I thought you might be interested in my perspective of dealing with this disease. I found this article that really spoke to me. I changed a few things. I added a few of my own words and feelings and deleted what didn’t speak the truth for me.
What is Good About Living with ALS?!!
1. The truth is, living with ALS requires a sense of humor, dark and/or light hearted, to keep your sanity. And dignity becomes a lost cause all too quickly. You can either laugh or cry, and it is far better to laugh.
2. You find immense clarity of what really matters. Feeling the warmth of the sun on my face and ocean water lapping at my feet – priceless. Watching my grandchildren run and laugh and play – priceless. Being with family and friends – priceless.
3. You discover good, compassionate people who come into your life to replace the ones who fade away. You are amazed at the resilience of your family and friends who give of themselves to ease your struggles.
4. You take nothing for granted, knowing that this life is precious and no one lives forever.
5. You shift your focus on ‘stuff’. Collecting ‘stuff’, buying ‘stuff’, and saving ‘stuff’ all are colored with the very real ‘do I need this stuff’ question. Fundraising that will produce a cure is more interesting than ‘stuff’.
7. You lose the drive to expect people to behave in certain ways, and find relationships can be so much better without those expectations. You can be happy and grateful for what happens rather than miserable for what doesn’t.
8. You can let people know how much they mean to you and listen to how much you mean to them.
9. You can write this chapter of your life as you wish. You can choose to enjoy every moment possible. You can choose to live the life you have left as best you can, with courage and strength and humor and grace.
So most of you know that Phyl’s fundraiser was a great success. Personally, she raised over $10,000 and was the second highest fundraiser. Collectively, they got near $100,000 which was more than twice what was raised last year. Thanks to everyone who contributed. It made Phyl feel really supported.
Of course, those of you who joined us for the Walk-a-Thon last Saturday know it was wet and cold AND ful of love and excitement. Phyl was blown away by the support. Her team, the Phyl-in-Tropics, had the largest group of supporters of any of the teams in attendance (over 50 people showed up for Phyl). She rode around Look Park holding our granddaughter Elena with a big smile on her face. Grandsons, Colin and Noah, waked by her side… and our son’s held the umbrella over her (no easy task). All in all, we had a wonderful day. Our neighbor posted 88 pictures from the walk on Facebook. See Facebook Page here. I think you can see the pictures even if you are not on Facebook.
We had another check up at the UMass Medical Center in Worcester this week. This was part of her experimental drug trial. One of the advantages to the trial is that her muscles and lung capacity is monitored closely. I’m sure I mentioned in the past that her strength measurements were holding fairly constant during the second three months of the 6 month trial. When the trial ended, she went off the drug for 7 weeks and we both could tell that her strength declined during that time. She went back on the drug about a month ago and will be allowed to take it for a year.
On the home front we’ve got lots of changes. We are moving our bedroom to the main floor because Phyl struggles with the stairs. We are putting a big picture window in what used to be my office. We are also remodeling to make the doorway power wheelchair accessible and painting. We will turn our guest room into a shared office space for both of us (and still have LOTS of space upstairs for visitors).
We also bought a used golf cart for Phyl to take out into the fields near our house. It has a raised frame and knobby tires so she can go off-road. We are close to several farm fields that will allow her to zip around. For the past 7 years she has wondered these fields with our dog Riley and she has missed it this past year. She has been able to take Riley around the block on the scooter she got from her Uncle Martin. She loves the scooter for the roads (and she’ll be able to use it in the house) but the golf cart will let her go exploring again!
We are in the process of trying to sell part of our back yard and gardens to help pay off the home mortgage. If we are successful, it will allow me to retire next year. We are getting to the stage when she really needs me to be around and frankly, I’d rather support her than do anything else. I have to teach one more year because that is part of the sabbatical agreement…. but if we can afford it, I’d like to retire sooner than planned. Selling the lot has turned out to be much more complicated than I had originally thought however so I’m not sure if it will happen. We have arranged to remove our pool after Labor Day so anyone who wants to go for a swim, be sure to stop by before then! We also got a recumbent bike for her!
We are headed for the beach at Pt. Judith, Rhode Island again in June. We spent two weeks there in September and Phyl loved it. We have a small bungalow about 50 yards from the beach. We’ll spend the full month of June in Rhode Island. Of course Brian, Belita and Elena live just down the road but you are all welcome to visit if you can (schedule with Phyl).
Phyl asked me to send you an update (as we have been very busy and she is feeling pretty good right now). I’m not sure what is going on, but her attitude has been wonderful lately. Well… wonderful for someone with a chronic disease, that is. I think it may be that we have been interacting with other local folks with ALS as part of the Western Mass ALS Walk-a-thon fundraiser – and she is doing pretty well compared to most people with this disease. Or… maybe it is just the spring weather helps!
