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.

ob la di, ob la da, life goes on

This Beatles song was played during an aqua fitness class last week. The instructor had us doing intervals, alternating mogul skiing with high knees, and speed skating. Thinking about these sports brought back memories. About 12 years ago we vacationed at Steamboat Springs, Colorado, meeting my sister Sue and her family from Houston. The Olympic trials for mogul skiing were going on there that week, and I remember the skiers with white patches on their knees going back and forth incredibly fast. So I try to emulate them in the pool. The speed skating reminded me of the speed skater in my high school class and her older brother who was a speed skater too – the Cabanbans. It is interesting to watch the memories that come back to me and what triggers them.

Andy started his Junior year of high school last week. One of his classes is AP U.S. History. He commented on his reading assignment for the first night of homework. It was an article about something that happened in 2005, the year he turned 5. He said, “I am old.” This triggered a memory from my U.S. History in high school. I remember being shocked to find out that the Civil Rights Act was passed in my lifetime, in 1964, the year I turned 4. It truly seemed to me that it should have been law much earlier in our nation’s history. And I probably shared Andy’s amazement at being old enough to study history in my own lifetime.

My grade school and high school classes lost a member last week. Mike Engels came to St. Giles in 6th grade. He had muscular dystrophy and they told us he might not live through the year. He walked with arm crutches when he arrived, but soon was in a wheelchair. Our old Catholic school had two story and three story buildings, and of course no elevators back then. Some of the guys in my class would carry Mike on their backs up and down the stairs. Mike didn’t die in 6th grade, but made it to age 57! I took piano and sewing lessons from his mother in high school so I would see Mike at his home too. He studied accessibility architecture, was a disability access activist for a while, had his own greeting card company, and was an active member of a group called Association of Horizons, a Chicago organization that provides summer camp and other outings for disabled adults. The family asked for memorial donations in Mike’s honor to the organization that was such a big part of his life. associationofhorizon.org/wordpress/

Many of my classmates shared memories on the news of his death that brought back memories to me of this great guy.

Mike reached out to me last July right after hearing of my diagnosis. This was his Facebook post to me:

Dear Meg Saunders Macdonald my heart goes out to you, learning that you have ALS. I just want to offer words of encouragement to hang in there. I have had Muscular Dystrophy for 50 years. Been using a feeding tube for ten years. I cheat and drink a few ounces of a favorite beverage during the day. It’s hard to turn down some ice cold chocolate milk. Also eat a few pieces of watermelon now and then. It has been seven years now that I have also been using a ventilator full time. I have full time care that puts me together like Mr. Potato Head. It really helps to keep your sense of humor. Feel free to reach out to me. Sending you a warm hug.   Mike

Mike’s Facebook.Profile picture. Rest in Peace Mike. You were a wonderful example of how to live with what life gives you. You lived with Muscular Dystrophy for 57 years and kept your sense of humor, and even still drank margaritas!

Going back to very early life memories, our great nephew/grandson Oliver turned one on July 26. He lives in Hawaii so we couldn’t be there.

Happy birthday Ollie, we love you so much. I love the new tradition of first birthday cakes made out of fruit (photo sent by Jonika)!

I also remember that terrible day – the day before Andy’s first birthday – 9/11/2001. But on Andy’s first birthday, we let him get chocolate all over his face. 

On Wednesday, Stan and I watched a Netflix documentary called Chasing Corals which was about a film crew documenting the spread of coral bleaching and dying as sea temperatures rise as our atmosphere fills with greenhouse gases. It was disturbing and sad because I want Ollie to see coral and I want Andy’s future kid(s) to see coral too. I was also sad to hear that the corals I saw snorkeling in the Florida Keys on a geology field trip in college are all dead. That amazing day of snorkeling in 30 feet of crystal clear water and the beautiful coral inspired me to get certified for scuba diving. It is really important to reduce emissions of hydrocarbons worldwide, and somehow do it quickly to make coral gardening possible. If all the coral dies, the ocean ecosystem will collapse, leading to widespread famine and poverty for the cultures that depend on fishing. So please do your part to reduce emissions – no idling, turn off unused lights, try to drive less, contact legislators or whatever else you can think of to help. Congrats to you if are off the grid and using renewable energy.

