Mistakes and pressure are inevitable; the secret to getting past them is to stay calm.

Travis Bradberry

Y’all, I did a thing. I applied to Temple University and I got in. For the Fall Term. Like in 3 months I will be in college again.

Matt has been bugging me for years to go back to school for another degree. He was thinking Business. However, I don’t do well with numbers and I don’t really have any desire to own my own business after seeing how stressed it has made my mom with her small business over the years. Both seem pretty integral to running a business.
What did I want to do? What do I love to do? Because it has to be something I love to do in order to take me away from the boys and from Matt. If you have read any previous posts you might now know that I love the outdoors and I love gardening. So, I did what most people would do. I Googled “Master Gardener classes”. I looked in to becoming a Master Gardener, but for Bucks County the course for that isn’t offered for another 2 years – thanks Covid. I looked at Associate’s Degrees at the local community college. Nothing. That lead me to “Horticulture”. And wouldn’t you know it – Temple University had an Associate’s Degree in Horticulture. Better yet, their Horticulture program was not on their main campus in Philly but at their campus in Ambler, which is 25 minutes from our house! Woohoo. I set up an interview to discuss the program. I got all my questions answered and decided, why not? It’s $55 to apply. Go for it!
I did. And in typical “me” fashion, in the drop down menu where I choose what degree I was interested in, I came across “Landscape Architecture”. Hmm, that sounds interesting. Read some more about it, “hmm, that sounds like exactly what I want to do.” So, long story short, I have escalated from a ONE COURSE, 50 volunteer hour certification of Master Gardener to a Bachelor of Science in Landscape Architecture. From a weekend class and then some to a 4 year degree. Yep, I did that all on my own people. I’m crazy.

Now, I think I have mentioned this before. I love my family very, very much. I think I’m a pretty alright mom. I do yell at the boys more than I like. I try to be there for them and love on them as much as they will let me. I want them to know that they are by far the most important things in my life. And I’m pretty decent at taking care of Matt. I also try to make him feel that he is the most important thing in my life. That his happiness and comfort and safety is up there on the daily.
But, the boys are getting older and needing me less. And I don’t want to get on in life and look back and say “I did great taking care of my guys, but I never did anything that really sparked life in me.” That isn’t to say that being a wife/mom/caregiver doesn’t bring me fulfillment, but it also doesn’t spark a passion in me. I’ve never been drawn to the medical fields so being a caregiver is more because I love Matt more than words can accurately describe than because it is something I want to do.
And I feel a little (lot) selfish for doing this thing for myself. It’s going to put a lot of strain on our daily life as a family. But Matt convinced me to do it. It’s not something I think I would have done if it wasn’t for him pushing me. I had to convince myself also because I already have a degree I didn’t really do a ton with. I used it for maybe 2 years. As a Navy pilot’s wife there was not a whole lot of job opportunities at the bases we were stationed. Because I don’t want to put this strain on my family if it’s something I won’t use. Something I will wake up every day and be excited to go to work to do. Something that has potential in our area for the long term.
Sooooo, if anyone is in the greater Bucks County area and knows of a top notch home aid that is looking for some hours in the fall, we have got a job for them. We are going to see if I thrive under pressure!

“Government’s first duty is to protect the people, not run their lives.”

Ronald Reagan

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On to ALS enemy #2 – U.S. Food and Drug Administration. So much could be said about this bureaucratic quagmire. It’s a behemoth of an organization that is so confusing and has an unbelievable amount of red tape. It seems, from the outside, they are protecting us to death. But pALS are already dying so that doesn’t make any sense.
In 2019 we had an in-person meeting with some of the officials that were instrumental in the Nurown trial. Honestly, I had a hard time staying awake. I feel like it started off well. Through some contacts we had in Congress, the acting head of the FDA joined the meeting, but left about 5 minutes in. From there I felt it went downhill. One member of the FDA in particular was incredibly condescending. Another treated the group as if we were his children, not in a condescending way, more in a placating way. Once I was insulted for the group I tuned out. Through these 2 individuals I feel like we can completely sum up the basis of the problem with the FDA in how it approaches ALS and our community.

