
Ask HN: Are you a programmer with Parkinson's? - septerr
A friend, who is a programmer, was recently diagnosed with Parkinson&#x27;s. He is in his late 30&#x27;s.<p>Does any one here have Parkinson&#x27;s?
How many years has it been since you were diagnosed?
Are you still programming?
What advice would you give my friend?
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trcollinson
I do not have Parkinson's but I have a form of Muscular Dystrophy which acts a
lot like Parkinson's (to the point where a number of people get it confused).
In some ways I have been quite lucky; mine began to show signs when I was born
and has progressed slowly my entire life. It causes tremors, spasms in my
hands and arms (and neck and eyes), and muscle weakness. Because of the
progressive nature I don't really notice it. Your body is amazingly good at
adapting to things even rather quickly progressing things.

Luckily we don't move a lot in this business. I might type slightly less
quickly than most people (though I am actually quite a fast typist, I think
it's slowing with age), and I might make more typos (thank goodness for IDE's
which help correct things like that!) Ultimately I can code all day without
much problem at all. Maybe other engineers are less tired at the end of the
day, but who knows? I can only judge how I do based on my own experience.

The one big problem with Parkinson's is that it can have cognitive effects. I
have read that it can cause dementia and other issues. This could obviously
effect coding.

Anyway, I am glad to answer any questions.

~~~
HalcyonicStorm
what kind of work do you do?

~~~
trcollinson
I am a software engineer, often a lead but still very deep into the code. I
also consult and speak at conferences regularly.

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hawkeyegirl
I was diagnosed about 5 years ago. Although programming isn't my primary job
anymore, I still do it occasionally and did so for at least a couple of years
acceptably. The main thing I noticed is that the ability to focus on complex
logic or chains of events went seriously downhill so I had to do a better job
of sketching out my algorithm before I started to code and making lists and
diagrams for myself. I could no longer hold it all in my mind. Medication
(Sinemet) does help somewhat with the ability to focus. Also finding times
each day when you are clear from distractions -- this can be accomplished by
setting aside time to deal with the distractions and time when you will not
deal with them. I find I can focus for maybe an hour at most now, and then I
need a break. This is manageable when you know about it and plan around it. As
I've moved to more managerial type tasks, it actually works out ok. If you
intend to stick to strict programming, I advocate being as organized as
possible. I used to have an excellent memory and it's just not there anymore,
but I mostly do just fine because I've learned to be diligent about creating a
task for myself for everything I need to do and not relying on myself to
remember it. Good luck!

~~~
septerr
Thank you for sharing your experience. It is encouraging to read about others
in our field coping, and coping well with Parkinson's. Moving to more
managerial type positions does seem like a good idea.

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hanschagi
Having been diagnosed with Parkinson's 15 years ago at age 36, I today still
have no mental limitations and I can concentrate the same way as I could
before the diagnosis (as has been tested several times by neurologists). Among
other tasks, I am still programming and leading development teams. It seems to
me that programming is the ideal job for someone with Parkinson's since one
can do it independent of the fact that some motoric skills such as walking are
reduced or one's voice is not so crystal clear anymore. I learned from my own
experience that an illness or handicap does not mean to drop out of the
professional world, in contrary I made very good experiences with
ill/handicapped colleagues and employees since they are usually very
dedicated. The most important thing from my view is to address any and all
issues related to such a condition in an open, respectful manner so that your
ill colleague does not feel pressed to hide problems and ask for help
concerning things like commuting to work etc. (sorry for my inelegant English,
it is not my mother tongue).

~~~
septerr
Thank you, your experience is very encouraging.

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drostie
One thing that you guys might be interested in: there has been some limited
investigation into tandem cycling as a therapy for Parkinson's, though it's
somewhat anecdotal. What research there is suggests that it's about being
forced to cycle at 80-to-90 rpm at a lower resistance which still keeps your
heart rate up, as opposed to cycling voluntarily at whatever pace you want
while being coached to keep your heart rate at the same level: 5 people who
were forced to cycle at the higher RPM showed dramatic improvements in
symptoms, as opposed to 5 who set their own RPM with coaching.

Since those numbers are so low, there is right now a team at the Cleveland
Clinic which recruiting for a much larger study (100 people total) that
they're calling CYCLE: 40 people with PD will do forced exercise on a
motorized stationary bike in the lab, 40 will do voluntary exercise on a
normal stationary bike in the lab, and 20 will not be directed to exercise at
all in the lab:

[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4415238/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4415238/)

This is right now still in the recruiting stage so it probably has a couple
years before it yields results; but if your friend can't live in Cleveland for
a year, you could try to find another way to keep yourself at the 80-90 RPM
levels, whether tandem biking with your friend or else by jury rigging a motor
or perhaps even self-discipline.

~~~
septerr
Thank you! Thank you for linking the study.

~~~
drostie
No problem; I'm glad it was helpful.

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peterjpierce
Great question! I am just starting to figure out adaptations to cope with
multiple sclerosis (another neurological disease) that has stolen my ability
to touch type. I'll be watching here for advice, too.

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mathattack
I have a family member with Parkinson's. She was able to work in a thought-
requiring field for almost 10 years. It's gotten much more treatable in recent
years. You friend might still have to get used to working at 60-80% rather
than 100% though. It doesn't go to 0, but it's not 100 either.

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uuuuuu
I hate typing, so here's a short reply. I type less every year. 6 years from
diagnosis. I seek work that is more looking at stuff to find the fault, and
less data entry. Voice recognition is fine for dictation, but sux for editing
code. Riding my bike hard every day makes a HUGE impact on my typing speed, so
a decent bike commute is mandatory for me. Glad I'm in the software biz, and
not a musician or surgeon. Never thought I'd say that!!!

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jbandela1
One thing I would do is make sure that your friend has been evaluated by a
neurologist who specializes in movement disorders and not just a general
neurologist. In recent years we have gained a lot of knowledge about specific
neural pathways.

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michalxnet
I suggest you to watch this talk on this years ng-conf.

[https://youtu.be/mAjjI35RcUE?t=11949](https://youtu.be/mAjjI35RcUE?t=11949)

~~~
drostie
"This video contains content from NBC Universal, who has blocked it in your
country on copyright grounds. Sorry about that." \-- in the US.

~~~
michalxnet
Well there is like 30 seconds from House TV series, so I guess they can claim
the whole video (9:57:33) be blocked in US.

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radnam
There are nuero rehab practices and physical therapists who specialized in
this area. I would start by having a conversation with one of these folks.

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totoykhu4213
full upgrades score 100000

