The Hard Part of Being Friends with PALS (People with ALS)

When I was diagnosed with ALS almost a year ago, I already knew a lot about the disease because my mom had died of the same thing. In the early 1990’s when my mom was sick, there was no such thing as social media. I do not know if my mom had any friends with ALS.

My life is different. I have met so many wonderful people with this disease, through our local support group, through the ALS walk, througn ALS TDI fundraisers and other events, and through a couple of different Facebook groups. My life is truly enriched from knowing these awesome people. The most active Facebook group is ALS – We are All in This Together. There is also a group for moms with ALS with kids under 18.

I knew the risk of befriending people with ALS. There is no cure. It is 100% fatal. This past week, one of my favorite people in our local support group passed away. You may remmber me talking about Deb with the awesome carwash gloves on her wheelchair leg rests.The last time I was with her, she gave me the Panda her son had made at Build a Bear (he made an extra one for “Mom’s Friend”.)

I loved Deb’s sense of humor – she was using medical marijuana for her pain. She said she never used it when she was younger because she was a gooodie two shoes. But, she said, if I knew then what I know now I would have! She also talked about falling in her living room and ending up on her back like a turtle on its back with no way to get up. Her family thought it was funny but it was hard for Deb to laugh about it.

Her disease progressed rapidly. She was full time in wheelchair, losing the ability to swallow, and losing the use of her hands when I met her and she was diagnosed just before me.

I also loved Deb’s tears. She hated the way she was living. It went so fast she didn’t have time to get used to it. She just began formula feeds a few weeks ago. She also had pain, which is hard for me to imagine how miserable that would be, since so far I don’t have any.

Though we were not friends long, I felt a kinship with her and I wished I could get to know her even better. Now all I can say is Rest in Peace my friend. My panda will always remind me of a great lady!

Beautiful Camping then the Best Laid Plans….

The publishing delay has ended. My blog is back!

On Memorial Day weekend we camped on our friends’ property in Plumas County. After so much snow this winter it was very green with lots of wildflowers.It was a relaxing weekend, with fun activities thrown in.Andy and Stan rode dirt bikes.

Jim and Peggie rode mountain bikes.Jim played music.And so did Steve and Gary.

Alice, our host, with Timmy 

Chuck, also host relaxing in camp. Many of us got a lot of reading done too.

Our motor home in the early morning light.

A pond that appeared after the big snow winter was fun for throwing rocks into.Peggie and I took a hike to see the wildflowers and all the green. We saw a couple of snow flowers.

It was very green, greener than most years.

Then we saw Andy riding by,followed by Stan.

Some of the beauty we saw.

We also hung out at Steve and Dianne’s cabin down the road.

Ian watching inquisitive Adi, his son.

Dianne with her grandson, Adi.

Ian playing his dad’s guitar, with dad Steve at his side.

We even got to have a fire, the first in many years. It was finally wet enough that the fire wasn’t going to risk starting a wild fire. My camera obviously focused on the flame.

All in all a weekend with good friends, good food (as I was told), and good relaxing and fun.

In the week that followed I got confirmation that I have the C9orf72 gene mutation that causes ALS – no surprise, considering that my mom had been confirmed to have it too. This now allows me to participate in research specifically for this gene mutation. This is what I feel I can do for my son and my niece and nephews and cousins. The researchers want to first see what the different forms of the mutation do to the outcome of the disease. Some people get ALS, some people get Frontal Temporal Dementia (FTD), and some people get both. There are also people with the mutation that get no disease at all. My family has a long history of dementia also. Getting the genetic confirmation has put into motion my enrollment in two studies, one in Los Angeles and one in San Francisco. It is exciting to be involved in research that could lead to a cure for this particular genetic form of the disease. The gene is dominant, meaning that offspring have 50% chance of inheriting the mutated gene.

On Wednesday, Andy had his Spring Orchestra Concert at school.Andy with his proud parents after the concert.