For starters, they absolutely believe they know better than us when it comes to this disease. I do not feel like they honor or respect our opinions or input. And isn’t that crazy?! We are the ones living this hell. We are the ones with firsthand knowledge of what is going on. And with my husband there – freakish smart guy – there are people in the community who know and understand the science behind the disease as well. In fact, I would venture to say that the ALS community as a whole is very versed and informed on the science behind the disease. So to treat us like we are somehow less than them is rude, to put it nicely. Then we come to the paternal nature. Like we are petulant children throwing a hissy fit over a drug. They try to placate us with words but no action. I don’t know how long they promised the Guidance Document for ALS Trials before they finally published it. It took Matt saying he was going to starve himself for them to publish 12 pages of guidance. I think it was over 5 years it took them to review and publish the document. That’s the equivalent of a parent saying “2 minutes” when we know it is really going to be 10.
The community has asked for more modern trial design. Did you know that the trial requirements for an ALS treatment are the same for an acne treatment? In what world does that make any sense? A terminal illness is treated the same way as a cosmetic inconvenience. If that doesn’t blow your mind you are special. The placebo arm of a trial is somewhat cruel when it comes to a terminal illness. In regards to NurOwn®, the procedure involves taking a bone marrow aspiration then injecting manufactured stem cells into the spinal fluid. It’s not a comfortable procedure. Half the trial participants essentially got sugar water – that’s cruel.

Another problem with the FDA is conflict of interest. Panelists have to disclose any conflicts when they are selected to review a drug, but there are loopholes, like in everything. While they might not get incentives up front, a couple years down the road they might get some kickbacks. In the way of speaker fees, donations to their research, etc. The larger pharma companies can afford to incentivize panelists. Unfortunately, small companies are the ones researching ALS. These companies cannot provide the same sort of future bonuses that big pharma can nor do I think they should for ethical reasons. Big pharma can also make it worthwhile for panelists to not let the small guys get a leg up. I would hate to say that corporate pharma is keeping a treatment from market, but I will imply it. Big corporations do not like the little guys succeeding, in any market. A long read but check out this article giving real numbers to this issue: Hidden Conflicts?
Obviously the FDA is broken in how it approaches ALS. It is also not helping many other orphan diseases. The market for a treatment is not as lucrative for these diseases. There are not enough people dying and it is not a communicable disease. The FDA needs to stop protecting us to death. They need to allow innovation so we can save our pALS and find an end to this disease.

“People can tell you to keep your mouth shut, but that doesn’t stop you from having your own opinion.”

Anne Frank

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PSA: This is my opinion. Caitlin’s opinion. Matt has advised me otherwise, but a lot of times I don’t follow his advice.

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My feelings about ALSA. Let me preface this – I am talking about National ALSA. In my experience, local chapters are far more in tune with the community and, ours in particular, are wonderful organizations. Some have been so disgusted with National that they have tried to branch off from the organization, showing they care for the patients and their families exponentially more than National cares. If you missed that jab, let me put it more clearly. I do not believe National ALSA truly cares about the patients it is supposed to represent. I do not think National ALSA wants a cure for ALS. Part of the problem comes from the contradiction of any non-profit formed to help cure a terminal illness. If they are successful in their mission, they have essentially worked themself out of a job. However, on the flip side, imagine how in demand a board would be if they actually worked their butts off and were instrumental in curing a terminal illness! If they did not focus more on making their community comfortable as it died.

Because that’s another problem with ALS. Our pALS die too fast. The memory is short. The ones fighting now might not be around in 2 or 5 or 10 years to keep fighting and making a ruckus. Our loved ones are comfortable as they die, but that is not what our community wants. Our community wants a cure. And we want an organization that has the backbone to go out on a limb and fund the underdogs who are searching for a cure. Because you can bet our organization has the funds, but it most certainly lacks a backbone.

