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. …
Patient progress notes from Dr. Van Houten, my primary physician:
He has lost almost all the function in his legs and arms, and the only way he can eat is actually put his face into the food.
I got very creative when I was tired of other folks feeding me. I had my plate put on a Lazy Susan with the food at the edge of the plate. That way I could spin the plate with my nose and bite at the edge of the plate! Dr. Van Houten continues: He is trying to be as independent as possible…
Patient progress notes from Dr. Van Houten
Extremely pleasant, talkative, thin male, now in a wheelchair, allowing his legs to move and push him along, which he is still able to do. He is still unable to lift his arms: making a fist with his hands is also quite difficult. Progressive, perennial weakness, worsening. He has a wonderful supportive group of friends and family.
Second opinion, UCSF Medical Center. Dr. R. Layzer
Patient has rather rapidly progressive lower neuron disease affecting all four extremities, the neck and probably the respiratory muscles. The most likely diagnosis is Amyotrophic Lateral…
12/1/05 Patient progress notes from Dr. VanHouten, my primary care physician. Patient collapsed on the sidewalk while on vacation. Since that time, his muscle weakness has deteriorated greatly. He presently cannot dress himself. He can’t eat, as he is unable to lift his hand far enough to his mouth. He can’t bathe himself and is having difficulty with bathroom issues. His wife helps him as much as she can. 1/12/06 Patient progress notes from Dr. VanHouten. Patient seen by Dr. Baumbach the neurologist and was told that he could have ALS. He's very uncomfortable with this possible diagnosis and doesn't…
A day in my life as a Lifetime vowed Brother in the Holy Order of MANS would start with meditation, and follow with studies of esoteric literature, then cooking large meals, and stocking clothes donations for our homeless shelter. At night, I patrolled the neediest parts of town — in Honolulu first and later in San Francisco, where the Order transferred me — looking for and being available to serve the homeless and folks who needed support on the streets and in the darkest alleys. I felt protected by my intentions.
One day, in San Francisco, the FBI showed up…
After being given an ALS diagnosis at the age of 55 and told that I would have 18 months to live, I knew the Fight was ON !!
I was looking forward to growing old and becoming a grandpa. Only then, would I be ready to make the trip back to where I had come from.
Let me explain. I’m a spiritual person. At 20 years of age, I went into a monastery — the Holy Order of Mans, an esoteric school in service to mankind. My service was with the homeless. I studied meditation, the power of prayer, universal…
Both arms and both legs paralyzed. 2 fingers left to control the wheelchair. Dr Bedlacks 42nd ALS reversal at Duke University ALS Clinic.