Getting Back My Voice?

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This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn’t have the strength – or money – for such an endeavor. As you will see in the video,141136 this company was able to recreate this man’s voice with only three hours of recording. Maybe one day, my half hour of recording will be enough to get my voice back!

“I’m shouting hard… This is the start!”

3 Things to Be Grateful for This Thanksgiving If You Have ALS

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Gratitude

Those of us living with ALS or loving someone who has it are gratitude experts. Don’t misunderstand me. We have our dark, bitter moments. As we catalogue our blessings – the precious time we have had on earth, our remaining abilities – we inevitably think about the other side of the coin. Yes, I have lived 30 full years, but how many do I have left as this disease does its wicked work? I can still move my legs, but God, do I miss walking and dancing.

This post is meant to break us and our loved ones out of this cycle. This Thanksgiving, let’s be grateful for the following:

1. The exciting research currently underway

In the three years since the Ice Bucket Challenge, we have seen more progress in research about the causes of and treatments for ALS than I ever dreamed of when I was diagnosed. Just a few months ago, the FDA – with guidance from the ALS Association – approved Radicava, the first new drug for ALS in over 20 years! To keep up with advances in research as well as drug trial news, follow these organizations on Facebook or Twitter: The ALS Association, ALS TDI, and ALS News Today.

2. We are not alone

In addition to the local monthly support groups hosted by The ALS Association, did you know that this fantastic organization arranges fun events for ALS families year round? My chapter hosts a Zoo Day and a picnic gathering at a local farm. Follow your local chapter on Facebook or Twitter so you don’t miss out! You can also get support without even leaving home by joining online support groups. I belong to six on Facebook!

3. Caregivers show us love every day

I am constantly amazed and humbled by the devotion of my caregivers. Whether they are family members, friends, or professionals we hired through an agency, they work tirelessly to see to my personal needs, from feeding me to toileting. What’s more, they do it in a way that preserves my dignity. Then, I think of all the ways they support Evan. An ALS spouse is never truly off duty, so it’s easy to get behind on housework and neglect self-care. My caregivers make such a difference in Evan’s quality of life by helping out with laundry and staying with me while Evan runs errands or takes a little time for himself. Make a list of everything that your caregivers do for you. It will give you something to do during the four hours your turkey is it the oven.

On that note, remember that November is Caregivers Appreciation Month. It’s not too late to thank your caregivers with a heartfelt note or some flowers!

 

This post is dedicated to my caregivers: Amelia, Aubrey, Brenda, Cindy, Evan, Mallori, Melissa, Paige, and Renee (AKA my mom).

Unabridged: “Is Your Doctor Hurting Your Mental Health? Why You Need an Emotionally Intelligent Doctor and How to Find One”

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If you are anything like me, you do a little research before choosing a doctor. Patients can easily learn about the traditional aspects of their doctor’s qualifications, such as the college they attended, years practicing, and awards earned, with a simple Internet search. However, it’s quite a bit harder to get a feel for a doctor’s emotional intelligence. Emotional intelligence is the ability to think and gather information about emotions, and then to use that information to achieve goals. Goals may include managing one’s own or others’ emotions, like staying calm, cheering someone up, or deciding how to share important news.

Whether or not your doctor practices emotional intelligence will make an enormous impact on the quality of your care and mental health. At best, a doctor lacking emotional intelligence can make you feel unheard, unimportant, or confused. At worst, you may end up feeling completely devalued or even traumatized.

Let’s travel back in time one week. Zoom in on me lying on the table in the OR. Right away, things started going wrong. I stayed on the table for a half hour while nurses darted around me like frightened birds, trying to find out where the surgeon was through every phone and pager in the room. One nurse even ran out into the hall to ask random people the question on everyone’s lips: “Where is Jeff?” I knew the instant he finally arrived because he owned that room. Even though my face was covered, I could feel him walk towards me, the nurses falling silent as he passed. He never paused his diatribe about paperwork and how he refuses to do another page today. He didn’t even stop when he put his hands on me. I remember thinking, he should see my face, speak my name, explain the procedure to me, anything to indicate that he knew he was touching a sentient, feeling being. That’s what an emotionally intelligent doctor would do. When he touched me, I felt like a piece of meat.