On Thursday, Andy stayed home from school, after throwing up in the middle of the night and most of the day. It was unfortunate timing – the week before final exams. He did go to school Friday, and Stan and I drove to San Francisco.

On Friday, I had my second botox injections in my parietal saliva glands. I had noticed the effect drop off in the last few weeks. The first dose did let me cut the dose of the saliva reducing medicine in half. This time they did a higher dose and both upper and lower part of the glands. As I write this I am already noticing that I can cut my dose of the medicine even more. 

Next came my ALS clinic visit. I first met with the speech therapist. She gave me some exercises to keep my TMJ muscles flexible so I can keep my mouth closed without effort. Then I met with nutrition and they were very happy that I am maintining my weight. I met with the respiratory therapist and she shared the results of my overnight pulse ox test, which were disconcerting. The results show that I am desatting (blood oxygen levels getting dangerously low) several times while sleeping, so much so that I am not getting any REM sleep. I do wake up a lot. No wonder I have had so much fatigue. I use a bipap, and this resulted in an order to increase my bipap pressures. We also found that I have vocal cord involvement impeding my forced vital capacity breathing tests. Air does not flow smoothly when I am making an effort. I met with Physical Therapy and my neurologist, this time Dr. Catherine Lomen-Hoerth, the director of the ALS clinic. There is no sign of progression to my limbs yet. Dr. Lomen-Hoerth hooked me up with the UCSF folks researching the C9orf72 gene mutation.

All in all, it was a good clinic visit. My disease is progressing, and I am uncomfortable at times (needing cough assist or dealing with saliva issues) but I still feel incredibly lucky to be able to self care this long.

We finished at the clinic at about 5 P.M. and we walked to dinner about 5 blocks to a brew pub called Social. We had big plans for the weekend ahead. Our son Andy had driven to the Sacramento area after school to our friends the Peters’ house. Then he rode with them to San Jose, where we met them about 8 pm. Andy was running in the San Jose Giants race at 7:30 Saturday morning. Erika was going to run too, but couldn’t due to injury. Then on Saturday afternoon we were going to Oakland to watch the A’s vs Washington Nationals baseball game, and on Sunday the Young Faces of ALS National Corntoss challenge in Piedmont – Andy and Stan were a team, as were David and Paul. 

Saturday morning arrived with Stan throwing up at 5 am. Erika, along with her daughter Maddie and Maddie’s cousin Jacqueline, took Andy to the San Jose Giants stadium for the race. I stayed at the hotel to help Stan. I also had to go to CVS to get some medications he forgot to bring. Erika texted photos (thanks girlfriend!)

Andy, ready to race 5 miles.

After the 5 mile race with his medal and Madison Bumgarner bobblehead. He got second in his age group. Not bad after being sick two days before!

Then Andy went to the A’s game with the Peters and Paul’s dad. I stayed at the hotel and relaxed, with the A’s game on TV on mute, listening to Stan talk like a pirate he was so miserable. (Lots of Argh Matey and You Scurvy Dog, as you can imagine.) I was reading a book about Captain Cook so the language fit right in. He threw up until noon and had diarrhea too. The lucky ones at the baseball game saw an exciting one with lots of home runs.

Stan was not getting better so I texted our friend Peggie, who is a cardiac nurse practitioner. She recommended the emergency room for fluids. I could not convince him to get up. When everyone got back from the baseball game, I asked Paul to come help. He was able to help Stan get dressed and out of bed, and the hotel brought a wheelchair. We left the kids at the pool, and drove to the closest emergency room.The kids also had permission to order room service dinner and watch a movie.

We went to Santa Clara Valley Hospital and there was construction at the ER entrance.Paul had to go in and get a wheelchair for Stan.

The Emergency Room in San Jose was an interesting place to be on a Saturday evening. It was really busy. Stan was triaged and then we waited. They took him for an x ray and then he had an EKG. Then more waiting. He became delerious, with his eyes not focusing and trouble keeping them open. Paul talked to the Physician’s Assistant in charge of ER intake, saying that we were more concerned about him now than we were when we came in. This bumped him up in triage. He was brought to a cubby behind the checkin and they took his vitals. I wrote on my boogie board, “He needs fluids STAT” and showed it to the PA and he responded right away. An IV was started and they gave him anti nausea meds. He was finally moved to an ER room. At 1:30 in the morning they decided to admit him. I texted Erika, and the angel she is, she came and got me.

