Ask HN: Are you a programmer with Parkinson's?

[septerr]

A friend, who is a programmer, was recently diagnosed with Parkinson's. He is in his late 30's.

Does any one here have Parkinson's? How many years has it been since you were diagnosed? Are you still programming? What advice would you give my friend?

[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.

[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.

[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.

[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/

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.

[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.

[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.

[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!!!

[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.

[michalxnet]

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

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.

[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.

[totoykhu4213]

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