A Step Back in Time, then a Giant Leap Forward

On a beautiful Saturday in October, we did something we have wanted to do for a long time. We rode the V&T Railway roundtrip from Carson City to Virginia City with friends.

There were plenty of characters dressed up to take us back over 150 years.

It was fun to look for wild horses and old mining facilities and it was also interesting to imagine traveling across the country by steam train.

A dog’s tail and leash between the seat and the back of the seat.

Andy met us in Virginia City because he had to go to cross country practice. We got him a one way ticket for the ride back.

Our gang with St. Mary’s in the Mountains Church in the background: Rita, Maddie, Paul, Alice, Andy, Stan, Chuck, and David
The steam engine chugging away after dropping us off. Photo credit Andy Macdonald
4th Ward School. Photo credit Andy Macdonald

We hiked uphill to lunch at Cafe del Rio. There was a zombie group scavenger hunt going on so it was nice to be on the south side of town. Most of the competitors were in costume but not many looked like zombies. There were a lot of people running around though. After lunch we toured the Chollar Mine. The guide had interesting facts about the mining industry in Virginia City since the 1860’s.

Paul and Maddie in front of the mine entrance. Photo credit Andy Macdonald

After the mine tour, Stan and I had had enough walking and I had enough pollen, so we walked back and sat in the train car with all the other old tired folks.😕 The rest of the group hiked back up to C Street for ice cream. 

Andy enjoyed the train ride back down to Carson City. When we got back to Carson we all parted ways and Andy rode with us to drive back up to Virginia City to get his truck. Even with my allergies it was a really fun day.

Now we will stop in present day for a moment. It was time for my three month feeding tube change and my sweet and funny husband changed it for me.

Now the giant leap into the future: I finally started the first new drug for ALS in 20 years. I call this a giant leap into the future because there are so many promising new drugs in trial or close to trial, so future ALS patients should have treatment options.

Radicava in my hands finally! Photo credit Alice Hilsabeck

We got approved to start home infusions with only one training session because Stan was an EMT. And our friend Alice is a retired nurse and she is willing to be the backup.

Five days of Radicava that would be coming home with us.
I am so lucky to have my wonderful husband and friend willing to help with this.

Our Option Care nurse, Pamela, was an excellent trainer. She explained everything and instructed us in the need for sterility since the drug is going into my Vena Cava through my port. She placed the infusion needle in my port and I was ready to go. Stan learned how to do the infusion.

This and all remaining photos credit Alice Hilsabeck

I am so happy to finally be on this drug. The reported 30 % reduction in progression of ALS is huge. The only other drug for ALS available before this only extends life for a few months. 

For all United States ALS patients still waiting to start, I recommend that you be your own advocate. Call your nurse educator. Call Searchlight Patient Support and ask for your patient ID number and your case number. Then ask to talk to your case manager for the status of your approval. You also may have to call your insurance company, your neurologist’s office, and the infusion company. Make sure that you tell everyone that every day makes a difference in this disease. The local infusion company wanted me to wait until next Wednesday to start three required days of training. But we asked if there was any way to start sooner, for instance, could I come in to their facility? And the answer  was, “Yes, tomorrow.” Woo hoo! The pharmacist did call Stan to talk with him and verify his training. 

Love of friends and family, connection with friends, family, and medical professionals, and hope that this drug will allow me to see my son become a man and allow me to be around for the next ALS drug that comes along –  potentially halting or reversing the disease. Let’s hope.

LOVE, CONNECTION, HOPE!

Every picture tells a story, don’t it?

If you are on Facebook with me then you already saw this. I was challenged to post 7 Black and White photos of my life on 7 consecutive days with no people and no explanation. Here they are:

This week I had my port installed on Tuesday, to be ready for Radicava infusions as soon as my infusion supplier sets it up which hopefully will be this week. My surgery was scheduled for 4:40 pm. They told me I could eat until 6 am, so I got up early and did that. Around 8:45 I got a call asking if I could be there at 9:30 for 11:30 surgery. So I quickly showered and got there at 9:30.

