Sam and Jo-Ann Goldstein of St. Louis have learned a lot about living with ALS since he received his diagnosis in 2005. In this fourth installment of an intermittent series about one person’s ALS journey, Sam shares how his ALS caused a sudden respiratory crisis, leading to large and difficult changes in his and Jo-Ann’s lives.
This is my fourth article sharing my personal journey with ALS, and you haven’t heard from me since September 2006. WOW. Have things changed since then.
Back then, I was getting around well in my Permobil power chair and new van, going to breakfast with my children and grandchildren, meeting friends for lunch and visiting with family. But when MDA called recently and asked us to write another article, we warned that things had progressed rapidly and it might “scare” some people. We were told to just tell our story truthfully, because it can help others to know firsthand how people cope with the progression of the disease.
Getting a trach
|Sam and Jo-Ann (to Sam's right) pose with friends and family at a wedding in March, the first time Sam had been away from home since Thanksgiving.
I was looking forward to the 2006 holiday season when my world came crashing down the night before Thanksgiving. I had a cold and was having a little trouble breathing. Thinking my newly acquired vent for nighttime would help, I put it on and still couldn’t breathe well. That’s the last thing I remember for two weeks.
My wife Jo-Ann called 911. My lung capacity was down in the 30s and they rushed me to the hospital. In the emergency room they couldn’t get my levels above 72 (out of 100) and they asked Jo-Ann what my wishes were for life support. Luckily, we’d discussed the option of a tracheostomy and I’d decided that I definitely wanted one and had a very clear medical directive in place.
So, with no hesitation, Jo-Ann was able to tell the doctors to go ahead and intubate me [put in a throat tube]. Then, for two weeks I was kept in a drug-induced coma so that I wouldn’t pull out the tube.
I had pneumonia in both lungs and MRSA [a form of staph infection]. This required being on a ventilator, staying in the ICU and everyone “gowning up” before visiting. They did a tracheostomy (right in my room), and I was able to talk within a few days. I think that all my years playing the French horn, which requires breath control, allowed me to readily adapt to speaking around the trach.
The total hospital stay was 26 days! The doctors and pulmonary staff wanted me to be weaned from the vent during the day, but I was too anxious each time they tried. My feeling was: It’s so much less effort to breathe with the vent’s help, so why should I go off of it?
Lots of changes
The biggest change was in the use of my hands.
|Sam, Jo-Ann and family celebrated Passover together this spring.
Before Thanksgiving I could use my right hand to drive my chair, eat without help and scratch my nose. At the end of two weeks I could no longer move either arm and lost the use of both hands.
That has been the biggest adjustment — having to ask someone to do the littlest things like taking a sip of water or rubbing my eyes. The simplest things like feeding myself, combing my hair or brushing my teeth can’t be done alone. Emotionally, this was very hard to deal with and we continue to see a counselor weekly, who is our biggest source of strength.
Coming home had its own new set of problems. I could no longer be left alone because of the vent. Jo-Ann had to learn how to suction me and change the trach. I couldn’t drive my chair. With all the previous changes that ALS brought, we had time to adapt to them one by one, such as going from a cane to a walker to a wheelchair, then power chair and Hoyer lift. Now I had come home with a vent, trach, suction machine, emergency oxygen and a lot of supplies.
I had hoped that my progression would be slow, but I have to face the reality that it is not. I think that’s one of the harshest things that all of us with ALS have to deal with — not knowing when changes will come, and the lack of any control over our progress.
We immediately hired a caregiver to help Jo-Ann and allow her to continue working part-time. After asking everyone we knew for names of good qualified assistants, we were very lucky to find someone who had experience with trachs and vents. I know that many people can’t afford to have extra help and I think it’s horrible that Medicare doesn’t cover these necessities. Maybe someday soon they will realize that it’s much cheaper and certainly preferable to care for someone at home, rather than in a hospital or nursing home.
Looking for hope
Change is a constant and we deal with things as they arise. My chair now has a sip-and-puff control instead of a joystick. It’s difficult to leave the house, so my children, grandchildren, siblings and close friends visit often — a source of great joy to Jo-Ann and me. It’s now getting more difficult for me to speak, so we’ll start to investigate alternative communicative methods with the help of our great friends at the MDA/ALS center.
My emotions are all over the board as I come to grips with the trappings of ALS. But, I’m not giving up. I still feel that embryonic stem cells hold the promise and am heartened by the steps that researchers are making each day.
I apologize that this article may be somewhat depressing for some. You have to find your own silver lining to deal with this disease. Luckily, I have my family and friends and especially my beloved wife of almost 38 years to help me cope with the difficulties that are constantly arising.