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.
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.
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.
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.
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.
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.
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.
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…..
Well, Stan’s birthday party wasn’t enough partying for me, so my friend Alice and I hosted one of our girlfriend lunches on Cinco de Mayo at Murrietas Mexican Restaurant. It was a fun gathering, as usual.
I sat at the head of this long table so there were lots of gals I didn’t get to talk with. Maybe next time!
We had about 20 gals, our biggest group so far. Each person got a necklace with a pepper on it and a clip-on flower for theirhair, and also a list of trickster Spanish words. They had to guess the meaning of each one and then we passed the answer key around so everyone could see how they did. It was fun. Everyone filled out a little piece of paper with their name, email address and their text number. Then we had a drawing for our door prize, which was a succulent planter this time. Catherine won.
We had great service at Murrietas, but it being Cinco de Mayo, they were very busy. When I looked at the time it was 1:30. Half of our group hadn’t been served yet, but I realized I better get going since I had to eat at home and finish getting ready to leave when Andy got home from school. So we quickly did the door prize drawing and I said my goodbyes around the table.
I went home and ate as quickly as I could (gravity feed can’t be sped up much) then I finished packing. Stan had left earlier in the day in the motor home to secure a camping spot and meet our friends Ernie and Kori. Andy packed quickly when he got home from school and we hit the road, towing two dirt bikes in the trailer. Andy did an excellent job doing all the driving, which left me to experiment with my camera.
We pulled into the campsite at Berlin-Ichthyosaur State Park (Icky State Park for short) at about 6:30. Our friends Catherine and Brian were about a half hour after us.
Friday night there was a nice sunset.
Stan and I both sleep with bipaps. Our motor home has an inverter so we can run our bipaps off the battery. In the middle of the night I woke up because my bipap was turning on and off. I woke Stan and he asked if I would go turn off the inverter. So I had to find my reading glasses and I used my cell phone for light. Then I went back to bed and the hot water heater came on, so I got up to turn that off. I did get back to sleep but it wasn’t the best night’s rest.
On Saturday, I hiked one third of a mile to the fossil tour, while the rest of the group went on a dirt bike ride (4 of them), with Catherine and Brian in their side by side Polaris.
It was a great tour of the archeological dig which is now in a shelter. The ranger was quite knowledgeable about Ichthyosaurs and he was a great storyteller and a wealth of information.
After the tour I hiked back to the motor home, taking some photos along the way.
I am an introvert and I value time alone for energy renewal. However, it was a little long to be alone. I was wishing I was able to ride a dirt bike, or that we had a Polaris so that I could go on group adventures too. The others got back from their tour and ate lunch. Then Stan went to work on the batteries, which had dried out over the winter. In the meantime, I came up with a family activity. When I got my new camera I gave my old one to Andy. I thought it would be fun to go down to the ruins of Berlin and take some photos and have Stan critique them (he has a lot of photography experience). So once the batteries were on the mend we took our cameras and headed down.
The above two are my favorites. Andy climbed all the way up to the mine entrance and he got a nice photo of three deer. It is nice that Andy has a photographer’s eye and that he enjoys it, so that is something we can share.
By dinner time I was feeling sad again, yes overtired again. I was grieving my illness again, I was feeling as though I was going to be left alone while everyone else went on adventures on every camping trip. I was eating inside and being consoled by Stan, Andy and Kori. I finally was ready to go outside when it was dark and the fire was nice and warm.
We retired when it became very rainy. A big thunderstorm came through overnight.
Sunday morning was cold but the rain was gone. We had a reservation to take a mine tour at 10 A.M. Our friends all decided they would rather get home earlier, but Stan and Andy and I were ready to check it out, so we did.
After the mine tour, we packed up and drove to Middlegate for a late lunch. I rode with Stan in the motor home to give Andy practice driving alone on the way home. Again he did great.
During the week we were preparing for the ALS Association’s ALS Advocacy Conference in Washington, D.C. We were scheduled to fly on Mother’s Day and attend the conference Sunday night and Monday, then meet with our legislators on Tuesday, then fly home Tuesday night.
I went out and got some comfy shoes, since the trip would involve lots of walking. Stan’s feet were very sore, so we got him new shoes and sandals too. We watched a webinar to get us ready for the conference. I prepared some photos and text to help me tell my story.
On Friday Stan’s pain had increased so he decided that he would bring his wheelchair on the trip, because we knew there would be a lot of walking in airports and in D.C.