I can’t thank Paul and Erika enough. Without their help it would have been a nightmare. On Sunday morning Stan was still in the ER. We were in the San Jose Hilton and Apple’s Developers Conference was starting the next day at the convention center connected to the hotel, so there was no way we could extend our stay. Erika took Andy to see Stan, while I stayed back at the hotel and packed everything up. I checked out and gave Andy’s bag to Paul who was hanging out with the kids in their hotel room. Andy would ride back to Sacramento with them, so he could drive home for school the next day. Andy and Erika had returned to the hotel, so Andy rode back to the hospital with me. Erika would pick him up there. By now Stan had been moved to a room. I was glad Andy was with me because it was a maze to find his room. 

We had to bow out of the Corntoss Challenge. I want to thank all of our donors, and I am sorry we could not participate.

  • Kathryn Maple Whitten
  • Joyce and Vince Zodiaco
  • Sam and Karen Hancock
  • Haley Mruz and Drew Sheehy
  • Steve and Dianne Lintz
  • Our biggest challengers (the Peters) 
  • The Silvola’s (my second cousin’s family)
  • Our Connecticut cousins
  • Barb Farrell
  • John and Anita Saunders
  • Pete and Jenna Saunders
  • Tim and Joannie Montagne
  • Alice, Chuck and Rita Hilsabeck
  • Marc Corrado

You all helped us raise over $1000 for ALS TDI, the nonprofit company that has a very promising ALS drug in the pipeline – truly awesome friends and family.

When I got in to see Stan, they were talking about releasing him. Erika texted that she was taking the kids to lunch and she would pick up Andy. Then I sat with Stan for the long wait for discharge. And a long wait it was. Andy went to a park after lunch.

We decided that Andy should head back to Sacramento with the Peters, so he could be sure to get home for school the next day. I texted my neighbor Hella, asking if Andy could stay with them (he doesn’t like to stay alone because he sleeps through his alarm). Hella’s reply was “Sure!!” It’s a good thing we made those arrangements because Stan was not released until 7 pm. I was exhausted from not enough sleep and Stan was not feeeling that great so we only drove a half hour and spent the night in Pleasanton. Then we drove home Monday – still a rather difficult drive because Stan still felt ill and I was too sleepy to help. But we made it home safely, arriving just after Andy got home from school.

Andy finished school this week, and after four days of finals, a very busy weekend before, and illness, he pulled off the grades he had set as his goal – all A’s and B’s. We are very proud.

This week we also got a new Polaris side by side so I won’t have to stay home when the boys go out on their dirtbikes.

Busy busy busy and not all as planned but it worked out in the end. Lots of love, connection and hope. And I did remember a dream last night so I am having REM sleep. And best of all, I avoided the stomach virus!

Cultivating Peace Within

Jerusalem by Naomi Shihab Nye

I’m not interested in
who suffered the most.
I’m interested in
people getting over it.

Once when my father was a boy
a stone hit him on the head.
Hair would never grow there.
Our fingers found the tender spot
and its riddle: the boy who has fallen
stands up. A bucket of pears
in his mother’s doorway welcomes him home.
The pears are not crying.
Later his friend who threw the stone
says he was aiming at a bird.
And my father starts growing wings.

Each carries a tender spot:
Something our lives forgot to give us.
A man builds a house and says,
“I am native now.”
A woman speaks to a tree in place
of her son. And olives come.
A child’s poem says,
“I don’t like wars,
they end up with monuments.”
He’s painting a bird with wings
wide enough to cover two roofs at once.

Why are we so monumentally slow?
Soldiers stalk a pharmacy:
big guns, little pills.
If you tilt your head just slightly
it’s ridiculous.

