On October 21 we went to Clairmont Country Club in Piedmont, California for the annual Corey’s Crusade fundraiser for ALS TDI. Corey was diagnosed in college. This was his 10th annual party (He is now 31). Every year the party has had a different theme. For this party we could choose a theme for a costume from any of the previous 9 themes.
Stan was a Parrot Head for the Margaritaville theme and Andy chose Purple Rain. I was a superhero of sorts, the Beauty who Killed the Beast.
It was a great party where we saw friends and met many nice people. And I am sure they raised a lot of money. We stayed in Walnut Creek because we had to be back in Reno for the 1 pm show Beautiful – Carole King the Musical. I did my Radicava infusion and ate my feeding tube breakfast while Stan and Andy went down to the hotel breakfast. Then we packed up quick and hit the road. We made it by 12:55 pm. This was an 85th birthday present for my dad. It was nice to share such a wonderful show with my dad and Anita and Stan and Andy. Even Andy liked the show.
I have now completed over a week of Radicava. The first few nights I felt that I was sleeping better. I have been remembering dreams again. But by the 4th and 5th day I was having runny nose and lots of thin post nasal drip. There was so much I thought it must be an allergic reaction. We notified Searchlight of a possible reaction. But the next day Stan talked to two different pharmacists from Option Care. They said that it is possible to have an initial reaction to port medicine and it would go away with time. They also said see how I feel on the off weeks. So I loaded up on Benadryl and Sudafed, and I am still hoping for a freeze. I am watching those low overnight forecasts. Come on cold weather!
I can’t swim until a month after my port surgery, which will be November 11. I can’t wait to get back in the pool. I feel better when I am doing all those range of motion exercises. I will have to start doing them at home for the next two weeks. For the next round of Radicava we have a little more flexibility. It will be ten of 14 days so we can do 5 days on then take the needle out and I can have two days to swim and shower without plastic wrap, and then do the second 5 days. We looked at the November calendar and maximized the days I could swim. I also will explore ways to cover the needle so I can do aqua fitness and stay in shallow water.
My friend Erika came up from Eldorado Hills, California for a quick visit. She learned how to do my infusion. I am able to do the infusion myself now but someday I may need help.
I am so blessed to have wonderful friends and Erika is the best of the best!
I went to my local ALS Support Group meeting last week and there was a presentation on Range of Motion exercises for ALS patients. They were presented as important for patients’ comfort and to help them sleep better. I know my aqua fitness helps me and I tried some of the exercises this morning and they felt great.
Cue the guilty feelings. When my mom had ALS, she was still living in Oak Park, Illinois (first suburb due west of downtown Chicago). My brother Pete still lived at home and he was her main caregiver. My sister Cathy would relieve him on the weekends. I was living in Reno, working as a hydrogeologist. The Family Medical Leave Act had just become a law so I was able to take a Friday off once a month, and fly to Chicago on an early flight, arriving by midday. I would fly back to Reno on Sunday afternoon. I think Pete usually picked me up at O’Hare and drove me back on Sunday. One Friday afternoon after I arrived, my mom’s home physical therapist came for a session. She was teaching me the range of motion exercises. I was naively and incorrectly under the impression that physical therapy was only for healing. I actually said, “Why does she have to do these?” while thinking, “She’s going to lose all this movement anyway.” The physical therapist simply said, “These exercises are VERY important.” I was not convinced. Now that I am an ALS patient and now that I had the exercises presented in a more thorough way I am convinced. I wish I had this insight when my mom was living with ALS.😓
For those interested, the nine sheets of range of motion exercises are at the end of this blog post.
The pool at St. Mary’s Health and Fitness where I do aqua fitness has a west window that lets us see the clouds, sun, trees, and wind while we exercise.
Last week I overheard two younger women talking in the locker room and one of them revealed that she was pregnant. The other woman said, “You have to try the pool in the afternoon. The way the sun shines through the windows makes prisms of rainbows all over the pool. It’s a magical place to be with your baby inside of you.”
I was privileged to overhear this conversation because it helped me realize I exercise in a pool with a range of light and it helped to inspire this blog.
We live very close to another famous range of light. This one is the Sierra Nevada Mountain Range which famed photographer Ansel Adams called the Range of Light.
We have spent many happy times in the Sierras in all different ranges of light. My memories go back to pre-1985 when I moved to Reno. On my first visit when I was in grad school, family friends, Michelle, Theresa, and Sandy, who were in high school drove me around Lake Tahoe.
My sisters Cathy and Susie and I climbed Half Dome at Yosemite. I also took a trip there with my mom. And Andy, Stan, and I went there a few years ago. This is the area of the Sierras where Ansel Adams took his famous photos.
Stan and I had our first date skiing at another Sierra ski resort Alpine Meadows in the morning and sailing on Lake Tahoe in the afternoon.
Early in our relationship we got a permit to climb Mount Whitney. As luck would have it our permit was for early October.
We planned a loop route backpacking for two nights. We camped at 10,000 feet with 7 or 8 other groups of people who would also be climbing Whitney the next morning. It was extremely windy and since it was October it was dark by 7 PM. When you go to bed at 7 PM you wake up rested with a lot of dark hours still ahead of you. The wind was howling all night. At daylight, we saw that another tent had shredded and we had granite flakes blowing into our oatmeal. We started the climb and got to the switchbacks where the trail was snow and ice covered. It was treacherous without crampons. Little pellets of snow, the kind that sting your face, were blowing all around us. As we ascended, my eyes bothered me more and more. This was 1989 and I had extended wear contacts that I left in when I slept. These contact lenses needed alot of oxygen exchange and as the oxygen saturation decreased the higher we went I realized I was not prepared to go higher. So reluctantly we abandoned our summit quest and headed back down.
