Marianne Has ALS

Hello! It’s been a bit, let’s jump right in!

The end of April was like a breath of fresh air. My aunt and cousin came out to visit – they helped out around the house (which was amazing), but the true highlight was just hanging out with people who love me.

NOTE: I get the warm fuzzies all the time as I am blessed with family and friends who are helping and hanging out. Being surrounded by this much love is turning me into a super mushy cupcake.

May brought a fundraiser (thank you again!) and two cruises (more on this later)

And now we are in June! At the beginning of this month another community member put on a fundraiser to help with our renovation costs. The bake sale fundraiser raised $3,000. God is great! I’m continually touched by how compassionate and caring people are in a time of need. With the help of family, friends, community members, and complete strangers we have raised half of the renovation costs. We cannot say it enough…Thank You So Much!!! My parents and sister are visiting now. They are cleaning the house (SO NICE) and again it is nice to be around people who love me.

Finally – today I had my second clinic visit. I went in expecting horrible news…when you go to the doctor you expect a path to get back to health, there is no path with ALS. So…I went in with the expectation that the doctor would tell me I’m progressing quickly and had weeks to live. The good news is that when you place the bar THAT low, all news is sounds good.

The neurologist said that I’ve had some mild progression – but nothing drastic. The speech lady says I’m good. Everyone agrees that I’m speaking way slower (I’m not a fan) but I am easy to understand. The nutritionist says I’m good, we set some goals. The OT gave me some solutions to problems I have…and solutions to scenarios I’m likely to encounter in the future. He specifically said Jacob was right to help me up and down the stairs EVERY TIME. The wheelchair guy got the ball rolling so that I can get my hardcore wheelchair sooner rather than later. We didn’t meet with the respiratory therapist (I haven’t noticed a change), case manager, or social worker. Overall….I feel pretty good about clinic, my next appt is late September / early Oct. Here’s to hoping things stay slowish.