Take the above for example on what I mean. In 2017, Total Revenue versus Grants and Similar Amounts Paid was pretty close to even, off by $2.5M. In 2018, the difference between the two came close to $10M while the salaries increased by $500K. I do not have the time or energy to go searching for the 2019 tax returns because ALSA now makes it difficult to find anything relating to how they are spending their money, but I am guessing it doesn’t look too good for them. For the LIFE OF ME, I can not understand why an organization refused to help fund a Phase 3 Trial for an ALS therapy – the first one of that magnitude and excitement. It literally escapes me. If your mission is to find a cure, help fund a promising therapy. Seems like a no-brainer to me.
Recently, if you follow any ALS advocate on Facebook, there was a picture circulating of a very nice lake house. Said lake house was purchased as a second (maybe third?) home by the CEO of ALSA. This purchase raised quite the hub-bub in the community by its price tag. It’s a beautiful home, lake front, a sprawling 4,800+ home perfect for AirBnB. It was purchased for close to $900K, as a vacation home. I don’t know if we can all agree, but I will say it is in poor taste if you represent a community that is fighting a terminal disease that lays waste to families monetary and emotional resources, that many in the community are unable to sustain life because of the cost – to then buy a home with such a price tag as a vacation home. But hey, maybe it’s wheelchair accessible.

I believe one of the biggest problems is that the big wigs at ALSA have honestly lost touch with the community. Barb Newhouse, CEO of ALSA prior to this one, met with my husband, myself and other pALS in our Congressman’s office, without any handlers or staff, and we felt like she listened to our voices. I can not imagine that happening in the current climate. When the CEO of a non-profit makes over $350K a year in salary, not including bonuses, yet the organization has nothing meaningful to provide for its efforts, there is a serious disconnect. During one phone conversation we had with their media guy, back when we started in advocacy and Right To Try, I saw red. We were asking ALSA to help us with RTT and they were refusing. This particular person explained to the group that he understood. He had friends he made while working at ALSA who had died from ALS so he understood our position. Absolutely, positively, unequivocally I saw red. There is no way you can understand ALS unless you live it day-in-and-day-out. At the end of the day, this guy got to go home and leave ALS at his friends house. And the leadership board at ALSA gets to leave ALS at the office. They do not wake up in the middle of the night with their spouse who can’t breathe. They do not have to take their family member to the ER with yet another concussion from falling. They do not have to watch their spouses body deteriorate in front of them, daily, with no options to stop it. They get lake houses. They get “work trips” to Australia. They get expense accounts. It should not be an us vs. them thing, but that is what it has turned into. They do not get it. National ALSA should be ashamed and apologetic. They should do better. They should be the ones calling us asking us to help them get legislation through that helps pALS.

Our mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

The ALS Association

Instead, ALSA has repeatedly asked for pALS to advocate for the National ALS Registry – something that ALSA gets a no contest grant for each year from the federal government. It asks pALS to advocate for better health care. It asks them to do annual walks that, wait for it……….raises funds for itself! (We don’t even need to go into the fact that their biggest annual fundraiser are walks, for people who can’t walk. Couldn’t think of ANYTHING better?) National ALSA consistently asks pALS for things that benefit the organization but never gives the community what it wants. If ALSA had produced anything meaningful to the ALS landscape that would be one thing. But sadly it has not. It helps our pALS be more comfortable as they die. Gives them equipment to help with their progressively failing bodies. Provides clinics that they go to every 3 months to learn what parts of their bodies are giving out fastest.
Since its founding in 1985 only 2 pharmaceuticals have been approved as treatments in ALS by the FDA. The first is Riluzole, approved in 1995. Admittedly a lot of pALS do not take this because the side effects are not worth the abysmal extra times it gives the patient. The second is Radicava, approved in 2017. Radicava is supposed to slow the progression of physical loss, but it is not fully effective – post approval studies show no meaningful impact – and is an injection so not a lot of patients choose to submit to this treatment either.
So, in 36 years, an organization that has as its opening to their mission statement “to discover treatments and a cure”, has nil to provide the community in that department. An organization that received an ungodly amount of money from a viral fundraising campaign brought about by 2 pALS in the community – not the ALSA fundraising arm – has nothing meaningful to provide to the community. Pete and Pat were so excited about the prospects and hope brought about by the Ice Bucket Challenge. Sadly, these two men have fallen victim to ALS whilst ALSA still has millions in the bank. ALSA has failed us. ALSA continues to fail us.