I had another flashback to first grade. I visited Katy, Andy’s personal assistant/ tutor, in her first solo classroom. I brought her a salad from Eclipse Pizza, and we shared lunch.

I stayed while she taught a lesson after lunch. It was School Rules and Rhymes. There were two girls who always had their hands up. I was that way in first grade too. But later I got shy. She introduced me as someone she used to work with and she told them it was cool that I talk with a computer (my phone) and type what I want to say. I used some of their class phrases – I said, “Holy Moly Guacamole you are all so smart”.

On Saturday night, our friend and former neighbor, Joyce, got a group of family, current and former neighbors together to go see a live production of The Sound of Music at Bartley Ranch Outdoor Amphitheater. The day before was her late mother’s birthday. She got the group together to go see that show in memory of her mother. It was a special memory of my mother also. It was the first movie I saw in a movie theater when I was 4. I remember that day –  a dentist appointment in Oak Brook, then such an awesome movie for my first one, and just me and mom (the luck of being the oldest girl!)

The entire group, minus photographer, Vince.
Amy and Scott, who we bought our house from, Joyce and Vince who were our next door neighbors, and then Scott and Amy moved back and bought Joyce and Vince’s house, so they were our neighbors too! Photo by Kathy Zodiaco.
Joyce, Vince, and their daughter Kathy. They are,such lovely people to have in our lives!

And now a memory from just a year ago: Ales for ALS. Our local Great Basin Brewery brought Buster 4 back. For every pint sold they donate $1 to ALS TDI.

Find your own participating brewery here: http://www.alesforals.com/brewers.aspx

On a totally different subject, but one that makes my life easier and less messy: new packaging of my feeding formula.

 On the left, Jevity 1,5 in a can. The new packaging is on the right. 

For about a year now, I have been feeding myself with the cans. They are awkward to pour into the feeding tube, especially with my lazy eye 😉, which causes depth perception problems especially when I am tired or fatigued which is often. The cans also drip, and make a mess on whatever surface you set them on. So the new packaging is great – easy to pour and resealable too. It is also easier to carry around. So only 12 messy cans to go – that is two days. And then all my messy meals in the first year of my feeding tube will be a memory too.

It is wonderful to be able to eat without dripping or making a mess. At least I can hope it will be less messy! Of course. Jonika used to call me MAM for Messy Aunt Meg for my tendency to spill food on my clothes, so it may be hopeless!

Ob la di, ob la da, life goes on.

The Waiting Game

We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. – E. M. Forster
Source: Brainy Quotes

Giving up the life you had planned is one of the hardest parts of having ALS. That is why I named my blog Altering Life Expectations (however I changed the spelling to have the initials ALS). There are lots of other reasons that people’s plans are changed. I don’t know what it would be like to be living with terminal cancer, for instance. And countless humans have had dreams shattered throughout history. 

For me, coming from a family with 3 other ALS patients in two generations, I am waiting for the proverbial shoe to drop, so to speak, because the other three had limb involvement. So far, mine is restricted to the Bulbar region – speaking, swallowing, and some diaphragm involvement. It is possible that it won’t spread to my limbs before my diaphragm and other breathing muscles give up. But it is also possible I could lose the use of my arms or legs. Now that I am sleeping longer since my bipap settings were increased, I am dreaming again. The other night I dreamed that I had trouble getting out of the pool (the way we did as kids – right up over the edge). The pools where I do aqua fitness have stairs or ramps, so this did not fit my reality, but perhaps dreams may be helping me get ready for whatever comes. However, I have also been eating and talking in dreams, too, so there is obviously a lot of memory involved in dreams. In the meantime, I will carry on waiting and doing what I can still do.

I am also waiting to start the new drug that was approved by the FDA in May, Radicava. It will be available in one week. We are waiting for insurance approval and a call from a health educator. I will need to have a PICC line inserted. It is hard to have it so close but not know when I can start. And there is no guarantee that it will work, but the chance of having my progression slowing down 30% is worth the chance, if it is affordable. We don’t know what our insurance company will decide to pay. So I wait.

