Psychology of Stress

Rachel Brackman

Psychology of Stress Assignment

Psychology of Stress
Rachel Brackman

Interview Schedule

Background/History

1. Can you take me back to the beginning, when did you first find out you had ALS?
2. What were your first symptoms?
3. What equipment did you have to get and what changes have you had to make to your
house?
4. Can you describe the emotions you experienced when you first learned of your diagnosis
and how did you react?
5. What was your family’s reaction when they first found out you had ALS?

Current Experiences

1. How have your symptoms progressed/what new symptoms are you experiencing since you
have been diagnosed?
2. Do you feel as if live isn’t fair to have given you this life changing illness?
3. Have you made changes to prepare for your progression of symptoms such as changing
your will or planning a funeral?
4. Did you or are you currently experiencing any moments of anger or denial during the
course of your illness and if so, how did/are you coping with those feelings?
5. Is there any advice you would give to another person recently diagnosed with ALS?
6. How has your diagnosis impacted your perspective on death and dying?
7. Do you feel like you have come to terms with your diagnosis?
8. Why did you decide to get involved with the ALS Association?
9. Do you ever worry about being a burden to family/friends?
10. What role has faith played during your illness?
11. What has been the most frustrating thing about your experience with ALS so far?
12. Have there been any rewarding moments regarding your diagnosis and if so, what were
they?
13. Have you had any trouble with getting around in the community such as public spaces not
being accommodating to handicap regulations?

Experience with Healthcare

1. Before being diagnosed, what were your perceptions of healthcare professionals?

2. After being diagnosed with ALS, how did these perceptions change?
3. Do you feel as if you are being included in your healthcare decisions?
4. How did your doctor tell you that you had ALS? Was he/she straight forward with you?
Was he/she empathetic?
5. Why did you decide to get involved with the Healey ALS Platform trial and can you describe
your experience with this trial?
6. Is there any advice you would give to a future healthcare professional like myself?
Psychology of Stress
Rachel Brackman

It all started when Mary noticed twitching in her right arm in March of 2022. She stated

that next came a decline in her handwriting, dropping things, and just feeling general weakness.

Then, a few months later in June, she noticed weakness in her right leg and knew something was

wrong because there was no pain. She went to her PCP who referred her to a string of doctors:

first to neurology, then orthopedics, and back to neurology. Mary was officially diagnosed with

Amyotrophic Lateral Sclerosis (ALS) on September 25, 2022. ALS is characterized by progressive

degeneration and loss of motor neurons in the spinal cord, brainstem, and brain. 1 Since her

diagnosis, Mary has seen a gradual decline in function. She now uses a rolling walker. She sates

that her speech has gotten slower, and she starts to slur her words toward the end of the day

because of fatigue. She now has adaptive equipment like grippers to help her hold onto forks,

pens, etc., and a rounded knife that she can use in a rocking motion rather than a sawing motion

given to her by her OT. She has significant weakness in her right arm, and spasticity has

significantly increased over the past few months.

When Mary and her family first found out she had ALS, she was in disbelief. She had heard

of the disease before because of Lou Gehrig and the ice bucket challenge trend that went viral to

raise awareness for ALS a few years back. She knew how devastating of a diagnosis it was and had

a hard time coming to terms with it at first. Mary and her close family kept the news private for a

month or two before announcing through social media about her diagnosis. It was from there, that

Mary started to turn the page on how she felt about having this condition. Her daughter and son

in law even planned to begin trying for a baby earlier than they had planned so that Mary could

have a chance to have at least one grandchild before passing away.

Psychology of Stress
Rachel Brackman

In terms of perceptions on healthcare professionals before being diagnosed, Mary and her

family had a very good perspective considering her two daughters both work in healthcare realm.

However, their perspective still changed since being diagnosed. Her care coordination team

consists of a neurologist, PT, OT, SLP, SW, RT, and nursing. Mary has only good things to say about

the hardworking individuals on her team. She stated, “I am so grateful for this amazing team of

healthcare professionals who have a deep passion for helping those with ALS.” Mary said her team

has done a great job of including her family members in all of her appointments, even mentioning

that her PT taught her husband how to perform different stretches on her. While Mary appreciates

all the hard work her team members put in to make her life easier, she wishes she didn’t have so

many healthcare appointments. She uses most of the little energy she has traveling to and from

these appointments and wants to spend that energy with her friends and family instead.