She is back on her experimental drug, Amylyx, after a 7 week break. The company could not provide the product (they were trying to make it taste better) immediately after she completed her 6 month trial. Since Phyl was the 4th person in the world to be on the drug, we were a bit out in front of the process. But after the initial drug trial period, the company offered those who have completed the trial access to the drug for the next year. While there is no indication that the drug improves her muscle ability, she is convinced that it slowed down her muscle loss for 6 months – and then she experienced a more rapid decline during the 7 weeks she was off it. We are watching and waiting on new drugs and perhaps the stem cell work to progress but for now, we are pleased to be back on the Amylyx. Her legs are quite weak and she is using a walker around the house. The leg braces help and she can still climb stairs. We’ve used her wheelchair for several trips that required more walking and now she has the scooter! Her left hand is also very weak and typing on her computer is slow. Her last evaluation also showed some loss of muscle in her diaphragm and reduced lung capacity. It is still fine for now, and her voice is strong but this is pretty scary. Fortunately, the disease progression is slow. Her neurologist told her during her last visit that “he would be seeing her on a regular basis for long time.” I hope so…..
And… with all the limitations, Phyl continues to drive her car, go to yoga, swim (up to 26 laps…. slowly), go to acupuncture and make pottery! I have been going with her to the pottery studio because she is not strong enough to carry, cut, or wedge (prepare) the clay. But if I give her a hunk of clay she can make a pot! It is slow and I know it is frustrating since in the past she would routinely make 8-10 pots in a day, and now she makes 2 or 3… but she is really happy working in the studio with her friends. I go along on her throwing day and the next day she can go alone to trim and decorate the pieces she made. This has been wonderful!
And…. with spring we have been outdoors. Yesterday she was crawling along the ground (really) in her garden pulling weeds and last week she helped Jeremy and I do a bit of raking in the yard. Aunt Helen gave her a nifty little scooter that her Uncle Martin used around the house. Phyl of course needed to take it “on the road” and has been circumnavigating our neighborhood on a regular basis with our dog Riley. This allows her to chat with neighbors (yesterday she went around the block three times and it took 90 minutes with all of the stops to chat). We also took the scooter to Look Park in Northampton yesterday and did a 3 mile loop (I had to walk) but she was truly feeling happy to be outside. The scooter gives her a sense of freedom that she has not experienced in a long time. It has been over a year since she could walk Riley and she loves it!
Mobility is a problem and she is struggling to climb the stairs in our home to the upstairs bedroom. She is able to make it – but it is difficult. We considered a elevator seat and tried one out in a local medical supply store. But Phyl knows she wouldn’t use it (too slow) and it would only be a temporary solution according to her physical therapist. So we had a contractor in last week to give us an estimate on remodeling my downstairs office and making it into a bedroom. We would also turn our guest room into a shared office space so both of us can spend most of our time on the main floor. Phyl is excited about the remodel as she is planning on opening up one of the windows and adding a skylight for more light. She is also having the closet rebuilt and we have to widen the doorway to allow a power wheelchair to fit into the room (someday). We hope to have this project completed within the next month and then move downstairs.
We also got an estimate on a big bathroom remodel to create a walk-in (shower wheelchair drive-in) shower unit and ADA compliant toilet and sink. This will also require widening the doorway and a complete remodel of our very old bathroom. While it stinks that we need to make it handicap accessible, Phyl is delighted to gut the old bathroom and do a complete redesign. This project won’t start right away because she doesn’t need to be in a wheelchair yet and it is expensive. We are also looking at ramps to get a power chair out the front door. While this is not how we planned on spending our “mature” years…. it is our life today. I know this is disturbing news for our family and friends, but we are actually doing quite well. Somehow we are learning to adjust and live one day at a time.
More changes…. we have met with a realtor about selling the back lot of our property where my gardens have been. We’ve got no time for gardens and chickens etc., so we really don’t need all this land. I’ve been meeting with the Town Planning Department as it is not quite a legal building lot. I’m working on trying to buy a bit of the neighbors property to comply with building codes so the lot can be sold eventually (its complicated). But if it works out, it will pay for all the remodeling!
Its really fortunate that I’ve been on sabbatical leave this year with all of the changes we’ve need to make. I need to go back to work in September and we’ll look at having a home healthcare aid come in a few days a week so I can go to campus. I can’t quite afford to retire yet but my hope is that I’ll be able to do so soon. As much as I love teaching, I’d much prefer to be home with my wife. Life goes on….