My stepmom, Anita, had her birthday last week when all of us Macdonalds were out of town. This is a picture of her with her son Brian on her actual birthday.

photo by John Saunders

We were able to go out to celebrate with her one week after her birthday.

photo by John Saunders

Joe and Sheila Erlach joined us at Wild River. Sheila and Anita went to high school together. Joe and Sheila and their five kids are the people I stayed with when I first moved to Reno.

photo by John Saunders

I tried to get a photo of the birthday girl at the head of the table but I had not put the lens on correctly. My dad did get a photo of me when I was trying to get a photo.

photo by John Saunders

But here is the birthday girl with her beautiful new bicycle, in front of their beautiful new home.

photo from Anita Saunders

On Wednesday I went to lunch with two fun friends, Melissa and Sabine. It was fun and relaxing!

Photo by Melissa Knight

On Thursday, I walked with Andy to our neighbors across the street, with two intentions. Andy was selling car wash tickets for his cross country fundraiser and I also wanted him to meet Olivia and her mom because he loves kids and dogs and he is willing to babysit to earn money. Olivia is going into 4th grade and she is the sweetest girl. I know her from working at her school. She had a present for me. I was so touched. Her mom said she was going to ask when she could bring it over.  And they said dad’s car needs a wash.

Olivia made the flowers out of pinecones. I will treasure it.

Stan went to a rocket launch at Black Rock Desert Friday to Sunday. I opted to stay in Reno and get our cars washed at Andy’s fundraiser.

I do have a sore throat and that brings up the ALS Emergency Room and EMT Information sheet I carry in my purse.  All of us humans are waiting to die someday. My someday will probably be sooner than I was planning. It covers:

Shortness of breath – do not give oxygen for shortness of breath or low SpO2 unless I have another respiratory condition that requires it. I may need noninvasive positive pressure ventilation to expel CO2.

Oxygen may not help and may mask respiratory failure. My lungs are healthy, but my muscles, including my diaphragm are weak. I am using a Bipap at home so the settings should be the same, or ideally my Bipap from home should be used. If not using Bipap at home, a Bipap with a pressure of 12/6, backup rate of 10 with titration may help. 

Laying me on my back: It may be difficult for me because of the possibility of CO2 retention due to diaphragmatic weakness and aspiration due to poor ability to protect my airway. I may be able to lay on my back if using Bipap or non-invasive mechanical ventilation.

Avoid: Paralytic or general anthesthetics, narcotics or muscle relaxants unless absolutely necessary. If used, the ability to rapidly assist ventilation non-invasively should be available.

I have a gastronomy tube, please use that for administration of “oral” medications.

I am not able to speak at all, but I UNDERSTAND what you are saying.

Speak to me in a normal voice and ALLOW ME TIME to respond.

My caregivers and I are extremely knowledgeable about my condition, treatment needs and equipment. Please work with us.

In addition I have a written request for 

  • no morphine
  • antibiotics
  • nebulizer
  • bipap from home
  • no tracheotomy
  • no invasive ventilation.

All of these requests are to increase my chance of surviving Pneumonia or Flu.

And then to add some humor to my request, I read this today and it was so funny I want it on my advance directive!

My last wishes are to empty a whole jar of pop corn kernels in my feeding tube, so my cremation will be epic.

A Week of Love, Connection, Connections, and Hope

While Andy was at camp, Stan and I had a busy week of travel. But first, after Andy left on Sunday, we had a lot of visitors. Stan’s friend Marc from work stopped by to visit. Then my neighbor and friend Amanda stopped by for a visit. Thanks Amanda! We are lucky to have your family as neighbors.

Then Stan’s uncle Pete and his wife Mariana, from Corvallis, Oregon, visited. They were in town for the 150th anniversary of the two room old Huffaker School that is now at Bartley Ranch Regional Park. Pete and his sister Sally, Stan’s stepmom, both attended that school when it was at Huffaker Lane and South Virginia. We had a nice Italian dinner at Zozo’s with them.

We had not seen them in many years so it was great to reconnect.

Then Monday morning Stan and I took a 6:30 AM flight to LAX (Los Angeles). We saw this great Lexus while we waiting for our Uber.

