Back to normal life. How do I write about normal life after a trip like that? It took an amazingly long time for me to feel rested and back to normal – about a week. First of all I want to thank our friend Chuck who came over to remove snow while were gone. He texted us this photo:
Also thanks again to my dad for watering my plants and bringing in boxes. Also thank you to Stan’s dad, John, and step mom, Cathy, as well as my dad, John, and step mom, Anita, and friends, Adriana, Phil and Josh, for hosting our son, Andy, while we were gone so we could take an awesome 25th anniversary trip.
I will categorize this into:
I had my Mic-key button and tube replaced because 3 months had gone by and the balloon that holds it in place usually leaks slowly and needs to be replaced 4 times a year for people who are active like me. I texted my awesome nurse practitioner. She said she would be happy to replace it.
My husband watched and in three months they will observe him changing it and after that we will be able to do it at home. (Categorized into Love because I love my nurse practitioner and I love my supportive husband).
We had arranged for Stan’s cousins Lisa and Dana to visit our niece Jonika in Hawaii. Lisa texted this awesome photo of Jonika and Ollie.
We also got more snow which I love.
Andy was able to practice snowboarding down our driveway.
It’s great to have a teenager to help with shoveling. And a snow day – no school, so he has time to help.
Here is a new photo of my rainchain. It is awesome even in winter.
Andy and I were invited to attend a rehearsal of the Reno Philharmonic Orchestra on a Saturday morning.
There were two visiting teenage soloists.
It was nice to share this with Andy. The music was beautiful. It was interesting for Andy to see how a professional orchestra rehearsal goes. He was able to pick out the problems that the conductor pointed out to the orchestra before she even started speaking. He might make a good conductor someday.
I got back in touch with a dear old friend from a job I had over 25 years ago.
My monthly shipment of formula food was delivered and I asked Andy to stomp on the pillows of packing air with me.
This will become a monthly ritual. It is pretty fun and loud.
We bought tickets for 5 basketball games at University of Nevada and went to the first one on Saturday January 21. It was a close game between our Wolf Pack team and the Fresno State Bulldogs. Sadly our team lost. Even with me “yelling” DEFENSE! With my phone text to speech app.
Regular readers will remember the hand delivery post office in the Galapagos (ship passengers leave postcards with no postage and each new ship that comes through checks to see if any passengers can hand carry mail back home). We were finally able to deliver the one we carried back to the guy that wrote it at his firestation. We had tried before and no one was there.
We had fun remembering the same itinerary with him.
I have also returned to aqua fitness 3 times a week. It feels good to be getting back in shape. Cousin Lisa went with me once and Stan goes once in a while plus my friend Alice goes regularly and I am getting to know some of the other regulars.
On the last Thursday of the month there is an ALS Support Group and this is the first time I went. Stan went with me too. It was great to meet new people in our area who have ALS and their caretakers.
The ALS Association’s Care Services Coordinator came up from Las Vegas. She is new, and has a nursing and social work background. I really liked her.
A friend of ours, who plays guitar at our favorite Mexican restaurant, called Stan when we were waiting for our flight out of Ecuador. He had heard that the son of the owner of another great Mexican restaurant in Reno had gone to Mexico for stem cell treatment for ALS and he had great results. Then when we got back Stan got a call from Freddy. He came over to tell us his story.
He said he couldn’t swallow or talk and could hardly walk. He also had a lot of pain. And the day after treatment he said he could walk and talk and eat again and the pain was gone. He told us about all the treatments they gave him. That gave us hope.We emailed the doctor all my health records. And we haven’t heard back yet.
We checked ALSUNTANGLED and began to research stem cell treatment for ALS. Not everyone gets dramatic results like Freddy’s.
A week later we met Freddy and his wife Vera at a restaurant to learn more about his stem cell treatment.
We are going to meet with my local neurologist on Monday to see what he thinks.
Through all this I have a daily struggle with saliva in my mouth. I have a medicine that is a drop under my tongue and tastes horrible if it gets on my tongue. Sometimes it will make my mouth unbearably dry as in lips stick to teeth, other times the front of my mouth is full of saliva that I can’t move back to swallow. Stuffing one of my pretty napkins in my mouth helps but I know it is not attractive. I do realize this is a minor inconvenience I can live with, compared to what other people I know are going through.