After my diagnosis, people frequently asked me if I had a bucket list; I did not really have an answer, but I have thought about it since that time.
There was the list of places that I had been planning to travel to – the following October I had intended to travel solo to Turkey (which obviously wouldn’t have happened anyways because of COVID). My top five destinations were Istanbul, Portugal, Italy, Paris and Ireland, and then back to Scotland. The plan was to make one trip per year.
However, a list of destinations, although exciting and intriguing, doesn’t really feel like a ‘bucket list’ to me. At the end of my life I doubt that my sense of contentment and happiness will be contingent on what destinations I travelled to. I would rather focus energy and resources on relationships.
To be honest, since my diagnosis I have felt a bit pressured about the whole bucket list thing. It seemed like such an automatic question from people when they heard that I had a terminal disease. I’ve wondered if people who really enjoy adrenaline fuelled experiences (not me) or real extroverts (also not me) are more of the bucket list kind of people. A casual online investigation shows that most bucket lists are about travel destinations, and then some other things like skydiving, white-water rafting, tattoos and puppies. But maybe for someone that reads a lot, a bucket list might be about the sense of accomplishment of finishing certain books. For a person that loves to work with their hands, maybe it would be about projects that they would love to accomplish in the garden or workshop or studio.
I really enjoyed reading and highly recommend the memoir, The Bright Hour by Nina Riggs. Nina’s oncologist told her that her cancer was uncurable and suggested that she make a bucket list. The author’s husband came up with a creative strategy. She wrote, “I had been stumped by the bucket list. It depressed me: ‘Oh my god I am so lame I can’t even come up with an interesting bucket list,’ I whined in the hospital. ‘How about a ‘fuck-it’ list?’, John (her husband) suggested at some point. ‘Sort of the opposite. What can we just say ‘fuck it’ to and send splashing off into some sewer and not bother ourselves with anymore?’”.
That’s one way to consider the bucket list – what not to bother with anymore, and I think the idea has real merit. My ‘fuck it’ list includes people that are crabby or negative or just plain awful. I don’t want to waste energy on any of that. I guess it’s a way of prioritizing time and energy. What else can I add to that list? How about self-improvement and exercise? Just kidding. In one ALS memoir I read, the author wrote that he no longer flossed his teeth..
I am completely supportive of whatever adrenaline loaded experiences or travel goals people have for their bucket list, and although I would love to go to Italy or Paris, it’s not a big deal if I don’t get there. And, let’s face it, if you’re really attached to your bucket list of travel destinations, you probably out of luck with the current state of the world.
The Bright Hour: A Memoir of Living and Dying by Nina Riggs. Simon & Schuster, 2018.
This cancer memoir is a thoughtful and honest exploration of what makes life meaningful in a person’s remaining days, and also very humorous. Nina was a poet and 37 years old when she died in 2017.
I am dedicating this post to my sister-in-law Kristen, who left this world last week at the age of 48. Beloved wife of my brother Ian and devoted mother of daughter Carly. Her family and friends are broken hearted to have lost this remarkable and beautiful person from our lives.
Kristen was diagnosed with Cystic Fibrosis (CF) in her teens along with her identical twin sister Jenn. Both of them valiantly fought the hellish disease for several decades, refusing to let it stop them from living a “normal” life that included marriage and motherhood. Sadly, Jenn passed away a few short years ago. I can’t begin to imagine how difficult it would be to lose your identical twin.
She joined the noisy McDonald clan seamlessly. Never forgot a birthday. A natural cheerleader, Kristen’s team always won the Team Spirit award at our family annual mini-golf tournament because of her contagious enthusiasm. She always had a warm and welcoming smile for everyone.
Ian, Kristen, and Carly visited on Thanksgiving weekend for a family gathering. She and I shared a love for the film Napoleon Dynamite, so we watched it together with Ian and giggled. A week later, as a result of a CF related infection, Kristen suffered a spinal stroke. After 3 weeks the infection proved too much for her tired body.
