Realizing that we will not always be in control gave me the space to mentally deal with this ALS mystery story.
After nine months from the diagnosis and almost complete dependence on others for survival, I felt I was getting better.
What did I find out about myself during this challenge?
I melt when the flame gets too hot.
My mind was my enemy, because it became the door to the next room. There always seems to be a next room. That idea is always in the back of my mind.
This life had so many twists and…
It was a burden, the sharp tip of a needle, always poking
My doctors were working with all the information they’d gathered
in medical school, and I appreciated most of their help.
I know I am a very unusual case. Maybe to some folks, a given
date with death might seem helpful, so they can get their affairs in order.
I kept returning to the question: How can this be? I
believe I am recovering, so how could this death sentence be true?
I have never known a human who says he or she is in contact
5 / 29/ 06
Ten days after the doctors home visit, his report stated, I had not made any improvement in my arms and leg muscles.
Then I felt the muscle jump in my arm.
“Hello,” I said to my muscle, “what are you telling me, I’ve been here before”.
I had two jump starts that where very short lived. Bret was more wait and see, but I was sticking my neck out with, HOPE.
It was 29 days after Romy, St. Raphael, whose name derives from a Hebrew root meaning “to heal”and St. …
I never thought I would be repeating these words after a Filipino spiritual healer
I have had many adventures in my life, but none, as consuming as ALS. This disease took everything from me except for the Loving care of my family and friends.
I used to like to figure out problems, ask friends for help, or click on YouTube for answers.
Not this time.
No one had come close to giving me back my Life. I went to UCSF Medical Center in San Francisco, where they offered to send me for a feeding tube consultation. …
9 months in after my diagnosis of terminal ALS, I began to feel I was at the Tip of the Spear, I need to be the ONE to sharpen my wits so I can pierce this veil of doubt and sadness hanging over me.
I still was not ready to die.
But I am ready to sell my pool table. I always wanted a pool table, big full-size professional, finally I had it. We had a lot of great times around that table with neighbors stopping in to play.
It really wasn’t a hard choice.
The pool table took up the…
Try to wrap your head around that. I thought I had my affairs in order. This is a whole new ball game. I don’t think many folks have their affairs in order. When you’re told you have 18 months to live, you certainly have a new frame of mind about what’s really important.
Like, what are my things? I used to think my things were my house, my car and my cameras, my computers, my pool table, my clothes, my tractor, my land. They are not mine anymore, I have no use for them. …
Ten months into my diagnosis of ALS with only two fingers on my
right hand functional but still having the ability to speak, I felt lost.
I still believed in myself as a spiritual being who was having a
physical experience, one that I felt I could overcome, but
the daily loss of more bodily functions, including the ability eat,
drink, dress, and keep myself clean, was a hard foe to deal with.
Bret my caregiver was such a positive motivator, every day pushing to make sure he was moving every muscle in my body. He would always…
It had been eight months since my ALS diagnosis, and I had ten months left to go, according to my doctor’s prognosis. My weight had dropped from 165 pounds to 142, and my muscles were turning to mush. Mona, my lovely wife, kept telling me to get on the floor and squirm. I was really tired of it. But that was all I could do, and I was no longer embarrassed by so many friends trying to help me.
One friend was the carpenter who came to our home and built ramps so Mona could easily wheel me to the…
Patient progress notes: From Dr. Van Houten, my primary physician.
The patient was seen by me on the porch of his house seated in a simple power wheelchair. He is noticing more difficulty breathing which is new. His leg function has also worsened. His arms are really unchanged but were so severely affected that they didn’t have “much to lose.” The patient was noted to have a borderline vitamin B 12 on previous screening by us and this was not addressed with supplementation and he would be interested in having injection therapy for this since this would be a…
Patient progress notes: from Dr. Van Houten, my primary physician.
Thin, depressed, weak appearing male seated in a wheelchair accompanied by his significant other. The patient is having a rapidly declining course with increasing weakness in upper extremities and back. He has also begun having trouble making his legs move. He has significant shoulder pain because he is unable to move his arms.
He has been having some depression and insomnia. Extremely limited movement in his upper extremities with significant wasting. Legs also show significant atrophy. Grim prognosis, rapidly declining. …
Both arms and both legs paralyzed. 2 fingers left to control the wheelchair. Dr Bedlacks 42nd ALS reversal at Duke University ALS Clinic.