Loved ones visit from Hawaii and positive changes ensue

There is so much about Jonika and Ollie’s visit that was wonderful. Jonika was helpful, cooking, cleaning, instigating organization for Andy in his bathroom, his room, and in his schoolwork. She even shared her knowledge from two years of weekly therapy to improve our family dynamics. And she also visited with friends and family.

Even Ollie (18 months) likes to help – he likes to shake my food and even pour it (but I can only let him ‘pour’ empty ones), and he likes to help with laundry, and he sweeps. It was great to watch him learn. I was packing up some things to give away that had to fit in the box a specific way. He would watch me put a piece in, then try himself and hand me the next one so he could learn how it fit correctly. He also loves to bounce on beds, swing, and rock in the rocking chair.

in the rocking chair with Granny M

And it was great that he knows some American Sign Language, especially now that I am learning some too. He and I communicate in facial expressions and hand movements, just like communication is done in ASL. When we visited Hawaii when he was only 3 months old, I was still verbal with only vowel sounds and that was all he could do too.

So far, no problem communicating with this young human although his verbal skills are increasing and all I can do now is a monotone sound.

Toddlers also bring home germs. Ollie threw up Thursday morning and by Saturday Andy, Stan, and Jonika were all sick. I had to go into mom mode and clean up Andy’s bed linens so I was exposed.

Andy convelescing on the couch watching the Olympics while Stan rallies himself to entertain Ollie

And sure enough, 48 hours after exposure I got the bug. But I was ready with my extension tube on my Mic-key button and an extra large plastic cup next to me all night. When I woke up with my button hopping up and down and I got that about to throw up feeling, I opened the tube into the cup. Even laying on bed it exploded in bursts into the cup. When I got up, I started with Gatorade and when that stayed down I did my meds. For new readers, you won’t remember my norovirus when I was still working. I could not stop vomiting and it would get stuck in my esophagus, burning away, until I could cough assist it out. That was only resolved with hospitalization. It was miserable and my esophogeal muscles work even less well now.

It was a snowy day, so Ollie got to go out and experience it for the first time. He was fine, walking around in wonder, until he fell and his hands got too cold. Then he cried and cried, and I think he was saying, “Take me back to Hawaii Mom!”

I had some more Gatorade and went back to bed. I slept a couple hours, then did cough assist and suction and had some more Gatorade. I kept the extension tube connected so I can monitor what comes out while I’m awake. By noon, I was able to tolerate one box of food.

My friend Alice stopped by to bring me some slipper socks, perfect for a snowy day.

In addition to extra family and friend visits during their stay (which were wonderful), Jonika had recommendations for our interactions with Andy. She has the unique insight of a 30-something adult, who is now a mom, and who spent four years being parented by us. One thing that really hit home was that we have to be role models, including cleaning up our cluttered areas if we expect Andy to keep his things uncluttered. So I worked on my office, which had been on my to do list for a long time. It is something that I have to do before we can do taxes. But this time, I am purging big time and I ordered a new rug to help motivate me. Another thing is to help Andy with time management, but only if wants help, and that has already helped more than once.

Jonika and Ollie left to fly back to Hawaii early on Wednesday morning. All three of us will miss them greatly.

January blues, February hopes

What is it about the month of January that is depressing? So many of my friends with ALS wrote about depression last month. There was even a widely shared post about the choice of death or divorce – a man in the United States who decided to get a tracheotomy rather than dying and his wife divorced him after that because of the burden of care.

I have had my own pity party because of the post nasal drip and drooling and mucous that are still plaguing me. My neurologist at UCSF said it is not an ALS problem. She has not seen it before. I went to an ENT in Reno and a CT scan of my sinuses was clear. But now I have an expitided referral to the UCSF ENT department (we will see how they define expedited). The next step after, if needed, will be my Gastroenterologist and the earliest appointment I could get is April 4.

Let me tell you what this has evolved to – I get bad sinus headaches to the point of bad eye pressure and sometimes even ear aches. I have found that using Mucinex every 4 hours followed by cough assist and suction sometime in between can usually keep things moving. I also try to stay upright – standing or sitting to facilitate gravity assisted movement through esophagus. It takes a lot of time to manage and makes it hard to have plans away from home. But if this is my very own ALS journey (and it obviously is) I will have to readjust my expectations and figure out how to be happy with this.