After I was diagnosed with ALS in January 2020 I looked to Kristen as my role model. Always educating and always upbeat, she was never a martyr or a victim to CF. She was a champion who was both sweet and fierce, and both tenacious and loving. She spent time and precious energy advocating for CF treatments and research. I went to Kristen with questions about things like insurance, medications, and medical equipment. Although ALS and CF are quite different, respiratory issues are often the common challenge. She was always as helpful as possible, but also did not omit the tough truth. I could tell her how much I dislike it when people tell me I am brave, and she understood.
This past summer Kristen and I spoke (or, rather, I wrote on my board) about death and dying. Kristen believed that one’s body and mind would in sync know when it was time to go. When enough was enough. I take comfort in that perspective – that I’ll just know. I like to think that Kristen knew last week and that it gave her peace to know that her journey was done.
Kristen’s life was a gift to all that knew and loved her, and, surely, that’s the best any of us could ask for.
It’s been a longer break this time between blog posts and apologies for that. We are mid-renovation here – adding a shower and making our main floor bathroom accessible. When that is done I will move into the living room on our main floor so that my world is on one level. While this arrangement will be much better than the current one, it does feel like a significant step towards total dependency.
Managing the enormous amount of saliva and mucus in my mouth and throat has become an ongoing battle. People with ALS don’t manufacture more of the stuff than anyone else, but if they cannot swallow at all (if the disease is affecting their mouth and throat), it collects into a slimy mess that can wake me up from sleep and cause persistent coughing. I now have following to help with this problem – suction machine, water pic with club soda in it, humidifier, nebulizer, cough assist machine and my trusty tongue scraper. I am currently trying out scopolamine trans-dermal patches; these are usually used for motion sickness but also work to reduce saliva. The patch does help with decreasing saliva, but unfortunately it makes me feel quite drowsy; an online search regarding side effects reveal that scopolamine is called “the zombie drug”. There are a couple of other meds to try as well as radiation.
Your emails and blog comments mean so much to me – I truly appreciate each and every one. However I am now unable to respond to each message. Please know that I do see and read each one and so appreciate your support and interest in my journey. Soon I will be using eye-gaze technology which is activated by the retina (blows my mind) and although it will be slow to start, apparently after some practice speed picks up. Hopefully it will be no slower than my current one fingered typing.
Finally, many of you have asked for an update regarding my psilocybin experience. After several Zoom therapy sessions that included setting intentions, I embarked on my trip early September. I took a high dose and there were two guides with me to ensure a safe and controlled environment. The experience was about 6 hours although it didn’t feel that long to me. It is challenging to describe this personal journey in words – what I will say is that I experienced the most peaceful and serene feeling that I have ever felt. The philosophy is that psilocybin will give what you need (which may not align with what you want), and I can buy into that premise. I have had further Zoom therapy sessions afterwards to process the trip and try to understand how it applies to my end of life experience, and this has felt very helpful.
I continue to believe that psilocybin should be made available for therapeutic purposes, including end-of-life; our federal government must do what is necessary to enact legislation for therapeutic use of psilocybin. Please see the TheraPsil website for more information. https://therapsil.ca/ Enjoy this beautiful time of year!
I’m planning a trip – not to Paris or Rome… not that kind of trip. This will be a journey to explore my inner world with the help of psilocybin (magic mushrooms). Let me explain – last summer a friend mentioned that she had a friend who was taking psilocybin as end-of-life therapy. Last fall and winter I did some online research and reading as I knew nothing at all about psilocybin; although I came of age in the 1970s, I never dabbled in hallucinogenics.
Psilocybin is a hallucinogen that works by activating serotonin receptors, most often in the prefrontal cortex. This part of the brain affects mood, cognition, and perception. Psilocybin-assisted psychotherapy is the professionally guided use of psilocybin in combination with psychotherapy.
