We sincerely had a wonderful time in Capitola!

It was painful to watch Eric struggle to get across the sand. Thankfully, we had a beach umbrella which he used as a walking stick, but it was still very difficult for him. He said that his PT includes walking on uneven surfaces.

The condo we stayed in was two-stories, and he literally had to sit on the stairs at one point to gain strength to make a safe passage. He climbed them only as needed.

From being extremely strong and capable to not being able to do much of anything in such a short period of time has taken its toll on Eric... in many ways.

It's hard for the children to witness, too, though they are doing everything to help him. Landon literally offering his arm to help his dad get to the car.

Parking in the disabled spaces is convenient, but getting in and out and walking anywhere is difficult. I haven't yet processed just how far is "too far" when I feel our car is near.

Two weeks from today we go to the naturopath (7/3). That day can't come too soon! We've even called back to see if they've had any cancellations.
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Thanks, everyone, for being my support network. I feel held and more confident, but still wonder what each moment holds for us. It's scary when the mind wanders to unhappy possibilities. So, I stay as present as I can. Inviting Eric and the kids to join me in that space.

Okay, I met with my mom for 2-1/2 hours this morning to proceed with a plan. 

I've decided that SignUpGenius is the most useful platform at this time; it allows for date-specific signups as well as not-dated "wish list" types of signups.

We will include the link(s) here when they are ready.

Also, here is an update on Eric:
---He started taking the medication (for ALS) last week and has not shown any signs of negative reactions; we don't expect it to show evidence of "improvement" as this particular medication is meant to slow down the muscle degeneration.

---Yesterday he went to physical therapy and learned new exercises and has been approved (thus far) for 100 visits.

---Thursday we will have our appointment with the Social Security office for disability. I understand we need to file our 2016 and 2010 taxes in order to qualify. A friend has volunteered to do this for us and is meeting me on Saturday to help gather the paperwork (the down side of being self-employed!).
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---A person we know is allowing us to use a condo (we are doing a trade) in Capitola for Father's Day and we are planning a beach trip with the whole family.

In order to gain clarity on our whole situation an needs, share ideas, and perhaps reveal some concrete plans and new resources, we gathered today in a "Brainstorming" session. It was AMAZING.  I am so grateful for the women who attended, and for my mom, Tess, for leading us!
We came up with some good stuff - clarifying various needs, sharing resources, and so much more. We looked at "best possible outcomes" and worked with this vision.
The areas of "needs" that rose to the top were related to: emotional support (for Eric and each of us), physical safety and wellness for Eric, transportation, home/property care and upkeep, goods, groceries / caloric intake / shopping, financial stability / bookkeeping / taxes, business growth, quality / down / alone time, etc.
Tonight my mom and I will touch base once more and come up with some very specific "first steps" to either delegate, ask for help with, or do ourselves... and we will share the support needs/tasks that could be filled by others.
This was a VERY HELPFUL process and not only was I able to "see" a bigger picture with the ideas/thoughts of others, I was able to FEEL the "okay-ness" of HAVING NEEDS in such a situation.
It gave me a sense of perspective, touched me deeply to be so supported, and gives me hope that I can create a rough plan and support network to get us through whatever comes.

We are deciding between a couple of doctors. They all specialize in Lyme and other chronic issues. All centers have patients with ALS. Our intention is to discover the CAUSE of Eric's health decline AND HEAL what is possible to heal.

These are our choices:
- Dr. Raj Patel, Foster City. Works alone, but has an assistant. Charges $585 for the first appt. (1 hour), $555 for the second (1 hour), and then half hour appointments after that are $355. Full payment due at booking. He does not have an opening until Aug. 8.

- Pacific Frontier Medical includes Dr. Steve Harris (a Lyme specialist) and is in the same location as Dr. Patel. He works with two other practitioners. One is an ND (Jennifer Sugden); the other a PA (Yvonne Sorenson). Supposedly they work "together" but the likelihood of seeing Dr. Harris is low and would happen further down the line. They charge $775 for the first appointment (1.5 hours), then $365 for additional half hour appts. They can get Eric in as early at 6/13 or 6/19. They take a deposit at time of booking.