It reminds me of my ALS diagnosis saga – every new antibiotic or doctors appointment brings hope that things will be better. And every failure is depressing like the lack of finding problems was during the “Please anything but ALS” phase.

But I have read beautiful memoirs by people with cancer (When Breath Becomes Air by Paul Kalanithi and The Bright Hour: A Memoir of Living and Dying by Nina Riggs). Both described their lives with cancer and it sounds in many ways worse than ALS. Although neither book dwelled on the difficult or painful parts, they were mentioned. I guess the only easy way to die is suddenly. One happy outcome from those two books is that Paul’s wife and Nina’s husband are now in love.

So I am challenging myself to find a happy outcome. I can plan on getting help soon at UCSF and at my Gastroenterologist in April. And I can fake it until I make it or until it is over. I am lucky that I am not aspirating this thin drainage. I am lucky it is not affecting my breathing, although I often can’t make through the night with my bipap because of too much mucous in my mouth. And I am lucky to be able to still use my hands and arms and legs.

Because I can still use my hands and arms, Stan and I decided to take a Community Education American Sign Language (ASL) class. It is frustrating for Stan when I do charades not very well so our communication has been difficult. Plus if we use my phone to navigate, my voice is the same as the GPS lady who says, “Take the second left”. We had the first class and it was fun with a great teacher. It was overwhelming at the beginning but with practice it became easier. Finger spelling has already helped us. Once when Stan was leaving and I had some mail to go out, he asked where it needed to dropped and I finger spelled our mailbox. That saved me from having to run to get phone or Boogie Board or paper and pen to write. Fingerspelling has also been helpful riding in the car. We were also told that practicing fingerspelling while driving or riding in a car with license plates and signs would be a great way to start. We have a lot of online homework, but it is fun. I love that it is a whole body language and I have always loved learning languages.

Other things keeping us busy are Jonika and Ollie visiting until 2/14. They are a joy to have with us.

Jonika and I took Ollie to the playground at Idlewild. One of the play structures had the American Sign Language alphabet!

A Hawaii boy riding a whale!
A Hawaii boy with a Nevada light saber!

Jonika’s best friend Lyndi came over with her same aged son Landon.

It was so nice to see Lyndi again after so many years.

We also had a nice visit with Stan’s mother, Sharon, and Jonika’s mother, Terry. We enjoyed a meal at Naan and Kabob and relaxing visits at our house.

And more Ollie cuteness:

Last Friday we left as soon as Andy got home from school, and drove to Sacramento’s Golden 1 Center for the Kings versus Warriors NBA game. We met my best friend Erika and her kids there. It was very loud so Ollie had ear protection.

Photo by Erika Gotsch Peters
Lazy eyed me with my best friend! (photo by Erika)
Andy with his buddies Maddie and David
It was exciting to see so many NBA stars playing a good game
Photo by Erika Gotsch Peters

Jonika and Ollie were ready to leave after the third quarter so Erika and I left with them and went back to Erika’s house in Eldorado Hills. It meant we missed the fourth quarter where Kevin Durant took over and brought the Warriors to victory. But it gave us more time to visit with Erika and Stan stayed and had fun with the older kids.

The next morning we had a nice breakfast and more fun with Ollie.

Photo by Erika Gotsch Peters

Then we drove to El Cerrito to pick up Andy’s viola bow which was being rehaired. We stayed in Oakland on the estuary. Saturday night we drove across the Bay Bridge and across San Francisco to cousin Julie’s. Julie had not seen Andy since he was Ollie’s age and she hadn’t seen Jonika since she was a teenage highland dancer. Julie’s grandmother was Stan’s great grandfather’s little sister and they were from Scotland. We had a wonderful visit.

Julie was very close to Stan’s grandparents Mac and Olive, and she loved, as we all do, that Oliver was named after Olive.

On Sunday morning we met Jonika’s friend Rob for brunch in Oakland. Rob is Jonika’s mother’s best friend’s son so they have been friends since childhood.

Then we drove home, listening to the first quarter of the Super Bowl on the way.

And so began February, with good distractions from my illness, and hopes that things will soon get better with my sinus problem.

Holidays, family and friends: love and connection

We spent Christmas with Stan’s dad and step mom, Cathy.  Stan left for Las Vegas five days before Andy and me. He drove down towing our RZR side by side in order to spend a few days taking his dad off road. His dad has loved hiking and getting out in the wild his whole life, but due to his health he has not been able to go out.