This will be a therapeutic journey for me, in other words, the intent is not recreation. The treatment involves pre-session therapy, therapy during the psilocybin experience and an integration process afterward. I am working with a local psychiatrist who is experienced in treating with psilocybin.
I’ve learned a lot about the potential of psilocybin in therapy, especially ‘end-of-life’ therapy, and found Michael Pollan’s book quite useful (How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression and Transcendence). He states that, “existential distress is what psychologists call the complex of depression, anxiety and fear common in people facing a terminal diagnosis.” Apparently, there have not been very successful ways of treating this existential (or end-of-life) distress which contributes to a sense of demoralization and hopelessness.
In studies at NYU and John Hopkins, “some 80% of cancer patients showed clinically significant reductions in standard measures of anxiety and depression”, leading to an increased quality of life, life meaning, death acceptance and optimism. Pollan further states “…the great gift of the psychedelic journey, especially to the dying, is its power to imbue everything in our field of experience with a heightened sense of purpose and consequence.” In the two studies mentioned, most patients rated their psilocybin experience in the top ten experiences of their lives, which is remarkable.
So how does it work? My understanding is that psychedelic drugs don’t ‘add’, they ‘clear away’ what is unnecessary. The drugs are not the healing, rather, they help the patient do the healing themselves.
We all have habitual ways of thinking; psilocybin helps to break these habits of thinking and offers opportunity for a reset – of feeling more in the present and more connected. Patients in the two studies mentioned above typically described the experience as mystical and spiritual.
Pollan writes that “the boundary between the conscious and the unconscious realms of the mind and the boundary between self and other… (when) these boundaries fade or disappear, as they seem to do under the influence of psychedelics, we can let go of rigid patterns of thought, allowing us to perceive new meanings with less fear.” I have included a link to TheraPsil’s website which has content about psychotherapy using a psilocybin and links to research.
However, psilocybin is illegal (since 1974 in Canada); a federal exemption is required to access the drug for therapeutic purposes. B.C.-based non-profit TheraPsil last August helped a cancer patient secure the first exemption under Canada’s drug laws to use magic mushrooms for psychotherapy. Since then, Federal Health Minister Patty Hajdu has used the power she has under Section 56 of the Controlled Drugs and Substances Act to grant 35 patients and some health-care professionals limited exemptions from the law. The process for applying and proving a medical need to use psilocybin is not clear, and the criteria used by Health Canada appears arbitrary (see link to Tyee article below). This is an inconsistent process; some people have been given exemptions and others have not, with no clear reasons for the decisions. Furthermore, the process is dependent on political party positions, elections or change in ministers. There is a need for government to come up with reasonable and transparent regulations for making psilocybin legal and available for medical purposes. TheraPsil continues to assist and advocate for patients wishing to access the drug.
I have received an exemption from Health Canada, and I was surprised to learn from Therapsil that I am the first Canadian with ALS to receive an exemption.
So why would I want to have this experience?
I try very hard to stay positive and be proactive concerning all aspects of my health including my emotional state. But it’s hard, and it’s getting harder. It is a struggle to stay upbeat when my body is incrementally losing function in a way that greatly impacts quality of life. Simple tasks like dressing and moving around are becoming exhausting. Since losing the ability to speak it has become a challenge to stay connected to others. Now I can only type with one hand which has further reduced my ability to communicate with a keyboard – it is slow and tiring to peck away with one finger. Loss of connection, isolation, feeling left out – these are constant struggles, along with trying to get the #%&* mucus out of my mouth. These challenges can easily feed into depression.
Even though I may think and believe in a particular point of view that is positive and hopeful, as I try to do, unfortunately my feelings may not always align with that perspective. While I make these constant shifts as my body weakens in phases, my emotions fight against these changes. So why wouldn’t I want to access a treatment that can improve my emotional sense of wellbeing for my remaining time? I believe that psilocybin-assisted psychotherapy can help me to gain perspective regarding my future and create greater self-awareness and sense of connectedness. The research is solid and feedback from participants is extremely positive. I am grateful for TheraPsil for providing this opportunity.