And… we will spend the whole month of June at the beach in Rhode Island (not far from our beautiful granddaughter Elena…. and her parents). Noah and Colin (and maybe their parents too) will visit us and perhaps Jeremy and Sam can visit. We got the same beach house that we rented last September which is about 50 yards from the beach near Pt. Judith. Phyl loves being in the water. She says that when she is floating she is not aware of her muscle weakness. Of course, I’m on guard watching her! She is looking forward to using our pool this summer as well. It is probably our last year with the pool as it will disappear along with the big back yard if we can sell the back lot. But for now, we’ll get some use out of it. More changes!
So, that’s life here at the Gerber ranch. While it might sound distressing…. we are not feeling distressed (well sometimes). Phyl has so many friends who keep her busy (she just left to go swimming with our neighbor Carol). She is excited about the ALS Walk-a-thon because so many of our family and friends will be joining us on May 12. She chose the tropical theme while we were in Costa Rica and named her team “Phyl-in-tropics”. She is asking folks to wear loud Hawaiian shirts and plans on decorating her scooter!
Thanks to all of you who have either donated and/or plan on walking with us on May 12. If you are on Facebook you can see all of the support she is getting for her fundraiser. She has raised almost $6,000 for the ALS Association (for patient care and research) as part of the Walk-a-thon. You may remember that she also raised over $5000 for the ALS “Cut-a-Thon” a few months ago. She is one of the top individual fundraisers in Massachusetts! Anyway, take a look at her team page if you wish: Phyl-in-Tropics. If you are planning on walking with us, please click on “Join our Team” to register. No need to contribute money but it is great to see so many people who are supporting her. Every time someone joins the team she gets a phone message. She gets excited and feels really supported when folks sign up.
Okay… I need to end this email. It is much longer than I intended (I don’t like reading long emails either). I hope you are all doing well with your own personal struggles. I know that Phyl and I are not the only ones with challenges. For me, I am really grateful to have this wonderful woman in my life. I know that you feel the same….
If you are not following Phyl’s daily posts and pictures on Facebook, you might want to hear a bit about our stay in Costa Rica.
We arrived on February 12 in San Jose and drove to Puerto Viejo the next day. PV is the southern most town on the Caribbean just before a mountainous national park and Panama. Basically the end of the road. Kind of funky place, with lots of young people (surfing) and retired folks (lounging on the beach). We chose to join the retired gang and have been at the beach every day. Phyl as you know has always been something of a fish and loves the water. She loves to float in the waves and the buoyancy actually allows her to feel somewhat “normal.”
We have a pattern of coffee/tea in the morning with Phyl in her hammock on Facebook. We make breakfast and then head to town to buy a loaf of steamy hot French bread from a local guy who has it ready when he sees me walk in the door. Next off to the supermercado and fish market and with a quick stop at the coffee shop for gluten-free muffins, we are back at our bungalow by 10am. We get ready for the beach and then off to our favorite isolated spot at one of the “top 10 best beaches in the world” according to Trip Adviser to spend the day reading and floating (Phyl is in the sun and I”m under my umbrella). Phyl is back in her hammock at our bungalow as the sun goes down and then we make dinner and often watch a movie on Netflix on the computer. We do have TV but the only English channel is the BBC International News. I generally watch it for a few minutes at night because unlike at home it is NOT all about Trump. Tonight I learned that it is raining in Madagascar and Carlton beat St. Kilda in Australian Rules Football!
Yesterday, we rented a kayak and took a guided trip up the Rio Punta Uva. We saw a Caiman (like a small alligator), monkeys, sloths, lots of turtles, and the highlight was a bunch of vultures tearing apart a dead raccoon. This was good for Phyl (not the vulture part but the paddling) because in a kayak she feels just like everyone else. She is not limited by the ALS. When the guide asked if we wanted to go through the breakers out into the ocean she said hell yes!
Of course ALS is constantly on her mind of course when we drive by tours and hikes that she can no longer do because her walking is limited. It has been hard for her but she is getting better at letting go of the disappointment. We are working out ways that she can do things. For example, getting in and out of the water is difficult if there are waves. So I go with her, holding two hands and we work with the surging water for her to get out without falling down. We are getting good at it! She is using her walking sticks to go into stores and I’m driving her short distances between the stores to save energy.
Her leg strength is a problem but stamina is more of a problem. A few days ago she spent a long time in the water and the next day walking was very difficult. This gets her down and she had a tough cay. I texted her son’s that evening and they were able to Facetime. This cheered her up and the next day her strength was back. Even though we know she will have bad days, she takes it really hard.
Nevertheless, we just got news that we will have our house on the beach in Rhode Island again for the full month of June (another couple wanted it but the owners like us). And Phyl is already talking about our next trip to Costa Rica. This will depend on her ability to get around, but I’m encouraging it.
