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

On October 21 we went to Clairmont Country Club in Piedmont, California for the annual Corey’s Crusade fundraiser for ALS TDI. Corey was diagnosed in college. This was his 10th annual party (He is now 31). Every year the party has had a different theme. For this party we could choose a theme for a costume from any of the previous 9 themes.

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

Stan was a Parrot Head for the Margaritaville theme and Andy chose Purple Rain. I was a superhero of sorts, the Beauty who Killed the Beast.

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

It was a great party where we saw friends and met many nice people. And I am sure they raised a lot of money. We stayed in Walnut Creek because we had to be back in Reno for the 1 pm show Beautiful – Carole King the Musical. I did my Radicava infusion and ate my feeding tube breakfast while Stan and Andy went down to the hotel breakfast. Then we packed up quick and hit the road. We made it by 12:55 pm. This was an 85th birthday present for my dad. It was nice to share such a wonderful show with my dad and Anita and Stan and Andy. Even Andy liked the show.

I have now completed over a week of Radicava. The first few nights I felt that I was sleeping better. I have been remembering dreams again. But by the 4th and 5th day I was having runny nose and lots of thin post nasal drip. There was so much I thought it must be an allergic reaction. We notified Searchlight of a possible reaction. But the next day Stan talked to two different pharmacists from Option Care. They said that it is possible to have an initial reaction to port medicine and it would go away with time. They also said see how I feel on the off weeks. So I loaded up on Benadryl and Sudafed, and I am still hoping for a freeze. I am watching those low overnight forecasts. Come on cold weather!

I can’t swim until a month after my port surgery, which will  be November 11. I can’t wait to get back in the pool. I feel better when I am doing all those range of motion exercises. I will have to start doing them at home for the next two weeks. For the next round of Radicava we have a little more flexibility. It will be ten of 14 days so we can do 5 days on then take the needle out and I can have two days to swim and shower without plastic wrap, and then do the second 5 days. We looked at the November calendar and maximized the days I could swim. I also will explore ways to cover the needle so I can do aqua fitness and stay in shallow water.

My friend Erika came up from Eldorado Hills, California for a quick visit. She learned how to do my infusion. I am able to do the infusion myself now but someday I may need help.

I am so blessed to have wonderful friends and Erika is the best of the best!

Milestones and Miles End

June 29, 2017

One year ago today, I was diagnosed with ALS (my D Day). This photo was taken in Half Moon Bay where we went after the dismal diagnosis.

Based on my mom’s experience, there is no way I expected to still be so active. I feel truly blessed in that respect. I am able to care for myself. So today is an ALS milestone. I have written before about how important milestones are to an ALS patient, for an ALS TDI Mother’s Day email:

On being a mother
by Meg Macdonald

                                                                                

first became a mom in 1999, with a 23-week micro preemie daughter who did not survive.  In 2000, our son Andy was born a micro preemie at 25 weeks 6 days and 1 pound, 13 ounces. He did survive, and we are really blessed that he did.

As a mom, there are milestones you anticipate such as first steps, first words, first day of kindergarten, finding musical interests, sports interests, and other things your child will be interested in. We did not know if our son would survive and the first two years were quite a roller coaster.

Needless to say, all of Andy’s milestones are very meaningful to me as a mom. I am thrilled that he is now a successful high school student, driving, playing viola in several orchestras, running and working on his Eagle rank in Boy Scouts. As a mom, I look forward to his college choice, high school graduation, to his college graduation, success in a career, marriage, grandchildren – all the normal lifetime milestones.

Now, since my diagnosis with ALS nearly a year ago I can only set goals to be present for these milestones. Without more research to find a cure, my goals will not be attainable.

But I need to finish up the story of our Oregon trip. We left David and Linda in Trail, Oregon on Monday morning.We will be back! We love you guys.

Then we drove to Klamath Falls, Oregon to meet my friend Theresa and her husband Jeff. It was a quick lunch visit. I met Theresa when I first came to Reno and stayed with her family. She was a senior in high school when I met her. This was the first time we really got to talk with Jeff. It is uncanny how many similar interests our husbands have. Dirt biking, RC airplanes, sailboarding, airplanes, military, and the list goes on. We will be visiting them again too.Jeff and TheresaOld friends, but don’t we look young?

Then back to Reno for a few days. On Wednesday, Andy and I went to Nevada Magazine’s Focus Group, a photographer mini-symposium. They had 4 presenters, one on gaining and retaining customers, one on photography basics for sharper images, one on the stock photography market, and one on nighttime photography and astrophotography. We also got a tour of the Nevada Magazine production area. As the former editor of my high school newspaper, this was interesting to me.

This photo shows where they lay out the magazine. Andy, who wants to be a graphic designer, got several contacts who can help him down the line. I also made new friends. We went to lunch at Q’s BBQ afterwards and got to chat with even more people.Photo credit: Tanya Musselman 

It was a great group of really nice people, and a great presentation too.

And then D Day, spent paying bills, and being frustrated that I have to depend on Stan and Andy to make phone calls for me, and dealing with very uncomfortable thick saliva. But I am appreciative of every day I am given on this planet.

June 30, 2017

Another milestone for me – yes my birthday (57)! I never used to want to make a big deal about my birthday, but now it means that I made it through another year with ALS. I woke up this morning, before 4 A.M. coughing due to saliva getting in my lungs. So really, things are not all easy even though I can self care.