There’s a place in my brain
where hate won’t grow.
I touch its riddle: wind, and seeds.
Something pokes us as we sleep.

It’s late but everything comes next. 

From Red Suitcase Copyright 1994 by Naomi Shibab Nye

Source: https://www.poetryfoundation.org/poems-and-poets/poems/detail/54296

Stan and I are taking a mindfulness class at St. Mary’s Health and Fitness. We both have meditated for years, but with our current health conditions, it couldn’t hurt to tune up our skills. The first week we had to keep a meditation journal, which for me was a good reminder to do at least a little every day. The second week our assignment was no radio or other music while driving and no television. No television is not too hard for us because we don’t watch much and we DVR shows we do want to watch. We also received colorful Zen dots which are removable round stickers to put all over your house and car and they remind you to take a deep breath whenever you see one. I have one on our Surface keypad,

one on my water bottle, 

one on my Boogie Board, 

and I put one Zen dot on my car radio dial. 

I have always been a person who notices things, so that didn’t change much driving without radio. But I did pay more attention to my speed. And I was more mindful. We missed the third class, unfortunately, because the Radicava webinar was at the exact same time. The third class was on meditation to handle pain which Stan really needs. There was no class this week and next Wednesday will be the last one. Hopefully Stan can get caught up on the pain lesson.

I have been working on maintaining my inner peace at home despite the loud expressions of frustration and anger that at times spring from the guys I love. I went on strike as Andy’s manager, in that I won’t remind him to get his school work, chores, training, practicing, etc. done. I am done with the conflict: “I know Mom!” spoken quite loudly and then still not getting anything done. At first he begged me to not go on strike. He said, “I like you telling me what to do.” I said, “I am not going to college with you.” Stan has really stepped up his involvement in managing Andy which is awesome.

I discoverd a new mindfullness tracker called Spire.

Spire on it’s charging pad. The smooth stone sensor goes inside your pant waist or center of bra for women.

It measures breaths per minute and can tell if you are calm, tense, concentrating, active, or sedentary. I set mine to vibrate and notify my phone only when I am tense, because I am usually a calm person. it is interesting to see what causes me to be tense. Spire also has guided breathing meditations including one called clinical strength for pain and that has helped Stan a few times already. It is also water proof so I can use it during water aerobics.

I wake up early in the morning because I love the peaceful time before anyone else is up. My alarm goes off at 4:45 AM and our local public radio station comes on with 15 minutes of classical music which is usually wonderfully calming music to wake up to. At 5 AM NPR news comes on. I like to know what is going on in the world, but I do get more tense when I listen to it. I also get more tense when I look at Facebook, probably more so since he who shall not be named became the head of our country.

I now read an emailed news digest called The Skimm.  It’s witty, as well as succinct but detailed if you wish to click links. I find it to be less stress inducing than the news on the radio.  It was through The Skimm that I found out about Spire. You can check out The Skimm here:  https://www.theskimm.com/?r=b25ee41b   I do still read our local newspaper when I have time.

The news is full of terrorism and war, political strife, senseless killings. These things are not happening more in modern times than they did in history. They have always happened. Terrorism is part of war and wars have been fought throughout history over religious differences, political differences and power struggles. John Lennon said, “Imagine all the people living life in peace…imagine all the people sharing all the world” in his famous song Imagine. I will come across as a realist, and even maybe a naysayer because I don’t think this will ever happen. I think our planet will become even more full of war as resources shrink and populations increase.

As Naomi Shibab Nye said in her poem Jerusalem, “There’s a place in my brain where hate won’t grow”. It is through mindfulness and meditation that we can get in touch with that peaceful place within ourselves. And it will be more and more important to be able to go to that peaceful place as life’s hardships bombard our local, national, and international newsfeeds, as well as all of our lives. 

 

Hope, Love, and Connection and lots of good stuff

This was an eventful week: lots of ALS related good stuff, and a family wedding.

