June 29, 2017
One year ago today, I was diagnosed with ALS (my D Day). This photo was taken in Half Moon Bay where we went after the dismal diagnosis.
Based on my mom’s experience, there is no way I expected to still be so active. I feel truly blessed in that respect. I am able to care for myself. So today is an ALS milestone. I have written before about how important milestones are to an ALS patient, for an ALS TDI Mother’s Day email:
On being a mother
by Meg Macdonald
I first became a mom in 1999, with a 23-week micro preemie daughter who did not survive. In 2000, our son Andy was born a micro preemie at 25 weeks 6 days and 1 pound, 13 ounces. He did survive, and we are really blessed that he did.
As a mom, there are milestones you anticipate such as first steps, first words, first day of kindergarten, finding musical interests, sports interests, and other things your child will be interested in. We did not know if our son would survive and the first two years were quite a roller coaster.
Needless to say, all of Andy’s milestones are very meaningful to me as a mom. I am thrilled that he is now a successful high school student, driving, playing viola in several orchestras, running and working on his Eagle rank in Boy Scouts. As a mom, I look forward to his college choice, high school graduation, to his college graduation, success in a career, marriage, grandchildren – all the normal lifetime milestones.
Now, since my diagnosis with ALS nearly a year ago I can only set goals to be present for these milestones. Without more research to find a cure, my goals will not be attainable.
But I need to finish up the story of our Oregon trip. We left David and Linda in Trail, Oregon on Monday morning.We will be back! We love you guys.
Then we drove to Klamath Falls, Oregon to meet my friend Theresa and her husband Jeff. It was a quick lunch visit. I met Theresa when I first came to Reno and stayed with her family. She was a senior in high school when I met her. This was the first time we really got to talk with Jeff. It is uncanny how many similar interests our husbands have. Dirt biking, RC airplanes, sailboarding, airplanes, military, and the list goes on. We will be visiting them again too.Jeff and TheresaOld friends, but don’t we look young?
Then back to Reno for a few days. On Wednesday, Andy and I went to Nevada Magazine’s Focus Group, a photographer mini-symposium. They had 4 presenters, one on gaining and retaining customers, one on photography basics for sharper images, one on the stock photography market, and one on nighttime photography and astrophotography. We also got a tour of the Nevada Magazine production area. As the former editor of my high school newspaper, this was interesting to me.
This photo shows where they lay out the magazine. Andy, who wants to be a graphic designer, got several contacts who can help him down the line. I also made new friends. We went to lunch at Q’s BBQ afterwards and got to chat with even more people.Photo credit: Tanya Musselman
It was a great group of really nice people, and a great presentation too.
And then D Day, spent paying bills, and being frustrated that I have to depend on Stan and Andy to make phone calls for me, and dealing with very uncomfortable thick saliva. But I am appreciative of every day I am given on this planet.
June 30, 2017
Another milestone for me – yes my birthday (57)! I never used to want to make a big deal about my birthday, but now it means that I made it through another year with ALS. I woke up this morning, before 4 A.M. coughing due to saliva getting in my lungs. So really, things are not all easy even though I can self care.
Today we will drive to Miles End Lodge Bed and Breakfast for the long 4th of July weekend. We have filled the whole place with friends and family. Last year we also went there for 4th of July. I didn’t write about it then. But the other guests were friends of Ann’s, sisters who are doctors and their husbands. They were very understanding of my need to grieve my diagnosis. I have mentioned that Miles End is one of my favorite places on this planet. We have celebrated Stan’s birthday there, and now we can celebrate mine.
July 1, 2017
Today we had a relaxed morning chatting, and then went up Kingston Canyon to Groves Lake for lunch.
I will include photos in next weeks blog when I will be back on Wi-Fi.
July 2, 2017
Another milestone day – our baby Anna who died at birth would be 18 today. I have a rosebush in her memory in my back yard and because I prune severely in March, it gets its first pale pink roses right around her anniversary every year. And then they get pinker until the bloom is done.We still hold Anna in our hearts, and I am glad to have the roses to remind me of her. The rose bush was a gift from my step mom Anita and my dad.
Today we drove various vehicles around Big Smokey Valley. Two dirt bike riders and two side by side riders rode on a pole line road to a meeting point on a well graded road. Two others rode in the Ridgeline to get gas in Carvers, NV and back to the meeting place. It was planned to be a much longer trip, but after eating lunch we decided to head back to the beautiful, relaxing Miles End. Again I promise photos next week because I am off the grid out here.
Last year I participated in Sarah Coglianese’s #whatwouldyougive campaign. This year I am busy with clinical studies and we are trying to put together a local Reno fundraiser too. But I told Sarah I would share her fundriving page:
Please support my amazing young friend and the awesome fundraiser she created to support ALS TDI, the non profit company dedicated to finding a cure for ALS.