Cubs win the World Series and then it’s time for a change

Photo credit Andy Macdonald, Graphic Enhancement Credit Judy Harrison

I grabbed the moon 3 years ago and the Cubs won the World Series in November 2016. I have been a Cubs fan since my grandmother took me to games on the El when I was little. I remember when I was about 8 she asked me to go get her a beer. The guy at the beer booth said, “I can’t sell it to you” as he laughed. I went back and told Grandma what he said and she said, “That’s ridiculous! Of course it’s not for you.” Then there were the times we would go on Ladies Day where women and girls over the age of 12 got in free. I was with one of my sisters and we were younger than 12, but Gram pushed us under the turnstile saying, “they are over 12”. I wasn’t comfortable with this but that was life with Gram!

Then in high school I had a summer job as an Andy Frain Usher and worked day games at Wrigley (before lights) and night White Sox games at Comisky Park. At White Sox games they made the female ushers leave at the 7th inning stretch because of safety concerns. The day games at Wrigley were much more fun and I got to see the whole game.

I do credit Gram with giving me the love of baseball and she also taught me to knit and I also love knitting. So when I saw a Facebook post about people writing the names of loved ones who didn’t live to see the Cubs go all the way in chalk on the walls of Wrigley Field, I asked my brother if he could go put Gram’s name on the wall. He did, on the way to a party to watch the 7th game.

He said the Cubs got their first inning home run while he was writing it – Gram would have been so happy.

He stood on a bucket to write it in a blank spot.

Thanks Pete! It looks good. And the Cubs finally went all the way! The Eddie Vedder song “Someday we’ll go all the way ” has been a battle hymn for the Cubs and it’s now obsolete. Someday came!

And my life with ALS continues. This week I started wearing my Precision Medicine Program motion sensors. It’s a little scary to know that I may notice the progression of my disease more quickly now that data will be recorded online once a month.

A wrist sensor
An ankle sensor 

I will wear these once a month for 6 or 7 days. It is nice to be contributing to science in a small way – wearing these ugly sensors for one fourth of each month. On the first, third, and fifth days of wearing them each month I have to do prescribed exercises at certain times of day.

On November 6 at 2 AM, most of the United States will turn the clocks back one hour to end daylight savings time. With this time change, I am finding myself in the midst of a life changing event – after one more week of work, I will be going on medical leave while I apply for disability retirement. The reasons are two-fold: my last illness made me realize a job around sick kids is probably not the best place for me. Also, it is really hard to be a school secretary and not use the phone. I had hoped to work 1o more years, but we don’t get to plan everything. I have loved my job and I leave with bittersweet feelings, but it’s time for a change.

People are still contributing to my #whatwouldyougive campaign to support ALS TDI. Thank you!

#whatwouldyougive

 

Purple Rain

I never meant to cause you any sorrow
I never meant to cause you any pain
I only wanted to one time to see you laughing
I only wanted to see you
Laughing in the purple rain

Purple rain, purple rain
Purple rain, purple rain
Purple rain, purple rain
I only wanted to see you
Bathing in the purple rain

Purple Rain by Prince and the Revolution 

This week I realized that I can’t sing in the car anymore. 😓 When driving alone, or even with my husband or son, I loved to sing along when a song like Purple Rain, or anything by U2 or Elton John or Bruce Springsteen or many of the songs on Sirius Classic Vinyl, Classic Rewind, or Bridge that Stan and I both enjoy came on, and even some of Andy’s POP favorites. I can mouth the words and sing in my head and tap my feet and hands, but gone is the joy of belting out a song from my memory bank.

For over a week I have been mouthing the Pledge of Allegiance at work. There are usually kids in the office getting late slips and they do look around at the adults to see if they are participating.

We got an email from Jennifer McErlain, Development Manager, ALS Therapy Development Institute (ALS TDI) on Thursday inviting us to two ALS fundraisers on short notice. The first was Corey’s Crusade in the Purple Rain on Saturday at the Claremont Country Club in Oakland. We were able to make arrangements for Andy to stay with my dad and step mom and got a hotel reservation. The invitation said please wear purple. I had purple in my closet but had to get Stan outfitted at Macy’s Saturday morning. Oakland is about a 4 hour drive from Reno and I was singing in my head the whole way.