I waited in a children’s room with this kid hanging out with me all day

When the nurses heard I ate at 6, they had to go talk to the anesthesiologist. They decided to do another surgery before mine and said they would try to do mine around 1 pm. So we waited. 1 pm came and went. Stan went to get lunch. They told me my surgery was back on the schedule for 4:40 pm. I asked if I could have more allergy medicine and the answer was no. I actually cried at this point – I was afraid of aspirating on post nasal drip going into sugery. If I had known I would be there all day I would have brought my meds. But they finally said I could take my own Allegra. Stan was having lunch over by the CVS pharmacy and the nurse called him and asked him to pick up some Allegra. He came back and I took it with just a little water. And still we waited. When 4:40 came and went I felt like punching out a few more teeth on that kid hanging with me, although Stan pointed out that it wasn’t his fault, so I controlled that impulse. Ultimately my surgery started after 5 pm. The surgeon apologized for the mix up and all went well.

Post surgery with lots of permanent marker marks and with a port under the bump on my right side.

Then on Wednesday, we found out that my infusions are being held up by the need for a signature of the contracts manager for the infusion company, who was gone all week. I complained that it is 2017 and anyone can sign anything anywhere anytime. But again, we waited through a weekend to make more progress. Radicava Ridiculousness!

We have received great support from MT Pharma America, the drug company. The long drawn out waiting period has been hard, but hope in an infusion bag is closer than ever.

What sort of beast is man?

You belong among the wildflowers

You belong in a boat out at sea

Tom Petty – Wildflowers

Perhaps a better song to quote is U2’s Sunday, Bloody Sunday. The tragedy in Las Vegas was so unthinkable and horrific. We watched the first episode of Ken Burns’ The Viet Nam War this week. A veteran was quoted saying that there is a reason we are the dominant species on this planet and that people say the military turns boys into men, but no, he said, it is just a finishing school. That was a chilling comment to hear after Sunday. In another movie we watched recently there were mountain lions (scary) but the humans in the movie were much scarier. Our whole state was impacted by the tragedy Sunday. It is sad that our country can’t do more for mentally ill people and can’t come to consensus on gun safety. #BanBumpStocks 

Northern Nevada supports you Las Vegas. The love that poured out among those fleeing as well as the first responders and hospital staffers, as well as the response from the community at blood donation sites in both Las Vegas and Reno, shows the side of humanity I would rather focus on. #VegasStrong #NevadaStrong. I wish that everyone impacted somehow finds peace and recovery soon. I know it will be a long time coming. It affects every security guard in casinos in Las Vegas and in Reno, and many, many other walks of life too and every big city outdoor music festival, as well as the friends and family of the victims. And every victim belongs among the wildflowers or on a boat out to sea, instead of being killed by a human beast.

We also lost a rock and roll icon, Tom Petty, a week ago. I like his music and Stan and I saw him live in Reno many years ago. I chose those two lines from his Wildflowers song not only for the victims but also because I love to be outside among the wildflowers, but my seasonal allergies are really bad this year. I can’t cough or blow my nose or swallow well so I am beholden to my cough assist and suction machine. If I could go on a boat out to sea I could get away from the pollen.

I have had a lot of thick saliva. From the British MND Association website I got a PDF about dealing with saliva in ALS/MND.

I have been taking Pineapple and Papaya Enzymes to help with breaking up the thick saliva. The publication said pineapple juice could be swabbed in the mouth to help with the same thing. We had some pineapple juice, so I swabbed some in my mouth. I got a very quick reduction in thick saliva. But it only lasted about 5 minutes. So then I swabbed some more. And then some more. And soon I had swollen lips and felt as if I OD’d on antihistamines. This could be an allergic reaction. It turns out pineapple is a strong antihistamine. Even if it is not a pineapple allergy, I do not want to OD on antihistamine. I had been trying various combinations of anantihistamines and decongestants and expectorants, to find allergy relief and trying to keep track in my head. But there are way too many variables to keep track of. Plus I really want to find out which med is making my eyes uncomfortable. I messaged my doctor at UCSF to get her input. She agreed that I can methodically try discontinuing one med at a time, and stay off any discontinued for at least a week. I decided to start with Neudexta. I can stay off it and see if I am having psuedobulbar affect (inappropriate laughing and crying). If I am not having that symptom, then I can discontinue it completely. Four days off so far and nothing inappropriate. I am also documenting when I need my eye drops. Yes, I still need them, and yes I am still having allergy symptoms (sneezing – works better than cough assist! I appreciate that I can still sneeze), itchy eyes, runny nose. This could all still turn out to be my seasonal allergies. I am still hoping for a deep freeze soon!