Next, the team couldn’t sedate me because of my low blood pressure. I was paralyzed when I heard this. That’s right, heard as in, overheard. No one said, “Your blood pressure is pretty low. Has this ever happened before?” No one said, “If we do this procedure right now, you won’t be able to have a sedative. How do you feel about proceeding?” Taking care of a patient means approaching him or her with empathy. A cornerstone of emotional intelligence, empathy consists of admitting ignorance about a person’s inner life and taking steps to remedy that ignorance by asking questions and imagining a different perspective. However, Dr. Jeff was too busy ranting about his least favorite nurses and why they should get fired to address me, much less ask for my opinion.

The team gave me Lidocaine, which didn’t cut it – pun intended. Apparently, Dr. Jeff remembered he was operating on a person because he finally spoke to me: “You are going to feel just a little pressure here.” I braced myself. Then, a fire alarm went off in my brain, screeching, “Sharp! Sharp! Sharp!” as red strobe lights blinded me. I cried out when I felt the blade going in and out of my skin.

“You are going to feel pressure, there’s nothing wrong with that,” Dr. Jeff patronized. Did he forget I was not sedated?

The next thing I heard was, “Wow, she is bleeding all over the place.” This is not what you want to hear immediately after someone slices your jugular. It seems that one of my medications contains an anticoagulant. At that point, an emotionally intelligent doctor would have addressed me to manage my emotional experience of the surgery and reassure me. You probably know Dr. Jeff well enough by now to realize that this didn’t happen. In fact, after he closed the artery, he joked, “Now don’t go repeating anything you heard in here.” Naturally, I interpreted this comment to mean, “Hey, Right Shoulder and Side Neck, thanks for being such a good sport. Feel free to publish this experience as a non-example in your article on emotional intelligence in ALS News Today.” So here we are.

Apparently, a lot went right with the surgery. The results were exactly as hoped for. Still, imagine my surprise when I returned to my room to find my mother and husband smiling. They squeezed my hand, kissed my forehead, and told me how brave I was. “The surgeon stopped by and said that the procedure was a success!” my mom said.

It was then that I started to cry. The experience of being helpless to pain and violence dragged me back eleven years to the night I was nearly murdered. My PTSD symptoms flared to life; anxiety and depression crept in, first through nightmares, then into my waking life. I kept thinking about how different my mental state would be if Jeff had just spoken to me. I remembered how my would-be killer barely spoke to me, either. Why would he? I was meat to him, too.

How does the term “medical success” not take patient experience into account? Answer: when the success is being described by a doctor who shows zero emotional intelligence. No one deserves this treatment, especially not those made vulnerable by disease. Emotional intelligence in doctors is an absolute must, just as vital as the medical degree that allows them the privilege of being in the room with you.

Lucky for me, the doctor I see most frequently, a neurologist named Dr. Goslin, is an expert at practicing emotional intelligence. From the moment I stepped into her office, I felt like I was the most important person in the world to her. She wanted to know all about me, way beyond my ALS story. In fact, she knows as much about me as some of my friends do. The day I met her, all she wanted to do was listen. Then, she asked me about my emotional state and medical goals. I told her I felt positive, ready to fight, and I wanted to survive this terminal, currently uncured disease.

Her response? “I think that’s a great goal, and with the way research is going we definitely have reason to hope.” I knew what I had said would be laughable to many people, but she managed to respect my feelings without making me promises she couldn’t deliver. That conversation set the tone for every future interaction we had. We follow a treatment plan that focuses on the goal of survival by staying ahead of the disease and minimizing its strain on my body while I wait for the cure. Dr. Goslin used emotional intelligence to learn about me and achieve her goal of designing a treatment plan for me, not just my disease. Now every time I see her, I feel empowered. She is an important part of keeping my mind healthy.