On Saturday morning Stan’s pain was so high that we took him to the Emergency Room. It is a good thing we did because he was in no shape to travel. He had swelling and infection and unsafe levels of some important blood markers. They ended up admitting him, so I cancelled the trip.
By Saturday afternoon, he was settled in his hospital room and I was able to go to Andy’s Reno Philharmonic Youth Orchestras concert. I was late, but his orchestra performed second and I got there just in time for his performance. He played well and the orchestra was fantastic.
As of this writing Stan is still in the hospital and we don’t have all the answers yet, but it is confirmed that he has a deep vein thrombosis (blood clot) in his leg. It was definitely the right decision to cancel flying to D.C. because flying puts more risk on blood clots. He is in good hands and I know they will get him back home as quickly as possible.
Thursday morning we were at Bartolome` Islet and departed early (6:15 am) for a hike to the top of the Islet. Jim, Peggie, and I all made the trek.
My sister Beth had recommended the movie Master and Commander starring Russell Crowe because it ends in the Galapagos. We watched it the night before we left Reno. It was filmed on this island. Juan Carlos said he was working for a different company when he saw them filming – about 70 people he said: cameras, makeup, retake after retake. The ships in the movie were filmed in Baja, California. I enjoyed the movie even though it was about war between the English and French in the 1800’s.
My favorite thing I saw on this snorkel trip was a brilliant blue star fish.
After snorkeling I went on a glass bottom boat ride.
There were a lot of kids on the boat. I was impressed by how much they learned this week. They could identify everything! But the highlight for me was above the water.
Galapagos penguins! Jim and Peggie got far enough around the pinnacle snorkeling that they saw these guys swimming looking for those little silver fish.
The day before the kids had received zodiac driving lessons.
Early afternoon I got some photo critique from Antonio. Many of my photos from the giant lizard walk were over exposed. The phone’s camera guesses what the exposure setting should be and it is not always correct. And some of my photos should have been close ups. We later discovered the pro mode on my S7 where I can adjust exposure among other things. Also post processing is easy on my phone.
At 5 pm I went on a zodiac ride to Sombrero Chino (ChineseHat).
That night we had a barbecue dinner on deck.
They turned off the lights at one point and a naturalist pointed out features of the night sky with a green laser.
Then Friday, our last full day. Our ship had crossed the equator over night and was in a small caldera called Genovesa.
Stan and I went to Darwin Bay Beach first. We were not able to do the lava part of the hike because of high tide. But birds were abundant.
When we got back to the ship, Jim and Peggie who had gone on the other hike said it was very hot. So we decided to skip it in the afternoon. We did go on the deep water snorkeling trip. I thought it would be cool to snorkel in a caldera. A highlight was a turtle swimming down below us. Stan noticed that I had water in my snorkel and when he tried to help me clear it I swallowed sea water again. I immediately waved my arm and the zodiac picked me up. Stan, Peggie, and Jim got out then too. There was an adventurous older couple with us. I had sat next to the man on the zodiac coming back from the beach another day and I asked him how it was using charades and when I pointed to my fins he said, “I couldn’t use them.” He was obviously disappointed. When we jumped in the water from the zodiac he immediately wanted to get out. Then his wife went snorkeling with Stan and me. I was very impressed by their courage. We found we had a love for skiing in common and that’s what we talked about all the way back to the ship.
We spent some time packing up. We discovered that I only had enough food to last through the next day (Saturday). This caused some alarm since I wouldn’t be home until Monday. I asked the doctor if we would be able to find Ensure in Guayacil. She said yes and told me to ask at the hotel.
We had the opportunity to share our 10 favorite photos with Antonio and he would put together a slideshow for our last night on the boat. It was difficult to upload from my phone. We had to insert an SD card and put the photos on it. My McGyver husband used my earring to open my phone. I brought the SD card up to Antonio in the library where he was uploading. He looked through my photos and actually picked 18 of them. That made me feel so good.
For our last Galapagos sunset we were up on deck and it was beautiful.
After dinner we, along with many other guests, went to the bridge for our 2nd crossing of the equator. It was like a new year’s eve count down as we watched the latitude count down on the GPS meter.
Then the next day we reluctantly disembarked.
