https://www.gofundme.com/f/support-walkers-recovery-from-severe-mecfs
Why My Care Requires So Much Money
I feel the need to explain why getting well with this illness requires so much money, time and labor. The few people with ME/CFS who truly get well, or close to well, have devoted their lives to this process, and they often have family and friends who also have made sacrifices of money, time, careers and even their homes in an effort to assist with the search for wellness. It’s understood that there are no standard treatments for ME/CFS, and patients are essentially left to figure it out on their own. This is outrageous and tragic, but it is the current reality.
Many people with my illness have had success in finding places, usually pristine wilderness areas, that are much more free of mold and environmental toxins than most places in the Eastern US. This process is called mold avoidance, and there are books and protocols involved in it. Sixteen months ago I began a journey of mold avoidance, with my sister Sammy as my caregiver. I had been bedbound, had cranial-cervical instability (likely linked to my illness), and was motivated to get better through this process.
Q:. “If you’re so sick after so much time doing mold avoidance, isn’t it just a waste of time?”
A: So far, mold avoidance has been the most helpful treatment I’ve done, bringing me from bedbound to walking, reading and talking a lot more. But it’s not a panacea, and didn’t heal my damaged ligaments, which got even worse after an intense infection (probably covid) in March.
In addition to being a helpful treatment, it was an important experiment that yielded valuable data on the effect of environment on my health.
The Covid Pandemic impacted our mold avoidance journey in many ways. We lost the momentum that we had because we had to hole up in sub-standard housing that made my illness worse. We also had less ability to get out and around to parks and other outdoor locations that have helped my healing in the past. Camping, which allows me to be in good outdoor locations for long periods of time, became very difficult as campgrounds and parks were closed, getting supplies was difficult, and we had to be extremely careful as the virus itself would be more dangerous to me in my vulnerable state. As it is, I ended up getting infected with something in March, and that set my baseline health back further.
At this point I am planning on having a surgery in early October to repair structural damage, my CCI. This surgery has greatly helped many with ME/CFS that have the related Cranio-Cervical Instability. I will need to (and I plan to) keep pursuing mold avoidance after my surgery. I want to continue to heal in pristine locations to continue to improve my health. I have found some locations that I feel good in, and I plan to keep searching until I find a place that I can have a permanent home. For this next phase after the surgery I plan to utilize a mobile “clean room” to sleep in and avoid any potentially moldy/toxic buildings that set my health back each time I spend time in them. After my surgery it will be some time until I feel I can camp and sleep on the ground, so the mobile unit is a good solution for the period after my surgery. It will keep me safe and on a healing path and allow me to try locations to find a more permanent place to heal.
Erik Johnson, one of the creators of mold avoidance (and a co-author of The Beginners Guide to Mold Avoidance), invented the concept of a “MECU”, a “Mobile Environmental Containment Unit”, which in his case was an all metal, insulated trailer with shower. This is ideally made of materials resistant to contamination, is easily washable, and also movable. This allows for trying locations for any length of time and then moving on if it is not good, or when the air changes in a good location (such as during the frequent western forest fires that have a great impact on the air).
The less sick one is, the easier tent camping is, but for a very ill person recovering from surgery, a cargo trailer with a good bed is ideal. This is not an RV. It’s a much more simple, insulated, easily cleanable box with a window, bed, and not much more. I plan to fundraise to help with the trailer costs, which I estimate to be 12,000.00.
Caregiving:
I also want to explain how my healing care impacts mine and my family’s economic situations. For the past two years I have needed a caregiver essentially 24/7. My sister Sammy has filled this role primarily and my mom has as well. Sammy has not worked or been compensated for caring for me for all of this time. My mom has missed months of her work and sacrificed her salary as well. My dad has also taken FMLA leave and sacrificed some of his salary. One of my parents may need to quit their job entirely soon to take care of me, so that Sammy can resume her life. We have not received any state or other support to help with caregiving. We have also not needed, yet, to hire any caregivers, but that could happen.
Labor costs- caregiving
Sammy – 1.5 years of lost income – 23,400$
Mom – 2 months lost salary – approximately 7,777$
Walker – lost income of 4 years of being sick, hard to estimate.
Future cost: One parent quitting job.
I do get SSI – 500 dollars a month. This is very low because I got sick with one semester of college left and did not have enough work history to get SSDI
Other Expenses:
Cross contamination entails why sometimes people need to replace many belongings like bedding, clothes, etc, even cars,. which can be expensive. The most successful mold avoidance stories we know often involved people switching out vehicles, often using rental vehicles for awhile and/or living spaces such as rvs many times in their mold avoidance journey as well as replacing clothes often and spending many nights in hotel rooms. This might seem unreasonable or unfair, but with the reality of how cross contamination and immune hypersensitivity works, this is often simply what people need to do to be very successful. We have had to utilize rental cars, switch out vehicles, and dispose of all of our belongings and get new clothes, etc, numerous times already. Having a clean mobile living unit should help reduce the need to do this, and ultimately settling into a clean building on a good site, that is the goal which should further limit any contamination and need to dispose of personal belongings. And, the more well I become the less any contamination should impact me, in theory.
Other ongoing expenses for my care: Though I have health insurance, much of my care occurs outside the health care system because there are no protocols or known, standard interventions that cure ME/CFS, only symptom mitigation care (and that is minimal as well). So I have compounded medications and peptide treatments that are helpful but not covered by insurance. I also have utilized numerous supplements, as well as herbal and nutritional interventions that have in some cases been helpful.