Today we will drive to Miles End Lodge Bed and Breakfast for the long 4th of July weekend. We have filled the whole place with friends and family. Last year we also went there for 4th of July. I didn’t write about it then. But the other guests were friends of Ann’s, sisters who are doctors and their husbands. They were very understanding of my need to grieve my diagnosis. I have mentioned that Miles End is one of my favorite places on this planet. We have celebrated Stan’s birthday there, and now we can celebrate mine. 

July 1, 2017

Today we had a relaxed morning chatting, and then went up Kingston Canyon to Groves Lake for lunch.

I will include photos in next weeks blog when I will be back on Wi-Fi.

July 2, 2017

Another milestone day – our baby Anna who died at birth would be 18 today. I have a rosebush in her memory in my back yard and because I prune severely in March, it gets its first pale pink roses right around her anniversary every year. And then they get pinker until the bloom is done.We still hold Anna in our hearts, and I am glad to have the roses to remind me of her. The rose bush was a gift from my step mom Anita and my dad.

Today we drove various vehicles around Big Smokey Valley. Two dirt bike riders and two side by side riders rode on a pole line road to a meeting point on a well graded road. Two others rode in the Ridgeline to get gas in Carvers, NV and back to the meeting place. It was planned to be a much longer trip, but after eating lunch we decided to head back to the beautiful, relaxing Miles End. Again I promise photos next week because I am off the grid out here.

Last year I participated in Sarah Coglianese’s #whatwouldyougive campaign. This year I am busy with clinical studies and we are trying to put together a local Reno fundraiser too. But I told Sarah I would share her fundriving page: 

Sarah Coglianese’s #whatwouldyougive 

Please support my amazing young friend and the awesome fundraiser she created to support ALS TDI, the non profit company dedicated to finding a cure for ALS.

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!

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.

Over the mountains again and again

Andy ran a 10K race in Sacramento on April 15. We drove down the day before and back on the 15th. The drive to and from Sacramento takes us over Donner Summit, a pass in the Sierra Nevada mountains.Stan and I went over the mountains again on Tuesday for ALS Unfiltered, a discussion of the current state of medication research for ALS on Berkeley. It had been snowing on the summit in the morning, but we timed it right: leaving early afternoon we hit the tiniest amount of rain and no traffic problems all the way to Berkeley. We even had time to check into our hotel before the presentation.

ALS Unfiltered was put on by ALS TDI, the only nonprofit biotech pharmaceutical company dedicated solely to ALS. It was presented by Rob Goldstein, Vice President of Marketing, Communications, and Development and ALS.net Research News Reporter and Editor. He first discussed why ALS progresses differently in different people.

There are so many variables that can contribute to the disease and not all the variables contribute to each case.

He then talked about the gene mutation that my mother was confirmed to have. (I did finally get my blood work done and sent off to Washington University in St. Louis. I should have confirmation in about a month).

  • C9orf72 is often called the most common genetic link to ALS known today  (about 20% of those with genetically caused ALS have this repeat expansion mutation.)
  • There are likely to be some up coming clinical trials in 2018 using antisense technology specifically for the C9orf72 gene expansion.

He then discussed some ALS drugs in the pipeline.

Edaravone is a drug approved for ALS in Japan and Korea. The FDA is supposed to rule on the U.S. approval in the next couple of months.

Tirasemtiv, developed by Cytokinetics in the San Francisco Bay Area, is well down the clinical trial pathline.

And then AT-1501, developed by ALS TDI specifically for ALS. It delayed disease onset and significantly extended life span in mice. It is currently being tested in primates before human trials can start. So it is exciting. But it is very expensive, as in $30 million, to bring a new drug to clinical trial. That is what ALS TDI is raising funds for now.

Stan and Andy are a team for the Corntoss Challenge on June 4 in Piedmont, California. There was a young man at the ALS Unfiltered presentation from the University of Oregon who will be married in May and he was just diagnosed. My friend Cory Reich was also diagnosed in college.

Please consider a donation to support Young Faces of ALS and ALS TDI. It is truly an unfair disease. You can donate by clicking this link;  http://yfals.als.net/page.aspx?t=2413

Jen McErlain with me at the end of ALS Unfiltered.

After the presentation, Stan and I went with Jen McErlain of ALS TDI and Dallas Forshew of The Forbes Norris MDA/ALS Research Center (in SF) to an Irish pub a few blocks away where there was an open mike night.  

There was some good music, some funny stand up comics, and it was wonderful to get know Dallas. She will be able to keep me informed of when the C9 antisense trials will start. She is a nurse who has been working with ALS patients for 30 years. Her center does clinical trials and she anticipates they will be doing that one.

Dallas and Jen in deep discussion

We stayed at the Rose Garden Inn in Berkeley. At breakfast the next morning I had time to practice with my new camera.

Stan drawing my portrait on my Boogie Board while I ate.

Back home, on Thursday night I had an overnight pulse ox test ordered by UCSF.

On Saturday we were invited to a pre birthday celebration with Stan’s second family, the Hines, in Carson City. It was a love filled evening with lots of funny memories shared.

Stan with Mother H
Mike with his mom
Mike with sister in law Heidi
Rod, John, and Mother H
The famous Zee from Miles End
Ann, the lovable PA from Kingston 

Stan, Andy, Mike, Rod and his wife Heidi
Ann and John Miles
Ann with her mom
The beautiful birthday cake

And then on Sunday we headed over the mountains again to go to a funeral in Palo Alto for our good friend Joannie’s uncle.

It has been a couple of weeks of lots of driving over the mountains but lots of love, connection, and hope too.

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!