My ‘mushroom trip’ is booked for early September – I will report back after, but don’t expect any souvenirs.
My photos for this post are from my trip to Scotland two years ago with my daughter Rachel. These are the Callanish Stones, older than Stonehenge, located on the Isle of Lewis in the Outer Hebrides, my ancestral home on my father’s side of the family. It is an otherworldly place that had a real impact on me. Many thanks to the wonderful Kara Smith for taking us there at dusk..
(https://therapsil.ca/TheraPsil – non-profit that works to provide access to psilocybin for therapeutic purposes. Excellent website with loads of information
How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression and Transcendence” Michael Pollan. Penguin, 2018.
One concept I have spent time considering over the past year is that of legacy. As we get older or become seriously ill, I suspect many people do. We ask ourselves, “What will my legacy be?”, beyond the stamp collection or what is left in the bank.
Webster’s Dictionary defines “legacy” as “something transmitted by or received from an ancestor or predecessor or from the past.” Examples of legacy might be, “ She left us a legacy of a million dollars”, “He left his children a legacy of love and respect”, or “The war left a legacy of pain and suffering”. So legacy can be positive or negative. It can be quantifiable or not. If we base our understanding of legacy on commercials and ads it would seem that it is defined as financial or funds or assets we pass on to family or our community. But this is just a partial view of legacy – there’s much more to it.
Part of my tangible legacy is the charity I founded in 2003 – Cool Arts Society. I started this organization to serve adults with intellectual disabilities in the Central Okanagan because of the need in the community; my son wanted to take art classes and there was a lack of opportunity. So, almost 20 years later the group still exists, has a location in the civic art centre and enjoys a solid reputation in both the local arts and disabilities communities. One of my core values is to make a difference in the world and Cool Arts definitely reflects that.
I’m also proud of the research thesis I wrote for my MA about social equity in the arts for artists with intellectual disabilities. I worked really hard on this under-researched topic; the 200+ page work is published online through UBC. Individuals from different parts of the world have contacted me because of their shared interest in improving access in the arts. I feel like it made a difference.
I’m a ‘doing’ person, and it can be difficult for me to separate my values and/or legacy from ‘doing’ or what I have ‘done’. As we get older or sicker, we are not able to ‘do’ things that we think might provide legacy. In his book, Being Mortal: Medicine and What Matters in the End, Atul Gawande says the following:
“As our time winds down, we all seek comfort in simple pleasures – companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. We become less interested in the rewards of achieving and accumulating, and more interested in the rewards of simple being. Yet while we may feel less ambitious, we also become concerned for our legacy. And we have a deep need to identify purposes outside ourselves that make living feel meaningful and worthwhile.”
I really love the musical, Hamilton. This was a surprise because the premise sounded pretty dry and I wasn’t sure if the musical genre would be to my taste. However, the energy, creativity and passion really impressed me. If you haven’t seen it, you can view the live recording of the Hamilton Broadway performance on the Disney Channel and I highly recommend it. There are several themes that run through the production and one of them is that of legacy. Let me share some lines of the finale song that had me in tears:
“Is it enough?
Let me tell you what I wish I’d known When I was young and dreamed of glory You have no control Who lives, who dies, who tells your story?
And when you’re gone, who remembers your name? Who keeps your flame? Who tells your story?
Legacy, what is a legacy? It’s planting seeds in a garden you never get to see I wrote some notes at the beginning of a song someone will sing for me”
Is our legacy also a reflection of our values? I think so… in fact I believe the way we have lived our lives may be the most significant part of our legacy. Values are what others will remember about us beyond our favorite joke, our signature drink or the way we did our hair.