“Sorry Dad”

We went for my screening appointment for the C9orf72 gene mutation biomarker study being conducted by Washington University in St. Louis, Missouri. Cedars-Sinai Medical Center in L.A. is the closest location to Reno for me to participate. We arrived at 8 and my appointment was not until 11 so we were able to have breakfast before getting our checked luggage. We Ubered to Cedars-Sinai even though we would be early. We had a nice chat with our Uber driver who was from Bogata, Colombia. His brother is a professional bike racer here in the U.S., so he had just watched the Tour de France like we had. He knew a lot about the successful Colombian riders in the Tour. He also did a good job of convincing us that we should visit Cartagena, Colombia, an old colonial city with many beautiful old buildings. He said Bogata is not safe, but it would be difficult for us at such high elevation too, since Stan and I both have lung issues. I still love Spanish so it was an enticing idea.

At Cedars-Sinai, I signed the consent papers for the study, which will look at the C9orf72 gene mutation for each ALS patient in the study to see if there are differences in the mutation that correlate with the way and the age the disease presents itself. I went through a detailed medical and family history, had my current ALS-FSR measured (a measure of disease progression by loss of functionality), I had blood drawn, and I had a neurological exam. Stan also had to fill out a questionnaire about me.

The gene mutation occurs as a repeat of part of the genetic code. If the repetitions are above a certain number the patient would eventually develop ALS or Frontal Temporal Dementia (FTD) or both if everyone lived to be 150. For those of us that were born with this mutation, it is believed that our bodies are able to overcome the damage the mutation causes until they can’t anymore, and then the disease manifests itself.

This study must be completed prior to clinical testing of antisense gene therapy, which could begin as early as 2018. They said that a spinal fluid test is optional. I volunteered because I want to help advance the science as quickly as possible, for my siblings, cousins, son, and niece and nephews. The spinal tap will be scheduled at a later date.

We were done in time to check into our hotel and walk to a nice lunch. Then Stan took a nap and I went to the pool and did my aqua fitness.

Then the next morning we had breakfast by the pool.

The plan after breakfast was to Uber to Orange County to visit with Lynne and Augie Nieto. Augie is Chairman of the Board of ALS TDI and Lynne is on the board too. We ordered Uber at our hotel and soon got a call from a driver who said she couldn’t get there due to a street closure for tree trimming. She asked us to walk two blocks to the other side of the tree trimming.

So we did. You can see our hotel in the picture – the big building two blocks away. Then Uber called to tell us the driver was at our hotel. Big Uber Fail! They sent another driver, who picked us up and drove us to our destination. She had all types of phone charging cords which was nice. My only complaint was either really bad shocks in the car or really bumpy highway or both, because it was difficult to knit on the hour plus ride. We arrived just after 11.

Lynne and Augie welcomed us to their beautiful house on a cliff over the Pacific Ocean. Augie has had ALS for 12 years. He started the fitness company that made Life Cycles. His Augie’s Quest raises millions for ALS TDI each year. We talked about fundraising we could do in Reno. Augie showed us the trailer for the new documentary about him, as well as a television news segment about him working with Project Walk, a group that works with spinal injury people to help them walk again. Augie is the first ALS patient they have worked with. He was able to walk his daughter down the aisle at her wedding, with some assistance. But even months before, that wasn’t imaginable. He worked out every day very hard to get to do that.

I told Augie that I like his song, Augie Nieto by Five for Fighting. The song ends with a quote from Augie: “It’s not the breaths you take, it’s how you breathe.” Beautiful. They liked my ALS SUCKS t-shirt. I said I like that it has a turtle on it because we are still ourselves inside our shells of ALS bodies.

They had a meeting at noon and we overlapped a bit so we met a lot of other very nice people.

Then we had a very nice spot to wait for our Uber ride back to LAX.

We thought it odd that were lifeguards so high up the cliff, but it turns out they were counselors for the Junior Lifeguard Camp for kids. Parents were coming to pick up their kids.

We arrived at LAX at about 3 PM and our Uber driver told us that we were smart to get there before 3 because traffic later is much heavier. He said that 2 out of 10 rides that he takes to LAX, the passengers miss their flight due to traffic.

This time we were changing planes in Las Vegas. We saw this sign at LAX.

Can someone from visitRenoTahoe.com please explain what demographic group you are targeting? It wasn’t mine, because I don’t get it.

Our flight out of LAX was delayed due to a crew delay. We ended up landing in Vegas when our next flight was due to depart. Tight connection. We rushed to the next gate and the gate attendant said, ‘The Macdonalds?” because we were the last two they were waiting for. He said they would wait for our bags too. Nice #Southwest. Even with this delay we arried in Reno on time.

