SILVER LININGS, COOL DOCTORS AND HOPE

Silver Linings: A Short Brain Rot Update

The definition of a silver lining:
silver lining. Use the term silver lining when you want to emphasize the hopeful side of a situation that might seem gloomy on the surface. The common expression “every cloud has a silver lining” means that even the worst events or situations have some positive aspect.

Staying “hopeful” can be hard for people with a rare disease and no known treatment. For two and a half years my husband has been tested for every disease known to man kind. He is absolutely healthy. Perfect cholesterol, perfect blood pressure, low body fat, perfect weight, great heart, no Parkinson’s, No MS, No ALS, no cancer. He is the healthiest person on Earth who’s brain is shrinking. Very frustrating! FIVE neurologists have had his case. Some in Dallas and some in Denver. They all were old. OK not to insult but they were all over 60…older not OLD. They all wore white lab coats and had ZERO sense of humor. I was beginning to think Neurologists were born without personalities. Not ONE of them found my use of the term BRAIN ROT funny…until now.

I fired all 5 of them and got a new Neurologist recently in Denver. She is 40 years old. And cute. And wears cute clothes- no lab coat. And cusses. And laughs at my jokes and stole my term for Spinocerebellar Ataxia and now says “brain rot” to us. She ROCKS! She runs the Ataxia Clinic in Denver. RUNS IT! And not ONCE in our initial 3 hour meeting did she make us feel hopeless. In fact it was the exact opposite. She is all about fixing this. She made it very clear we are going to keep looking until we find out WHY and then HOW to treat it. I like her. So when she ordered a spinal tap last month to test my husband’s spinal fluid I understood why Patrick said “no”. He’s been poked and prodded and through a bajillion tests that were QUITE painful with no results. All clear. Every test he takes reveals that he’s perfectly healthy….only he’s not. So I knew he would not be gung-ho about a SPINAL TAP! SHIT…who would?

But our new Dr. Cool Lady explained some very rare disorders than can lead to Ataxia that she has come across in her research and she had a “hunch” she wanted to follow. So I of course was all “oh ya- let’s stab a needle into your spine and suck fluid out”. FUN STUFF!

So we did it. Well….he did it. I watched. I didn’t want to watch but I sort of felt like it was the least I could do. The results were shipped off to The Mayo Clinic and we were to sit and wait. Sort of used to that by now. Patrick was not the least bit optimistic- who can blame him. I sort of was. And for a “glass is half empty” kind of gal that was surprising.

And ONE MONTH LATER…the results. For the first time in well over 2 years a test came back abnormal. Do you know how weird it is to be ELATED about an abnormal test?

So I won’t go into detail but she immediately put him on a medication that has worked for one of her previous Ataxia patients. It has only been 3 days. But I am hopeful. She talks to us as if there’s no gloom and doom. As if there’s no reason to expect Patrick doesn’t have a long future ahead of him. God damn it he’s gonna have to live with me a LOOOOONG time. Poor guy. At least we think so. Who really knows how long they have. Life is short and making the most of everyday is a MUST!!

I want to thank Dr. Cool Lady for being the greatest doctor we could ask of. For being hopeful. For being positive. For looking in places no one else thought to. For going above and beyond. For making me smile. Oh- and Patrick too of course but we all know this is about me ;). Here’s to HOPE….

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