When I decided to write about how the emotional intelligence of doctors can affect a patient’s mental health, I asked Dr. Goslin if I could interview her. She agreed with enthusiasm.

At the beginning of the interview, she said, “I think that emotional intelligence as you have defined it is one of the most important aspects of being a good clinician. Acknowledgement of the importance of emotions is part of treating the whole person and not just the disease. [However], my medical training did not address this aspect of care at all.  There wasn’t any acknowledgement of the importance of emotions (of the patient or of the self) in caring for patients.”

Well, that explains Dr. Jeff, but what about Dr. Goslin? Where did she learn about emotional intelligence and how to practice it?

“I have attended various educational meetings regarding awareness of this topic, particularly based on mindfulness, meditation, and being in the moment. It is definitely something that I cultivate,” Dr. Goslin said.

She went on to explain, “A lot of emotional intelligence comes from experience and a willingness to be open to emotions, both mine and others. When emotions arise that would typically be unpleasant or uncomfortable I tend to allow them to flow over me, and I sit with them, without actually judging them as negative. I then use awareness of the emotions to help determine what the patient finds most important to have addressed and how best to do this.”

Being a doctor who practices emotional intelligence sounds difficult, even draining, but Dr. Goslin can’t imagine treating her patients without interacting with their emotions. “I believe that patients’ emotional response to disease and to their care factors heavily into how effectively they can be treated. Fear and anger are two common emotions that occur in the setting of illness and that can impede medical treatment. Often when a doctor can recognize and address these emotions, road blocks to treatment can be removed.”

“How does practicing emotional intelligence affect you on a personal level? Is it challenging?” I asked.

“I think that emotional intelligence sometimes allows me to have a closer relationship with patients, which can make my sorrow for the patients more extreme. It is also important but sometimes difficult to recognize my own emotions and not let them interfere with patient care. For example, before going into a room to give a patient a diagnosis of ALS, I might be feeling fear and anxiety about how the patient will accept the diagnosis and how well I will be able to respond to the intensity of emotions that are likely. I have to control these emotions so that the patient can be the appropriate center of focus.”

When I asked her what emotional intelligence brings to the table when dealing with a terminal disease like ALS, she answered with the optimism that is perhaps her defining characteristic: “While ALS is terminal, it is not without treatment and hope. I think that use of emotional intelligence results in a closer patient doctor relationship and builds a level of trust and openness. I hope that the positive emotions that I bring to treating diseases (even terminal ones), increases the likelihood that patients will also have positive emotions.”

So, how can you find the emotionally intelligent doctor you need and deserve to keep your mind mighty? Dr. Goslin, of course, has the answer. “In some ways, I think the web based assessments of doctors can reflect their emotional intelligence because I believe that patients have greater satisfaction when treated by a doctor with emotional intelligence. Of course these assessments can be also be done by patients who are unhappy with a doctor for  unrelated reasons, like the doctor wouldn’t prescribe narcotics.”

Keeping that caveat in mind, I recommend using the following free sites for finding reviews: healthgrades, RateMDs, Yelp, and Zocdoc. Once you have a list of a few you like, you can call each doctor’s office or sometimes even email the doctor directly to ask if he or she follows what I call “The Goslin Equation:” mindfulness + meditation.

Need help planning what to say during your phone call or in your email? Check out this script:

“I am interested in working with a doctor who practices emotional intelligence. How is emotional intelligence part of the way you treat patients? Can you tell me if you have had any mindfulness or meditation training?”

Now go get the fantastic care you deserve!