There was a beautiful sunset over San Francisco from our hotel
The beautiful Claremont Country Club
Purple luminarias on the entrance steps

Corey Reich got ALS at age 21. He is now 30. From the invitation, Corey’s Crusade Update: “He is in a wheelchair, but he is still talking, eating, drinking, coaching the Piedmont High School tennis teams, doing Pilates, traveling, and attending many Oakland A’s baseball games. He is still his positive, funny (or so he thinks), normal self. His positive outlook and ability to never complain is amazing.

For those who haven’t seen Corey in a while, he has progressed. But his quality of life is still relatively high. We’re hoping to find something to slow and stop the progression of ALS before that is no longer the case.

We continue to work with the ALS Therapy Development Institute to defeat ALS. We’re excited to announce that ALS TDI completed manufacturing the drug AT- 1501 (also known as anti CD-40L) and is ready to take into drug trials once the funding is available. ALS TDI also completed enrollment of 300 patients in its Precision Medicine Program and launched a second phase to enroll hundreds of additional patients.”

Corey with his mother, sister, and father listening to Dr. Steve Perrin speak

The Reich family were all incredibly kind and friendly, thanking us for driving all the way from Reno.

At the bottom of Jennifer’s email was a link to ALS TDI’S Precision Medicine Program, where they enroll ALS patients and collect data to be able to tailor medicines to precisely help each person’s unique manifestation of ALS. The disease is so variable in where it starts, what age it starts, and how fast it progresses. I enrolled in the program and I answered the first of many questionnaires and recorded my voice saying, “I owe you a yo yo today” 5 times. I will be able to record it once a month, although even my first recording was pretty garbled. I will also send blood samples to ALS TDI, and get wrist and ankle movement monitors to assess my disease progression.

At the Purple Rain party we met Jennifer McErlain, who introduced us to Dr Steve Perrin, the CEO of ALS TDI. We were able to talk with him during cocktails and then sat with him during dinner. He was a wealth of knowledge about ALS and very interesting and personable.Some of the interesting things he said about this incredibly variable disease include:

  • ALS patients are often smart people with Type A personalities 
  • A handful of baseball players and 38 NFL players have gotten ALS, but  no NBA or NHL.
  • Many patients were triathletes.
  • Military records show that combat pilots have higher rates of ALS than non combat pilots, all the way back to World War Two.
Stan and I laughing in the Purple Rain

This fundraiser was about connections and hope. Next weekend we will go to the ALS TDI annual fundraiser in Boston. It is nice that we now know some people who will be there – the whole Reich family and Jennifer and Steve. Sarah Coglianese will be there too, although she wasn’t at the Purple Rain party due to illness. The Boston fundraiser will be about love, connection, and hope because we will stay with my aunt and uncle and spend time with my cousin and her husband and baby, and we will visit my godmother and be able to share love and hugs.

We did add love and more connection to our Oakland overnight by meeting our very good friends Erika and Paul Peters for lunch in Roseville on the way home.

And here’s a Facebook memory I shared last week:

Three years ago I grabbed the moon. Go Cubs! Beat LA!

And they did it! My favorite team from childhood is in the World Series! Go Cubs! Beat Cleveland!

Mik-key button – now I can swim

The Thursday after our return from Hawaii, I was able to have my g tube  (PEG tube) replaced with a Mik-key gastronomy feeding tube. I have learned to take the whole day off from work when I have medical procedures because I don’t know how I will feel after . I had a long to do list for my day at home.

My appointment was 9 am. We brought the Mik-key tube that our infusion company sent.

First they removed the saline from my g tube balloon.

And then it pulled right out.

This photo shows my g tube with the deflated balloon. The Mik-key tube was inserted and inflated with saline. I had some pain but figured it would go away. The doctor said he was on the Big Island last week too, so he could have done it there, ha! We went home and I ate my mid morning snack. Then I threw up everything in my stomach. The pain around the tube was pretty intense. The tube was so short that it was squeezing my stomach muscles.

This blurry picture shows how tight my Mik-key tube was. After many phone calls by my husband we arranged to pick up a longer Mik-key tube from the infusion company and go back to the doctor so they could replace it. Luckily they had the correct size in stock.

Stan going into Option Care to get my new Mik-key tube.

Hopefully this one will fit better.

Much better and no pain. Another doctor put this one in and he said, “we’ll recycle the water from the old balloon since we live in the desert”. Every 5 ml counts.

My new tube system has a long tube that I attach to the port in my abdomen. The tube has its own built in kinking system to stop the flow. So no more hair ties needed. I will need to have it replaced approximately every 3 months.

I did not get all the things done on my to do list that day. But now I can get back in the water so it was worth it.