I became empowered this week and decided to make my own phone calls. Stan does not have patience to wait for customer service to pick up and he gets frustrated with being passed on to another hold and phone tag is also frustrating to him. So I sat down with my Speech Assistant on my phone with my wireless keyboard and used our house phone to call our insurance company. I had pre-typed “My name is Margaret Macdonald. Please be patient while I type.” I waited on hold a long time and then I got the screener. I explained that I was calling because the accumulator that my providers see says I have not met my maximums but I have. So my doctors make me pay and then we ultimately get refund checks. Then I was connected with someone who could help. She said she could see the problem and she would send it their IT department. Then she said, “is there anything else I can help you with?” And I said, “yes. I am waiting for approval for a new drug and with my disease every day counts.” She said it is all approved and she would call Option Care, the infusion supplier, for me. Success!

Next I called Searchlight, the patient support group for Radicava – the new drug. Again after a long hold and with a pre-typed opening statement I talked with a customer service representative asking for my Patient ID Number and Case Number, and my status. I was transferred to my case manager. She had my benefit summary and she had already enrolled me in the copay support program. I should receive the benefit summary in the mail on Tuesday. Again success! So now I can make my own phone calls, and my husband will be less frustrated.

My allergy struggles and all my ALS struggles are so very minor compared to the hell created by the human beast in Las Vegas. Now if only we could turn the clock back to before that Sunday, bloody Sunday, night…..

  

My Aim is to Represent 

I am honored to announce that I have been chosen to be a Patient Fellow for the 28th International Symposium on ALS/MND in Boston in December. The other fellows are an auspicious group that I am looking forward to meet and work with. You can read all about us here: https://alsmndpatientfellows.wordpress.com We were chosen to represent all ALS/MND patients (ALS is called Motor Neuron Disease in many parts of the world).

The selection committee is also impressive. You can read about them at that link too.

We (patient fellows and committee) will be working to get ready for the conference by picking the sessions we will attend and planning how we will share what we learn. This is a new program to have researchers have more interaction with patients and have patient input into the research directions. I look forward to sharing exciting new research through this blog.

I will be able to provide updates as the conference approaches. An added bonus for Stan and me is we can visit relatives – my Uncle Bill and Aunt Candy before the conference and my godmother Aunt Alice for a couple of days after. I also hope to see my mom’s cousin Len, who helped me with the family history for the UCSF study.

This week I got an appointment for my surgery for installation of a port for the new drug Radicava. It will be Tuesday October 10th. We had our monthly ALS Association support group meeting and Nurse Educator Meg gave a presentation on Radicava, the first new drug for ALS in 20 years.

She told me that Option Care, who will provide the drug, is now researching exactly what my insurance company will cover, and she thinks they should be ready for me to start the new treatment right after I get the port. Of course I would start earlier by IV if I can.
I also got together with dear friends that I worked with 30 years ago, Sunny and Lisa.

We had so much fun reminiscing about all the people we used to work with. We also enjoyed getting caught up with each other and plan to do so monthly.

And again on Friday, Stan missed a call from Option Care at 5:20 P.M. When he called back he got the answering service. So again, I am waiting through a weekend to make more progress. But at least there is still progress to hope for!

Trying to Reason with Allergy Season

I never had allergies as a kid. They first hit me in my twenties after I moved to Reno. I was tested, and at that time I was allergic to grass, dust, and dead moths. Well, grass and dust are rather ubiquitous. In Reno the grass pollen season runs from February until November. 