Then we had two nights and one day at home. It was a day of recovery for me. Stan didn’t get to rest. He met a friend for breakfast, went to wound care (wounds on his legs don’t heal due to Prednisone), and had lunch with another friend. He rested in the afternoon. I went to 5:30 pm Aqua Fitness. It was a great class – we kneeled, sat, and stood on boards which is a great core workout.

On Thursday we drove to San Francisco to meet our friends Barb and Barry from Ottawa, Canada. Barb had visited us in Reno last fall. Barb was in San Francisco for a geriatic pharmaceutical convention which ended the day before. We checked into the Bed and Breakfast and then met Barb and Barry at the cocktails and hordeurves downstairs.

This was the first time we met Barry. We all had a great time. That night we ate at a Morroccan restaurant called Mourad that was very nice and had great food  (it looked and smelled great to me).

The beautiful wood at the entrance.

Then on Friday, we did a segway tour of the city. Barb said they had always made fun of the segway tourists, but secretly they wanted to try it!

We had great training, first right outside the segway tour place and then in a parking lot.

Stan was the first to try. That is our great Irish tour guide behind him.

We were in a group of 8, the 4 of us and a family of four with two teenagers. We all picked it up quickly. The change of balance is all in your feet so it seemed similar to regular downhill skiing. We stopped at a museum with arcade games from a hundred years ago and newer, along with the first photo op.

Here we are with Alcatraz in the background.

Then we went to the municipal pier, aka the Segway raceway. Stan really enjoyed this part.

Barb with Coit Tower in the background

We then went to the public parking lot by St. Francis Yacht Club where good pictures of the Golden Gate Bridge could be taken. It was partially fog covered.

The next stop was the Palace of Fine Arts. I had driven by countless times but never stopped. It was so beautiful.

And then, because our group all caught on quickly, we got to go up to the top of Lombard Street and ride down. This was a highlight for me – both the steep climb up and the winding ride down past all the beautiful houses and flowers. We were instructed to refer this as “chocolate” because not all the groups that left with us got to do that.

After the Segway Tour, we had an In N Out Burger lunch so Barb and Barry could experience the California icon. Then Stan and I headed back to the Bed and Breakfast to rest and Barb and Barry went to the Exploratorium.

That night we met Jen from ALS TDI and her husband Jimmy at a Thai restuarant. We had a lot of laughs. What a fun group.

The next morning, after a final breakfast together, we had to say goodbye. We were headed back to Reno and Barb and Barry planned to take the ferry to Sausalito and walk back over the Golden Gate Bridge. They would fly to back to Canada the next day.

My eyes are closed, oh well. It was a nice parting breakfast discussion, including when we could possibly meet again.

We drove back to Reno and got there just in time for Stan’s wound care appointment. Another close connection. After that we went home and saw Andy who had arrived home from camp. As if we hadn’t already done enough this week we went out to Animal Ark for their Cheetah Dash. Animal Ark is an animal refuge that takes injured or abused wild animals. A few times a year they invite people out to watch the cheetahs run. They have devised a very fast pulley system to pull the lure that the cheetahs chase. The fastest one we saw went 50 mph.

The best thing to come home to was our son.

The World I Know

So I walk up on high

And I step to the edge

To see my world below

And I laugh at myself

While the tears roll down

‘Cause it’s the world that I know

Oh it’s the world that I know

From The World that I Know by Collective Soul

I heard this song on the radio and it struck a chord with me because I am good at laughing at myself but the tears roll down too when I look at my life. Tears of nostalgia which are mixed with smiles and laughter, tears about what ALS could rob me of in this beautiful world I know. My tears are mainly in my mind.

Let me continue to show you some of the beauty of the world I know.

On Tuesday we hosted the Reno High Cross Country Team for a breakfast after their early morning practice. My friend Melissa, who is a professional photographer came and took photos while watching her 5 year old nephew. Thank you my friend. Melissa’s website:  FaithPhotographynv.smugmug.com

It was one of the only smoke free days this week. It is a really nice group of kids, coaches, and parents. It was nice to be able chat with some of them. Andy is really enjoying the preseason training.

I went to aqua fitness 3 times this week. I have lots of new friends in the classes. On Wednesday I went in the steam room for my curls like I always do, but then I went for my haircut from the gal who has helped me to love my curls: Nicole Page at Curl Envy. She loved that she got to trim my steam enhanced curls.