I want to be like a kid and scream and throw a tantrum. I want our pALS to be heard. I want our pALS to be seen. I want ALSA to understand they are royally f’ing up. I don’t want to listen to my husband on another Zoom call with other pALS trying to figure out a way to save their own lives. There should be no Matthew McConaughey Dallas Buyers’ Club ideas floating around. These people should be with their families enjoying whatever time they have left while ALSA is doing the heavy lifting. These pALS should be the ones enjoying sunsets on the upper deck of a private lake house while ALSA gets the FDA to expedite therapies. It’s outrageous, infuriating, mind-boggling and heartbreaking. We have to find a way to fill the hole that ALSA has created when it abandoned this community. Because that is what it has done. ALSA has abandoned our community to serve itself and it’s time we did something about it.

“Immortality is to live your life doing good things, and leaving your mark behind.”

Brandon Lee

I need some help. I’m at a loss. I have an idea and no knowledge of how to make it a reality.

For those of you who do not know Matt or me that well, we love plants. Matt is partial to trees, I like the pretty plants. The previous owners of our home had cleared out almost all the trees and plants from the property. They were old, didn’t want to do the maintenance. Over the 7 years we have owned this home we have put in thousands of dollars of plants. Because we are “cheap” we also put in countless of hours of sweat equity and an almost trip to the ER with planting everything. (A 135lb girl is no match for a power auger and the shale layer in our backyard. Definitely a 2-person job.) It is not really a joke when Matt says he wants his ashes spread among “his trees” in our backyard when his number is called.

I get so much joy out of planning our annual spring planting and our vegetable garden that I am seriously looking in to going back to school to get some sort of degree or certificate in landscape design or horticulture. As the boys are getting older and need me less, I am trying to find something to bring fulfillment to my life outside of caring for my boys.

So now comes my idea. I would absolutely love to plan gardens for pALS and/or cALS and install them. Come to their house and give their property some needed outdoor maintenance. Install community gardens in places that could use a little love. What I am going for is taking something Matt loves – trees – and using it to create something I love – gardens – to bring happiness to other people. Matt and I both love the idea of creating something that will be around long after we are gone. You could say the idea was somewhat inspired by our trip to the Big Tree forests in California in October. Those behemoths have been around for centuries.

However, I have absolutely no idea if it is something worthwhile. And if it is, how to start. Would I have to start a non-profit? How do I find people and places that would benefit and want this? Is it a stupid idea or played out already?
This mommy and caregiver has been feeling recently like I want to do something more with my life than just take care of other people. I want to do something that takes care of me. That lights a fire under me. That helps me feel worthwhile and is something for me. Anyone with any insight or opinions is welcome to share. Please!

“Life is a balance between what we can control and what we cannot. I am learning to live between effort and surrender.”

Danielle Orner

Hello people! So the year of the 2020 blog obviously did not happen for Matt and me. Started off decent and quickly fell off. We were busy but I can’t point to exactly why we didn’t keep up with the blog other than we both got “lazy”.
I wanted to start off again talking to my fellow caregiver spouses. I recently had a long phone conversation with a newly diagnosed wife of a pALS. They are still in the phases of hoping it could be something else…anything else. But also being smart and trying to prepare for a future with ALS. It brought be right back to the beginning of Matt’s and my journey. The thinking I had a handle on the diagnosis and then crying out of fear, frustration and sadness in the middle of a mundane task. Of hoping for it to be ANYTHING else. Heck, almost 10 years later from his preliminary diagnosis and I still cry about it, for all the same reasons.
Recently Matt and I had a talk. I do not know about other caregivers but I have a hard time telling Matt about the things I struggle with about him having ALS because I know he feels them too. I don’t want to add to his burden. I miss having a husband be just a husband. And everything that comes along with having a husband. Mostly I wish we had held hands more often, kissed more. I wish we had been more affectionate. Because all that is pretty much gone now. And while the physical perks of having a husband are greatly diminished, Matt is still here. I think the disease has changed his personality some – how could it not? – but he is still that impossibly witty cadet on dorm restriction from 2002. He is still the smartest person I have ever met, annoyingly so. And stubborn, and sarcastic, and funny, and possesses the most random knowledge of trivia.
I know my fellow spouses feel the same, unless you are a way better person than me, which is likely, and don’t think about all that has been lost. If you can only look forward, please let me know how you do it! It’s a weird state of mourning the person who is gone and being grateful for the person you still have.