Hawaiian tiny bubbles

Tiny bubbles (tiny bubbles)
In the wine (in the wine)
Make me happy (make me happy)
Make me feel fine (make me feel fine)

Tiny bubbles (tiny bubbles)
Make me warm all over
With a feeling that I’m gonna
Love you till the end of time

So here’s to the golden moon
And here’s to the silver sea
And mostly here’s a toast
To you and me

So here’s to the ginger lei
I give to you today
And here’s a kiss
That will not fade away

Tiny Bubbles by Don Ho

My days in Hawaii began with breakfast on the Lanai. My swallowing has gotten so bad that I can’t handle all the saliva I produce by swallowing. I carry pretty cloth napkins around with me to wipe my drools, but at times it is excessive. My doctor at UCSF prescribed Robinul three times a day as needed for excessive saliva. The pharmacist warned me that it can cause uncomfortably dry mouth so try half a pill. I found that a quarter pill two to three times a day is enough. It works – no more excess saliva but the saliva I have is thick so I get bubbles in my mouth. It isn’t comfortable but the lesser of two evils. And some irony in the fact that I now take a drug to cause dry mouth when that was one of my biggest early symptoms.

We got to hang with another bubble boy – Stan and I got to babysit Ollie while Jonika and Chris took Andy diving with manta rays.

He makes the cutest tiny bubbles in his mouth after he eats. And boy does he eat! I think we were with him during a growth spurt. He was sweet with us and not fussy as long as we kept him fed. But he sure was glad to see mom, and she said she missed him too.

I wasn’t able to snorkel or swim because of my g tube but I meditated under the beach umbrella or went for a walk while they snorkled.

On Friday we were able to do a Mauna Kea Summit tour. We met the tour guide on the saddle road. It turned out to be a private tour so he could customize it for us. When he heard I was a geologist and Stan was into astronomy, he was thrilled. He also was a former home health nurse so he was patient with my tube feeds. He first took us to some cool volcanic features on Mauna Lani at 8000 feet to acclimate.

Then we went to the visitor center on Mauna Kea at 9200 feet and had lunch. And then we proceeded to the top. Our guide shared the cultural significance of the mountain to native Hawaiians and much of Polynesia. And how you don’t go to the top without a purpose. It was the perfect mix of geology, astronomy, and culture. 

At the top we got to go inside one of the Keck observatories – Stan was thrilled. We were lucky enough to be there when they moved 2 axes of the telescope and the dome in the opposite direction – enough to make you dizzy!

It was raining at the top so we missed the awesome views but it still was a day to remember.

Followed by the last sunset at our condo

And a wonderful final dinner with Jonika, Chris, and Ollie at Rays on the Bay, overlooking the spot where the kids did the manta ray dive. So much laughter, so much love, connection, and hope. They want us to move to the Big Island.

On Saturday we packed up and checked out of our condo, then went with Jonika and Ollie to watch some of the Ironman World Championship. It was great to spend the day with them, and Chris met us for lunch.

 We saw the first pro finish and it was interesting to see the traditional Hawaiian ceremony for the winner with tiki torches and a lei and a palm frond crown. The winner, the defending champion, said it was his worst day and his best day all at once.

Then we got one last beach visit. Andy got to snorkel one last time.

It was a beautiful way to end our visit.

Love, connection, and hope. What it’s all about, even with bubbles!

And then it all ended with a delayed red eye flight back to the mainland, so we missed our flight to Reno. We were flying on miles (free flights) so we were low priority for rebooking. I only had brought enough cans of food for the morning, thinking I would be home before 10 am. We were wait listed for a flight at 11, along with 12 other people from our Kona flight. They rebooked us through San Jose, which would get us home at 7:30 PM. When the 11:00 flight was boarded they had one seat remaining, so my boys let me go home to get food. They had the torture of flying all night and all day with not enough sleep. We will all have to block out the last day and think of tiny bubbles, being warm all over, and the silver sea, and ginger leis, and our Big Island relatives we will love until the end of time.

Ch-ch-ch-ch-Changes

Ch-ch-ch-ch-Changes (Turn and face the strange)
Turn and face the strain
Ch-ch-Changes
Don’t have to be a richer man
Ch-ch-ch-ch-Changes
Ch-ch-Changes (Turn and face the strange)
Don’t want to be a better man
Time may change me
But I can’t trace time

I watch the ripples change their size
But never leave the stream
Of warm impermanence and
So the days float through my eyes
But the days still seem the same

From David Bowie “Changes”

Turn and face the strange, turn and face the strain, Ch-ch-ch-ch-Changes. That has been my life with ALS and the life of everyone with ALS. It is a progressive neurodegenerative disease meaning that it will progress, although everyone’s rate of progression is different. 

