighter brothers who were lost.  He had problems sleeping, and he was sad and depressed for weeks.  The three firefighters raising the American flag in the midst of the rubble touched him deeply.  After much searching, I found and ordered a poster of the scene from an online poster company.  He framed it and hung it in his room, which is now complete.

WE WILL NEVER FORGET

In the Path of the Storm

It was Wednesday, April 27, 2011.  I was watching over my five-year old granddaughter, Emma Grace, when the tornado warning anouncements began from the National Emergency Alert System on TV.  The warnings were coming at frequent intervals and Emma was frightened.  She began to cry, and while making a twirling motion with her hand she asked, "Mamaw, will it be one of those bad storms that goes round and round?"  Attempting reassurance I said, "It's probably only going to be some wind and rain."  My words didn't help to alleviate her fear because she continued to cry with an expression of panic on her face.

I noticed that the sky had grown very dark, and we could hear the reoccuring thunder and see almost constant massive lightening streaking accross the afternoon sky.  The trees in the neighborhood were swaying violently in the wind, and the rain began pouring down.  The weather forcast reported that there was an intense super cell of thunder storms with deadly tornadic potential sweeping accross the South, and Knoxville was in the path of the storms.  Emma's mother, who is a school teacher, called to say she would not pick her up at the usual time.  The school children were not being released from school and she was unable to leave until cleared to do so.  We have had tornado warning before, but these storms being depicted on the doppler radar and the serious tone of the forecaster's voice indicated a more ominous significance.  With Emma Grace close behind and my telling her not to be afraid because I wasn't afraid, I begin to carry some pillows and blankets into the wash room, which is the intermost room in my one story house.

Over the remainder of the afternoon and into the night, several tornados touched down in the Knoxville and surrounding areas.  Parts of the city had large and damaging hail, flooding, numerous downed trees and power lines, and property damage.  One hundred year-old trees came down, but all in all we were very fortunate.  When it was all over and the warnings ceased, it was determined that the storms caused the deadliest tornado outbreak in four decades.  Almost 300 people were killed accross six states, and the tornados left obliterated neighborhoods, even entire towns, along their path.  Alabama took the worst hit with most of the deaths and destruction.  The local newspaper published a photo of a personal check from Alabama, which had been found in a yard in the Knoxville area.  The storms had carried it over 200 miles.

Many people endured much and lost everything as a result of these storms.  Loved ones were lost and lives forever changed in the course of minutes.  As with many past disasters, mother nature in her fury has let us know just how unpredictable, volatile, and uncaring she can be; that we are essentially powerless to resist.  Once again, I am reminded of the need to put my trust in God, be mindful of my fellow man, and count the blessings that belong to each day.  During times such as this, it is unmistakeingly clear that whether trouble is caused by a disasterous event or some other unexpected  life trial, we may have hopes, dreams, plans, and aspirations, but one life storm can come and wash them all away. 

Ebook

I am happy to announce that my book, A Journey Through Fire, is now available as an ebook through Barnes and Noble.