I can’t say enough good things about Nicole and how well she knows curls. If you are local and have curly hair, go see her at Sola Salons Suite 20.

On Thursday I had a dermatologist appointment to check on a mole that had been previously biopsied. There were only minor changes, and she told me she would be comfortable waiting and see how it looks in 6 months. Then she said, ‘or if you are worried about it we could remove it today.” The pre-ALS Meg would have opted for removal, but the ALS Meg has bigger things to worry about.

This week involved a lot of paperwork:

  • For my disability retirement application from PERS, the state employees retirement program. There were missing documents they said. I had confirmation that they had been sent from the people whose reports were supposedly missing. So I had to contact them again, and ask them to submit again. What a pain.
  • For Andy’s Boy Scout Camp next week. Documents included Medical Forms, permission to use firearms, and permission for travel and medical treatment. He will leave Sunday for a camp near Kirkwood Ski Area. They will hike in a mile to camp on a lake. I hope he has a really fun week – he signed up for kayaking, archery, and advanced sailing. He really loves sailing. It looks like a great camp on the website.
  • For the Benefit Investigation and Enrollment for Radicava which should be available mid August. ALS patients should contact their neurologists and have them get the forms from radicava.com. There are 4 parts that the patient fills out (1,2,3 and 5). The doctor fills out the rest and submits it. This drug is very promising for significantly slowing the progression of ALS.

On Thursday Andy participated in his second annual Driver’s Edge, a program that teaches defensive driving. He was glad to have the reinforcement of the skills, and I am glad he did too.

My college roommate Sue will be at Tahoe this weekend with her grown kids. We will meet for lunch on Saturday. She said she is bringing old photos, so I thought I should look for some too. I found some from when her kids were little and from my wedding. I also found a photo of my 8th grade basketball team. It was the first girls basketball team at the school – 1974, Title IX. We were the opposite of undefeated. My dad made me play, and I have a lazy eye and no hand-eye coordination. The photo was pretty pathetic, like the team. I posted about it on Facebook, and uploaded it to our class website. One of my teammates, Casey, said, “Shut up! I got 2 points and it was considered a miracle #catholic.” I laughed so hard about that. Even the next morning when I thought about it. And I can laugh at the photo but there is no way it will be on Facebook or this blog. There are limits to what I share.

And the Saturday visit: It was so great to reconnect with my college roommate Sue. She still lives in the Chicago area but is visiting her kids who live in the Bay Area. They rented a house at Lake Tahoe for the weekend. We met at Lone Eagle Grille at the Hyatt in Incline Village. It was so great to catch up. We shared photos from college and after. So many great memories! Thanks Sue!  It was great to get to know het kids a little. They are great young adults.

Meg and Sue, college roommates, with our kids. My Andy and her Andrea and Miles.
Sue had photos of our dorm room and many from our dorm floor. Lots of memories. I have to find my photos, somewhere in our hot unorganized attic. I did have the ones from when her kids were little.
Miles and Andrea -Happy siblings that live close to each other in the Bay Area.
I am so happy my guys came along to lunch with my friend and her kids.

And finally, Stan and Andy and  I watched a movie on Netflix, Lion, that is now one of my favorite movies because it is about love, connection and hope.
 

Thoughts during a non traveling week with no one in the hospital 

We did not travel and no one went to the hospital this past week. It was nice to have a week at home after so much travel, and really nice to have no hospital visits. (Knock on wood).

We did have a visit from Theresa and Sandy, sisters from the family I stayed with when I first came to Reno.

Theresa, me, and Sandy

Theresa was in town from Klamath Falls, Oregon and Sandy was in town from Denver. In the photo I am wearing the kaftan Anita, my stepmom, made for me with a kangaroo pocket for feeding tube access. I love it. Theresa is taking my mountain bike home to try it out and decide if she wants to buy it. I won’t be mountain biking anymore.