I am so inspired by new online friends from around the world with ALS who I have met through social media. They are facing the strain and strange and Ch-ch-ch-ch-Changes and still put on a happy face for the world to see.

Like my friend Lana in Amman, Jordan who writes a blog as loofyonline. She wrote about wheelchair inaccessibility in her country that makes it really hard for her to leave the house – no sidewalks, no wheelchair accessible public restrooms, no elevators big enough for a wheelchair. It takes an incredible amount of planning to go anywhere. Her words:

So when I finally do find somewhere that ticks all the boxes and you see me out and about, I always have the biggest smile on my face. A smile that shines to deflect the looks of pity and the negativity. A smile that overcomes my inability to speak and says loud and clear “I am okay! I am so happy and I am out of the house!”

And my friend Eryn in Orange County, California who wrote an essay for ALS Worldwide. Her words:

Today, I struggle with mundane daily tasks such as getting dressed and brushing my hair. I now have to ask for help to get off of the floor after playing with my children and I struggle to help them get dressed or change a diaper. Often I have found myself waiting in line behind my children to get help dressing for the day. I can’t express how hard it is to stand there half naked and realize that in many ways I am as helpless as a 3-year-old.

As a mother I have been put on the bench so to speak, as I have been reduced to observe more than interact with my beautiful children. ALS affects me every minute of every day. I can’t run away from it even when I sleep. It affects me moving in bed, needing help to walk, and every morning I have to fight to get up. I struggle lifting my arm to wave goodbye or to say hello. How am I supposed to raise my children and be a good wife if I’m not able to be there for them? My life and independence has been stolen from me.

Nonetheless, I get up every morning for my family. I fight every day to stay strong and to get the most out every day. I strive to stay happy and to appreciate every kind word, every kind deed, and to quite literally smell the roses. I get up every day to represent all those who can no longer stand, to be the voice for those who no longer have one, and to remind myself there is more than myself affected by this devastating disease. I can only hope that my contributions can help promote awareness and some day we can stop and prevent this now more than ever indiscriminate disease from stealing the lives of ourselves and loved ones.

Appreciate every moment.

This week I had some challenges appreciating every moment. Last weekend my feeding tube cap failed.

I was worried that if I pulled it out again it would break off and I wouldn’t be able to close my tube. I was lucky to marry an engineer because Stan is very good at making things work. We devised a system where I would kink the tube, and wrap it with a colorful hair tie (figured that out after losing three brown rubber bands), then use pliers to pop the cap off the tube. This worked for 5 days and then we got a Lopez valve from the infusion company.

This seemed to work well but there were two drawbacks. It is much bulkier under my clothes and we noticed that formula was getting stuck in the red med port and there was no easy way to clean it out. Engineer Stan used a combination of q-tip cotton and plastic wrap to make a seal that hopefully would keep liquid out. This worked for less than 24 hours. Then my hero engineer went out to his lathe in the garage and made me a cap for the tube. I will still have to kink it to stop the flow but it is even less bulky than what I started out with.

All three cap systems in one photo. My favorite one is my new black one made by my true love engineer!

This week I also learned that it was too good to be true that I could always throw up through my tube. I caught the nasty gastrointestinal sickness that is spreading like wildfire among students and staff at my work. My first barf Friday morning was through my tube and I thought no problem I got this. Later that morning I had tried to throw up through my tube but it came up through my throat too. My throat muscles don’t work as part of the peristaltic pump esophagus anymore, so I end up with acidic stomach juices stuck around my vocal chords. Very small sips of gatorade with my chin to my chest to swallow helped clear the first one. I was starting to feel better and we were packing up to leave for the weekend when an explosive projectile vomit took me by surprise. Luckily I was holding some cloth napkins and I made it to the sink without too much mess. We cancelled our weekend trip. Later that evening I threw up through my throat again and this time my throat was burning and I couldn’t talk at all. It took a few sessions with my cough assist machine to get me to expel (throw up) the stuff that was stuck in there. It wasn’t pleasant but I love my cough assist machine!

So I have learned twice now that medical issues are a bigger deal when you have ALS – when it took me a long time to recover from surgery and when I caught the gastrointestinal bug that was going around.