ALS good stuff #1: HOPE

Stan and I participated in a webinar from MT Pharma, the manufacturer of the newly approved ALS drug, Radicava, which should be available in August. It has been shown to significantly slow the progression of ALS. ALS patients can sign up for email updates at radicava.com. In July there will be a physician’s form for neurologists to use to enroll their patients. Then MT Pharma will work with patient’s insurance companies. The drug will be an hour long infusion every day for two weeks, then two weeks off, two weeks on, etc. It is exciting and gives hope because it’s the first new drug for ALS in 20 years.

ALS good stuff #2: LOVE 

At our ALS Association of Nevada Support Group meeting on Thursday another ALS patient, Deb, who you may remember had the awesome car wash mitts on her wheelchair foot rests,

talked about her caregiver, who brought a sheepskin blanket and she loved the feel of it and found it very comforting. Her son took her to Build a Bear and she picked a panda with sheepskin-type fur. Then her son decided to make two so another ALS patient could have one. She presented it to me! The adoption certificate says it was built for mom’s friend. 💜 He is so cute and comforting and that was absolutely an act of love.

ALS good stuff #3: HOPE, LOVE, and CONNECTION

On Saturday we had the Reno/Sparks Walk to Defeat ALS and the weather was absolutely perfect: blue skies, no wind, temperatures in the 70s. Caughlin Ranch Elementary School (CRES), where I worked, formed Team Meg. This was another act of love and I appreciate the support so much.

Amanda, CRES mom and Team Captain, with her daughter Capriel and her husband Tony.
Almost all of Team Meg. It was hard to herd everyone in for the photo
With Rene, who now has my job. We worked together for several years and we are neighbors. And yes I brought the panda! My mouth feels better with a napkin in and I don’t care how it looks. Plus I don’t drool. Rene also brought a bunch of bright green ballooons, which I loved.
Marci, another CRES mom, with her youngest.
Holly, one of the Gifted and Talented teachers at CRES
Sandy, a Special Education Resource teacher at CRES 

With Natasha, another Gifted and Talented teacher at CRES. Her daughter and daughter’s boyfriend walked too.

With April, an Autism Strategies teacher at CRES. I was writing a note to April, not conversing with the panda!

Here you can see the sign that the panda was wearing: Ride to Defeat ALS, Never Give Up

April and Laura. I gave Laura my camera to be the official Team Meg photographer. Thanks also to Stan who took the pre-walk photos.

Mark, the CRES lunch manager with his daughter, who I put in charge of the panda during the walk. 

Andy, former CRES student; Afek, current CRES student; and Shefer, former CRES student

It was so nice to see so many people I used to work with and around and to meet their kids too. There were also other staff members and parents who contributed but did not walk. Thank you CRES community – you are the best.

Stan’s cousin Lisa also came out to support my walk, although she has her own health issues that make walking diffucult.

I met some other ALS patients during the walk. Linda and Andy are my new friends. Andy has ALS.

I talked with other ALS patients and family members, some that I had met through the support group, and some that I was able to tell about the support group. This included one mom in a wheelchair who spoke only a little English. When I heard her son translate what I wrote into Spanish for her I began writing in Spanish, with a little help from her son. I was able to tell them about the support group too and the son put the information in his phone.

The entire walk raised over $25,000. Truly a morning of love, connection, and hope for what that money can do to defeat ALS. You can still donate to Team Meg at http://web.alsa.org/site/TR/Walks/Nevada?team_id=359152&pg=team&fr_id=12347

Other good stuff: Love (Family Wedding)

We went home from the walk and got ready to go to a 4 pm wedding in Graeagle, California (about an hour and a half drive). Lisa rode up with us. The groom, Clint, is Lisa’s step brother. 

