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
A Journey Through Fire
This blog is dedicated to my book: A Journey Through Fire -- ALS -- Memoir of a caregiver
Monday, July 6, 2015
Sunday, February 16, 2014
Friday, October 11, 2013
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
Thursday, August 8, 2013
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
Saturday, March 16, 2013
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
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
Tuesday, August 14, 2012
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.
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.
Tuesday, December 6, 2011
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.
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.
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