I did get to aqua fitness twice this week, which is better than the once a week I averaged in June. I had been going in the afternoon because of napping in the morning, after not sleeping well at night. One workout this week was 5:30 P.M. I had a nice surprise when my friend Shelli, who usually teaches in the morning, was subbing. The other workout was my regular 10:10 morning class. It was nice to see my friends.  I feel the aqua fitness is what I need for range of motion. I always go in the hot tub after class  (my friend Alice calls it our dessert). I usually meditate in the hot water, but I also hear other conversations. One I overheard was too incredible to ignore. A woman was talking about a woman she saw on TV who had 24 inch fingernails. When asked how she does things, she said, “I can’t do anything. Everybody else does everything for me.” I thought why would anyone choose that? There are so many ALS patients who would give anything to be able to do anything for themselves.

After the hot tub,  I go in the steam room for my curly hair. It only takes a few minutes to get my hair to react to the humid air by curling perfectly. Oh, if my middleschool self (who HATED my curls) could see me now!

I set a goal of filling my five food delivery boxes each month with giveaways. Since we traveled so much in June we had twice as many boxes to fill. Between all three of us we filled them all. It feels good to simplify and only keep what we really need. I am more motivated than ever. Every day  I can use my arms and legs is a gift. I read And the Mountains Echoed by Khaled Hosseini. The protagonist’s mother had ALS and when he visited her she was busy with house repairs, trying to get as much done while she could. It has taken me a year to get really motivated. Fatigue is my limiting factor.

Stan got some good news this week! After numerous denials from our insurance company, he was finally approved for a drug that could potentially help him get off prednisone. He started the new drug a few days ago. It is wonderful to have hope for him!

I am waiting for my new drug, hoping it will be available in August as MT Pharma, the drug company, has been saying.

I submitted photos to the Great Nevada Picture Hunt. Lots of travel around the state this summer and my new Canon Rebel camera helped. I may share what I submitted in a future blog. Photography has added so much to my life, including new friends from the Nevada Magazine event a few weeks ago, and one who will be a close friend (Melissa😎📷).

It is also a luxury to be able to watch the Tour de France live in the morning too. Even when I get up early to do my meds, it’s already on. Stan and Andy enjoy it too.

I am knitting again, trying to make socks for the first time. I had been avoiding knitting, afraid that my fingers wouldn’t do it. I now realize I need to do what I love until I can’t. Knitting is very relaxing for me – a Zen experience. And I am finding socks to be a fun new challenge.

In closing, a t-shirt shirt that my dad made for me states the obvious but I love it.

And even with a disease that sucks I can still enjoy life.

A closeup of my dad’s abstract that unintentionally looks an abstract of ALS. Sort of. And I love that there’s a turtle on it.

Central Nevada Fun and Not So Fun Fires

To recap from last week’s blog: we left on my birthday to drive to Miles End B and B Lodge in Kingston, Nevada. When we arrived my dad and stepmom were already there as was Rod, Ann the proprietor’s brother and also Stan’s friend from childhood. We had a nice dinner at the Friday night social gathering where John sells his wonderful food and neighbors gather to enjoy each other.

Andy and my dad
Stan and Anita, my stepmom 
Rod
Birthday girl with father and husband. My eyes were irritated from my meds, so they were closed in most photos.
Anita and me
Our host and friend,  John
Our other host and friend, Ann

Our friends, the Peters, arrived later, having driven from the Sacramento area.

On Saturday, we decided to go up Kingston Canyon to Groves Lake for lunch.

We found a nice grassy slope, perfect for picnic and swimming.
My dad, the big city guy, braving the wilds of central Nevada.
Anita
Only Andy and Maddie braved the cold water

Stan and Paul and our lunch view

Stan and Rod

The kids rode our RZR side by side aka the dust mobile down the canyon.

Photo credit John Saunders
Dusty faces, photo credit John Saunders

I enjoy riding and driving the RZR side by side too, although the dust really irritates me because I can’t cough. We started using dust masks this trip. They helped.

My dad and Anita left the next morning, Sunday. While Rod went for a hike, the Peters and the Macdonalds decided to do a dirt bike and side by side ride on a pole line road in Big Smoky Valley. A couple of us took the truck to Carvers for gas, and met the others where the pole line road met a well graded road.

After lunch in this spot, we decided to head back to Miles End for a relaxing afternoon.

Andy did some fishing, and I got to take a nap. We had a wonderful dinner, as always. 

Andy wanted to try some Painting the Night with Light photos of the old mill in Kingston (inspired by the Nevada Magazine photo seminar the week before). Erika, Maddie, and I went along. After two dead camera batteries  (poor planning on my part) we decided that Andy would have to scope it out in the daylight first anyway.