When we get home, she will go on the experimental drug again (there was a lapse because it wasn’t ready) and we have an important medical appointment to test her lung capacity on March 16. This is the big question for as long as her breathing is good, we can manage the rest. By the way, she is not talking about this so don’t mention it if you talk to her, unless she brings it up. I know she is nervous.
As you know she continues to raise money for ALS research. Her “team” (called Phyl-in-Tropics) is still in first place fundraising for the Western Mass ALS Walkathon. I know most of you have contributed, so thanks! This makes her feel really supported! I know quite a few of her friends plan on joining us and will help push her wheelchair for the three mile walk. If you want to see how her team is doing, check it out here:
I guess that’s all for now. We are loving Costa Rica but seriously missing our grandchildren. Looking forward to seeing them soon as we head back on March 9. Jake will pick us up at Logan and the airlines have been great rushing us through customs (one of the advantages to wheelchair service).
As most of you know, we are getting ready to leave for warmer weather in a few days. We rented a bungalow on the beach at Punta Uva near Puerto Viejo, just south of Limon on the east (Caribbean) coast of Costa Rica (in case you are in the neighborhood). We’re hopeful the warm weather will help Phyl’s muscles as the cold has been hard on her. We are back in Massachusetts on March 9.
Yesterday, she had her final visit and evaluation as part of the 6 month experimental drug trial for Amylyx. I thought that her loss of muscle ability during the time she was in the trial was slower than the previous 6 months and the test scores seem to agree. In fact, her muscle strength scores yesterday were no different than in November or January. This was really good news and a huge relief! It is not a “cure” but hopefully has slowed down the progress of the disease.
She is still weak and her stamina is low but she is able to climb stairs (with effort), drive her car, and walk around the grocery store with a cart (and me). We celebrate small victories! Her left hand is pretty useless in the cold but gains function when warmed up (so she can type with two hands on her laptop most days). All in all, she is doing much better than expected based on what we know about ALS. I don’t know if this is due to the Amylyx or if her rate of disease progression is just slow but we are grateful.
Although the Amylyx trial is over and she is off the drug for now, the company is offering to allow us to continue on the drug for the next year. It won’t start until we return from Costa Rica but we are really pleased to have this opportunity! We are watching two other experimental drug trials as well to see when they open and we’re hopeful the stem cell research progresses. Ever since the Ice-bucket Challenge there has been much progress in research which hopefully will result in a treatment someday soon.
AT THE WOMANS MARCH
One of her big days this month was “walking” in the Women’s March in Northampton with her friends who pushed her in her wheelchair. Frankly, this was a big step as she had not wanted to be seen in a wheelchair but she so wanted to join in the march. She was very grateful to be able to participate. Her friends have been great…. lunch, coffee, museums and other outings. The past two weekends we have visited Brian, Belita and Elena in Rhode Island and then Jeremy and Sam in Burlington VT. And Saturday, we head for Somerville to spend the weekend before we leave with Jake, Shannon, Noah and Colin!
Nothing cheers Phyl up more than when friends and family rally around her. You remember the haircutting fundraiser she did for the ALS Association of Massachusetts in October. She loved doing this and felt warmed by all the support. The ALS Association put $3 million into the Amylyx trial, so we feel pretty supportive of this organization. And she is doing another fundraiser, this time a Walk-a-thon, on May 12 in Northampton.
I’ve attached the link to her Walk-a-thon team page below. She named her team “Phyl-in-tropics” and she plans on wearing a flower/tropics shirt to the event. We hope you can “join her team” and walk with her (or help push her wheelchair) and wear your own flower shirt. But if you can’t be in Northampton on May 12, you are invited to make a donation in her honor. Here is the link:
The amount you can donate is much less important than her just seeing your name on the list!
Our next big “test” will be on March 16 when we go back to UMass Medical Center for her ALS Clinic visit and they measure her lung capacity. For now, she is good. And of course I don’t know what the long term will bring, but we are focusing on the near future and warm weather for the next month!
It has been 2 months since I’ve sent you an update on Phyl, so here it is….
It has been relatively quiet lately and we have settled into a pattern of living which I suspect will continue for some time. After the initial diagnosis and scrambling around trying to figure out what we can do to support Phyl, it is kind of nice to have some “boring” days! We wake up with the sun and Phyl gets me the newspaper and prepares our vitamins. I make her a cup of coffee and we discuss our day over breakfast. Some days there is something exciting like a shopping trip or doctors appointment, and Phyl has coffee or lunch with her friends 3-4 times a week. We prepare dinner together and settle down for some television before bed. Simple days…..