We had a nice flight to Guayaquil and checked into our hotel. It was midafternoon so we had time to go out and look for food for me. We asked the concierge where we could find liquid nutrition. He told us there was a pharmacy three blocks away and it would be fine for us to walk. I got one of my favorite photos on this walk.
There were plenty of liquid nutrition choices on the shelves at the pharmacy but we had to ask the pharmacist for 1.5 calories per ml and he had two four packs in back. Perfect!
We had dinner at the hotel’s steak house again. On Sunday, we had a relaxing morning with a noon shuttle to the airport .
On our flight to Panama City, we sat with a young woman in her twenties who told us she was from Guayacil but now lives in Toronto. She had never been to the Galapagos so I showed her some of my pictures, which she loved.
In Panama City we only had about 45 minutes before our flight to Las Vegas. I hurried to the gate so I would have time to eat lunch (we were trying to get back on Pacific time). Of course it was almost the farthest gate. Even though we had already gone through security everyone flying to the United States had to go through security at the gate, shoes off and all. The gate area was way too small for the number of passengers. I was lucky to find a guitar leaning on a chair. I asked it’s owner if I could use that chair and he graciously moved his guitar. He was a veterinary student returning from a veterinary mission to Nicaragua. We had a nice chat. I was able to finish my lunch. Stan, Peggie, and Jim all ate outside the gate and they made it to the gate on time.
On the flight to Vegas we sat next to a nice woman from Peru who now lives in Vegas. It had been a very long day for us. Twice I lost my syringe and tube and had to look under the seats and all through my carry on bag. I am attributing all that to the long day, not to dementia. I had a nice Boogie Board conversation in Spanish with the nice Peruvian woman.
We arrived in Vegas at 10:30 pm. We got through customs quickly. Then we went to a surprisingly empty luggage pickup area. We got our bags and said goodbye to Jim and Peggie. Stan’s dad picked us up and we went to his house only to find my car’s battery completely dead. So Stan’s dad drove us to the RV park where we found that our propane had run out and everything in the fridge was spoiled. Plus there was no heat. So back to Grandpa’s we went. We helped him put clean sheets on the guest bed. And finally got to sleep. I flew home the next morning (without my phone which I had left in Stan’s dad’s car). It was the first time I fell asleep before takeoff -definitely not enough sleep last night. I was greeted by my son and my dad.
Stan stayed in Vegas and got me a new car battery and propane for the motorhome. He also found 6 cans of my food in the closet that we should have packed. He started driving toward home and camped for the night in the Amorgosa Valley and continued driving on US95 the next morning, only to be stopped in Hawthorne because of a rockslide above Walker Lake. After waiting an hour he decided to turn around and take a different route that would add 2 hours to his drive. It was hard for me to be without my phone for about 40 hours. Texting is now my main form of communication, along with the text to voice app on my phone. He finally made it home at 6 pm.
All in all, an epic trip.
With lasting memories for sure! Because my new teenage friend, Fiorella, from the school tour already emailed me another photo and when I asked her to remind me which one was her, she sent me this:
I replied thank you and sent her a photo of my icy rain chain with happy January wishes from up north.
She is also emailing Andy in Spanish to help him with his first year of Spanish. Such a nice girl! I am so glad I met her and hope she will be able to visit us someday.
This week marked one year since my first symptom of slurred speech started. Seeing all the Facebook Years in Review makes me think of what mine would look like. So much has changed in a year! A lot of it has already been covered in this blog. And through it all, Stan has been my biggest support.
We read an article in NeurologyNow (Aug./Sept. 2016) about spousal caregivers. On the cover it lists some of the articles. It says, “The Caregiver Spouse: Save Your Marriage and Your Health.” So of course that caught Stan’s eye so he brought the magazine home . The article is called Tough Love (a term usually used by parents of teenagers). The subtitle says, “Succeeding as a spousal caregiver means knowing when to ask for help, finding time for yourself, and making peace with your partner.” All three of these tasks can be hard.
Health challenges for a married person can cause disruptions to the relationship with the spouse, including shifts and losses in areas such as intimacy, responsibility, and communication. Diana Denholm, PhD, a psychologist in West Palm Beach, Florida, and author of The Caregiving Wife’s Handbook (2012) is quoted as saying, “I always recommend that couples talk about the changing relationship openly and honestly and as soon after it starts changing as possible.” It’s important to review the list of household responsibilities and divvy them up based on the changed circumstances, and decide whether to hire someone to handle a task you or your spouse once handled.
