Jane Paberit, a woman from Estonia, was diagnosed with ALS in 2017. Her diagnosis and decision to seek assisted suicide in Switzerland sparked public discussions in Estonia about issues like euthanasia, palliative care, and what constitutes a dignified end of life. ALS is a rapidly progressive nervous system disease that leads to loss of muscle function and death, with about 20-25 new cases diagnosed in Estonia each year. Jane's illness progressed quickly, making daily tasks difficult, and she chose assisted suicide rather than prolonging her life through medication.

1. Amyotrophic lateral sclerosis
- a story about an Estonian
who was diagnosed with ALS

2. 2
Hi!
This is my presentation about a disease called ALS. All the work is written on the
example of my home country Estonia. I chose this topic because three years ago
when this story about a woman who got ALS, got on the news, there was a
discussion about eutanasia - whether it should be legal in Estonia or kept as illegal.
The woman, Jane Paberit, who was diagnosed with ALS was my family friend and
she got very “popular” in Estonia and thanks to her, Estonians started to think
seriously about the ALS and eutanasia legality.
ALS is not very common disease but it’s a disease what ends with death - you can
take medications and do whatever you can, but ”thanks to” its rapidly
progressiveness, it unfortunately ends with death.
Also I’m sorry if there are any typos in this presentation - I tried my best.
by Marja Liina Soasepp

3. About ALS
1

4. So.. what is this disease, so called ALS?
▸ ALS is a disease belonging to the group of motor neuron diseases, in which muscle
weakness and muscle wasting occur for unknown reasons.
▸ ALS is also known as a Lou Gehrig's disease
▸ It is a rapidly progressive disease of the nervous system, the frequency of which is about 6
cases per 100,000 inhabitants.
There could be about 70 patients diagnosed with ALS in Estonia at the moment, and about
20-25 new cases of the disease are diagnosed every year.
4

5. Nervous system parts that are involved
▸ Motor nerve cells in the brain (upper motor neurons) and spinal cord
(lower motor neurons).
▸ Autonomic and somatic nervous system are both affected
1. In autonomic nervous system there are autonomic nervous
abnormalities
2. In somatic nervous system causing degeneration of somatic MNs
5

6. ▸ In up to 60-70% of patients, the disease begins with spinal symptoms, i.e. weakness of one
arm or leg and muscle wasting.
▸ In the remaining cases, it is a disease with a bulbar onset, in which speech and swallowing
disorders are first to occur.
The first symptom can be weakness of one arm or leg, which patients notice when things
no longer hold in their hands or the patient starts to stumble and fall.
▸ The death of neurons due to the effects of toxins is due to the increased flow of calcium
through the cell membrane, which results in an increase in the proportion of free radicals in
the cell.
Functions of the nervous system that are
apparent and/or impaired in ALS
6

7. 7
▸ It is mainly an autosomal dominant type of inheritance, and in 10-20% of familial cases there
is a mutation in the superoxide dismutase gene (SOD1 gene), which is located on chromosome
21
▸ Signs of damage to the lower motor neuron are
asymmetric muscle weakness, atrophy, painless muscle twitches under the skin or
fasciculations and decreased muscle tone.
At the same time, symptoms due to upper motor neuron damage may appear in the form of
increased muscle tone, live tendon periosteal reflexes, and pathological reflexes.

8. Jane Paberit - a woman
who chose eutanasia
because of ALS
2

9. What happened with Jane?
9
▶ Jane was diagnosed with ALS in 2017 and less than two years later, Jane headed
to Switzerland to perform assisted suicide at Dignitas. She was the first
estonian to perform it in Switzerland.
▶ Jane's first symptoms were worsening movement problems and extreme
fatigue - it was already clear to her that she had ALS.
▶ The initial symptoms are actually almost imperceptible, usually they are
confused with laziness and reluctance to get up, but in fact it is a slowly
progressing disease and by recognizing the symptoms, you have actually
already lost almost 70% of your motor neurons

10. ▸ Her extraordinary story sparked a
public discussion in society,
where death, assisted suicide,
palliative care and many other
topics related to a decent life
were discussed. Jane made it to
her mission to raise ALS
awareness, talking about the
bottlenecks in the social system
and the dignified end of life was
her last job.
10

11. “Since the mother's illness
progressed very quickly, she was
no longer able to do the housework
and it fell on our shoulders. Her
hands stopped moving and it
became difficult to speak. She did
not want to take the medication,
which she said would have given
her only three months to live.
11

12. Analyzing

13. Participating in this course gave me a lot of motivation to continue
studying medicine at university (I am currently in the last year of high
school). Thanks to this course, when I hear about some kind of disease, I
always think about the details of that disease in my head - or I should say
that at least I try :D.
I have started to research more about people's health and have acquired
this "crazy" quality of asking my friends for facts about various diseases
and phenomena that are actually visible around us on a daily basis. They
love that thing about me and I love to give fun but interesting and
instructive facts to my friends.
I really enjoyed this course and I’ll suggest that to others too !
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14. Thank you for reading my
presentation!