Stan texted me this photo and it was wonderful to see John out in the land he loves.

They had a great time for three days exploring the hills near Vegas.

Andy and I flew down Friday night after Andy finished finals. We had a nice visit. There are four dogs in that house and I was bothered by an allergy to the dog hair. I know I talk a lot about allergies in this blog, but with Bulbar ALS at the extent I have it, it is a big problem. I can’t swallow or cough or blow my nose. The week before Christmas I realized my symptoms were indicative of a sinus infection.  My awesome nurse practitioner called in a Zpac for me, and then a second one. And it was still with me.  So she called in Cipro for me. I started to feel better, but the intense dog allergy made it hard to know if the antibiotics were working.

Stan had a bout of food poisoning while we were in Vegas and was sick for a day. But for once he got sick and didn’t end up in the hospital. 

Andy helped Grandpa by picking all the ripe lemons off the tree in the back yard. They were posing for a photo, both holding handles on the bag when it broke.

On December 23, Stan’s step mom Cathy’s friend, Sandy, came over and we had a nice visit. 

Andy even played his viola for all of us.

Grandpa was a great music holder

Christmas was a nice gathering of my inlaws’ friends. The guests all were impressed with my text to speech app on my phone with my wireless keyboard and my Boogie Board too.  We shared stories and laughed. 

Stan gave me some gifts that will help me deal with my ALS. One is a charging cellphone case. I use my phone to speak so by mid afternoon my battery is already running low. I have tried external batteries but they are cumbersome and the charger connections don’t last long. Now I can charge overnight and both phone and case charge and in the morning the phone is charged and when the charge goes down the phone case takes over charging it. So my charge now lasts all day. It is wonderful. Another thing is a pill grinding syringe.

It has a grinding surface at the bottom of the syringe, so you can grind a pill or pills right in the syringe with the plunger. It works best to suck in some water and suspend the ground medication in an aqueous solution. Then it can go right into my stomach through my Mic-key Tube.

The day after Christmas we drove to Kingston, Nevada to visit our good friends, Ann and John, at Miles End Bed and Breakfast. This was the end of their Christmas br√®ak. They had just returned from Carson City that afternoon. We were the only guests and they brought pizza from Carson for dinner. That was fine because we were there as friends, not B&B guests. 

Long time friends Ann and Stan talking while Zee enjoys a Christmas present of dog biscuits.

But in the morning, Stan and Andy enjoyed John’s normal wonderful breakfast. Ann had to run off to work at the clinic, which she runs. So we packed up, said goodbye to John, and stopped by the clinic to say goodbye too Ann.

Andy drove us home and we got home mid afternoon.  We had to unpack, do laundry, and pack for another trip – this one to Hawai’i. But we were able to have dinner with my sister Cathy and Rick and 10-year-old Sam, visiting from Portland, Oregon. It was too bad that was all the time we had to visit. It was also too bad I was so tired I didn’t even take photos. But here is one they texted from San Francisco a few days later.

Then we flew to Hawai’i. I was worried about needing cough assist and suction on the long flight. But I went and talked to the flight attendants in the back and asked where I could do it. They asked if I could use the bathroom. I said no, too small. Then they offered me the back row of the plane (their seats) while they did beverage service. That worked out great because it was so loud back there that no one noticed me coughing with the cough assist or suctioning and both are loud.

Our niece who we raised lives on the Big Island and her son Oliver is 18 months old. We are his ‘grandparents’ and so proud of this handsome, smart boy (spoken like every grandmotherūüėé).

Andy and Jonika have a bond closer than cousins. And Andy has a special bond with Ollie too.

We had a crazy surreal and funny dinner at a restaurant that will not be named. The waitress had real difficulty with our order, bringing the wrong things and totally forgetting one meal. But it was very fun and I was told the food that did come was great. 

Chris and Stan
Headstrong Ollie saying no to mom

Chris ended up getting his food to go. That led to jokes that may continue the whole trip – like ‘we could go back to that restaurant – but we might want to eat before we go!’

My morning view on December 31, 2017. The ocean is in the distance on the right.
New Year’s Eve 2017 (photo by Chris Grossi)

I had lots of love, connection, and hope in 2017 and I am looking forward to lots of the same in 2018 too. I hope you find the same.

