Polio Place

Richard Daggett, California

Just because we have one disabling condition doesn’t make us immune to other health problems. I am a respiratory polio survivor who uses trach positive pressure ventilation fulltime. In February 2005, a biopsy of my prostate detected cancer. The initial prognosis was not good. I tried to keep a positive outlook, but it seemed that with every new test the prognosis got worse.

I researched treatment options. Surgery did not seem the best option for me because of my particular polio complications; my urologist recommended androgen-deprivation therapy and radiation. But both treatments can cause fatigue and weakness. The fatigue I could probably handle, but I am already weak and any increased weakness would interfere with my diminishing independence.

A medical journal article I found indicated that a regimen of strenuous exercise could reduce the weakness associated with cancer treatments. Strenuous exercise? That wouldn’t work for me. I get about as much exercise as I can tolerate just brushing my teeth, feeding myself, and standing to transfer.

Just in case I misunderstood the article, I asked Jacquelin Perry, MD, to review it. Although Dr. Perry is retired, she still serves as a consultant for the polio clinic of Rancho Los Amigos National Rehabilitation Center. She concluded that a similar exercise regimen might work for me, excluding the “strenuous” parts.

A physical therapist designed a program tailored to my concerns about losing the ability to transfer unaided. I was told to slowly work up to three sets of eight repetitions, three days a week of the following exercises:

• extend my legs from the knee, focusing on my quadriceps
   
• lift my bottom off the bed, focusing on my gluteus muscles
   
• lift my head off the bed, focusing on my abdominal muscles.

I started these exercises about the same time I started androgen-deprivation therapy.

Radiation treatments - Intensity Modulated Radiation Therapy (IMRT) - began about a month later. A major concern was using my ventilator while receiving radiation. I can breathe on my own for about an hour while sitting, but when lying down, I quickly feel breathless and my breathing is shallow. Would I be able to use my ventilator in the treatment area? Would the high radiation levels affect the electronics of the ventilator? The radiation facility staff assured me on both questions.

Unfortunately, my wheelchair with a PLV®-100 ventilator on the back could not get close enough to the treatment table. I felt it would be too time consuming to disconnect the hoses and battery cable from my PLV®-100 ventilator, and take the ventilator off the chair every time I had a treatment. Fortunately Respironics allowed me to use a spare PLV®-100 that I placed on a small luggage carrier and kept at the radiation facility. It was stored safely and wheeled into place after I was lifted onto the table. My aide made the necessary adjustments and connected the hose to my trach.

Radiation treatments were five days a week for nine weeks. Fatigue set in about half way through. Some days, especially in the early afternoon, I felt as if I would fall asleep in front of the computer. If I had not been using a ventilator, I’m sure this additional fatigue would have further compromised my breathing. Fortunately, these episodes of fatigue faded. About a month after the treatments ended the greatest part of the fatigue was gone.

I have continued my exercise regimen. I can move around in bed more easily, and I’ve lost an inch in waist measurement. It is too soon to know how effective the treatments will be long term, but my latest tests have been encouraging. I’m feeling good, and I’m hopeful.

2011 Update: I’ve had regular follow up appointments with my radiation oncologist and my urologist. Everything looks good. My PSA before radiation was 26! For the last six years it has been 0.3! I think I made the right choice, at least for me.

© Ventilator-Assisted Living, Spring 2007, Vol. 27, No. 1