Uncle Keith and Gloria, the stepfather and mother of the groom
Stan and Lisa heading for their seats, happy to be able to drink beer during the ceremony.
The best man is Vince, the brother of the groom.
Clint and Ashlee Jade with the Presbytarian minister from the Carson City church Clint’s family belongs to.
Andy and Stan during the photos after the wedding
The newlyweds, Clint and Ashlee Jade Treadway
Clint’s dance with his mother, Gloria
Lisa with her dad, Stan’s Uncle Keith

Cornhole fun and practice for the National YFALS Corntoss Challenge to END ALS on June 4 to raise money for ALS TDI. Stan and Andy are a team, and they don’t want mom on their team. I had fun but I couldn’t even hit the board! Please consider a donation to Stan and Andy’s team for the Young Faces of ALS
http://yfals.als.net/page.aspx?t=2413

It was a fun and beautiful wedding with connections with family we don’t see often enough. I also got to know Gloria’s sister-in-law who is a physical therapist who has worked with ALS patients. We will keep in touch.

We stayed at the Chalet View Lodge in Portola so we wouldn’t have a long drive after the wedding. It was a lovely resort and there were a couple of bonuses included: more corntoss practice before breakfast and we ran into an old friend.

With Bill Erlach, who was 10 when I first came to Reno and stayed with his family.

Bill Erlach and his wife Alexis were staying at the resort with a group of Bill’s high school friends on an annual weekend event where they go to a different Sierra Resort each year. They were enjoying golf and bicycling. I love running into old friends. I shared with Bill that I remember going on a hike with him and his dog Remington, when he was 10. They lived south of Rattlesnake Mountain at the time and we hiked through fields towards Rattlesnake (an area that is all developed now).

It was truly a full week of Love, Hope, and Connection.

Cinco de Mayo and Icky Camping and the Week that got Ickier

Well, Stan’s birthday party wasn’t enough partying for me, so my friend Alice and I hosted one of our girlfriend lunches on Cinco de Mayo at Murrietas Mexican Restaurant. It was a fun gathering, as usual.

I sat at the head of this long table so there were lots of gals I didn’t get to talk with.  Maybe next time!

    We had about 20 gals, our biggest group so far. Each person got a necklace with a pepper on it and a clip-on flower for their hair, and also a list of trickster Spanish words. They had to guess the meaning of each one and then we passed the answer key around so everyone could see how they did. It was fun. Everyone filled out a little piece of paper with their name, email address and their text number. Then we had a drawing for our door prize, which was a succulent planter this time. Catherine won.

    Catherine, the big winner, Alice, and me
    I had a nice visit with Judy, who brought my mantra along on her trek of the Camino de Santiago. We are showing our matching mala bracelets.
    Judy also brought along her mom visiting from Chico, California

    Continuing around the table

    I was the co-host and I was leaving to go camping in a few hours. Being so busy getting ready for camping, I came to the lunch without my food, phone, or camera. Luckily others did have phones. Thanks to Judy and Alice and Catherine for the photos.

    We had great service at Murrietas, but it being Cinco de Mayo, they were very busy. When I looked at the time it was 1:30. Half of our group hadn’t been served yet, but I realized I better get going since I had to eat at home and finish getting ready to leave when Andy got home from school. So we quickly did the door prize drawing and I said my goodbyes around the table.

    I went home and ate as quickly as I could (gravity feed can’t be sped up much) then I finished packing. Stan had left earlier in the day in the motor home to secure a camping spot and meet our friends Ernie and Kori. Andy packed quickly when he got home from school and we hit the road, towing two dirt bikes in the trailer. Andy did an excellent job doing all the driving, which left me to experiment with my camera.

    Storm clouds over Fairview Peak on the way to camping

    We pulled into the campsite at Berlin-Ichthyosaur State Park (Icky State Park for short) at about 6:30. Our friends Catherine and Brian were about a half hour after us.

    We had a nice campsite

    Friday night there was a nice sunset.

    Stan and I both sleep with bipaps. Our motor home has an inverter so we can run our bipaps off the battery. In the middle of the night I woke up because my bipap was turning on and off. I woke Stan and he asked if I would go turn off the inverter. So I had to find my reading glasses and I used my cell phone for light. Then I went back to bed and the hot water heater came on, so I got up to turn that off. I did get back to sleep but it wasn’t the best night’s rest.