Thanksgiving in the U.S. – what I am thankful for

Last Thursday, November 23, was Thanksgiving in the U.S. It is a traditional four day weekend but our local school district added the day before a few years ago, so now it’s a five day weekend. 

We drove to my sister Beth’s in California on Wednesday. She lives south of San Jose, in San Martin. My dad and stepmother, Anita, also drove from Reno. Beth and her husband Jamie have a beautiful home overlooking the CordeValle golf course and a vineyard. Jamie’s sons Phillip and Jack were there too. Because of not quite enough beds, Stan and I stayed at the golf club.

The view from our room.

We had a lovely Thanksgiving dinner at the club.

The beautiful menu – the food was equally beautiful. Jamie’s last name should have a capital B. That is the opposite problem from ours – the small d Macdonalds.

My dad, Phillip, Jamie, Jack, Beth, me, Stan, Andy, and Anita

Although I could not eat the turkey or any of the other wonderful food, I got into the turkey day spirit by drawing a turkey on my feeding tube. Thank you Laura Furumoto for the idea!

We went around the table and each said one thing we are thankful for. Among the comments: indoor plumbing, antibiotics, the first amendment, and the family we were sharing dinner with. Although it is hard to prioritize what I am thankful for, I said I am thankful to still be able self care after nearly two years with ALS. That is not just selfish because it impacts my son and husband greatly. I also seconded the comments about being thankful for everyone at that table. In addition, I am thankful for all of our relatives who we were not with on Thanksgiving.

I am thankful for my friends. Erika and her daughter Maddie came up from Eldorado Hills and spent Friday night and part of Saturday with us. Andy had to sell Christmas trees at his Boy Scout lot at Shoppers Square. Erika bought a tree and I bought a wreath. We will be with Stan’s dad and stepmother for Christmas so we don’t need a tree.

Marvelous Maddie with our wreath
Erika and Maddie with the tree on top of their car to drive over Donner Summit, with Andy and Cooper, who sold her the tree.

Erika even hung the wreath for me.

There are so many friends I am thankful for: the ones from my elementary school, the ones from high school, the ones from college and grad school, and all the friends I have met since I moved to Reno, and also the ones I met online that have become flesh and blood friends.

I am thankful for Radicava and the hope it brings for slower progression of my disease. I am thankful for all the researchers around the world who are working for an end to ALS. I am thankful for all the people who work in ALS clinics to help ALS patients have better quality of life. I am thankful for all the wonderful people with ALS and the wonderful caregivers I have met through ALS fundraisers, Facebook, and our local support group. I am thankful for the people who facilitate our support group.

I am thankful to be a patient fellow for the ALS/MND International Symposium in Boston December 8th through December 10th. I again encourage anyone with questions or comments about anything related to ALS/MND that you want the researchers to hear, please send me your questions and comments. I will be your voice at the conference. Again, you can comment on this blog or on Facebook or on Twitter.

I am also thankful for a fun Twitter interaction. The father of neurology is Jean-Martin Charcot, a brilliant doctor in the late 1800’s in France who first identified and classified ALS, MS and other neurological diseases. Well, Jean-Martin Charcot is on Twitter and he shared my blog! I could not agree more!

Fun at Corey’s Crusade and Radicava Round 1, Days 1 through 10

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.

Margaritaville, Safari, the Beatles, Masquerade, Midnight in Paris, Western, Super Hero, Havana Nights, and Purple Rain.

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.

Andy added round purple sunglasses and purple beads that they had at the party. You will have to wait for Halloween for a good photo of my costume. 
A selfie we took on the way in
With Jen from ALS TDI. We love you Jen! You can see the giant gorilla hand around me. But I promise a better photo on Halloween.

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!

Bobcat, Beach, Birthday, and Gram’s Grave

I succeeded in giving my 17 year old son “the weirdest birthday present I’ve ever received”:

Happy Birthday! Glimpses of nature are my favorite gift. Your bobcat on Sunday was one, and this was on the driveway with the newspaper (this morning)! Note, our driveway does not get a lot of pinecones.

