6 posts tagged “In My Own Words”

“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS

Posted July 16th, 2014 by

For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve Saling ALS Residence, the world’s first fully automated, vent-ready, skilled service residence specifically designed for people with ALS (co-founder Ben Heywood and marketing team member Jenna Tobey went to visit him at the residence not too long ago).

Steve hasn’t stopped with just one residence – his ALS Residence Initiative (ALSRI) provides an environment where people with ALS and other debilitating conditions can live productive and independent lives. As Steven Hawking said, it demonstrates “the roles of technology empowering the lives of those who would otherwise depend entirely on the care of others. I look forward to living centers such as this becoming a standard for the world.” And Steve is on his way to making that a reality – the ALSRI has opened a new house in New Orleans and is currently building another one in Georgia.

Steve recently shared a story on Facebook about an accident that happened while he was on his way to meet up with friends and generously agreed to share it on the PatientsLikeMe blog, too. He put it all in perspective by talking about the challenges of being unable to communicate with medical staff, and how emergency personnel should be better trained to interact with people who have ALS to avoid potentially life-threatening mistakes. Check out what he had to share below.

A tale of friends, beer and ambulances…

I have always enjoyed drinking beer with friends, and ALS did nothing to change that. All spring and summer, my friends and I get together monthly for beer night. Unfortunately, one time I stood them up.

I had parked the van and was almost to Cambridge Brewing Company. I had to cross Portland Street and had to go down a wicked steep curb ramp, and it flipped my wheelchair on its side. It was really no big deal, but the ensuing ambulance ride could have killed me dead.

I appreciate that it must have been quite a sight as a bunch of people rushed over to help me and my mom. I just wanted them to put me back on my wheels so I could go drink beer, but it seemed like the ambulance got there in seconds. They were super nice, but they are paid to be cautious, and I was away from my computer and my grunting protests could not convince anyone not to take me to the hospital.

That is where things got dangerous. Everyone knew I have ALS, but they strapped me flat on my back on a hard board for the trip to the hospital. They were concerned about my spine, but I am already paralyzed and am more concerned about maintaining an open airway, but I had no way to communicate that. If my breathing had been more compromised, I would have suffocated on the way.

Fortunately, my breathing is without difficulty, even flat on my back. My burden with ALS is drooling. I can drool a gallon a day, and I expected to drown on my own spit on the ride to the hospital. One of the few words I can say is “up,” but everyone thought I was complaining about being uncomfortable and off I went. Miraculously, my body recognized the danger, and I realized I had severe dry mouth so I calmed down and made it to the hospital with my mom bringing my chair and more importantly my computer in the van behind the ambulance. I have to say that they were very nice at Massachusetts General Hospital, and my nurses and doctors were hot as balls. It would be tragic if they had killed me by trying to help me. They wanted to do a CAT scan, but I refused and was out within the hour. The whole experience reinforced my fear of going to the hospital when not able to speak. Hospital ERs and EMTs just don’t know enough about ALS to provide appropriate care. This needs to change.

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“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3

Posted July 7th, 2014 by

Eleanor (right), her daughter Kalea (left) and granddaughter Malia.

Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)!

Eleanor talks about her relationship with her psychiatrist Jon and how they recently sealed “nearly four decades of struggle, pain and healing.” Read on for the final chapter, and if you missed Eleanor’s two previous entries, check them out here.

 

 

 

My Psychiatrist of Thirty-Seven Years: Jon Betwee

What can I possibly say? Jon Betwee became my psychiatrist thirty-seven years ago, a month after we moved to Maui from western New York. He retired February 1st, but not before personally placing a few of his patients with one of the very limited number of therapists here. I was fortunate to be in that group. I am seeing a female nurse practitioner, licensed to write prescriptions and well-versed in bipolar disorder. As my PatientsLikeMe friend, Kitty, said to me last week, “She’s no Jon, but she just might turn out OK yet.”

Jon is very reserved outwardly, but extremely discerning and compassionate inside. He became the best friend I’ve ever had and the rock to which I clung whenever I was drowning. Jon was available 24/7, at home as well as the office. He treated me for years for severe clinical depression. Twice during the thirty-seven years I was bedridden because of severe weight loss and inability to eat in the depths of my despair. Both times, Jon came to our home for sessions until I was strong enough to go back to his office.