Abridged version originally published by ALS News Today on October 2, 2017

 

 

 

 

 

The Surprising Reason I Need to See You Dump Ice Water on Your Head

For me, the Ice Bucket Challenge is not just a way to raise money for ALS research. It’s not just about hope. The effect on me goes much deeper when I watch the videos. I know I have a vast support system that includes you, my dear readers. However, I can’t see you read my blog and articles. I get statistics on how many people read my words, and occasionally there are kind comments, but there’s a certain distance between us.

When I watch your Ice Bucket Challenge videos and you say my name, I feel seen. I feel less alone. The gift you give me when you make and post those videos is long-lasting and powerful. You kindle my heart, and I hold that light in my chest until next year when it’s time to repeat the challenge.

This year, I have only seen one video, and that weighs heavily on me. I feel forgotten, like the challenge was just a short-lived trend, not the promise of support and camaraderie that I originally believed it to be. I am holding on to hope that the last few days of August will surprise me, though.

Won’t you let your heart kindle mine?

If you need a reminder of how the Ice Bucket Challenge, follow the instructions below. Don’t forget to challenge three people in your video and tag them when you share the video on Facebook. If you are able to make a donation, you can do it at alsa.org.

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Are you wondering what the donations have accomplished so far? Check it out!

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On the Delivery of my CDC National ALS Conference Speech

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This morning, my mom and dad attended the CDC National ALS Conference to deliver a speech I wrote. I had hoped to attend the conference myself and have my husband speak for me since my voice is almost completely lost. However, my ALS threw a few wrenches, a hammer, and a screwdriver in that plan. At first, the trip seemed so manageable. However, as I learn more about the process of transporting the breathing machines and my wheelchair, and the damage that could be done to them, I have become uncomfortable with the idea of travel. It just seems a bit too risky to me. If my wheelchair is disassembled, I would be up a creek without a paddle. And there would be piranhas in the creek. And a hole in the boat. Plus, my intense spasms could make for a rough and painful flight. This is the nature of my beast.

Watching my mom give the speech, I felt no bitterness or envy. Her practice with my dad showed in her fluency. She delivered my words perfectly all of the jokes landed, and she addressed the room with conversational warmth that engaged the audience and fit my message. I was thrilled, smiling like a lunatic as I watched her do what I couldn’t in exactly the way I hoped. My dad handed out my business cards at the break while my mom texted that everyone raved about my speech and promised to email me. I have already heard from the VP of Public Policy at the ALS Association! The gratitude I feel for my parents is bigger than words.

I hope to get a recording of the speech soon to share with you. Stay tuned!

Help Launch Phase 2 of the “Save the National ALS Registry Campaign”!

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WANTED! I am looking for people with experience canvassing for petition signatures. Phase 2 of my “Save the National ALS Registry Campaign” is to create and publish a guide that allows citizens to reach out to their neighbors and get signatures to send to representatives along with a letter explaining why we need them to oppose trump’s budget as long as it includes completely defunding the National ALS Registry.

Even if you don’t have experience, message me if you are willing to help do some research on how to support and mobilize advocates who are ready to pound the pavement!

Remember, this is NOT a partisan issue. You can love Trump and still advocate for the ALS community! #ALSaware #DefeatALS #NationalALSRegistry

Pacing Myself

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I have always struggled to acknowledge and accept my limitations to the point that I often push myself far past them. From middle school through college, I participated in at least three extracurricular activities each year. OK, that’s a lie. It was more like four or five. I was in a leadership position as often as possible, too. Of course, that all came on top of a driving need to get straight A’s (and yes, I know that is a misplaced apostrophe, but I stand by it as a legitimate way to make a letter grade plural).

Latin

In high school, I was president of Latin Club. In this photo my dad and I are on a Latin Club field trip.

My first year teaching, I started the middle school book club, served on the information technology curriculum committee, proposed and planned an interdisciplinary curriculum fellowship and a fellowship to rework the English curriculum to include multicultural literature.

I love being busy, operating at full speed, running out of room in my planner, making multiple to-do lists and slashing through each item before falling into bed exhausted.