I have identified my own values as follows:
Integrity & honesty
Seeing beauty in all things
Connection with others
Justice
Making the world a better place
Identifying our values can be a difficult exercise (in my experience). However, at this point in my life I’ve done enough personal development work to observe that these five components always come up in discussions about values. I hope this is how I am remembered.
Sara’s gang
Gawande, Atul, Being Mortal: Medicine and What Matters in the End. Doubleday, 2014.
I love gardening. It makes me happy to be outside mucking around in soil, planting flowers and then watching them grow. It’s one of those hands-on activities that I enjoy and one of the reasons I don’t get manicures. Last year I was able to tend to my little townhouse garden without any problems.
Last month on a lovely sunny day, I thought I would do some garden cleanup and spread some of nice moist compost I had picked up at Buckerfields. I raked and pruned and sat on the edge of a raised garden bed to get closer to the plants, which was fine until I realized that I could not get out of a sitting position. The strength in my large leg muscles and torso are weakened enough that I could not get myself up from such a low height. There is a chain link fence close by and after skooching very slowly along the edge of the raised bed I was able to grab onto the fence and after a few attempts pulled myself up. Good grief. No more sitting on surfaces lower than a standard chair unless there is someone around to assist.
I continued to work on the other side of the raised bed by standing and bending over. Scrabbling in the soil trying to find a hosta that may have kicked the bucket over the winter, reaching farther and farther, I felt myself tipping forward, and then it was a slow motion fall into the garden. Like a Douglas Fir felled in the forest, I fell with a thunk. What I felt like was a beached whale – this raised bed is where I have many of my beach rocks collected over decades of vacationing on Vancouver Island. Hard and bumpy with some barnacles.
I lay on the dirt thinking that surely someone would see me from one of the neighbouring townhouses. I wondered what they might think if they saw me laying in the garden on top of the plants. Heart attack? Close inspection of roots? I’ll never know, because on this beautiful sunny day no one was outside and no one was home at my unit either. Since I was already down there I figured that I might as well take care of that part of the garden, so I cleaned up debris while I was horizontal in the dirt. Then it took me about half an hour to inch over to a step by the chain link fence, with lots of little rests, to right myself. My arms have also weakened so pulling myself up is not easily done. Good grief again. Obviously I cannot work in the garden unless someone is close by.
Did I feel humiliated? No… the only dumb thing I did was to try gardening when no one was home. It’s just one more thing I can’t do by myself anymore. It was a bit shocking to discover how easily I could fall while standing and not even walking. A week later I tipped over again reaching my closet and landed on top of a bunch of shoes. I have now ordered a fanny pack so that I always have my emergency button and phone with me.
I have participated in a non-profit research program through TDI (ALS Therapy Development Institute) since July 2020. A major part of the Precision Medicine Program at TDI is to try and improve on the current system of patient reported outcomes (ALSFRS-R) using an unbiased data collection system to measure movement. The ALSF-R is a short series of questions about basic functions like eating, dressing, walking, etc.; every month I complete the ALSFRS-R test online. Last July my score was 42, and in April 2021 it was 21 – quite a significant difference. It’s a quantifiable way to understand the rate of progression. My score this spring was lower than I thought it would be, but like anything that is slow and gradual, it is difficult to assess change while in the middle of it. Experiences like my gardening day and my closet mishap a couple of weeks ago are a reality check, in this case confirmed by data. It’s very difficult to predict progression as ALS progresses differently in each person.