But I am strong and I am inspired by strong and amazing women and men with ALS who are focusing on the positive and finding reasons to smile even with this devastating disease.

I watch the ripples change their size
But never leave the stream
Of warm impermanence and
So the days float through my eyes
But the days still seem the same

The ripples in my life have sometimes been tsunami sized  (death of loved ones, premature baby, husband’s illnesses, ALS diagnosis) but it’s true that no matter how big they become they are still part of the warm impermanence of my life. And no matter what this disease does to my body, I am still Meg inside, and am lucky to be able to communicate online and with voice to text on my phone and iPad. My iPad program allows me to use different voices and I set one up for Spanish. My son is taking high school Spanish and I am able to quiz him even though I can’t talk, and he reads to me in Spanish. And my wonderful husband continues to be a huge support despite being in a lot of pain himself. These things make me smile through all the Ch-ch-ch-ch-Changes.

A friend’s shared spiritual journey 

El Camino de Santiago is a spiritual 780 km pilgrimage through the basque sections of France and Spain and across all of northern Spain. My friend Judy has been planning to walk the Camino for over a year, and she started on September 2.

She stopped by my work a few weeks ago and brought me a mala bracelet, with meditation beads. 

She has the same mala bracelet and told me she would wear it on the Camino. I was not familiar with mala bracelets but she told me they are similar to rosary beads which I am very familiar with, having been raised Catholic – we even made our own rosaries in kindergarten. I have been meditating for 25 years and meditation beads are a comfortable addition.

Judy asked me to pick out a mantra we could both use. She sent me a website that teaches you how to pick a mantra.  I read through it and realized my mantra has to be my core values: love, connection, and hope. I asked her if that would work for her camino and she thought it would be perfect. She said she would be thinking of me the whole way.

She also told me about a movie called The Way, available on Netflix, that is about the Camino de Santiago. Here is the description from agoodmovietowatch.com:

In “The Way”, an American doctor, Tom (Martin Sheen), travels to Spain to identify the remains of his deceased son (Emilio Estevez, also writer/director) who has died while traveling “El Camino de Santiago”, the famous pilgrimage across Northern Spain. Once there, Tom unexpectedly finds himself inspired to continue his son’s journey, sprinkling his ashes along the lengthy expedition to the Cathedral of Santiago de Compostela in Galicia, home to the shrine of the apostle St. James the Great. Along the way Tom gains several unlikely traveling companions: a Dutchman (Yorick van Wageningen), a Canadian (Deborah Kara Unger) and an Irishman (James Nesbitt), each of whom has his/her own personal reasons for making the pilgrimage, with each adding various degrees of of drama and humor to the proceedings as well. A touching and inspiring film marred a bit by some unnecessarily roughly-hewn characterizations, but overall a pleasant experience with a warm feeling of adventure and camaraderie throughout.

 We enjoyed the movie and got a real sense of the spiritual nature of the Camino. It made me cry to realize that a friend would share her journey with me in such a special way. Here's a Facebook post from her on September 8.

The day after Judy posted that picture I had an early follow up appointment at UCSF due to my cough (and worry about my diaphragm) and continued weight loss. Much to my surprise, my lungs worked fine in the most important tests. It was decided that my cough could be reactive airway or reflux. The doctor prescribed an inhaler and said if that didn’t work I could try Prilosec. The dietician also is looking at my caloric intake and mau increase the calories in my feeds.

It turns out using the inhaler for just a couple days has pretty much eliminated my cough. I am monitoring my weight at home and we will watch it for a couple weeks and if I lose weight I will get a higher calorie formula.

We brought our 15 year old son along to the UCSF appointment and he was mostly bored but he hugged me every time we were alone in the room.

Another highlight of our trip was having dinner with Sarah Coglianese and her family, who graciously invited us into their home. Sarah and I have a lot in common besides having ALS. We both grew up in Oak Park, Illinois and both went to Oak Park and River Forest High School although I graduated 18 years before her, we both did a Wednesday paper route that involved going door to door to collect subscription money, we both love writing, and we both used to love running. 

It was impressive to see their home which was totally remodeled to make it wheelchair accessible. But even better was the conversation with Sarah and Rob and the way Andy got along with 6 year old Scarlett.

I went to high school with Sarah’s aunt, who often posted Sarah’s blogs on Facebook. I avoided reading them until I started having symptoms, and then her blog really helped me.

Even with my nebulous spirituality, it’s interesting to contemplate that Judy’s journey could be influencing my outcome, of course along with all the other prayers and positive thoughts people are sending me. And it all goes along with love, connection, and hope. Thank you.