Now with ALS, I can’t blow my nose or cough so I rely on my cough assist and suction machines and lots of Kleenex, which I use to catch my runny nose. But I am active too and it is not convenient to haul the machines around.

I was blessed with the last two Sundays in a row on the beautiful shores of Lake Tahoe. For a long time I have noticed a pine allergy because my allergies are usually even worse up at the lake. I wouldn’t give up those afternoons spent with family and friends but I pay a price with allergy symptoms. 

The ALS Association published an Ask the Doc: Q & A about allergies and ALS with Edward Kasarskos, MD, PhD, director of the ALS Center at the University of Kentucky.  You can read it here.

Dr. Kasarskos says hay fever is particularly difficult for ALS patients who can’t cough up secretions or swallow effectively. He recommends:

  • reduce exposure to allergens by closing windows, special filters for cooling and heating, and frequent vacuuming to minimize indoor dust and pollen.
  • keep hydrated to help thin your secretions. Use nasal sprays to moisten mucous membranes in your nose.
  • talk to your general practitioner about over-the-counter medications you can use, such as Claritin or eye drops or nasal sprays.
  • Check with your pharmacist for drug interactions.
  • Allergy shots may be an option but they can take months to be effective.
  • If you use a Bi-Pap, be sure to use humidified air.
  • Use cough assist.

This is all good advice, but the realities of it are not fun. First of all, my husband is always overheated and he likes windows open in the morning and at night. Second, staying hydrated and using nasal sprays and decongestants causes post nasal drainage that settles in my esophogus. Claritin helps keep my nose clear but does not help sinus drainage. So I have a choice between sinus headache all day, or post nasal drip all day. For the first time, when suctioning, I have had to use the small tubes that go all the way down my throat. Since I am not used to it yet it makes me gag and it makes my eyes water.

I was out to lunch with my friends Melissa and Sabine and I had my lunch and took my ground-up decongestant/exportant after. I also did multilple flushes to keed hydrated. Suddenly, I had mucous pouring down my throat making me nausous and my mouth was full of mucous and it was pouring out of my nose. I went through a ton of paper napkins for my nose and I kept wiping my mouth out with my napkin. Melissa called Stan who came up to the restaurant and by the time he arrived the decongestant had dried me out pretty well. I was rattled by the stress of that and thankful that I was with good, understanding friends.

Another problem is that the allergy meds also dry my eyes out. So I use eye drops, and I need them frequently.

I am anxiously awaiting a hard freeze. We have a cold front right now, and I just got a severe weather email saying that a freeze warning is in effect for tonight (Friday Sept 22, the first day of Autumn). This is very early for a freeze but I will take it.

Another problem is that the allergy meds can make my mouth uncomfortably dry. Also, all these allergy issues make me very tired. 

I don’t mean to complain and I am not looking for sympathy. I only want to show how difficult allergies and ALS can be.

We did make some progress on my Radicava appoval – my insurance company approved it and we met with a surgeon to install my port, hopefully next week. These approval calls always come on Friday, so I have to wait through the weekend to make more progress.

We also met with Social Security and found out that I will get nothing. I could pay for Medicare Parts A and B. But we decided to continue with the school district insurance that I can pay for since I got disability retirement from them. We also found out that Stan can apply for disability retirement, which won’t be as straightforward as ALS. He has sarcoidosis and we have a lot of paperwork to gather before next Friday, his next appointment. He will actually get more per month than he would if he takes regular social security at 62. So the extra work this week will be worth it.

I hope I am close to the end of trying to reason with allergy season. But usually that comes later. At least I am closer to Radicava.

Bobcat, Beach, Birthday, and Gram’s Grave

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

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

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

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

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

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

Sue arrived from her run shortly after Andy

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

photo by Stan Macdomald

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

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

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

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

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

We found it in a nice shady spot.

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

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

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

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

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

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

photo by Melissa Knight

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

Family; and Frustration

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

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

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

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

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

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

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

Teddy and Damaris with my step mom Anita

It was a great, but too short, visit.

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

skipping stones

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

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

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

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

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

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