Andy’s birthday was Tuesday and since he runs Cross Country and plays viola and has a full class load as a high school junior, we started celebrating early. We made Sunday, two days before his birthday, a special day for him. He wanted to go to Lake Tahoe and it was a beautiful day, so as soon as homework and viola practice were done we drove to Emerald Bay. We were thinking that post Labor Day it wouldn’t be crowded, but with such beautiful weather we were lucky to get parking. Stan’s painful feet finally qualified him for handicap license plates and he just got them a few days before. We waited to get into the parking lot and when we got in, there was one open handicap spot. We had a picnic lunch overlooking lower Eagle Falls. Then Andy and his Aunt Sue hiked down and ran the Rubicon Trail along the shore of Lake Tahoe. Stan and I drove to D.L. Bliss State Park and we got the only available parking place at the beach at the trail’s end – a handicap spot.

It was a beautiful day on the beach and Stan and I got to relax.Then the runners joined us. First Andy, who reported that he saw a bobcat that looked like this:

photo source: Defenders of Wildlife http://www.defenders.org

I told him it was his birthday bobcat. I once had a birthday bear. Back when Jonika lived with us, Stan and I hiked on the Jones Creek Trail in Galena Creek Park on my birthday. We had Jonika’s dog, Gidgit, with us. Gidgit was off leash when we were coming back down the switcbacks, and a bear stood up to look at us from the bushes on a switchback below. Luckily, Gidgit, the best dog ever, came when I called her and we put her on leash. The bear was a beautiful cinnamon color although it was a black bear, the only kind of bear we have here. We bushwhacked down to the left to avoid the lower switchbacks. I have always considered that bear my birthday bear. I was happy to hear that Andy saw a bobcat on his birthday celebration day.

Sue arrived from her run shortly after Andy

We had time to enjoy the beach, and the water was even warm enough to swim.

photo by Stan Macdomald

Then we headed back to Reno for a birthday dinner at Southcreek Pizza with Nana and Papa.

Nana and Papa both wore red and swore they did not plan it

Then on Andy’s actual birthday on Tuesday, he got his birthday pinecone and went off to school, cross country practice, and viola lesson. Stan cooked a smoked tri tip with corn on the cob and Texas Toast for the birthday dinner with a special request pecan pie for dessert. Andy had some cards to open and a couple other gifts too. I even printed the happy birthday emails from his dentist and doctor. The doctor’s office actually said, “We hope to see you soon!” That is like saying, “We hope you get sick soon”!

Also on Andy’s birthday, my sister Sue and I went to look for our grandmother’s grave. We knew the cemetery but we didn’t know where the grave was. We walked all over looking at all the names on the gravestones, but we couldn’t find hers. So we called our dad.

He suggested we go to the office, so we did and the woman gave us a map then said, “I’ll take you there.”

We found it in a nice shady spot.

I had not been to her grave since her funeral. Our grandmother was not a happy drinker and I usually only had time to visit her after work, when she had already had her afternoon drinks. I walked out on her several times when she said things that were too mean for me to stay. When she was not drinking she was fine, although she spent her life not hearing well and not wanting anyone to know, so it was hard for her to make friends. She also carried that Catholic guilt secret about being a divorcee in 1935 rather than a widow as she told everyone. But in her 90s she spilled her secret to me and that eventually led Sue to do the ancestry.com research and find my dad’s half sister and brother and their wonderful extended family and so much love added to our lives. Thanks Gram, for sharing that secret before you died.

This was a good visit because Sue and I were able to talk about our best memories of Gram:

  • Taking us to Cubs games on the el and pushing us under the turnstile saying she’s over 12 when we weren’t (to get us in free on ladies day).
  • She owned Wrigley stock and was sent gum frequently and she always shared it out of her purse. My favorite was Blackjack, the licorice flavored one.
  • She also had Swedish fish, and nonpareils, and chewy things she called gummies (like precursors to fruit snacks but much harder). She also loved Fannie May candies and usually had a box she would share.
  • She taught us to knit and do other crafts: lots of homemade Christmas ornaments. Susie still enjoys knitting, like me, and she made a beer cozy for Stan!

It was good to remember the good things about Gram, even if none of the sweet grandmother cards ever worked for her. We got some good things from her and we wouldn’t be here without her.

Sue also got to spend time with my dad, who wouldn’t be here without Gram either.

We went to another cross country meet, and this time Papa came too.

photo by Melissa Knight

Great birtday for Andy, great visit with my sister Sue, and great memories of Gram.

Family; and Frustration

The title may be misleading, but the odd semicolon is intentional.  This week brought family visits which were wonderful. The frustration is my mouth.