I’m terrific….other than a touch of ALS

That’s a quote from Jay Fishman, former chairman of the board and former CEO of Travelers Cos. Inc. who was diagnosed with ALS at age 61. He was a well loved leader of his company as well as a leader for ALS patients. My cousin AnnMarie is vice president, Field Management Operations for Travelers in Hartford, Connecticut. She spoke to Jay about my diagnosis and was working with his administrative assistant on setting up a teleconference for Stan and me with him. He was eager to speak eith us.Eight days later she emailed that he died on August 19. 

Just a few weeks before he died he was a big force in the Travelers Championship golf tournament in the Hartford area. He was chairman of the title sponsor company in its 10th year and also co-honorary chairman of the tournament. 

The tournament’s main beneficiary charity was the Hospital for Special Care in New Britain, CT, which cares for about 250 ALS patients. On Friday night of the tournament weekend a fundraising dinner was held for the Bruce Edwards Foundation and raised over $1 million. Bruce Edwards was golfer Tom Watson’s caddie for three decades until he was diagnosed with ALS. 

Watson spoke at the dinner and called Edwards “the Arnold Palmer of caddies”. He spoke of his promise to Edwards, that for the rest of his life he will raise as much money as he can for research for this disease. He said that Edwards lived life to the fullest and there was a lot of love for him.

At the tournament there was a special tent set up for ALS patients, with medical equipment and feeding supplies. AnnMarie said that Jay spent most of his time in the patients tent.

Jay Fishman would only be honorary chairman of the tournament if he could have another ALS patient as co-chair.In the picture he is shown, as AnnMarie speculated, deflecting attention from himself and onto Brian Savo, his co- chair.

I want to share some quotes from Jay Fishman that I find very inspiring:

“That’s leaning in to the disease. Accepting gracefully, yielding gracefully. You can’t fight the disease. You can’t beat it. You don’t win. But what you can do is yield elegantly. Planning for it, thinking it through.”

“You stay engaged or you stay in bed.”

“The hardest thing for me was really internalizing that six months from now I’ll be worse. I will eventually stop breathing. So I am not in denial at all…As it relates to what I can and can’t do, I’m much better taking it one day at a time.”

“This is how my life ends. It is not what my life is or was.”

“If you asked me six months before I had this disease to sum up my life I would tell you that I was one of the luckiest guys in the world. So many good things had happened to me, more than any one person deserves. And honestly, I swear to you it’s true, I feel exactly the same way today.”

That last quote has echoes of the famous lines spoken by Lou Gerhig when saying goodbye to his fans at Yankee Stadium. It was hard for me to understand how someone with ALS could say that. But as I look back over my own life, I see that it has been an incredibly interesting journey. 

I decided to paraphrase Jay so I programmed “I’m doing great…with a touch of ALS ” into my speaking tablet.

Credit for the Jay Fishman quotations: The Hartford Courant 

Thinking about life and death 

I recently read a book about a year in the life of a medieval woman.

It was very interesting to contemplate what life was like for people back then. The woman’s family lived on a feudal lord’s property. Death of babies and children was so commonplace, it was a wonder why some siblings survived and others didn’t. The town shepherd got a splinter from a split rake handle and it got infected and he was dead within a day. Neighbors of the main character’s family had a mother who didn’t speak clearly  “one could never talk to her for no one could understand what she said, only a gobbledy noise came from her” and she just sat idle in their cottage caring for nothing. Her kids were ragamuffins who begged for food from neighbors. I thought, what if she had ALS? Their neighbors looked upon her family with disdain.

This book made me think about a few different things. One, that I am lucky with technology helping me communicate, suction stuff I can’t swallow , and helping me do therapies to improve my life quality. Also with antibiotics, anti-inflammatories, ALS slowing, and other drugs greatly increasing my quality of life and potentially prolonging my life. Let alone a feeding tube and formula giving me complete nutrition. These are things that weren’t available for most of history. So now we are able to live longer even when sick.

With so many babies and children dying in medieval times, it made me wonder, what is life? My own daughter Anna only lived a moment after birth. What did her life mean?

My older brother died in an accident when he was 19. Why did he get less than two decades when I have had more than five and a half?

These questions can’t be answered. Some religious faiths may give people guidance on these questions, but for people like me with nebulous spirituality, there will be no clarity.