Phyl did start back at pottery last month and found it a bit difficult. She has less strength in her left hand and it makes centering the pots difficult. I don’t know where that will go but it will be a big loss if she can’t make pottery any longer. The bigger problem is with walking. She has little stamina and struggles on steps. Just today we got her a second foot brace which put a bit of spring in her step! But walking is surely a struggle.
Her Physical Therapist recommended that we move our bedroom to the main floor and we had a contractor who specializes in accessibility look at the house. He recommended a major renovation of the main floor bathroom to make it power wheelchair friendly. We’ve decided not to do that (yet) both because of the hefty price tag and the hope that an ALS drug will emerge in the next year that might make it unnecessary. We have decided to remodel my office on the main floor however to make it our bedroom, probably over the summer. This will allow her to avoid steps. The power wheelchair requires much more room than a manual model, which I suspect we’ll need sometime within the year. We may also look at a power scooter, both for around the house but also so she can walk the dog. She is missing getting outside to walk Riley!
As you know, she is taking an experimental drug called Amylyx. I know she was disappointed that the drug did not reverse the disease symptoms after being on it for 3 months (we are pretty sure she is not on the placebo). We are hopeful that it is slowing down the progress, but we have nothing to compare it with. The trial will be over in January, but the company has announced that they will continue to allow those in the trial to take the drug if we want. She was pleased and will surely continue as there are no major side-effects and it may be helping a bit. There are several other drugs being tested and we are hopeful one will make a difference someday. It is a bit of a race against the progress of the disease.
Phyl’s attitude goes up and down. When we focus on today, we are fine. Whenever she gets really tired, her legs and left hand don’t work well and it causes her to worry about the future. The initial confusion and anger have largely been replaced by a deep sadness. We could learn to live with her level of ability at present, but the disease is inexorable….. it just keeps progressing. Fortunately it is slow but we continue to watch for yet another loss in physical ability. Its a tough way to live. Her friends help by keeping her occupied.
In the near term, we are excited to be seeing the family around Christmas. We were in Rhode Island last weekend visiting Elena (and her parents) and tomorrow we head for Somerville to celebrate Noah’s birthday and Hanukkah with Colin (and parents). Phyl looks forward to these trips, but they are getting more and more draining on her. Nevertheless, we have plans to spend a month in Costa Rica in February. I hope the warm weather is good for her muscles. The bungalow is 50 steps from the beach, so we won’t be walking too much!
I’m on sabbatical leave until September so I can be supportive. I”m not sure what we will do when I go back to work. At present, she can drive and get around on her own. If she needs help, we’ll have to look into getting an aide to come in a few days a week while I’m on campus. Fortunately, we have a Long Term Health Care Insurance policy that should help pay for assistance when it is needed.
So that’s it for today. Phyl is out with friends this afternoon and I am about to log into a webinar on ALS. I’m becoming something of an expert.
It has been a while since I’ve sent you an update (and many of you have spent time with Phyl/Mom recently). Nevertheless, I thought it as time as we are between adventures!
As many of you know we spent the last two weeks in September “on the beach” in Rhode Island. We rented a small house which was about 50 yards from the beach and had a great time. One week we had the remnants of a hurricane (very exciting) and the next week beautiful sunny days.
Best of all we got to see all of our sons, daughters-in-law, and grandchildren, our niece Corey (and we ate lobster). And next week we are off to Arizona. We rented an RV for two weeks and plan to visit the Grand Canyon, Sedona, Tucson and surrounds. Looking forward to visiting the desert!
In between the two trips, we had quite a few doctors visits (which kind of comes with the territory). We visited both of Phyl’s neurologists. Dr. Jim Russell at the Lahey Clinic in eastern Mass affirmed that Phyl’s lung capacity has not deteriorated in the least since the onset of symptoms. This is really good news. She is losing muscle capacity in her legs and left arm but Dr. Russell said it appears to be slow. We also visited Dr. Bob Brown, the neurologist at UMass Medical in Worcester. Here is a story about Dr. Brown that might interest you: https://alsadotorg.wordpress.com/2017/07/26/new-comprehensive-als-review-published/amp/
Phyl continues on the study trial for the experimental drug, Amylyx, with Dr. Brown (we are pretty sure she is not on the placebo the drug seems to make her tired). She is experiencing a little queasiness and slight headaches which may be associated with the drug but we don’t know for sure. The side effects are minor if the drug does anything to slow down her development of symptoms. We have no idea if it is making a difference however since her symptom development is slow anyway.
The doctor says if the drug shows any sign of positive effect, the company has pledged to continue to make it available to everyone in the study trial after the 6 month study is over. So we continue to hope and pray.
