Posted in Life
My mom saw the ALS specialist last week. He said that she has Bulbar Palsy- the nerves die that control the face, neck, and throat. This affects the speech and the ability to swallow. At first, this sounded like better news but it's not. Bulbar is not an easier disease than Lou Gehrig's disease, in fact, the life expectancy is considerably less. People with Bulbar Palsy usually choke to death or die from pneumonia that results from aspirating food or liquid into the lungs.
She will have additional testing but she is not eligible for any type of financial assistance, so treatment options are limited. In fact, the doctor never even mentioned the possibility of any kind of medication that could slow the process. He just told her to start thinking about a feeding tube since her ability to eat will soon diminish. We have also made contact with hospice.
At present my mom is still working. She is a secretary for a Christian publication. Everyone is aware that each day may be her last. We never know what changes lie around the next corner... but we must face these changes as they come.
Posted in Life
We recently found out that my mother has (ALS)
Lou Gehrig's Disease. The average life expectancy is 2-5 years, it has taken a year to get diagnosed and will take another 3 months to get a much needed appointment with a doctor who treats this disease. (Medication cannot be prescribed without this appointment). So we wait...
In the meantime, we can research and attempt to prepare ourselves for the future. This is not an easy task. Knowledge of the disease is not the same as preparedness. One can anticipate death but how can one anticipate being alive, locked in a body with only the ability to blink? The mind, memory, and all thoughts remain intact but the body slowly shuts down until the only thing that remains is eye response. How do you prepare?
I found this:
MY BATTLE
I am aware of the darkness that surrounds me; there is no world outside. There is no control nor is there a need for the control of pain that wells up within me at the thought of the words of dread that I rehearse over and over in my mind. I exist in my moments of despair. I can see no light of day but then; I do not see what others do. My world is filled with only that which those before me have glimpsed during their moments. My thoughts remain locked within the depths of my soul, for from there once came my feelings of love and joy and happiness and all things that are good. I feel a grieving from within the very depths of my soul...
I am afraid!
I want to leave the depths of despair; I yearn for my yesterdays filled with love and joy. I want to reclaim my yesterdays and overcome my feelings of hopelessness. My pain is measured by the love I have given and received in my life; therefore I cannot begin to tell you the measure of the pain I feel. I find myself hoping that I have given a part of myself to each life that I have touched; be it in words spoken or deeds done. I believe that I have a purpose on this earth to fulfill and I ask.... Have I fulfilled it? I feel not; I need more time. Then, into the darkness I grasp for strength and as with others before me, I am given a glimpse of hope as I realize that.... I have not begun to fight!
I then realize that my battle will be great! I ask you be with me in my fight. I ask that you be strong in my moments of weakness and above all, share my truths. I will fight with my very being! I will walk forward! I will pick up my light and lift it high; I will find my way through the darkness! I will fight with the strength of my memories; knowing that others share my journy; knowing others walk bravely by my side! My feet my not always carry me on the road I must take but I will not be defeated in the fall because I walk in the footsteps of those before me...I walk in the footsteps of HOPE!
When the day comes that I feel that my walk will not have been in vain, I will have won the battle I will so desperately fight for! We will have found a cure!
Millie P. Lorenz
I am trying to remain positive.. to embrace this disease and find something positive in it. I know that God has not allowed this happen without having a bigger purpose for us so it is my goal to find that purpose. When I am feeling all alone will you please help me to see the big picture?
***********
For more information:
What is ALS
Posted in Life
When I got a Chinese Crested, I was told that some of them can climb... But I never imagined how well some of them can climb.
Posted in Life
My brother and his wife recently separated and he has filed for a divorce. They have two teenage children. My sister in law moved out and left the children with my brother.
What happened to this once happy couple? When I talked to my niece, she had this to say: "My brother is not a crack-head and I am not a slut so she left". Could it be that when things are going OK, people get bored and leave?
As I reflect back over the past several years, they had kept foster children. Their foster children were mostly teenagers (many had been sexually abused). There were many adjustments to make, tears to wipe away, hearts to mend, and souls to bring to God. Then a couple of years ago, they stopped keeping foster children.
Can happy homes break up because things are OK? Can a mother get bored with having children that are doing OK? Can a wife of 20 years leave because she needs the stress and drama that the foster children use to provide?
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