I also wear accelerometers (monitors) on my wrists and ankles for 5 days per month. At the end of the 5 days I send the monitors back to TDI in Massachusetts where the data in downloaded. Why do I do this? It’s a way to document my progression in a tangible way and also to contribute to ALS research. The Precision Medicine Program (PMP) allows people with ALS to become partners in ALS research. Participants also gain access to helpful data and tools regarding their disease progression. The website has diagrams that chart my ALSFRS progression and progression according to the data received from the accelerometers. Here are two of the diagrams that chart my progression:
There you go – probably more than you wanted to know about measuring ALS progression, but actually fairly basic stuff. If you are a nerd about this kind of thing, please check out the link below:
Pseudobulbar affect is a condition I had never heard of until I started reading up on ALS. It is characterized by episodes of sudden uncontrollable laughing or crying that have no relation, or seem out of proportion, to how the individual actually feels. Pseudobulbar affect (PBA) is not limited to ALS; it typically occurs in people with certain neurological conditions (stroke, MS, etc.) or brain injuries. In a nutshell, PBA affects the way the brain controls emotion. Obviously, the condition can be unsettling and embarrassing, and for some people, PBA is very extreme to the point of avoiding being in public.
Crying appears to be a more common sign of PBA than laughing.
No kidding. A few months ago I noticed that if I started crying, even a little, it was difficult to stop. People have said to me, “You should cry. Let it out. You’re going through a lot.” However, there are some challenges with doing that:
1) Once I really cry, it’s off to the races – I cannot stop. It develops into sobbing and awful wailing, and can go on for quite a while. Afterwards I have a headache and don’t feel any better about life.
2) As indicated above, the manifestation of emotion might look like a 9 or 10 out of 10 (e.g. loud sobbing and weird noises), but inside my emotion level might be a 3 out of 10. It doesn’t match up.
3) Full on crying can make me gasp or even choke (on saliva). Don’t want that.
Anything can trigger me, in particular, something on TV or music. I sobbed during the first half of the musical Hamilton (stayed clear of the second half). I sobbed during the Mr. Rogers movie. I cry watching stupid sitcoms and reality fashion shows. Any display of emotion sets me off.
The laughing part of PBA is not as extreme for me, but I do find that there are times when I will start to laugh at something inappropriate or that no one else would find funny. I usually catch myself on that. If I do find something genuinely funny, I’ll laugh really hard for several minutes and that’s ok. There is a theory that the character of the Joker in the 2019 film Joker, played by Joaquin Phoenix, had pseudobulbar affect. He displayed uncontrollable and uproarious laughing, and cried when happy.
PBA has also been called emotional dysregulation, emotional lability or my personal favorite, emotional incontinence. A study designed specifically to survey for prevalence found that 49% of patients with amyotrophic lateral sclerosis (ALS) had PBA. There are medications available if deemed necessary.
Norman MacIsacc, Canadian author of The Best of the Worst News, writes that PBA“messes with our ability to control the physical expressions of our emotions…now those levees have weakened, and they burst at the slightest emotion with unruly surges so ungainly it’s difficult to distinguish laughter from sobs.”
So what to do? Sure, there are times when I am feeling genuinely sorry for myself and could shed some tears, but I tend to nip that urge in the bud. I know myself well enough to know it’s a slippery slope with not much of a payoff. Sometimes I write it down instead – seeing my feelings visually on the page gives me clarity. Or I might do or read something to take my mind in another direction.
Of course I feel sad and upset at times. Disappointed. There are many experiences that I was hoping to have. I want to see my grandchildren grow up. I want to make sure that my son who lives with a disability is ok. I want to see all my children grow and thrive in their lives. But we don’t get to choose some things and that’s life. I’m grateful for the experiences that I have had and the family that I have now. I’ve come to terms with living with ALS as well as I can for now, although it is an ongoing process.
__________________________________________________________________________________________________Norman MacIsaac The Best of the Worst News. Insomniac Press 2019 MacIsaac is a leader in the Canadian ALS Advocacy movement.
January 25 marked the one-year anniversary of my ALS diagnosis. Obviously there have been many enormous shifts and changes in my life. It’s been a very long year that included stopping work, losing my voice, losing my ability to eat and drink, a visit to the hospital, an excess of saliva and waning strength in my limbs. However, 2020 also offered opportunities for gratitude and a more acute ability to prioritize, find clarity and further value relationships.