Now, though, at least half the days of the week, just functioning leaves me too tired to do anything productive. ALS puts such a strain on the body that simply existing is like running a marathon every day. Three years into this nightmare, I’m finally coming to terms with the fact that I can’t set the same amount of goals for myself as I used to. Doing that sets me up for depression, frustration, and failure. If I want to preserve my mental health and use my time well, I have to learn to prioritize and decide where to scale back. I’ve got to stop spreading myself too thin. Thus, without further ado, my freshly pruned list of goals:

1. Enact Phase 2 of my “Save the Registry” campaign (you didn’t really think I would stop at an article and blog post, did you?)

2. Fundraise for The Walk to Defeat ALS

3. Write one essay or section per week for my book on living with ALS

What I expect to sacrifice to accomplish all of this is the frequency of my blog posts and social media updates. Rather than posting every few days, I think it will only be manageable to post once every 1.5 weeks. I consider this a loss since connecting with readers is such a source of joy for me. However, I am hopeful that after I torpedo Trump’s attempt to defund the National ALS Registry and complete my fundraising efforts at the end of September, I will be able to write for my blog weekly. Getting my muscle spasms under control would also be a big help since I wouldn’t spend half the week sedated by Baclofen and Vicodin. The plan right now is to increase the amount quinine sulfate I take and undergo a test to see if installing a pump to push Baclofen directly into my spinal fluid would eliminate the spasms. The pump should increase the effectiveness of the Baclofen while diminishing the sedating side effects. I will definitely keep you posted on that.

For now, I will conclude by thanking you for your support of my writing, my health, and my dream of a world without ALS. I’ll write again soon(ish)!

“Extraordinary” Collaboration Brings Together Project MinE, Answer ALS and the New York Genome Center

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Here’s something to smile about! A big thank you to #TheALSAssociation for facilitating and helping fund this collaboration and countless other invaluable partnerships. In the shadow of Trump’s attempt to defund the National ALS Registry, witnessing The ALS Association’s commitment to streamlining research efforts to push us ever closer to a cure is truly heartening!

PS I know you are wondering how The ALS Association is able to fund so much research. It is possible because of the Ice Bucket Challenge, which is coming up in August. Get ready to get wet!

Contact Your Representatives to Save the National ALS Registry!

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The National ALS Registry is in danger of being defunded! Use the following text to write to or call your representatives and let them know that you expect them to oppose this atrocious proposal (contact information here148).

The Honorable [NAME]
United States House of Representatives (or: United States Senate)
United States Capitol
Washington, DC

Dear Representative (or: Senator) [NAME]:

I am writing to ask your help to ensure that federal funding is preserved to help people with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. If fully enacted, the recent budget proposed by the president will seriously impact the lives of people suffering from ALS and their families. In fact, it may even be a death sentence. According to a joint statement from The ALS Association, the Muscular Dystrophy Association and the Les Turner ALS Foundation, “The Administration’s budget proposal, if enacted, would eliminate the opportunity for people living with ALS to directly connect with a wide range of clinical trials and epidemiological studies.”

Specifically, the president’s budget calls for complete defunding of the National ALS Registry, one of the greatest sources of finding a cure. This is a matter of life and death, not politics. This budget proposal is not only mean spirited and hurtful; it will also dramatically roll back the progress that had been made in the past few years to find a cure.

I know there are a number of serious budget issues under review. However, I think, and I hope you do as well, that those that directly impact the lives of our citizens should be preserved and fully funded. (Optional: Insert personal story of the impact of ALS on your life).

As a resident of (STATE), I hope that I can count on your support and look forward to watching closely as the president’s budget moves through the legislative process.

(Optional) If you need more information on the impact of ALS on the people in our state, please don’t hesitate to contact the ALS Association of (STATE ORGANIZATION) at: (insert chapter website).

Sincerely,

Your Name