I was hospitalized once in Honolulu and given – it was discovered later – a series of medically incorrect electroconvulsive therapy (ECT) treatments. Jon later sent me to Western Psychiatric Institute and Clinic in Pittsburgh, where I received excellent therapy with my individual doctor, attended classes in Cognitive Behavioral Therapy, Art Therapy, and received a thorough examination of my diagnosis, etc. I was also given ECT treatments, which I stopped. I consider ECT to be extremely inhumane.

About ten years ago Jon changed my diagnosis to bipolar II. He saw me through two suicide attempts. Frequently he communicated with experts on the mainland concerning my symptoms and medication. I was welcome to call him during the night when violent nightmares drove me to sit in the living room and ponder the value of ever leaving again, a darkness which had become my home. I seldom actually called. I would say to myself, “If it gets worse, I’ll call.” Then it would get worse and I’d say, “Well, if it gets worse than this, I’ll call.” Eventually the sun would begin to rise, and I’d breathe a sigh of relief. I had made it through another night. The important thing was not that I called, but that I knew I could call.

In my frequent cycling, it has taken years to accept his constant observations that when I am hypomanic, I think I am “cured” and ignore any and all red flags. When I am depressed, I cannot remember the healthy periods and feel it would be better for myself and my family to die. Having worked in a settlement house and been active in the Civil Rights Movement, I found a strong, liberal ally in Jon. Over the years we exchanged many books. He introduced me to Kay Redfield Jamison whose bipolar caused her to frequently change her hair color, re-arrange furniture and spend money she didn’t have on things, often for others, which seemed unbelievably desirable, rivaling “the rings of Saturn” in their beauty. Just – like – me. He gave me “Darkness Visible” by William Styron. It was like looking in a mirror. Jon studied my extended family and explained that I had come by bipolar disorder honestly through genetics. This relieved much of my guilt over an illness that frightened my children and challenged my husband.

Over the years, I have been on just about every medication that applies to depression and bipolar II. Some were ineffective; some had side effects severe enough to make me stop them. For two years my main medication has been Selegiline. Jon expressed caution about continuing it just before my therapy ended. Since then I have discontinued it with my therapist’s approval because of nightmares, weight gain and possibility of liver damage.

Two years ago, Jon gave me a detailed printed sheet for recording daily my mood levels, hours slept, and my place on a scale that went from deep depression to extreme mania. I also would write in any event that caused cycling. At each session he checked it, asking questions and pointing out how items I recorded affected my bipolar.

When he changed offices a few years ago, he gave me a painting of a depressed woman which had hung in his former office that I’d admired for years. It dominates my living room. I mention this to show how tuned in Jon was to his patients and how he looked for ways to be kind. There was a time when I couldn’t pay, but he assured me it could be made up whenever we could afford it. All this is vital to treating bipolar. Our lives are spent on a rollercoaster. Our loved ones are pained and don’t understand. A therapist who respects you, isn’t puzzled by your rapidly changing behavior, is never judgemental or impatient makes us feel we do have value and maybe continuing the struggle to live with bipolar is worthwhile. That’s why I am here, able to answer this survey.

Last August Jon told me he was retiring. I cried. For forty-five minutes. He said it would take some time, but he would help me make the transition. During the ensuing months we decided to meet twice a week, sifted through possible therapists until zeroing in on one, and tidied up a major issue that had plagued me on and off for years. I wished my last visit would be cheerful, showing my gratitude for all he had done, but that seemed impossible since every session now ended in tears. Before the last session I spent time preparing for it. I gained the realization that 1) my husband had become my main support 2) my friend, Kitty, on PatientsLikeMe – and other members – would continue to give me help and strength and 3) I reviewed what I’d learned from Jon over the years.

I was able to come to the last session in peace with a smile. We laughed about things that happened over the years. He said he would always be available by phone and we parted with a warm hug, sealing nearly four decades of struggle, pain and healing. I will always have what he’s given me. It is enough.

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