I know that ALS is a pretty confusing disease. It has multiple potential causes, which makes treatment really difficult. The ALS Association recently released a short video which explains how the disease effects motor neurons and muscles. It is here: https://alsnewstoday.com/2017/10/05/understanding-neurons-behind-als-3/
The most fun we have had this month was the ALS Fundraiser that our friends organized for us. They had a goal of raising $3,000 for ALS research and at present they have exceeded $4,700. Phyl had a wonderful day surrounded by friends and family. There were 5 haircutters working mostly full time all day on a Sunday with all of the proceeds going the the Massachusetts Chapter of the ALS Association (which by the way is supporting the Amylyx study trial). They also auctioned off pottery donated by her friends. Thanks to everyone who contributed to the fund raiser. The results are linked here: http://web.alsa.org/site/TR/3rdParty/Massachusetts?team_id=363871&pg=team&fr_id=12690
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So that is what is happening. I can also tell you that Phyl has good days and bad. The day of the fundraiser, she was happy and grateful. She got to see Noah, Colin and Elena who always light up her life. When everyone left she had a really tough day. She was exhausted and had difficulty walking which often follows busy days. Yesterday she tried to walk Riley in the fields behind our house and had to turn around rather than walking up a small hill. This is really difficult for someone who was climbing mountains in Colorado last year. She is trying to learn to not push herself so much and take breaks during the day.
Today she went to a yoga class in the morning, ran errands around town, and right now she is cleaning up the garden. She had to ask me to help with some of the gardening stuff and as much as I love helping her, she still wants to do everything herself. This is hard on her.
You can (and do) all help by staying in touch. When I got back from my own errands today, I found her in a lounge chair on the back deck (in the sun) talking with her Aunt Helen. Her voice was animated and engaged. This really helps! She knows she is loved but does appreciate it when someone reaches out to say they care.
So…. that’s it for now. I didn’t think I had much to say, but there it is. I feel ever so grateful that I have a sabbatical leave this year and I can spend so much time with Phyl. We certainly enjoy the vacations but we also love just being together at home, cooking food, and watching TV. Last night we (well Phyl didn’t quite make it to the end of the game at 1:00am) watched the Chicago Cubs win the 5th game of their first playoff round! Go Cubs!
We finally got the appointment to begin the clinical trial on Amylyx on Monday. Phyl will be the forth person in the world to take this new experimental drug. It seems the first three people to get it from UMass Medical found the taste horrible. The company has redesigned the drug to taste better (we hope) and they are ready to continue the treatments again. It is a powder she mixes with water daily. If you want to read about the drug, see:
Phyl is a bit worried about her potential reaction to the drug. It is
composed of two other drugs that have been tested on humans individually but not together. Most people have tolerated the two drugs but some have had nausea. She has a very sensitive stomach and expects to react badly (that is if she doesn’t get the placebo)!
FIRST DRINK OF THE EXPERIMENTAL DRUG – AMYLYX
They hope to signup about 150 participants in the trial from all over
the U.S., with 50 getting the placebo and 100 or so getting the drug.
She took one of the approved ALS drugs a few months ago and reacted badly. The neurologist at UMass Medical, Robert Brown, seems pretty high on this drug so we are trying to be hopeful.
It has been some time since I’ve sent you an update on Phyl. This is mostly because we have settled into a pattern and there is much less “excitement” lately. We are living one day at a time and trying to enjoy life!
Here are a few updates:
Phyl has been getting used to her new carbon, flexible foot brace that gives her left foot more lift. This allows her to walk (mostly) normally without getting too tired. She is wearing it during the day, on errands, for exercise and gardening, but not always around the house. It has made a huge difference in her attitude! We bought her a couple of walking sticks today, to help with her balance. They are less cumbersome than a walker if she is going a distance. Her biggest disappointment has been having to give up walking Riley (our dog) in the fields behind our house because it is just too rough and tiring. I’ve inherited that job! But we have been biking and last week we went river rafting with our niece Corey, Sam and Jeremy. Since the rafting trip required only upper body strength (to paddle) she said she felt “normal” and had a wonderful day on the river.
THE NEW FOOT BRACE MEANS SHE CAN STILL CUT THE LAWN
We visited UMass Medical Center in Worcester last week to be evaluated for a new drug trial, which I suspect she will be accepted into. It is for an experimental drug called Amylyx 0035. It is a combination of two drugs that are currently used for other diseases and seem to have some effect individually on slowing the rate of muscle loss for ALS patients. This is the first time the drugs have been tested together so we don’t know how it will work and we also don’t know if she will be in the placebo group – but it is worth a try. Another aspect of the drug trial is that she will be monitored really closely and given an MRI and PET scan. If there is anything worth noticing about her current health, they will see it for sure. We hope to start the trial sometime in the next few weeks.