    On Saturday, I hiked one third of a mile to the fossil tour, while the rest of the group went on a dirt bike ride (4 of them), with Catherine and Brian in their side by side Polaris.

    The giant mural of the Ichthyosaur dinosaur. They actually have found remains of some a lot bigger than this in other parts of the world.
    It was a great tour of the archeological dig which is now in a shelter. The ranger was quite knowledgeable about Ichthyosaurs and he was a great storyteller and a wealth of information.

    The sign to make sure everyone knows how to pronounce the Icky’s full name

    After the tour I hiked back to the motor home, taking some photos along the way.

     

    I am an introvert and I value time alone for energy renewal. However, it was a little long to be alone. I was wishing I was able to ride a dirt bike, or that we had a Polaris so that I could go on group adventures too. The others got back from their tour and ate lunch. Then Stan went to work on the batteries, which had dried out over the winter. In the meantime, I came up with a family activity. When I got my new camera I gave my old one to Andy. I thought it would be fun to go down to the ruins of Berlin and take some photos and have Stan critique them (he has a lot of photography experience). So once the batteries were on the mend we took our cameras and headed down.

    The old mill

    Inside the old mill.

    Andy looking in the window of one the old buildings to take a picture.

    The above two are my favorites. Andy climbed all the way up to the mine entrance and he got a nice photo of three deer.  It is nice that Andy has a photographer’s eye and that he enjoys it, so that is something we can share. 

    By dinner time I was feeling sad again, yes overtired again. I was grieving my illness again, I was feeling as though I was going to be left alone while everyone else went on adventures on every camping trip.  I was eating inside and being consoled by Stan, Andy and Kori. I finally was ready to go outside when it was dark and the fire was nice and warm.

    Andy with a giant marshmallow with chocolate already inside

    Brian across the fire
    Ernie, Kori, and Catherine

    We retired when it became very rainy. A big thunderstorm came through overnight.

    Sunday morning was cold but the rain was gone. We had a reservation to take a mine tour at 10 A.M. Our friends all decided they would rather get home earlier, but Stan and Andy and I were ready to check it out,  so we did.

    Andy posing at the Diana Mine entrance
    I overcame my claustrophobia with a little help from Xanax, which I take because of ALS anxiety
    As far as we could go
    The light at the end if the tunnel. It was interesting to imagine working in those conditions.

    After the mine tour, we packed up and drove to Middlegate for a late lunch. I rode with Stan in the motor home to give Andy practice driving alone on the way home. Again he did great.

    During the week we were preparing for the ALS Association’s ALS Advocacy Conference in Washington, D.C.  We were scheduled to fly on Mother’s Day and attend the conference Sunday night and Monday, then meet with our legislators on Tuesday, then fly home Tuesday night.

    I went out and got some comfy shoes, since the trip would involve lots of walking. Stan’s feet were very sore, so we got him new shoes and sandals too. We watched a webinar to get us ready for the conference. I prepared some photos and text to help me tell my story.

    On Friday Stan’s pain had increased so he decided that he would bring his wheelchair on the trip, because we knew there would be a lot of walking in airports and in D.C.

    On Saturday morning Stan’s pain was so high that we took him to the Emergency Room. It is a good thing we did because he was in no shape to travel. He had swelling and infection and unsafe levels of some important blood markers.  They ended up admitting him, so I cancelled the trip.

    By Saturday afternoon, he was settled in his hospital room and I was able to go to Andy’s Reno Philharmonic Youth Orchestras concert. I was late, but his orchestra performed second and I got there just in time for his performance. He played well and the orchestra was fantastic.

    The day before Mothers Day with my son Andy

    As of this writing Stan is still in the hospital and we don’t have all the answers yet, but it is confirmed that he has a deep vein thrombosis (blood clot) in his leg. It was definitely the right decision to cancel flying to D.C. because flying puts more risk on blood clots. He is in good hands and I know they will get him back home as quickly as possible.