Sandy Lemkin

“Sandy Lemkin truly is the nerve center of our clinic,” explains Pranger ALS Clinic Director Stephen Goutman, M.D., M.S. “Her tireless passion to care for and support those suffering from a diagnosis such as ALS serves as inspiration to myself, our team, and countless people affected by the disease.  She very much makes a difference.”

We sat down with Pranger ALS Clinic Clinical Care Coordinator Sandy Lemkin, BBA, BSN, RN, to learn more about what makes this human dynamo tick.

What inspired you to become a nurse?

Initially, I got a business degree and worked for a number of years in the automotive industry and at IBM. After a while, I realized that I wasn’t feeling fulfilled and didn’t want to “just push papers.” I wanted to help people.

My college roommate had become a nurse and seeing her in action really inspired me. I decided I was going back to school to get my nursing degree and help people.

What do you like best about what you do?

There are so many reasons. I love multitasking. I like the challenge of having to do a lot of things at one time, which was what made me successful in business as well. As a nurse, you definitely have a lot of things going on all at the same time.

Also, I love working with a team and helping to lead the team. We have an incredible group at the Pranger ALS Clinic.

Then there is the helping people part that I mentioned brought me to the nursing profession. I like developing processes and programs that help patients, especially terminal patients, like those with ALS, navigate their care – providing them with education, information, and support to go through a tough journey like ALS.

Lemkin with her college roommates. Lois Martonen (with her on the right) inspired her to become a nurse.

What do you wish everybody realized or understood about nursing? 

Generally, when you tell people you are a nurse, they’ll ask something like: “What hospital do you work at?” What I want people to recognize – and this is what I tell nursing students or people who are thinking about going into nursing – is that nursing is not just about being at a patient’s bedside. For instance, Jayna Duell, our ALS Clinical Research Coordinator, collects data and monitors research projects in our ALS clinical studies program. Nurses can be so many things. People should know that we encompass many aspects of health care, not just direct patient care.

You are the Pranger ALS Clinic Clinical Coordinator. What does that mean?

The team likes to consider me as the one who steers the ship. I am the main point of contact for patients and, as I explain to patients, I have a whole team that supports me in case I don’t have the answer to their questions. So, really it is navigating care for a patient and navigating their program to make sure that their care needs are being met in the appropriate amount of time.

How long have you been working in the Pranger ALS Clinic? What brought you here?

It has been 24 years now at Michigan Medicine, but I have been at the Pranger ALS Clinic for seven. My anniversary is actually this month. Before, I was a research project manager in Cardiovascular. I saw the posting and missed being in Neurology (I worked for seven years in neurogenetics), plus it was a clinical care coordinator position, which was a new challenge for me.

Lemkin at her MSN graduation with fellow classmate Courtney Keatting

What did you miss about Neurology?

I really missed the patient population. Neurologic issues can be a gray area of health care because there is so much we don’t know or don’t know how to fix. So much to be discovered. I wanted to be back helping these patients, who are hard to diagnose or who are facing a difficult diagnosis, like ALS. Right now, we don’t know how to successfully treat a lot of neurologic conditions.

Patients have to learn to live with these conditions, whereas in other departments —Cardiovascular, Orthopedics, etc. — you can usually fix something. This is not true here, so the patients are left with a big challenge.

This is what I wanted to be a part of.

This month is ALS Awareness Month. What do you wish that everyone knew about the disease? 

First and foremost, I wish people understood that ALS is different for every patient. This is something I try to explain to patients when they are first diagnosed.

One person’s experience with ALS is not going to be another’s. That’s why we approach every ALS patient in a different way, based on their needs and that of their loved ones and caregivers. It’s really an individualized diagnosis and should not be stereotyped to think that one person’s journey with ALS is going to be the same as another’s.

What advice would you give someone who knows a patient with ALS? How can they best support that person and their families?

Don’t wait for them to ask for help, offer help. They really need it, and they are scared to ask for it because they don’t want to burden anyone. Just reach out to them to say, “How can I help you? Can I make any meals? Do you need me to come over and watch your loved one or run errands?” Just offer help, and don’t wait for them to reach out.

Lemkin with her son Brendan, and his girlfriend Sarah Anderson

It’s also Nurses Week, with International Nurses Day coming up this weekend. How can we better support nurses?

First and foremost, just say “thank you” and appreciate what we do. I think that a lot of people recognize that we are the ones steering their care. We work side by side with doctors, so patients and their loved ones should appreciate what we are telling them. We are backed by physicians and other care team members, and the answers or care we are providing are coming from them as well.

What do you like best about working in the Pranger ALS Clinic?

I love our entire team. It really is amazing how well we all work together. Everyone who works with us really has to want to be there because it’s such a hard diagnosis. Most of us have been working together for a very long time. The dedication of our team and our incredible patient population is what I like best about working here.