- Gordon Medical Group has two locations - San Rafael and Santa Rosa - and two NDs that are taking new patients. Dr. Parpia works methodically and tends to do things naturally and leans toward IV therapy. Dr. Large uses both pharmaceuticals and "nutraceuticals" (she leans toward herbs and supplements). They charge $760 for the first visit (2 hours) and then $380/hour after that (but I'm not clear if that means that a half hour appt. would be $190?). As they do not charge to make an appt. (and I spoke to them first), I made an appt. with Dr. Parpia, but it's not until July 3.

We are feeling a bit overwhelmed with the decision and the financial implications - all the trips/gas/days to the Bay Area, the therapies that they recommend (knowing these will be additional expenses) and so on. I have a couple of friends who are talking about putting together a fundraiser, but we want to know what we are getting in to first. Then we may consider it as an option.
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Eric should receive his medications for ALS tomorrow via UPS (it had to be ordered by mail). He's extremely tired but managed to consume over 3000 calories today! He also went to the DMV and picked up a disabled parking placard. *sigh*

Yesterday, Eric and I spent half a day at UC Davis Medical Center's ALS Clinic.

The appointment consisted of examinations by ALS specialists, advice from a dietician, support from a social worker, and more.
The team of doctors had diagnosed Eric's condition as "Motor Neuron Disease" - aka ALS or Lou Gerhig's disease. According to the specialist, they consider "Clinically Probable ALS" as an actual diagnosis, but somewhat of a "stage" in that it has not been shown to be something else and is in the earlier stages.

When we asked about Lyme, they reiterated that none of the Lyme testing that they had done indicated Lyme. We are confused and sad, and trying to be both "realistic" AND hold a larger picture of potential causes and cures. For one thing, of course, NONE of us want an ALS diagnosis!

As soon as the medication comes in to the pharmacy, Eric will begin taking the only medication available for ALS which helps slow down the deterioration process - a new one will be available in the fall. Physically, he has lost even more weight (now at 158), which is the number one concern with his current state of health.

In other words, gaining and keeping weight on is IMPERATIVE to his longevity IF he has ALS, and critical for his well being in an regard. He is needing to consume about 3000+ calories per day to nourish his body which is constantly working.

We are interested/willing/seeking the "next step" in finding a second - holistic - opinion, but do not want to run off on goose chases that are both costly and futile. This is where we seem to be "stuck." Who can truly look at Eric's WHOLE picture and give him a clear and accurate diagnosis? Who has the skills and confidence to accurately diagnose and CURE this dis-ease with us?

The "problems" with the medical doctors' conventional approach and the ALS diagnosis is that the view is narrow on the one hand, and merely a process of elimination of what it is NOT on the other hand.

Where we are now in our fundraising:
- We applied for disability online last Tuesday, and have a follow up appointment mid-month to get things going. The ALS clinic nurse told us to "expect" to be turned down TWICE. This may mean 6-8+ months with no disability income, and Eric clearly cannot work.

- With the donations (financially and food, etc) we've received so far we have been able to pay our May bills and feed our family. June is a new month, and our needs are still around $4000 per month to pay for our baseline living expenses (including rent, gas, and groceries) and we are looking okay, as long as there are no additional or unexpected expenses. But it'll be tight, for sure.

- We WANT to make sure we have the means to pursue alternative doctors/therapies so that we are not succumbing to an ALS diagnosis merely out of economical limitations. Based on the calls we've made so far, we are guessing a holistic doctor's visit to be around $700-$1200 for a first visit and $300-$500 for additional ones.

- We need to have and implement a longer-term plan to get us through until Eric's disability begins. All 4 of the kids are working (multiple jobs) this summer as am I. Clearly, the need to be the "breadwinner" has shifted to my shoulders, which is pretty overwhelming to say the least.

Additional Notes:
- I have set up a private FB group to help me organize, brainstorm, and list resources/ideas/etc: Resources List, Plan of Action, Needs, etc. Feel free to join ONLY if you are interested in being an active support in some way. I could REALLY use help!

- Eric needs to gain weight ASAP! Foods like bananas, berries, avocados, coconut oil, cheeses, peanut butter, ice cream and yogurt, and such need to be part of his 2-4x/daily smoothie intake. And real food, of course.

