Sep 30, 2020 Latest post:
Dec 27, 2020
Hey guys! Well this is a little late but a little peer pressure - yes even at 51 - has convinced me to get something out on my ALS journey so far! I realize it’s usually someone else who writes this but I’ll do it while I can and they can do it when I’m only able to write jibberish that could be construed in who knows what kind of way?! So here it goes long story sorta short as possible and if you know me bullet points of course and as short as I can make it because well you know I have so much patience... • Jan/feb - lots of leg cramps in the night and just though it was because I was coming off a big holiday at Nordstrom. So I stretched it out at work and lots of water.
• March - felt a bad right calf strain - I thought it was from the bad cramps at night so I went to my internist who did an ultrasound to make sure there was no blood clot. No blood clot so onto orthopedics.
• Mid-March sent to ortho - mri of right leg he sees nothing but definitely thinks something is wrong with my reflexes and calf so he sends me to a Neurologist the next day just in case it’s a Neuro back issue. FYI - it took 3 times to get that MRI done - must it sound like a train rolling over the machine? Have we not figured that out???
• April - the neurologist does reflex tests and orders another MRI of torso and head- now an MRI is the devil to me because I’m claustrophobic. So lots of drugs and never opened my eyes once! Then onto the EMG - I don’t recommend this procedure especially when the Dr says “it will be uncomfortable and a little painful for about an hour?!” Then Neurologist Zoom calls me the next morning and said I need to see an ALS specialist -so that was a super fun call to start the day!
• Went to the ALS Center for Excellence after a long day he concurred with her diagnosis but because we already had a third opinion at the Mayo scheduled the next week he suggested we go but unfortunately they like to do their own testsing so I may have to redo them. I did and that’s all I have to say to that 😡 (little suggestion if you think you have something seriously wrong go there first unless you enjoy doing tests twice!) After a week at Mayo they concurred it was ALS. They sent us back up to ALS Center of Excellence at HCMC for care be us there is no treatment it best to be as close to home and I’ll use Mayo for any trials. Basically because it’s a fatal disease your not being “treated” your keeping life as easy as possible so closer to home makes the best sense.
• I’m an honest person who doesn’t sugar coat things to much. This ALS is going quite quickly! However, it can slow just as fast according to the Dr’s. So let’s go with that! There is absolutely no roadmap or cure so that’s just the facts. We are hoping to just enjoy the time we have and have as normal family life for the kids as possible.
• We now have great wheelchair ramp! Thank you so much to our wonderful cousins Joe and his dad Bruce - Joe is part owner of Back Channel Brewery so your patronage is appreciated from me!
• You should see me out more now that I have an electric wheelchair and minivan AGAIN! If that doesn’t prove everything comes full circle🙄
• The bathroom remodel should start ASAP!
• This is all from your generous go fund-me gifts that we can’t even read without both of us having complete breakdowns of the thoughtfulness and generosity of our family, friends and community!
Thank you again and I’ll try and keep you up on any changes good or bad. We love all of you so much!!! The Albrecht’s Chris, Julia, Owen, Shea & Phoebe