We were hopeful of getting into a new stem cell trial which just opened but they are not accepting anyone over 60. She was a bit disappointed as she kind of expects the new experimental drug to cause nausea, since the approved ALS drug Riluzol (which she had to quit) made her sick. We are also questioning the value of taking the newly approved ALS drug, Endavarone, since it is a daily infusion and requires a visit to a doctors office. The effect on ALS was real but minimal. It will be available in October so we will decide then. The Amylyx is a powder taken with water so much easier to take. We’ll see….
HIKING WITH JEREMY IN VERMONT – WITH THE NEW STICKS!
The good news is that the disease progression is very slow, in fact much slower than average. From everything I’ve read, the rate of progression is unlikely to change significantly over time. Also, she has been tested for lung capacity three times over the past year and there is no loss of capacity (this is the big worry). While she is losing strength in one leg, it is slow and other symptoms have not yet developed. I follow the research on ALS and it seems that there are several new drugs being developed along with the stem cell treatment. The basic research on the cause of the disease has exploded over the past few years. The ALS community is truly excited and hopeful. So as long as the disease progression is slow, we remain really hopeful.
The biggest news has been the effect of physical therapy. She has a PT who knows ALS and has given Phyl appropriate exercises. The deal is we want to strengthen the muscles that are functional and not stress those that are struggling. Her back is feeling much better and even her yoga instructor said she is looking stronger. Most days she feels pretty good as long as she limits her activities and is careful walking. Last week she put her foot down while bringing her bicycle to a stop and her left leg gave out. Fortunately, she ended up falling on the grass. As long as she pays attention, she is fine but the weakened left leg can be a problem. Phyl knows her legs will get weaker over time but she is doing everything she can to stay strong as long as possible. Her PT exercises seem to be helping her balance.
HANGING OUT WITH PHYL’S “POPS” IN SOUTH HADLEY
In the mean time, we are living our lives. Jake was here this past weekend with Noah and Colin and we all had a blast, bike riding and hanging out in the pool. On Friday we are picking up the keys for Brian, Belita and Elena’s new house in Rhode Island and we hope to have a couple of beach days while there! Phyl has two groups of girlfriends visiting in August and September, one from high school and the other from college. And this week she is going to a museum in eastern Mass with a gang of her local friends. Right now she is at the corner coffee shop with a few of her friends. She is busy!
I am on sabbatical leave for the next year, so I’m available to provide support 24/7. Today I drove her around on her shopping errands and we went out for lunch. We decided we need to sell one of our cars because she has a bit of difficulty with the clutch on my car and it will get worse (both the car and her leg). She was disappointed as she loves to clutch and shift gears like a race car driver….. but we’ll go look for a sporty automatic so she can still zip around town!
Of course we are not kidding ourselves about this disease. The long term prognosis stinks. Phyl’s attitude is amazing (most days). After a few days of “the sadness” which crept up on both of us last week, she woke up one morning and said “I’m tired of being sad… I’m going to be happy again!” We meditate together and do some mindfulness exercises to try to stay in the day. When we focus on today, things are okay. When we think too much about the long term it becomes more difficult. We had a great day today!
Of course we will prepare the house for her having less mobility when the time comes. We will move our bedroom to the main floor and make room and get some ramps for a power wheelchair to get around. I suspect I’ll need to get a wheelchair accessible van eventually. Folks with ALS who can walk often try to limit their walking as it is so tiring. Someday in the future, hopefully not soon, we will make the adjustments.
WE RODE OUR BIKES UP TO THE MONTAGUE BOOK MILL
But for now we are staying active and enjoying each other’s company. We look forward to two weeks in Rhode Island on the beach in late September, a visit to friends in Arizona in late October or November, and then someplace warm in February. Most days we work in the gardens, hand out by the pool, and run errands together. We’ve become very appreciative of everything we have! We are blessed to have so many family members who live so close. And if you are one of the family members who is far away, please call Phyl to check in. She loves hearing from you….
Maria Isabel Vasquez Jimenez was tying grape vines at a farm in Central California, when the temperature soared well above 95 degrees. Only a few days in the country, this undocumented field worker, who didn’t have easy access to water, shade or the work breaks required by law, passed out from the heat and died two days later.
Maria was 17 years old. The Center for Disease Control reports that heat-related deaths of farm workers are on the rise in the U.S. This deadly trend is unfortunately one of the costs of cheap food. When you buy cheap food at the big box stores, you also invest in this deadly system of industrialized food.