People very often ask, “What can I do?”, or “How can I help?”. Well, if it wasn’t STILL the season of COVID, you could come for a visit or have me over for an outing, but, really, there’s isn’t much anyone can do for me right now. There will come a time when my daughter and I will welcome practical help, but we’re not there yet. I’ll let you know when…
However, here is actually something you can do – sign up as a supporter on the ALS Action Canada website. A group of ALS patients and family members across Canada have been working hard to improve access to treatments and clinical trials for Canadian PALS (People with ALS). I encourage you to please check out the ALS Action website, in particular the Take Action section: https://alsactioncanada.org/take-action/. I am a part of this group, but not in the leadership. The main players are a talented and dedicated group of ALS patients and family members using their formidable skills and valuable experience in the area of policy change and advocacy.
May I rant here? It makes me feel angry that people living with ALS who have limited time left in their lives should have to spend their precious time and energy doing this. I think it’s truly selfless that they do so. Make no mistake – it’s unlikely that they will live to see the benefits of their persistence. Positive changes will chiefly benefit ALS patients who likely haven’t been diagnosed yet.
ALS moves fast. It’s also hitting younger people – although the typical patient is still over 50, there are more and more people in their 20’s and 30’s being diagnosed, and I’ve met quite a few in their 40’s. I recently read about a fundraiser in the US for an 11-year ALS patient, which I found shocking. Unfortunately, the rate of ALS is rising – might be the aging population or environmental factors, but no one knows for sure.
It’s a revolving door and a numbers game. People often don’t realize that the ALS incidence rate is as high as Multiple Sclerosis (MS) because ALS patients die so quickly that there is never as large a population of ALS patients as other conditions. PALs who get really involved and contribute to advocacy have a limited time to do so and so the leadership must constantly shift and change. The lifetime risk of developing ALS is 1 in 400, which is about equal to MS and is five times higher than Huntington’s disease. However, the rapid progression and deaths of people with ALS have prevented the establishment of a critical mass and a loud collective voice. This dynamic is driving our demands for urgent action.
The irony of the fact that I am advocating for myself after many years of advocating for others is not lost on me. One of my children has a disability, so I have spent decades advocating for him and others with developmental disabilities (DD). Some of the same issues apply to the population of people with DD – lack of a collective ‘voice’ and that of being an invisible group. Individuals with DD often cannot represent themselves in order to advocate. I am familiar with the complaint of ‘not being heard’, and the situation of being dependent on others to advocate.
If someone in BC is diagnosed with MS, Alzheimer Disease or Huntington Disease, and directed to the provincial clinic, this is where they go:
The Djavad Mowafaghian Centre for Brain Health on the UBC campus in Vancouver.
But newly diagnosed ALS patients who are directed the ALS Provincial Clinic are sent to windowless rooms in the basement of GF Strong Rehabilitation Centre:
The BC ALS Clinic cannot give information regarding ALS clinical trials because BC does not have any ALS clinical trials, and no information is given regarding possible participation in trials outside BC. Clinical trials are of critical importance to ALS patients. Clinical trials offer a sliver of hope, and are also a way to contribute to research and finding a cure. There are only 2 approved medications available in Canada – both only work to extend lifespan by a few months, so clinical trials are the only way to try out a drug that may help. There isn’t even a full-time neurologist working at the BC clinic, and no respirologist at all. Imagine how disheartening it would be to go for the first time to a provincial clinic like this and realize that there is no hope being offered?
I have not been to the Provincial ALS Clinic. At the same time I initially went to my GP about my slurred voice, a neurologist with ALS experience moved to Kelowna from Calgary, so I have been his patient. Interior Health provides other support like respiratory, speech and occupational therapy, and there is a respirologist in Kelowna with experience in ALS. I’m very thankful that I can stay local with my care.