First the family visits: My sister Sue is visiting from Houston for two weeks.

at Icecycle Creamery
When she saw the cattle horns made out of bicycle seats and handlebars, she had to do her hook ’em horns as a two time proud University of Texas mom.

We have had a lot of fun sharing old memories. She reminded me of things I had forgotten about – a game we made up on our front steps that we called Watercolors. One sibling would be the caller, and each stair had a color associated with it. When a color was called you had to jump to that stair. And when the top step’s color was called you had to get to the top first to be the next caller. And I reminded her about roller skating around our big furnace in the basement that had concrete floors and space around the whole furnace, so you could go around and swing off pipes and really get up speed.

We also had a visit this week from cousin Teddy and his gal Damaris. It was my step brother Brian’s birthday and Teddy’s had been the week before, so we celebrated both.

Cousins
Damaris and Stan
The whole family
My dad and Brian, the birthday boy, ordering
Brian’s birthday dessert with his mother Anita and Andy across the table

Sue is the one that did the ancestry.com research to find my dad’s half brother and half sister. For the past 6 years we have been blessed with wonderful additional family to love. Thank you Sue!

Teddy and Damaris with my step mom Anita

It was a great, but too short, visit.

Sue has enjoyed going to aqua fitness with me. And we spent some time at the Truckee River with her. 

skipping stones

One of the best things we did was to go through old photo albums.  There were lots of favorite pictures. Here are a few:

Our mom as a happy first time mom, our dad as a proud first time dad, with our brother, Tom
Our mom as a happy first time grandmother with baby Ellie

And Sue said that she was able to tell our Grandma Saunders that she was pregnant right before Grandma died, and Grandma clappped.

My brother Pete helping mom in the Hoyer lift on Halloween. I told Pete that he is too scary to ever be my caregiver. But this shows what a great caregiver he was for mom. He said they always tried to have fun.

And now I will tell you about my frustration. My latest Botox treatment on my saliva glands has left my mouth parched dry and uncomfortable. It is an inexact science of trial and error. I will have to wait for the Botox to wear off in about two months, and try various dry mouth products. I also still have irritated eyes and I was really hoping that discontinuing the Robinul (glycopyrrolate) would solve my irritated eyes too. The good thing about it is I don’t drool.

But these frustrations are minor compared to the anxiety felt by all the people in the path of hurricanes Harvey and Irma, and especially the ALS patients. I heard from one patient friend in Gainesville, Florida and he was worried about power outages for his external vent and cough assist machine. But then he heard from his advocate that he would be moved to a shelter with back up power. I also thought of the ALS patients thoughout the Carribean and Cuba, Florida, Alabama, Texas. To be unable to move yourself with storms like those bearing down would be higher anxiety than even my Xanax could help. I hope you all had help to be safe.

Party, Progess and Plans

Andy went backpacking with Boy Scouts from Mt. Rose Highway to Spooner Lake on the Tahoe Rim Trail. Both Stan and I would have loved to go along but our backpacking days are over. Thankfully one of the dads who went along took photos.


Photos by Shane Sykes

Andy had fun and he said it was beautiful – that is Lake Tahoe behind him. He left Saturday morning and got back Sunday afternoon.

We left Sunday morning and flew to Las Vegas for Stan’s dad’s birthday party. I was looking forward to no pat down going through security because I already had breakfast, and all my food was in my checked luggage. But I learned that my wireless keyboard and Boogie Board now count as electronics bigger than a cell phone that must be taken out. Maybe someday I can get through without the time consuming and personal space invading extra search.

When we arrived, Stan’s brother Scott and his granddaughter Lillee were already there from Grand Junction, Colorado. Cathy, Stan’s stepmom, and Lillee were in the pool.

Stan’s dad, John, enjoying a visit with his sons, Scott and Stan.
Everyone listening to John.

John loves to talk and you can find out interesting things from him, like this family story I had not heard before: Stan’s grandfather was a pharmacist in Texas and he dated Bonnie of Bonnie and Clyde before she met Clyde. John said his dad had a photo of himself with Bonnie Parker and he thinks he now has it and will look for it. We are all lucky that Clyde came along and snatched Bonnie away because Mac moved on to Kansas and fell in love with Olive, who worked in his pharmacy, and Olive was the nicest person you could ever meet (Stan’s grandmother).