Compare this experience with that of working at a local farm like Simple Gifts in North Amherst. Here the farm workers work hard but are treated fairly. As apprentices who live on the site, they are gaining a valuable education in preparation for the day when they might manage their own farm.
Farm apprentices and farm managers at Simple Gifts Farm in North Amherst
Our industrialized food system of mega-farms, long-distance shipping and big box-stores has driven down the retail price of food to the point that Americans, on average, expend about 9 percent of their annual income on food. The industrial food system in the U.S. produces relatively “cheap” food, but at a cost. Fortunately, in some parts of the U.S., we can partially opt out of this exploitative and costly system.
In our community of Amherst and surrounds, the locally grown vegetables are of higher quality than anything shipped from a distance. We can enjoy the freshness and flavor of the food available at our local farmers’ markets, farm stands, food coops and some regional supermarkets. Yet most experts agree that less than 10 percent of the produce purchased in our region is grown locally.
Why don’t more of us in Amherst “buy local”?
I suspect the reason that 90 percent of the consumers in our fairly progressive region of the country don’t regularly buy local food is due to its perceived higher price and the convenience of shopping at the big box stores.
Busy people treat food shopping as just another task, rather than a pleasurable social experience. Studies indicate that we have 10 times more conversations when we shop at the farmers’ market than at the supermarket. I know when I stop in at the new Simple Gifts Farm Stand in North Amherst, I always bump into friends and neighbors.
The “grand opening” of the new Simple Gifts Farm Stand was an example of the sort of celebration of good food and community, some of us have come to value. When we stop in at Simple Gifts, we invest in a food system that strives toward a better quality of life – fall all!
Shopping locally isn’t an “efficient” use of time in a task-driven life – which is one of the reasons I make the effort slow down and shop at the farmers market or Simple Gifts. Yes…. for me, buying locally is an investment in a higher quality of life (for all).
Some regional supermarkets do try to offer local products. The Big Y in Western Massachusetts, for example, is a family-owned business and a major supporter of the UMass Student Farm, which grows organic vegetables for sale locally. When we do choose to shop at supermarkets, we can support local farmers by asking specifically for locally grown products.
And what about price? How often have we heard the statement that local food costs more?
Certainly, local beef, pork and chicken cost more than meat raised in a factory farm. You just can’t beat the efficiency and scale of the industrial animal factory for low price. Hve you ever experienced “sticker shock” when you see that local, fresh eggs may be priced at $5.00 a dozen or more when industrial eggs may be closer to $1.50? Well, there is a reason! Just look at the pictures of local eggs and free-ranged hens compared to factory farmed eggs below….
The fact that local meat products are generally produced with less stress on the animals may not be worth the higher price to some of us. And some people truly can’t afford to pay the higher price for meat, dairy and eggs that are produced in a sustainable manner. But many of us have a choice! On the other hand, there is little difference in price between local and shipped vegetables, especially during our growing season.
If we were truly concerned about the health of the animals, our own health, the health of our community and the health of the environment, we would choose to buy local meat, dairy and egg products, wouldn’t we. We would investment in a higher quality of life for ourselves, for local farm families, our community, and for the animals we consume.
When we buy local bacon and sausages, we can even introduce our children to the live animals that provide these products for us, like “Pig Floyd” at Simple Gifts Farm!
Pig Floyd is helping to clean up the weeds at Simple Gifts Farm
“Cost” includes more than “price”
The industrial food system that produces cheap food does so at a great cost! The retail price does not include the cost of harm done to the workers in the food system; on farms, in factories, shipping terminals, big box-stores, and the fast-food restaurants serving the food. These workers earn near minimum wage. A federal minimum wage law that leaves families in poverty is part of the cost of cheap food.
When we consider the quality of life we enjoy in those regions like ours where local food is plentiful, we might also wonder about the quality of life of those who are working to produce, ship and sell cheap food. When we buy food shipped from long distances, we say “yes” to an exploitative system designed primarily to maximize financial returns of corporate shareholders – at the expense of others.
It is true that relocalization of the food system may result in higher (but fairer) food prices overall. At the same time buying local food will create local jobs and build community.
When you buy your food locally you are making an investment in a higher quality of life (for all). I think this is an investment we can’t afford not to make.
The North Amherst Community Farm is a small, local, not-for-profit organization devoted to preserving farmland and promoting sustainable farming practices in our community. The capital campaign we completed in 2016 will preserve a 30+ acre farm property in North Amherst, MA that is currently managed by Simple Gifts Farm.
Some regional supermarkets do try to offer local products. The Big Y in Western Massachusetts, for example, is a family-owned business and a major supporter of the 
Changing the Story 