Some BC ALS patients travel regularly to other cities in Canada (Montreal in particular), and prior to COVID, to American medical centres so that they can participate in clinical trials. Usually all travel costs are covered by the patient, so many patients are automatically disqualified for financial reasons. And, of course, after all the travel and expenses, there is a good chance that the patient may have received a placebo – patients don’t find out whether they really received the drug until the trial is over. I was accepted into the Healy Platform trial in both Seattle and Los Angeles, but travel to the US is not desirable at this time. I thought I was accepted into a trial in Calgary but the deadline was cut off early and I didn’t get in. It just shouldn’t have to be so difficult…
So lending your support for policy changes is no small thing – it really helps. Future lives depend on it.
Tell your MP and MLA that you support better access to treatments and trials for ALS patients. Send an email to Adrian.Dix.MLA@leg.bc.ca , cc your MLA and Renee.Merrifield.MLA@leg.bc.ca (Critic for Health). Request that immediate action be undertaken to significantly improve ALS treatment options and care in BC. The email doesn’t have to be lengthy or scholarly – it’s the number of responses that make a difference.
Happy New Year to you all! And good riddance to 2020!
My intention was to post in my blog much sooner, but the best laid plans… This entry is an update on how I’ve been the last couple of months.
Unfortunately I really crashed emotionally the last part of November. I think the reality of losing my voice, as well as the ability to eat or drink really sank in – it was a very difficult transition. I just can’t risk putting anything down my throat anymore in case of aspiration or choking. Sometimes my mind just goes to musing about some of my favourite foods… like the different flavours and textures of Pad Thai… or the comfort of a really good cheese sandwich with pickles, mustard and mayo. It’s not just the taste of food, it’s the sensation of biting into it or sipping or chewing. There is so much I took for granted that I can only dream of now. I put a few drops of soy sauce on my tongue a couple of days ago and that was a real sensory treat! (Note that I’m a salt person, not a sugar person).
And I felt so tired… and continued to feel very fatigued into December as well as having nausea. Gifts lay unwrapped and holiday cards unwritten. I didn’t even have the energy to brush my teeth, let alone work on a blog post. Couldn’t even knit… which is pretty shocking for me. What looked initially like adjustments to meds and feeding tube formulas ended with me going into ER with failing kidney function and off the chart hypothyroid levels. I came home Christmas Day from the hospital feeling much better, although it will take some time to get the thyroid levels and consequent energy levels corrected. So I’ve spent most of my days napping, reading, watching TV and staring out the window. My family has been absolutely terrific, in particular my daughter Elisabeth who has been caregiver extraordinaire with her trusty sidekick Michael. I am extremely blessed to have the support that I have.
The staff at KGH were wonderful and I have great admiration at both how important their jobs are and how hard they all work. When you’re feeling awful the world becomes very small and anyone that offers competent and respectful care is your hero. However, someone could inform a certain nurse in ER that just because a person cannot speak, it doesn’t mean that they are deaf. She insisted on yelling at me, but I didn’t take it personally.
I’m looking forward to having more energy in the next month or two. I am very grateful that all my children and their families are in good health as well as my mother and siblings and their families. There is much to be grateful for. Many people sent me holiday cards, emails and texts and although I haven’t responded to many, please know that I really do appreciate your support and encouragement. It really helps to know that others are thinking of me and wishing me well. Thank you.
Best of the New Year to you all! I sign off with a quote from Simon Fitzmaurice:
I am not a tragedy. I neither want nor need pity. I am full of hope… Hope is not about looking for a cure to a disease. Hope is a way of living. We often think we are entitled to a long and fruitful Coca-Cola life. But life is a privilege, not a right. I feel privileged to be alive. That’s hope.
It’s Not Yet Dark by Simon Fitzmaurice. 2017, Hachette Ireland. This is an excellent memoir by Irish Filmmaker Fitzmaurice. Died of ALS in 2017, aged 44 leaving his wife Ruth (who has also written a memoir) and his 5 children. There is also a documentary about him narrated Colin Farrell.
Sara’s Life with ALS 