I took a little nap and then went in the pool with Lillers, as I call her. She is going into 4th grade. We had so much fun. There were wasps coming out of the bushes and Lillers would use the pool net to catch them and hold them under the water for a long time before they would drown. We devised a signal for wasp since I can’t talk. If I saw one I held up three fingers to make a W for wasp. She was quite good at catching them. She is a great swimmer and showed me some of her tricks. Then we played Ninja Warrior. There were two floats, two noodles, and two pool weights. She would have to run across moving floats or run across both floats and pick up the weights or jump over a noodle the long way on top of the floats. Another challenge was to jump into an oval formed by the two noodles. It was quite fun to play like that with a delightful girl. Love you Lillers!

The next morning, John’s birthday, we had to say goodbye to Scott and and Lillee, but not before family photos. Stan’s sister Terry had arrived the night before so at least all three kids were there on the morning of John’s birthday.

After they left to drive back to Colorado, Terry had a dental appointment so we dropped her off and John and Stan and I drove around delivering postcards from the hand delivery post office in the Galapagos. When we were in the Galapagos at the post office barrel, our guide took out the pile of postcards and read the destinations. We grabbed one from the Reno area and took 4 from the Vegas area knowing we would be visiting. It turns out the 4 cards were from the same family. At the first house the woman was painting her house and didn’t want her picture taken. She told us that 14 members of her family went on their Galapagos cruise on a small boat called the Darwin. She finally agreed to have her hand in the photo.

At the second one, I was prepared to talk, but no one was home.

We decided it would be better to leave the postcard sticking out under the door mat.

The last two postcards were for the same address. A teenage boy answered the door. When he heard why we were there he was excited and said, “Mom come here, our postcards from the Galapagos!” Mom came to the door and said, “We were just talking about how the people had to go each house to deliver the mail.” She was the sister of the house painter and would not be in the photo either but the teenage son was willing.

John said he enjoyed driving to parts of the town he had not seen before.  He also gave us a tour of the OLLI (Osher Lifelong Learning Institute), where he and Cathy spend a lot of time teaching. We finished our tour just in time to pick up Terry.

Party

That evening we went to Bahama Breeze for John’s 86th birthday party. About 30 of his friends attended. The restaurant was decorated very nicely with tropical art and seat covers with turtles, fish, or palm trees. The first thing Terry and I did was explore the place and take a selfie:

The birthday boy with his son and daughter.
Cathy and John at the conclusion of a very nice party.

Terry drove us to the airport for our 10 pm flight. I had a momentary panic when I couldn’t find my license. I finally found it in a pocket of my purse. Again I was hoping to sail through security without my food. I dutifully removed my wireless keyboard and Boogie Board. But in the arms up scanner they saw my necklace and the clasps on my bra, resulting in invasive pat down again! Our flight was delayed 45 minutes, meaning we arrived in Reno at midnight rather than 11:15. That meant that on Tuesday I was moving very slow. But it was totally worth it for the family love and fun.

Progress 

I have been waiting for the newly approved drug Radicava, which is already available. We finally made some progress – confirmed that I am in the system so the benefits investigation can start, got a call from the infusion supplier which is the same as my food supplier, and got a call from the Nurse Educator who will be working with me for the first 9 months on the drug. It may still be a few weeks before I start, but the ball is finally rolling.

Plans 

We will be traveling up to the total solar eclipse in SW Idaho or SE Oregon on Monday with dear friends. We will stay at my friend Erika’s parents’ house with Erika, Paul, their daughter Maddie, as well as John and Thien. Paul and John work for the company Stan retired from, but in the Sacramento area. We have all become very good friends. I look forward to meeting Erika’s parents and add them to my list of friends. All 3 families have high school or college boys not able to join us.

I am posting this on Friday instead of Monday because it is quite possible that cell phone networks will be overloaded with the hordes of people that flock to Total Eclipses. You can read about it here a week from Monday.

You flew you Lear Jet up to Nova Scotia, to see the total eclipse of the sun – from You’re so Vain by Carly Simon.

Clinic visit and so much more in San Francisco 

My three month follow up appointment at UCSF was scheduled for Friday December 16 at 1 pm. As the date approached we noticed the weather forecast was calling for significant snow in the Sierra Thursday overnight. Andy finished his finals on Thursday and was already scheduled to stay with my dad (Papa) and step mom Anita  (Nana) so we could leave early on Friday. So we decided to beat the storm and drove over in the deluge of rain on Thursday afternoon. It gave us a chance to visit in the Sacramento area with our good friends Erika, David, and Maddie and their three dogs (Paul was out of town on business).