- Emotional and other support is welcomed, but please refrain from offering a "diagnosis" or "advice." I completely understand people wanting to help (which is what we are asking for, right?) and WE ARE SO GRATEFUL for the outpouring we've experienced from dear friends and even strangers. However, over the course of this rocky journey, many "helpers" have actually become rude, and even shaming, which is the last thing either of us need right now.

- When you look at, speak of/to, or think of Eric - especially when speaking near our children - we ask that you NOT project the diagnosis of "ALS" at this time. For us we are still seeking clarity and perhaps a more "true" diagnosis. Instead, please imagine him in his healthiest state; strong and able. His body/muscles are working overtime (hence the calorie burning) and so surrounding him with intentions of inner peacefulness would be ideal.

- We are grateful for the convenience and familiarity of GoFundMe. I consciously selected it because it allows for ongoing monthly donations, yet it does take a percentage of what has been given. For those who want to donate directly to us, if you have a PayPal account you can "send money to friends or family" for no charge to us: [email protected] . As well, our PO Box is in the original post if you wish to send a check.

- We may not be able to keep up with Thank-You's. So many forms of generous offerings have come our way (books, essential oils, website links) and through various channels (email, texts, FB, snail mail, phone calls) that we simply may miss replying with a formal Thank You. Please forgive us. We are doing our best.
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Love and Gratitude for you and your support!

Eric is taking LOADS of supplements and is off the original antibiotics for Lyme. This seemed to make him tired, not better. In order to gain weight, he is now drinking protein shakes between meals (with ice cream!), and to help with his muscles started taking amino acids. He has received cranial sacral a few times now and each time feels really good - can feel it in his spine and head. Another friend offered him physical therapy and he has been working on strengthening his legs, stomach (he hunches often as he has lost core strength), and arms.

Tomorrow I will meet with a woman (a mother of one of my twins' friends) who will help us get the process going for disability. On Friday, we will go to the ALS clinic for further testing.

We have been SO GRATEFUL for the many donations and as we are concerned that this may have been an initial wave of support, and the prognosis is still so uncertain, I have little by little increased the goal so we can proceed with the care Eric needs and maintain the basics of day to day living until (if) disability kicks in.

Our next step - as we see it - is to find and work with a holistic doctor. We have collected some names and are checking them out.

I am about to create a "Plan of Action" and "Needs" list to bring clarity.

If you have already donated, or cannot donate financially, one thing that would be VERY HELPFUL is to not only SHARE our GoFundMe campaign, but to add a few words to your post to make it more personal.

Hugs and Love!

Except Eric's muscles (especially in his legs) were starting to cramp severely and what he was experiencing was more than just fatigue. He felt utterly weak as if he was losing his strength as each day passed.

By the third time he went to Chapa De, and more blood was drawn and tested, they didn't think it was mono after all - didn't know WHAT it was - but noticed that the only thing that showed in his blood work was that over the course of the three blood draws something was indicating his muscles were deteriorating. Perhaps some kind of autoimmune? They said they had nothing left to offer him in terms of tests or diagnosis, and suggested going to a neurologist.

The next obstacle was to obtain health insurance through Covered CA (since he did not qualify for MediCal) so he could see someone outside of the Indian Health Services clinic. 

At that time, we were starting to think he might have Lyme based on input from others' experiences, so Eric insisted that Chapa De start treating him with antibiotics for Lyme. As well, he went to our chiropractor, who reviewed all his lab tests and noted that Eric's blood work did not indicate "negative" for Lyme but was marked "inconclusive." He started taking the antibiotics about May 1 and hoped for the best. He also started taking many supplements, as our chiropractor found he was extremely low in many essential minerals - Zinc, etc. - as if he was not absorbing any nutrients. 

An active and healthy 6' tall man, Eric's weight dropped to 161 lbs. (healthy weight for him is about 185).

After waiting until his insurance kicked in on May 1, Eric was able to squeeze into to see a General Practitioner at UC Davis Medical Group in Auburn on May 3. She gave Eric "urgent referrals" to both a cardiologist and neurologist, but those were weeks out. As well, she was seriously concerned that this was a degenerative muscle issue. 