Though we have done a lot of camping, which is relatively inexpensive, since the pandemic has begun we have had to rely much more on temporary housing, hotels, and air b and bs. This has been very expensive for us. Having the mobile living unit should greatly reduce our housing costs.
Having a condition that requires a lot of expenses beyond what the health care system can provide, and which requires a family to sacrifice their own income (which is at the same time desperately needed) in order to literally be caregivers, this has caused a very difficult situation for us in every way. In other words, at the same time that my family needs a great deal of resources to help me with my health crisis, they have much less ability to do so because our collective ability to make money is greatly reduced by our need to directly care for me. No income for me and Sammy. Reduced income for my parents. Fundraising has been a blessing which has allowed me to continue my healing process. At this point I am trying to fundraise for the mobile living unit…
More about Walker’s Environmental Sensitivity, by his caregivers:
Walker has Mast Cell Activation Syndrome, an immune system problem that causes hypersensitivity and inflammatory responses to various environmental triggers, without a standard allergy.
Theo Theoharides, a prominent Mast Cell Activation Syndrome researcher, noted in this talk that mycotoxins are potent mast cell degranulation triggers and that they cling to surfaces, contaminating items that have been exposed to them to the extent that sensitized people cannot be in proximity to these objects.
The central difficulty of getting Walker better is that, since there is no FDA approved treatment, let alone cure, for ME/CFS, we are forced to do a ton of exhaustive and exhausting detective work to figure out his path to health. What this means is that we have to look at a lot of examples of recoveries and scientific evidence and theories and piece them all together to find a full path to health.
In Walker’s case, as discussed in his theory of ME/CFS etiology, we have been lucky enough to find some glaringly obvious pathologies, such as craniocervical instability, which causes brainstem compression and severe illness. However, because he doesn’t have a history of injury to the cervical region, the cause of the craniocervical instability is unknown. We strongly suspect environmental factors, as well as infection, but without further scientific research we can’t know for sure. That means that if we want Walker to achieve full remission we have to try and avoid the factors that caused this issue in the first place, as well as getting surgery to correct it.
In addition, it seems like if there is still underlying inflammation, it’s possible for the instability to progress lower in the spine, and we want to do everything to avoid that so that walker can have the most minimal surgical intervention. This means that in addition to the fusion surgery and “mold avoidance”, we may have to continue working with specialist doctors to try and find the root cause of the inflammation, as well as employing experimental and occasionally expensive regenerative techniques, such as peptides, stem cells, and platelet rich plasma injections into his lower spine. If you add up all of these things, they are not just a medical and practical burden, they are an extreme financial burden as well.
It is unfair that since ME/CFS research is drastically underfunded that patients and their families are forced to solve really complex puzzles like this one without much institutional support. But on our own, we can’t do much to change that, so we have to work with the world as it is, which means that to get Walker well we need to fundraise a lot in order to pursue the care that has helped Walker and others get much better.
Some examples of costs:
- Quote from an anonymous mold avoider:
- “I spent 22k euro per year in my first two years of mold avoidance. It brought me from very severe ME/CFS to mild/almost completely recovered. That would be about 25k dollar per year. But i got money from my health insurance for a caregiver which was about 4k per year. I spent about 5k per year on dealing with my old contaminated stuff, another 7k on rental housing, 2k on supplements, about 2k on new stuff like phones and clothing, 1k on camping equipment in the second year and the rest which is about 6k per year on hotels when i couldnt find another tolerable normal rental (First year) or campgrounds and log cabins (second year).”
- Whitney Dafoe’s (a very severely ill patient) parents have been quoted as saying his care costs about 100,000 a year.
- Based on the public stories of many mold avoiders, especially those who have been successful, it seems many are spending at least 30,000 and probably more, in expenses for a year. Many have switched vehicles or RVs more than once per year, and had additional costs in car rentals, airbnbs, and hotels on top of that. Many have had to totally replace their clothing and bedding at least once if camping, and usually much more than that. These costs do not even factor in problems unique to craniocervical instability, as many mold avoiders do not have severe, disabling craniocervical instability.
State of Fundraising
This is the most current fundraiser. according to need we will be adjusting the goal soon. However, there are many ways to help. We can still use money, but there are also the following things to think about, mentioned in this update:
Ways to help (other than financial)
Dear TEAM WALKER:
We sooooo appreciate financial help! WE also are grateful for your thoughts and prayers. Walker needs a lot of help though. Initially, the change in environment was helping Walker heal and mitigating symptoms. Since his (probable COVID- severe respiratory and pulmonary symptoms that were treated in the ER) infection in March, 2020 things have taken a downward turn; his spine got worse and he is in a ton of pain. If anyone has experience with Search Engine Optimization, we could use your help with Walker’s websites. If you are good at scientific research, we could use some help with that. We intend to convert a cargo trailer into a mobile living space for Walker, and would also like to build a small house for him when we find the right property (looking in the southwest right now). So construction and carpentry help much needed. And finally, don’t forget about ME/ CFS activism! This is a much neglected disease in terms of research! And research is way underfunded.
**** Quick medical update: Walker just had an updated MRI. Results show that his CCI has worsened; we are scheduling him for the Invasive Cranial Traction with Dr. Bolognese. This surgery will indicate whether he is a candidate for the fusion surgery.
****** Walker now has 2 websites that everyone should check out!!
http://openletteropenmedicinefoundation.com/
And
https://walkerstorz.com/
(that one will be published in the next few days)
Check out his sites to learn more about ME/ CFS activism, and to view Walker’s art, listen to his music, and read his writing!