The next morning, Rod left to drive home to Carson City. The Macdonalds and Peters drove to Diana’s Punch Bowl in Monitor Valley to try cooking hot dogs in the near boiling water.

Diana’s Punch Bowl from the highway
Andy and Maddie looking over the edge
Erika, Andy, and Stan getting the hot dogs ready.
Casting into the Punch Bowl
A hot dog entering the water. That’s vegetation sticking out above it, not the fishing pole
Since this was an experiment, the Peters brought their Hibachi grill as a back up

We wished we had brought a thermometer to get the water temperature because the hot dogs were warm, but not hot. Our own Mythbusters episode without some key measurements! Thank you to #travelnevada for this fun idea!

After lunch, the Peters headed for Highway 50 to go home, and we headed over Peet’s Summit, back to Miles End. When we got back, our friends Chuck and Alice had arrived and were all checked in. Andy checked out the mill in the daylight and did some more fishing. The rest of us relaxed.

We had another wonderful dinner and Ann and John relaxed with us afterward.

I was not feeling well, so Stan took Andy out to help with his nighttime mill photos. They had fun and got some photos that Andy can layer in Photoshop.

The next day was 4th of July and we all drove about 60 miles to Belmont, Nevada for their old-fashioned 4th of July celebration. Even Ann and John took the day off. Belmont’s 4th of July included a parade, a bbq lunch, and old-fashioned games like sack races and 3 legged races and running races, as well as an art sale in the Historic Belmont Courthouse.

A military kazoo band led the parade

The parade included kids on decorated bicycles, lots of decorated side by sides, and even he who shall not be named and Melania were there!

The parade ended with a float that had a tribute to a fallen soldier.

All gave some, some gave all
All gave some, some gave all

When the last float reached the reviewing stand, the announcer read the names and locations of all the Nye County natives who are active in the military. Then a giant flag was unfurled and everyone got to hold it.

The theme songs of the Army, Navy, Air Force, Marines, and Coast Guard were sung. We all had song sheets with the words. After the songs, a moving Civil War story about the origin of the song Taps was read and Taps was played. Then it was time to properly fold the flag. All the veterans and Boy Scout Andy knew how to fold it.

This little cutie had painted her own flag on the front of her mini RZR on the back of her parents’ RZR side by side

Andy got 2nd place in an age group running race.

His prize was a dollar coin and a lollipop

The sack races were very cute.

The Historic Belmont Courthouse

On the way back to Kingston, Andy got to try some bouldering.

And then we had a scare on the drive back.

A fire that appeared to be in Kingston Canyon
Photo Credit Alice Hilsabeck
Photo Credit Alice Hilsabeck

It wasn’t until we got very close to Kingston that we could see it was north of Kingston by several miles. Ann is part of the Kingston Fire Department so she had to gear up and head to the fire. The rest of us loaded up dirt bikes and the side by side and our suitcases in case of evacuation. But with very little wind, the fire was under control after about 5 hours. So Ann was back to join us for dinner. She served red white and blue sundaes for the holiday dessert.

Chuck and Alice with their patriotic sundaes
Stan and Ann, friends for over 50 years
Saying goodbye to John
And to our favorite dog, Zee

After saying goodbye to our friends, we drove home on July 5, passing three other fires. We drove through the lower Truckee River canyon seeing flames near the road. Right after we went through they shut down the road, and it didn’t open again until 2:30 A.M.

As I write this, there are fires in California, Nevada, Arizona, Colorado, Montana, and British Columbia. Some of the lyrics from U2’s Bad seem somehow approriate:

This desperation
Dislocation
Separation, condemnation…..
……desolation
Let it go

From U2’s song Bad

As we drove toward Kingston, we thought that everything we had there was replaceable. But we also thought of all the people and animals up the canyon. So many people across the west are being desperately dislocated And separated from everything they own, and all that will be left is desolation. And though it’s extremely difficult, you have to let it go.

Just like ALS. You can’t fight the progression and in the end, you have to let it all go. And more from Bad: I’m not sleeping. (Yelled:) I’M WIDE AWAKE. I am going to live with this disease, and LIVE until I die.

I have ALS, ALS doesn’t have me. 

– Andre Williams, Jr.