Thinking about death...

Despite the rather morbid title I will assure you I’m not suicidal just to get that out of the way

No this is more of a chat about mortality and prognosis's...

Today we met with my neurologist, the head of the movement clinic as well as a group of other specialists including oncology, genetics, GI, ENT/Pulmonology, audiology, and others. We were talking about a number of things but the main focus of the larger meeting is what do we do now? My body is such a strange thing that likes to randomly malfunction that we need to put a plan in place to try and make things not get much worse, and think about the future. My prognosis is completely unknown, though as I get older, specifically if I live to get into my 50s+ I run the risk of a number of quite bad things.

Neurology said at one point that “you could live until your 80s or you could die at like 35. We don’t know.” That was...a punch in the gut to say the least. Since I. Already have a benign tumor sitting in my head that will need to be continuously watched, it’s not causing problems now but if it starts to grow or change then we worry a bit. Due to our family’s screwed up genetics there’s cancer on both sides of the family of various types, though most are in the rather high risk group (lung, bile duct, brain, breast, and possibly ovarian) out of all of us I run the highest risk as I 1. Already have a benign brain tumor 2. Have PCOS and a kidney cyst (for some reason my body likes to product cysts in addition to those I also have one in my sinus) and have two already confirmed genetic variants of unknown significance (luckily they aren’t the ones that cause MLD but they’re ARSA pseudo  deficiency)

In the mean time we’ll continue to carefully monitor and wait for the whole exome sequencing to come back, other than that, just live life to the fullest and hope each day isn’t the last.

It is hard to know in the back of your mind that you might kick the bucket at any time...but luckily I have a good team and support system, so even though that looms on the horizon, we’ll do all we can with the time that we have.

Until next time,
Max