And now we can make decisions about our own deaths. When Stan and I did estate planning about 12 years ago, we both decided our end of life plan would be “no tubes”, imagining us old like our grandparents and intubation prolonging a fairly low quality life. Home health gave me a Physicians Order for Life-Sustaining Treatment form.

My POLST form folded to protect personal information

Obviously I need to update my Living Will because I can still have a high quality life with a feeding tube. I assumed I would be like 95% of ALS patients, and option to not have a tracheotomy to prolong my life. My husband and I had a candid discussion with my nurse practitioner about the implications of signing the form. If I say no endotracheal intubation,  she suggested I might want to look into hospice because I am already having breathing problems and diaphragm spasms. She has a long history of hospital work and was able to explain how patients are weaned off endotracheal intubation – it is turned off to see if the patient can breathe on their own. She worried that I would never be able to wean off it. And it is extremely uncomfortable for conscious patients.

I know that ALS patients are usually able to make the decision to go to a full tracheotomy without having to go through the endotracheal intubation process. I have been worried about the amount of care that will be required to keep me alive in the later stages of my disease. I don’t want to burn through our savings paying for 24 hours care for several years, nor do I want to be a burden to my caregivets.

Some states, including California and Oregon  (I have a sister in each state) have right to die laws. I heard a beautiful story about a woman with ALS in Ojai, California who hosted a 4 day party, culminating with her physician assisted death at sunset on the 4th night.

There are so many profound decisions to be made as humans today. Perhaps it would be easier to live with death much more common as it was in medieval times. You wouldn’t be faced with  moral decisions on the end of life as we are. I have not yet decided and can now see what a difficult decision it will be.

It is sobering to be thinking about these things only 2 months since diagnosis.

Eating without tasting

You got to cry without weeping
Talk without speaking
Scream without raising your voice

Lyrics from U2 Running to Stand Still

I had a follow-up appointment with my local neurologist on July 21, 3 weeks after diagnosis. He gave me a referral to a gastroentetologist for a feeding tube consultation. It took a while and several phone calls before I finally got an appointment for Aug 30.

School started August 8 and things were in full swing from the get go. By the second week of school I had developed a little cough. When I noticed a coworker coughing the same way I decided to go to my family practice nurse practitioner to nip it in the bud. This same week my cough assist machine broke and I couldn’t do the therapy to break up mucous in my lungs. My nurse practitioner is so awesome. She prescribed a liquid z-pack for my cough, she diagnosed thrush (my mouth has been raw and hurting since December but she was the first medical practitioner to look closely at my tongue) and prescribed an antifungal swish to use 4 times a day. She gave me a Prevnar shot for pneumonia. I told her my husband was going to call Digestive Health to try to get me in sooner because I have been aspirating water and eating more slowly and had lost 5 pounds. She asked if I wanted her to call them. I said that would be great. She would call my husband the next day with her results. She couldn’t make any progress with Digestive Health but she lined me up with a general surgeon. I got a call from my husband asking me to meet him for a consultation  appointment at noon. Before we left that appointment we had surgery scheduled for Tuesday 9 am.

At my preoperative appointment on Monday a nurse told me all about g tube surgery and use.

I had had laparoscopic surgery twice before.so I was not very worried about the surgery.


Here’s a post op pic

And the post op belly

It is freaky to me how quickly I was unable to eat or drink enough. I am lucky to have gotten my g tube placed as quickly as I did. The day after surgery I was surprised by the amount of pain I had. This surgery went through my stomach wall. The other two laproscopic surgeries I had were on reproductive parts, and I had little to no pain after.

A dietician from the home infusion company came out to meet with us early Wednesday. She left some samples of Boost Compact, which is complete nutrition in 4 ounces. I am supposed to have 5 bottles a day, with 60 ml of water before and after each bottle.

A home health nurse came over that same morning. She had a lot of paperwork and took my vitals and taught me how to get in and out of bed while minimizing pain. She also redressed my wound and discussed Do Not Resuscitate papers I will carry with me since I do not want to have a tracheotomy.

When I was a teenager I didn’t particularly like eating. I remember discussing food with a lawyer I worked for. He said how much he loved food and he wanted to eat all the time. And I said, “not me, if I could take a pill with complete nutrition I would.”

When I met my husband Stan he introduced me to good food. He is a very good cook and enjoys fine restaurants. I grew to love delicious food too. I am going to miss enjoying meals with family and friends. I hope to still be able to taste food and at least at home, do my tube feedings at the dinner table. I will enjoy a couple breaks a day at work to sit in my car and listen to music.