But, I digress from what I really wanted to write. I wanted to write to other caregiver spouses about friendships. About some friendships I personally find very important. I don’t remember if I ever wrote about our friends we have made since moving to Pennsylvania. When we moved here we already knew Matt had ALS. Matt was still a physically normal 30-year-old. Sometimes it takes a while to make new friends when you move to a new place. After about 6 months we started making friends. We are still friends with some of those people, but a lot of them have fallen off as the boys grew and their interests took over our lives. Our close group of friends – our squad – have never known Matt as a physically normal person. A lot of them also realize he is not really a normal guy anyways, so it fits. I would say some of our closest friendships have really formed over the last 5 years.
These friendships are especially important to me for the mere reason that they do not know Matt as anything other than who he is now. Sometimes, it’s hard to be around the friends we had before the diagnosis, the wheelchair, the paralysis. They feel bad for us. They make me think of a different future. They remember the guy I mourn. I feel, rightly or wrongly, a lot of our “old friends” have a hard time being around Matt so they tend to stay away because catching up is difficult for them too. So having our group of friends here that don’t know any different is awesome for me. They don’t think it’s weird if I show up without Matt. Or if I take him home and then come back to hang out without him. They don’t ask if he is OK at home alone. They know he is. They know our life like this. If we cancel at the last minute there are no questions.

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I have never been a part of any caregiver support groups. It’s not my thing. I don’t think I have the personality for it. I don’t immerse myself in ALS. Going back to the phone conversation, I realized and said “I am the worst ALS wife”. I know Matt’s ALS, but past that, I don’t know that much. Matt is the one who dives in to the world. Part of the reason I don’t is because I don’t have the time. Between the 3 boys, the old dog, taking care of the house, taking care of Matt and taking care of myself, I don’t have a lot of free time. The other part is that in the free time I do have I don’t want to spend it in that hole. I don’t let every aspect of my life be about ALS and I feel like if I participate in a support group I would be more in the ALS life than is healthy for me. I would probably benefit from some support of spouses in the same position but I just can’t bring myself to do it. I’m very good at procrastination and avoidance.
Fellow spouses, I urge you to make friendships outside the community. And maybe, make them the most prevalent ones. Keep your old friendships from before, but also understand if they fall off, it’s not your fault. You have so much on your plate that the people who really love you will keep showing up even if you are a distracted friend. They don’t care if your spouse is not the same person as they were a year ago, they don’t care if you forget to call them back, they are the people that are there for your forever. Don’t ever let those friendships go. But, if there are people in your life you thought were beyond important and they stop showing up, let them go. Don’t expend energy on people who don’t get you and your life. Work to forge friendships with people outside the ALS world who come in to your world. It’s refreshing to take a 4 hour break for a Saturday night. To be with people who don’t ask about your spouse or talk about ALS but still get it and love your family. It’s there but it’s not the focus. ALS did not bring these people in to your life, your common interests or common children of the same age did. It’s an added bonus these people are fantastic.
Friends of caregivers, you will never know how important your friendship is to us. I for one am not a girl who expresses feelings very often in person. Our squad knows who they are and this is my way of telling you that you are so very important to my survival on this path. I am forever grateful our children ended up on the same baseball team, in the same grade, at the same elementary school. That you dance in kitchens with me, run stairs with me, take our kids for an afternoon no questions, check up on us the morning after, make me laugh and smile on days it seems like I can’t. You are so loved.