While Stan and I haven’t always had the best communication, we are trying, even with my communication challenges. I recently saw the NBC Dateline story about the movie Gleason and Steve Gleason and his wife Michel and how they are living with Steve’s ALS while parenting. Michel said the hardest time for their marriage was when he couldn’t talk anymore. For us this has come very early in the progression of my ALS. When asked about how she does it (spousal caregiving), Michel said, “It’s our life. It’s what we do.” I watched the episode of Dateline in the car with Stan driving. He patted my leg when he heard her say this, which I found to be very supportive.
The article continued with: Spousal caregivers should resist taking on everything and shouldn’t neglect self care and should consider how the spouse with the health challenge can still contribute. We had a family meeting on this early on and I am still doing some household duties. At the meeting my son asked , “You want to do these as long as you can, right?” And I nodded – yes that was right.
It is also important for spouses who become caregivers to avoid isolation. Dr. Denholm recommends talking about your challenges with people you trust so the anger doesn’t build up and erupt. There are online support groups dedicated to spousal caregivers: The Well Spouse Association – Who Cares for the Caregivers (wellspouse.org) provides a list of telephone support groups on its website. Connecting with caregivers in the same situation can offer much-needed emotional support. Talking to a therapist is also a good way to share your difficulties and get help managing emotions.
The next point in the article is to cultivate healthy communication, which is important in any marriage but is very crucial for couples in which one is taking care of the other. They may need to discuss delicate or difficult topics such as toileting or the changing nature of their intimacy. Ignoring problems or avoiding conversations can lead to anger and resentment. Avoid unloading your frustrations and anger on your spouse. Then pick a specific time to discuss thorny issues and know beforehand what you want to discuss. Also important: Use “I” statements and not “why” statements. As an example, instead of saying “why don’t you hold my hand anymore?” say “I feel closer to you when we hold hands”. It’s important to learn to speak your partner’s language according to Dr. Denholm. Generally men respond better when asked for their thoughts rather than their feelings. Wow, that’s one that could also help me with my teenage son.
Intimacy can be another problem. Some spouses may want to maintain the same level of intimacy they had before while for other couples the sexual part of their marriage may be over or on hold. In any case it’s important to talk about sex and intimacy so that each partner understands the other’s needs, and to manage expectations.Touch can become a really important way to connect.
It is normal to feel sad when watching your spouse’s health decline and your relationship change. Caregiving has its ups and downs, but if emptiness and despair take over you may be experiencing depression.
Signs of depression include a change in eating habits or sleep patterns, feeling tired, a loss of interest in people or activities, agitation, anger, and thoughts of death or suicide, according to the Family Caregiver Alliance (caregiver.org). These are all signals to take action by talking to your doctor or a friend or therapist.
It is also very important that caregivers schedule their own personal time. Without breaks, a caregiver may fall apart emotionally and physically. After a break, a caregiver may be rejuvenated and be better at caregiving. It is also important to ask for help to ease the burden of caregiving. There are groups that volunteer a few hours a week to give in-home caregivers a break. So unless you already have an extensive network of helpers, seek out care. Family Caregiver Alliance lists family care resources by state including respite programs. When Andy was a special needs preemie baby we were able to use RAVE foundation here in Reno which provides 2 hours a week of respite childcare for special needs kids. That allowed me to go to the gym and work out which relieved my stress greatly.
To help ease the burden of caregiving, figure out what resources are available from family, friends, and the community. It can be hard for self reliant people to ask for help. We have a list of friends who have offered to help. So far, we have only accepted offers from people who stepped up without us asking. I am sure that after we return from Holiday travels we will need to ask friends to bring a meal for Stan and Andy once a month or so. Menu planning and grocery shopping was my job before my diagnosis and it has been challenging for Stan to take over (understandably with his own health issues and spousal care issues). Thank you to those who have already stepped up – you know who you are and we can’t thank you enough!
Please consider a donation to the ALS Therapy Development Institute on my fundraising page. ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. It is the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by people with ALS and drug development experts, the Institute understands the urgent need to slow and stop this disease.
Right now, AT-1501, the most effective treatment for ALS that the Institute has ever tested, is sitting in a lab freezer (Freezer 4 which I saw on my tour of the lab in October) because ALS TDI does not have the funds needed to advance it. $11 million is needed to push it into phase one. ALS is not an incurable disease. It is an underfunded one.