With a couple days of tube feeding under my belt I realize I will be living with the smell of stomach contents on my hands and clothes until I find a waterproof drip catching system when I open the tube. Barf is the word that comes to mind to describe the smell. I think I will figure out a new system quickly. Editor’s note: I quickly learned to pinch the tube and have a small glass to catch any overflow. I have Wet Wipes in my feeding kit now too.

Life is full of ironies. When Andy was a baby we fought against getting him a g tube because we had met other older preemies who were having major complications from g tube surgery. And almost 16 years later, here I am with a g tube.

I can get used to this. I was able to do a tube feed during family dinner at a restaurant and finished eating at the same time as everyone else . I was able to taste little samples that others shared, of their pasta dishes and fish.

A different home health nurse came by on Friday. He was a great resource on tube feeding and told me some tricks and explained how to put crushed meds through the tube and how to watch for dehydration. We also got a delivery of two weeks of formula for me. My formula is called Jevity 1.2 cal high protein nutrition with fiber. It is not sold over the counter.

Since Thursday I have been having diaphragm spasms causing an annoying cough. The home health nurse Tim said my diaphragm has to get used to the tube being there. I have been using my suction machine this weekend because of excess saliva and pleghm in my throat that I can’t clear on my own.

I will keep on going even if I’m running to stand still.

Please consider contributing to my #whatwouldyougive campaign which runs through 8/31/16. Thanks to my many donors who have helped me raise more money than I imagined possible when I started the campaign for research to end ALS almost a month ago. #whatwouldyougive


Assistive Technology for Loss of Speech

The first assistive technology I tried was a Boogie Board

It is a cool LCD writing board where you write with a stylus and erase with the push of a button, which makes it more convenient than pen and paper. Sometimes other people get a hold of it.

The next assistive technology I used was an Android app on my phone called Speech Assistant. It has a wide variety of downloadable Google voices and customizable categories. I still use this because sometimes all I have with me is my phone.

I thought that was really cool, and then I found something cooler!

I work as an elementary school administrative secretary and school districts are very adept at complying with the Americans with Disabilities Act  (ADA) because of working with disabled students. I had to fill out some paperwork and get a letter from UCSF about my diagnosis. I then met with my principal, the district Risk Manager, and the head of labor relations about what I qualify for under ADA. They arranged for me to meet with an Assistive Technology Specialist for the school district.

Robbin Dunn met me at my office and she was wonderful.

She showed me an iPad program for text to speech that blows away the app on my phone. It’s called ProLoquo4Text and has unlimited phrases and unlimited accounts 

I currently have a loaner iPad from Robbin’s department. I have been able to set up a work account and a home account and even a Spanish speaking account since I have loved speaking Spanish since high school. My only complaint is that the selection of voices is limited. The program was created in the Netherlands and even the so called American voices have an accent.

We had another meeting on Thursday this week with the same group plus Robbin to determine what the District will buy for me. I feel very fortunate to be working at a place where this is available. They are going to buy me an iPad Mini and the ProLoquo4Text program as well as a case and keyboard that I get to choose.

It has been challenging getting used to typing conversations. Often when I am done typing my comment the conversation has moved on to the next subject already. And holding conversation during meals is hard too. I have gotten comments from people such as, “that’s really cool” or “that’s interesting”  I can tell it makes some people very uncomfortable  I am an introvert and usually pretty quiet anyway.

The reflections make it hard to see. It says, “Hi, I’m Meg “.

I had a chance to practice with my iPad last weekend in Las Vegas for my father in law’s 85th birthday – more love and connection even if by artificial voice.

Then I heard about something even cooler. A teacher I work with ran into some guys from a startup in the Bay area called Vocasso. When she heard what they are creating, she put me in touch.

Here is the description from Ryan McVicker:

Vocasso is the human-machine interface that enables seamless integration with the digital world. Our core technology, the Vocasso soundless microphone, not only produces speech for mute Stroke survivors, it enables users to interact with digital devices without making a sound. Simply put on our headset, connect via Bluetooth to a smartphone or PC, and the words you mouth let you soundlessly control all of your digital devices. To find out how this cutting-edge technology will shape the future of communication, visit http://www.vocasso.com.

It will be interesting to see how it will work for ALS patients who have limited use of their mouths to even mouth words. But it sure sounds cool!

Please  consider a donation to my #whatwouldyougive campaign to raise money to end ALS.#whatwouldyougive

Donation accepted through 8/31/16

Thank you to my many many awesome donors!