The Tale of an ALS Survivor # 8
Thin, Depressed and Weak
3–7–06
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. I am going to plan to see him at his home and we will make use of the visiting nurses for his care.
Put him on Naprosyn 500 to help with his extremity discomfort.
Started him on Lexapro 5 mg daily and gave him our standard warning about it use.
Talked to him about hospice and when that might be appropriate. Recommended that he make sure he has a :Do not resuscitate: order in place if that is his wish.
Lexapro, an anti-depressant was not going to keep me from thinking about the consequences of each day I was becoming weaker and weaker.
I new what hospice meant, I saw many folks move on to their next location in my 18 years of hospice service.
My Do Not Resuscitate order was already in place with my Advanced Medical directive.
I was on a journey that very few of my closest friends could understand, no one, not even those who love me dearly could I expect to understand. I wanted them to and I expected them to sometimes, but that was because I felt so lonely, I needed somebody to understand what it was like to be — helpless — .
Stop, Red light. It really took me to feel helpless before I could realize that it was a lie. Physically I’ll admit I was helpless and that really hurt my self-worth. One day sitting at the table in my wheelchair I could see my wife out in the garden through the window and there was Brett my caretaker making me lunch and I started to get really sad about not being able to do any of those things.
I felt so in adequate as a member of my community, and all of a sudden a voice inside of me said very clearly, you forgot about me, I was stunned. That’s all the voice said, within a few moments I had one of those deep realizations that there were two of me.
I mentally had known all about that for a long time, but that was all theory. Now things were getting serious and Feeling all alone is not helpful to anyone. I knew I had self-worth, I just had to find a way to understand, just because my body is helpless, my mind and my spirit where healthy and available, if I chose to acknowledge them.
Activity is vital, but so is just BEING, no activity needed. I needed that balance. I was all about my loss of movement. Slowly I was feeling a deeper meaning to life than just what I could do. I believe I am a Multi dimensional Being having a physical experience. Most of my time has been spent aware of my body; I now had plenty of time to balance my life by looking inside myself for some comfort, it was getting scary outside,
and not only for me !!
SELF HELF:
I notified a group of men who I felt were having challenges in their life to see if they would like to start a men’s group. I got a few, no I’m not interested, and I got six thank you’s, what day and time, we will be there. I was amazed at how lonely six men with legs and arms could be, who could go wherever they wanted.
That was a real eye-opener for me, I realized how mental attitude could be a prison cell or wide open spaces. I felt honored when one of the men started to tell his story and shortly into it started weeping and then crying, that was the moment I realize each of us is Sacred and each of us has burdens and joyful moments during our time here on this earth.
We all need help one time or another in our lives. I gained a new purpose and attitude with my challenges sharing my own heart and listening to these six men sharing theirs. I found worth sitting in my wheelchair. I just never know how things can change until I put my mind to work for me. not against me.
When the Dr. started to talk to me about hospice and having a do not resuscitate order in place, I knew I was in the wrong place. He was just doing what he thought was best for me and I’m thankful for his care. I needed some hope or some control
I was given 18 months from the neurologist, I have been losing strength for seven months now. Thank God I had been collecting a Team so that when one didn’t have an answer, I had others with different experiences to help me.
David was coming every Monday to give me my B12 shot. Debra would massage every muscle in my body every week. Home health came every week to exercise me. Pamela gave me my cranial sacral treatment plus other exercises to keep me out of my wheelchair. Squirming on the floor was the hardest. At times Brett would take me outside & lay me on the ground. I had really been separated from nature and it was one of my good friends. My medicine came in many forms.
Mentally: I tried to change my sadness into hope. I tried to believe I was going to win this battle even though I had my doubts at times. I was my worst enemy mentally. I was either up or down in my mind depending on how the day went. It took a while but I started talking to myself about having two of me. One of me had ALS any other me was witnessing it. That other me was my Spirit trying to be heard.
Physically: I needed to do my squirming exercises, that was a hard one. I had to lay on the floor for 45 minutes a day and try to move any part of my body that I could, 45 minutes is a long time and I hated it because I could hardly move. Brett would be constantly trying to move my arms and my legs, he would even tie me to him with my feet on top of his feet and he would walk me around. I really didn’t want to do the work people were asking me to do, I just wanted this ALS to go away, I was tired. I knew if I gave up more than I had already done I was going to do myself in. One way or the other.
I had the experience, rising up out of my wheelchair during my wife’s prayer circle that I will never get it over. I have no idea how that took place, in fact it’s a little spooky, I could go on and on about that, I wish that would’ve been the end of the story, I sure wish it would’ve been.
Just the memory of my challenge can bring tears to my eyes. I am so grateful that the ALS community has grown to the size it is so all of you who need support can find it.
If help is what you need, Please contact info@everythingals.org for some compassionate understanding. I wish they would’ve been there 15 years ago when I and my family needed them.
March 9, 2006
Debra my massage therapist has been asking me to see a new Naturopathic doctor in Grass Valley. CA. She would ask me every week if I had called, I hadn’t, finally, I said to her this is serious, what’s a Naturopathic doctor. To put it simply, it turned out to be a professional person who wanted to be my personal health detective. Thank you Dr. Greg.
For the first time I’m feeling like I want to join the FIGHT.