It was a bonus to have time to catch up with dear friends. So nice of them to have us on short notice, even with their busy schedules. On Friday morning they were all up and out the door before we were.

David leaving for his last two Freshman finals.
Maddie heading to the neighbors for a ride to the last day of school before break.
Erika heading to a corporate Christmas party at AT&T Park in SF (formal clothes in her pack)

Then we had a leisurely drive in the sunshine to my appointment with time for lunch on the way.

As usual, I saw my nutritionist, speech therapist, respiratory therapist, social worker, a representative from the Muscular Dystrophy Association  (MDA) which also supports ALS patients, and of course the doctor. No medical intern this time.

Lung function test – no major changes from last time – good news

The doctor gave me a prescription for a different saliva reducing medication, and told me about Botox injections in the saliva glands which will be an option if the new drug doesn’t help.  It is getting more difficult to move saliva to the back of my throat to swallow.

All in all, a good clinic appointment, and we were actually done by 4:30 pm (the earliest we ever finished a 1 pm appointment). We were treated to this view on the way to the car.

We had time to drive to our hotel before our dinner reservation. There was a huge and beautiful gingerbread house in the lobby.

As we were checking in, the lobby began to fill with guests who had been evacuated from the upper floors due to a fire alarm. We were told by hotel personnel that it was a non emergency and we could proceed to our room. One problem, the elevators were still on fire lock down. We heard from guests around us that it was the second alarm of the afternoon. Well, let’s hope it doesn’t happen in the middle of the night. We finally got to our room and I had time to take my meds before we had to head out to dinner. We decided to Uber rather than drive another half hour in rush hour traffic.

We ate at Piqueo’s, a Peruvian restaurant we had discovered when my friend Debra and I ran the San Francisco Rock and Roll Half Marathon. We stayed at the top of Bernal Heights in a vacation rental apartment with Stan and Andy and Gary, Debra’s husband. We walked down a staircase, then down a steep street and then found this great restaurant on Cortland. 

We dined with my ALS friend Sarah Coglianese (speed4sarah.com) and her husband Rob Goulding and Jen McErlain  (ALS TDI) and her husband Jimmy. It was so much fun! I am mad at myself for not having someone take a picture of us at the table. I should say “our” table – it’s the same one we ate at with Debra and Gary. And Stan said it was surprisingly fun considering the circumstances that brought us all together. I have met some very wonderful people by having this awful disease.

We Ubered back to the hotel and had a peaceful night (no fire alarms) and a relaxing morning before meeting my sister Beth and her husband Jamie for lunch at noon. So nice to see them, especially because they missed Thanksgiving with us. We met them at a restaurant called Zero Zero and the pizza smelled so good.

The curly haired Saunders sisters
Our husbands, Jamie and Stan
Stan and I showing off our Christmas gifts from Beth and Jamie – a beautiful bottle of wine for Stan and some very soft and warm Ugg gloves for me, thanks guys!
Beth and Jamie by their lovely Tesla

We had a really nice visit. I wish we could do it more. Then we hopped on the Bay Bridge and headed back to Reno. Of course, a week before Christmas, there were traffic jams on I-80 near every shopping area. We made it home in time for our dinner reservation for a little Christmas celebration with Nana and Papa at Bistro 7 because we will have Christmas with Stan’s family. Lovely dinner and again no pictures. ūüėē Come on, Meg. Remember you need photos for your blog!

Then bright and early Sunday morning, Stan and Andy had to go sell Christmas trees in the early morning cold. They called me around 9 am and asked me to bring propane because the trailer ran out and it was freezing. So I was finally able to help with something for the Boy Scout tree lot. Plus I got to have a nice visit with Amanda, who came and sat with me because my car was so warm. We are neighbors but hardly ever see each other, especially now that I am not working at school.

Then Andy’s annual holiday recital Sunday night. I promise some photos. Here they are.

Andy playing Telemann Concerto in G Major, movement II with his teacher and another student
Andy with his viola teacher, Dustin Budish, who he has studied with for over 3 years.

Bravo Andy! Great recital. A very nice ending to our great long weekend.