One key issue that surfaced in regard to ethics was how she has had to fight insurance so

many times now to get the adaptive equipment she needs. For example, Mary stated she needs an

AVAP which is a non-invasive ventilator to help her breathe at night. She states it has become a

standard for ALS patients to receive this type of ventilator, and her doctor told her she is one of

the only ALS patients to be denied this ventilator. Her doctor is currently appealing the decision,

and in the meantime, she is working with her care coordination team to see what solution they

can come up with. While Mary and her family have a good perception of healthcare workers, they

have started to see the bad side of our country’s healthcare system in terms of insurance coverage

and having to constantly worry about paying out of pocket for everything.
Psychology of Stress
Rachel Brackman

Mary is in the stage of acceptance. Mary stated that when she first found out she had ALS

she was in the anger and denial phase. Her doctor told her she wouldn’t be able to perform long

distance running anymore, which was her main hobby at the time. However, her perspective on

life and death has changed significantly over the past several months. She stated that while ALS is

such a devastating diagnosis, she is “focused on living, not dying”. This aligns with Kubler-Ross’s

stage of development which is characterized by a person focusing on enjoying the time they have

left or reflecting on memories.2 She stated that this diagnosis has completely changed her outlook

on life, and she is trying to live every moment to the fullest because she knows it won’t last

forever. Additionally, Mary has recently become an ALS Association advocate, helping to raise

awareness and money for research for ALS. For example, she created a team for an ALS walk to

help raise money, and her and her family organized a golf outing to help raise money for the ALS

Association in Mary’s name. Also, Mary decided to join a highly sought-after clinical trial to help

researchers better understand if/which medications may help to slow the progression of ALS.

Mary said she wanted to participate in this trial to hopefully help people who are diagnosed with

this condition in the future. Mary’s reflection on trying to focus on the good in life and her

advocacy work for the ALS association are two pieces of evidence to support the idea that Mary is

in the acceptance stage.

Furthermore, Mary has started to prepare for death such as planning out her funeral, even

asking my mother to give her eulogy. Making plans like these are also characteristic of the

acceptance stage.3 Lastly, Mary said “I feel more blessed than I have in my entire life.” She said

that she has never felt so much love and connection with so many amazing people which is the

most meaningful thing she could ever experience.

Psychology of Stress
Rachel Brackman

Mary has been a close family friend of ours for many years now so going into this interview

I expected it to be very comfortable and easy. However, once we got onto the subject of death,

that did make me hesitate when asking some of my questions. I know as a future healthcare

provider that possibly wants to work in neurology, I need to learn to become comfortable having

these conversations with my patients. That will help them to reach the acceptance stage, which

luckily Mary was already in. I think that in the future, if I ever work with patients with a terminal

illness, I can think back to this experience and how Mary’s outlook on life has changed. I can rely

personal stories from this interview to hopefully help motivate my future patients to live the rest

of their lives to the fullest while still knowing it is okay to express feelings of anger and sadness for

the unfair life they have been given.

Something new I learned about persons going through life changes out of their control is

that even though they may have reached the acceptance stage, they can still have bad days of

great emotion such as anger or sadness. I now realize that it important for a patient to express

these emotions throughout the entirety of their journey through an illness or condition.

One insight I gained from this experience is that as future healthcare professional, it is

important to let the patient make decisions for themselves even if I don’t necessarily agree. For

example, if a patient wants to come to therapy less often because they want to spend more of

their time doing more meaningful things to them, I may disagree with that as I think therapy is

very important. However, at the end of the day, it is what the patient wants that should be the

biggest priority. Along with this insight, this experience further emphasized how important it is to

be an active listener. In order to allow a patient to have a positive experience with healthcare,

they need to know that they have been heard.

Psychology of Stress
Rachel Brackman

Lastly, and what I consider to be one of the most important lessons I have learned from

this experience, is to be an advocate for my patients in the future. I want to remember how big of

an impact that Mary’s team had on her life every time they fought to get the equipment she

needed. This will remind me to always put in the effort and stand up for my patients so they can

get what they need for a better life and to optimize function. Overall, when helping someone with

a life-changing illness, I would want to treat someone how I would want one of my family

members, or myself to be treated. Don’t treat the person just for their illness, but rather as a

whole person who is trying to live the rest of their life to the fullest.
Psychology of Stress
Rachel Brackman

References

1. Gibbons C, Pagnini F, Friede T, Young CA. Treatment of fatigue in amyotrophic lateral

sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2018;1(1):CD011005.
Published 2018 Jan 2. doi:10.1002/14651858.CD011005.pub2

2. Kubler-Ross E. On Death and Dying. The Macmillan Company; 1969.

3. Thurn T, Borasio GD, Chiò A, et al. Physicians' attitudes toward end-of-life decisions in
amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20(1-
2):74-81. doi:10.1080/21678421.2018.1536154