At this time, Eric was having a hard time walking, lifting his arms and even breathing was noticeably altered.

On Tuesday May 9, we took him to UCD Medical Center in Sacramento to their Emergency Dept. After about 7 hours of various tests and waiting (nothing conclusive still), he was admitted. When Eric was released on Friday, May 12, they had drawn even more blood, collected 24 hours of urine, done a spinal tap and an EMG (a muscle/nerve test which was far more painful than the spinal tap, which was not too bad, surprisingly). 

With nothing conclusive, he was released from the hospital with a "Clinically Probable ALS" diagnosis and referred to the UC Davis ALS clinic / specialist.
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The appointment for the ALS Clinic is set for June 2 and he will spend several hours there and undergo a series of additional tests. He learned that his urine lab test showed no signs of heavy metal poisoning. So as his symptoms continue to rapidly worsen - in spite of the antibiotics and supplements - we are in a waiting game with no significant income, no savings, no credit cards, and as much faith as we can muster. We are clearly considering this "probable" diagnosis an OPINION and we are waiting for other experts to find the true issue.

As two self-employed parents, Eric's ability to work is the foundation of our family's income. Currently he is very weak, struggles to walk, takes several naps/rests per day, and therefore cannot do repairs, build anything, or perform any other aspect of his normal work as a contractor.   

Our Projected Needs:
Physical - 
What do we need to support him in staying strong?
Who can diagnose him best / most accurately?
How do we proceed for the BEST path for him? 
We are THANKFUL that several friends have offered cranial sacral, acupuncture, chiropractic and physical therapy services in donation.

Emotional/Mental - 
Thankfully, we have a trusted, amazing therapist who is willing to work with us, not to mention a very loving community. We are clear Eric needs extra support right now and he is seeking it from free group meetings at places he trusts.
Our family provider and "protector," Eric tends to worry often, so changing his mindset is going to be a foundational piece for him. The rest of us are doing our best to support him and ourselves.

Financial - 
Due to a variety of life obstacles, our family has struggled in huge ways and have NO RESOURCES or access to any. We don't have credit cards or savings and simply live week to week, sometimes day to day. Though we plan to apply for disability, with only a "probable" diagnosis at this time, we don't know if Eric will qualify. As well, he has been self-employed and may not have been paying in to it during the required time frame.
To cover the BASICS - rent, utilities, groceries, and gas - our family needs to bring in about $4000 per month. And we don't know how long this will go on, or what kinds of additional expenses we will incur.

Logistical -
As the family "organizer" I am so overwhelmed, that I simply don't know where to begin! How do we prioritize needs? How do we get disability, or other resources?
In additon to being a self-employed spiritual intuitive and mentor, I have a couple of part-time jobs, plus a house full of teens to feed and mother. 

Spiritual - 
We aren't even sure what this means at this point, but it's clear that our lives seem to be about UTTER SURRENDER and TRUST right now. 

Our Immediate Plan of Action: 
1. Operate as best we can as a family unit supporting one another, and allowing the support of our community whenever possible. We are immensely grateful for the contributions of money, services, and groceries we've received so far!

2. Find ways to generate funds to help us maintain our household AND pay for any holistic practitioners that may not be covered by Eric's insurance. We will NOT settle for an ALS diagnosis without seeking alternative healers.

3. Do the footwork and keep the faith.

Ways You Can Help:
Make a monthly donation, or a one-time gift: 
-Here on our GoFundMe campaign
-Directly to my PayPal account (unlike GFM, there's no charge to us if you "send money to family or friends" - just ask me for my PayPal email address )
-Mail a check to: Eric Wetterstrom, PO Box 845, Meadow Vista, CA 95722
Find a place to contribute/support us with another need in our closed FB Group (or if not on FB, I can send you a list/suggestion). 

If you are spiritually-minded and want to support my business, sign up for one of my Spiritual Evolution programs through my website at $19/month (for weekly online meditations and community) or $39/month (for two spiritual classes each month plus the meditations).
Send us words of encouragement, pray for Eric's full recovery, and KNOW he will return to complete health.