1.  There are multiple types of ALS.

They are based on the body parts the disease affects when it initially shows up. Bulbar and Spinal are the two most common forms.  Bulbar onset initially affects the muscles controlling speech and swallowing.  Spinal onset initially affects muscles controlling the arms and legs.  There are several additional less common subtypes of ALS.

Figures 1 A & B from Dr. Feldman’s ALS Seminar in The Lancet

The Lancet, Figure 1 A: a schematic showing UMNs (blue), which relay signals from the motor cortex to the LMNs (yellow), which relay signals to the muscles.

2.  At the cellular level, ALS is characterized by degeneration of upper and/or lower motor neurons (nerve cells control muscle contraction).

Upper motor neurons connect the brain to the spinal cord, whereas lower motor neurons connect the spinal cord to the muscles.

3.  ALS is progressive and fatal 100% of the time.

Muscle weakness spreads from the initial onset to neighboring muscles, and so forth. This continues until patients are unable to swallow and eventually breathe.  The progression of ALS is very individual to each patient.

The Lancet, Figure 4 A: King’s staging of ALS, which rates the progression of the disease into four stages

4. In addition to muscle weakness, up to 50% of patients with ALS can also present with changes in cognition and behavior.

These cognitive and behavioral changes support the concept that amyotrophic lateral sclerosis is a global neurodegenerative disease along the same continuum as frontotemporal dementia.

The Lancet, Figure 1 C: amyotrophic lateral sclerosis occurs on a continuum with frontotemporal dementia

5. ALS is put into two categories based on family history.

Familial ALS occurs in patients with a family history of the disease (about 15% of cases), ALS can also occur in patients without a family history of the disease, called “sporadic ALS

The Lancet, Figure 4 C: a schematic overview of factors that affect amyotrophic lateral sclerosis risk (onset) and prognosis

6.  There are over 40 known ALS genes.

The most common mutations are to genes C9orf72, SOD1, TARDBP, and FUS. About 70% of familial and 15% of sporadic ALS cases are associated with a mutation to a known ALS gene.

7.  Environmental and occupational hazards are believed to have an impact on ALS risk and progression.

Veterans have a higher-than-normal rate of ALS.  Last year, we found that production occupations have a higher risk of ALS due to exposure to toxins.

8.  What exactly happens in the body that causes ALS is not completely understood.

However, research suggests that ALS impairs multiple cellular processes, including RNA, protein, and mitochondrial metabolism, trafficking (movement of cargo within neurons), DNA repair, and inflammation.

The Lancet, Figure 3: An ALS differential diagnosis chart

9.  ALS is incurable.

Treatment is focused on managing symptoms and strategies to improve quality of life. Therapies that can potentially lengthen life in some patients include riluzole, edaravone, non-invasive ventilation, and gastrostomy tube (feeding tube). Research is actively seeking and testing novel therapies.

10.  We believe that we can one day make ALS a preventable disease.

(not in The Lancet)

The Lancet ALS Seminar in Full

We sat down recently with Darla Goulet, MSW, to learn more about the woman behind the magic.

Darla Goulet, MSW

What inspired you to become a social worker?

I guess I have always been a bit of a social worker, even before I knew that was what I was going to do.

However, I wasn’t driven to go back to school to become one until my mom was diagnosed with cancer and was moved into hospice.  That was back in the ‘80s when the idea of hospice was new, and she was one of the first people in all of Michigan to be moved there.  I was blown away by the impact of her social workers, and how they not only helped my mom, but our family as well.

What do you like best about what you do?

I really love to educate, and for social work, education is huge.  Social workers are always teaching and helping people to understand what is happening and understand the resources available to them.  The role of the social worker is unique within medicine because we are not trying to fix anyone.  We are giving people the strategies and tools to help themselves.  I like that I can help people find their strengths and be able to navigate some pretty powerful stuff on their own, with just a little bit of help.  I think it’s great to see people, even in a really tough position, become advocates for themselves.

You first came to U-M through the Pranger ALS Clinic.  Why ALS?

Pretty much all my work in social work has been focused on end-of-life care, terminal illness, and that kind of thing. So, it seemed like a good fit.  At the time I didn’t know much about the disease, but it was something I was interested in.

What is the role of a social worker in a multidisciplinary clinic like the Pranger ALS Clinic?

I would say that there are two roles for a social worker at any multidisciplinary clinic, the primary one being to assist patients and their families, not just with resources, but with navigating a difficult system. Our health system is complicated in so many ways.

For those affected by ALS and other fatal diseases, there is also the end-of-life piece, which changes a lot in life, sometimes in unexpected ways.  We talk a lot in the clinic about anticipatory grief and how a progressive disease specifically affects the lives of patients and those close to them.

I have heard patients describe this change in a way that is spot on — before the disease their lives were big and broad, but with ALS everything gets narrower.  Their identity changes, relationships change, and roles change.