I remember the first time I saw Mono Lake. Descending the hill from Conway Summit at sunset, I saw two backpackers walking up a dirt road toward the Sierras. It seemed like a very spiritual place.
I remember Andy’s first backpacking trip on the Pacific Crest Trail south of Donner Summit. He carried his sleeping bag and hot wheel cars.
We veered off on a side trail and found a great campsite above a lake for swimming and with smooth granite slabs above that were perfect for hot wheel car races and crashes.
Other memorable Sierra Nevada camping trips:
Little Andy kayaking with our friend Brian at Convict Lake and getting to watch a truck dump the fish stock in – pretty exciting to see from the water. Perhaps the same trip, stopping at Mono Lake and talking with the fire fighters who were on call for lightning strikes. Andy got to sit in the driver’s seat of a brush truck.
Camping at Nevada Beach with Catherine and Brian and making Bananas Foster on top of the brand new bear box. When the Rangers came to inspect the new installation the next day one of them said, “I wonder what happened to the top” as we smirked in our campsite.
A phenomenal backpacking trip with Boy Scouts from Carson Pass to Blue Lakes. We ascended through a garden of waist high pink, blue, yellow, and white flowers. The flowers were a thick blanket on either side of us. At one point, a woman hiking down the trail came around a corner and said, “There’s a surprise around the corner.” We turned the corner and there was a little creek running across the trail. We had been hiking beside this creek but couldn’t see it because of the blanket of flowers. We camped by a lake for swimming.
Carson Pass to Blue Lakes continued: The next morning we descended to Fourth of July Lake. We were hiking through another garden. This time the pallette was red, yellow, and orange. The flowers were Indian Paintbrush and other more arid flowers. They were about knee high and much more widely dispersed than the previous day’s garden, yet equally beautiful. At Fourth of July Lake, fish were jumping out of the water to catch insects. From there we traversed a valley as beautiful as Yosemite. The second night we camped near a creek that was perfect for rinsing hair under waterfalls and hanging out in the water to beat the heat.
Another scout backpacking trip, this time to Desolation Wilderness. The second day we took a day hike up to Aloha Lake and I remember saying I was glad to live close to such a beautiful place.
Another Boy Scout trip, this time to Hutchinson Lodge, a Sierra Club facility.
Also cabin rentals at Twin Lakes with good friends many years in a row
And so many wonderful memories of camping trips to Chuck and Alice’s property by Sugarloaf Mountain north of Frenchman’s Lake.
Our cherished annual camping trip with our friends Erika, Paul, David, and Maddie to Plumas-Eureka State Park. On one of those trips we witnessed a fish stocking of Jamison Creek. This time they carried buckets of fish right through the campsite, dumped them in the creek, and made several more trips.
I remember so many great days skiing in the Sierras. Especially that one April Spring Break Tuesday morning at Mt.Rose with Andy a few years ago when there was hardly anyone there and we had fresh powder tracks all morning.
Climbing Mt.Rose with Dawn and Keia, the foster teens I mentored.
And a fun hike with the girls up Brown’s Creek Canyon.
And lots of fun mountain biking and hiking and running all over the beautiful Sierra Nevada Mountain Range.
Once shortly after I moved to Reno, I climbed a mountain above Plumas-Eureka State Park and when I got to the summit and looked up there were waves and waves of migrating Brown Pelicans that continued for quite a long time. They would circle in the uplifts and as soon as they lost the uplift they scattered and then got back into their V formations until the next uplift. It was pretty amazing to see!
This same mountain range is having the most snow this winter of any in recorded years. While this is great for skiers and our water supply it also causes problems when the I-80 Highway gets shut down to trucks. It delays shipments. We made the mistake of ordering my next monthly shipment of formula food on the Friday before the three day Presidents Day weekend when I only had four days of food left. I had enough food through Tuesday when I expected my food to be delivered. When we heard that I-80 was closed to trucks on Tuesday, we realized that my shipment of food from Sacramento would probably not be delivered that day. My husband went to CVS to pick up prescriptions he also picked up a 6 pack of Boost Plus for me.
I had enough to get through Wednesday. Late that day when we heard from our supplier that UPS was still playing catch up, off to CVS we went and got another 6 pack of Boost Plus for me to get through another day.
I found that the Boost Plus was a little bit more difficult to digest than what I usually use, Jevity 1.5. On Thursday morning I had planned to go to aqua fitness at 10:10 AM. My stomach didn’t feel great after breakfast so I went back to bed. I didn’t wake up until 10:30. So no aqua fitness for me that day. I had Boost again for lunch. My food was finally delivered around 6 PM. So at least I got to go back on my normal formula for dinner.
I am thankful for being able to buy Boost locally for when I really need it. We will try to order 8 days in advance next time to leave some leeway for delays. I love the Sierra in any season but it is most beautiful in winter.
I am also glad to know the range of motion exercises while I can still do them on my own.
Here are the range of motion exercises: