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by androa 1330 days ago
Been diagnosed for about 10 years with RRMS.

One thing that has really helped me is the combination of remote + pair programming. Having an extra mind to work together is amazing. Doing it remote removes the stress of commute, noise/stress from the office, and allows for relaxing breaks where I can even lay down if I want.

Using note taking frequently, small commits, TDD and drawing diagrams continuously while pairing also helps keep my mind in context and picking up the thread after breaks. Whimsical has been a fabulous tool for this.

I've been of Aubagio before, and now I'm on Tysabri. The difference is staggering. Aubagio gave me tons of side-effects like hairloss, indigestion, increased fatigue and general feeling of being sick. And it still was not able to prevent flare-ups and lesions.

With Tysabri I can't identify a single side-effect. In the three years I've been on it I've not had a single flare-up or lesion identified after MRs.

Something I also believe helps me a lot is simply living in a country with healthcare and strong welfare. Knowing that when it eventually comes to not being able to work anymore, I have public disability pension that will cover 63.5% of my current salary until I reach retirement age (where normal retirement takes over). Having this knowledge removes a lot of stress and despair, which I genuinely believe helps keeping the disease under control.

3 comments

I miss Tysabri. I was one of the lucky ones who had the 'side effect' of feeling physically great for a week afterwards.

But of course Medicaid won't pay for IV infusion. So nope!

Biogen offers non-income dependent financial aide that covers $20k a year towards the drug, and $2-3k a year towards the cost of infusions.
Another upvote for Tysabri. Makes a huge difference.

Regarding Whimsical - never heard of it. So for myself and others: https://whimsical.com/flowcharts

> "Whimsical combines whiteboards and docs in an all-in-one collaboration hub."

I'm on Tysabri as well. There have been no documented significant side effects in the US, which is good. Many people have many years between relapses, if they relapse at all.

However, there is additional risk in taking it if you are JC Virus positive.