There is a lot of discussion surrounding that adjustment.  I also have conversations about hospice and what that means, along with palliative care.

People often ask me what it is like to die from this disease.  There are a lot of tough conversations surrounding death as it relates to ALS.

How do you handle those difficult conversations?

I hope that empowering patients with information will help take away some of the fear because, as you can imagine, there is always some fear associated with death.  After we speak, oftentimes they say: “Okay, I feel better,” “I didn’t know it would be like this,” or “I didn’t know hospice could provide this.” I think that it is often a relief to be given a safe place to ask those questions.

A key part is letting patients drive the conversation and ask questions.  Some people don’t want to know the details, and that’s okay.

Part of the Pranger ALS Clinic team, ready to run

You mentioned you have two roles, what is the second?

The other role of social work in any multidisciplinary clinic that works with such a complex population is to support my colleagues.  It’s a tough job, and there is a lot of compassion fatigue.  So, I also spend time talking to the staff.

What do you wish everyone knew about ALS?

People have heard of Lou Gehrig’s disease or ALS, but not a lot of them truly know what it is, in part because it isn’t common.

I would like people to learn what the disease is about and what it means to have it.

There is the functional decline, but there is also all the grief and pain that goes along with it.  ALS has emotional, spiritual, and, sometimes, physical pain, which affects not only the patient but everyone who loves that person.

What are some of the biggest challenges you see for those suffering from ALS?

Over the years, I often hear that patients and families feel isolated.  They get the diagnosis, and maybe friends and family are right there in the beginning, but as time goes on, people start to fall off until no one is coming around.

It ends up being a really isolating journey.

The other piece is the limited resources for those with ALS.  Don’t get me wrong, there are some great resources, but they are limited.

I think one of the biggest challenges people face is not having enough caregiving at home, which can be an expensive cost

How can those who know someone or a family dealing with ALS best support them?

I think it is incredibly important for people living with ALS and their families to have support because, as I said, ALS can be very isolating.  That support can look very different depending on the situation.  It can be hands-on care, it can be asking what tasks need to be done around the house, and it can be grocery shopping.  It can be asking, “Can I call you to just offer support?” Or, if they are spiritual, “Can I sit and pray with you?”

The important piece is making the patient not feel alone.  People can be very uncomfortable when someone they know is diagnosed with such a disease, so this is where education comes in again.   Helping people learn about the disease will allow them to feel more comfortable in providing support.

The Goulet Family, including her husband, five kids, one son-in-law, and two granddaughters

What do you like best about working in the Pranger ALS Clinic?

We have an amazing team and amazing providers.

I am truly inspired by their knowledge, their empathy, the compassion they show, and just their desire to help the folks we serve.  I think if we didn’t have such an incredible team, it would be hard to stay because this is a tough job.  I’ve been here for seven years!  This team makes all the difference.

I also love working with patients and their families.  Not only do I get to teach them, but they teach me, which is awesome. Anytime I have clinic, I learn something new and am inspired.  Honestly, I think people with ALS and their families are some of the most resilient people.  They readily adapt to everything.

Our brains like time to adjust to loss, and they don’t have that, but they adapt.  Of course, they have bad moments, but the majority of our folks find peace in the journey and live life to the fullest.  It is very inspirational to be part of this.  I mean, what an honor to be allowed into their lives, for them to share with someone who was initially a stranger, and allow me to be part of their journey.  It is incredible.

Muscle & Nerve’s summary of the paper in “Issue Highlights:”

3 BODY MASS INDEX ASSOCIATES WITH AMYOTROPHIC LATERAL SCLEROSIS SURVIVAL AND METABOLOMIC PROFILES (PAGE 208)

Weight loss early in the course of amyotrophic lateral sclerosis (ALS) is associated with shorter survival. This study assessed changes in body mass index (BMI) in individuals with ALS prior to the development of symptoms, and found that BMI decreased by more than 25% in the 10 years preceding the diagnosis of ALS, and that most of this occurred in the 5 years prior to diagnosis. They also found relationships between BMI, BMI trends, and survival. Certain metabolomic profiles were associated with BMI trajectories. An accompanying editorial by Drs. Dupuis and Chio reviews the complex and sometimes contradictory literature on BMI and ALS, and discusses the metabolomic profiles identified in the current paper.

When speaking about the environment, the NeuroNetwork for Emerging Therapies is usually connected with their work looking at how the world around us affects neurologic disease, especially ALS.  Man people don’t realize that in the lab, they worry just as much about how they affect the environment, as how it affects us.

Last year the NeuroNetwork lab was granted Platinum status by the University of Michigan’s Office of Campus Sustainability(link is external)‘s Planet Blue(link is external) initiative, the highest (best) rating one can receive.  In honor of the 6th annual Global Recycling Day(link is external), the NeuroNetwork “green team” shared the ways they reduce, reuse and recycle in the lab.

How we reduce, reuse & recycle: