I know it's been a while since I've offered an update. For one thing, I've been waiting for some "real news" which I hope will come once we visit Dr. Parpia on Monday. It's been a LONG wait, for sure!

Unfortunately, Eric's ability to walk has been noticeably more challenging these last several days. :-(

On Sunday, when it was hot, he went outside to load up his truck for his weekly dump run (which he had missed last weekend). When he came back in the house he had to sit and cool off for a while. When he got up, I noticed a new, struggled form of walking. The kind when one lifts a leg and plants it carefully. I said nothing about it. Later, when I mentioned putting "Weekly Dump Runs" on our list of requests, Eric responded, "Not yet."

Monday, I noticed a similar thing. He was completely worn after having spent some time outside early that morning. I asked him if he was okay, and he said, "I think I just get overly tired when I do things first thing in the morning." I asked, "What did you just do?" His reply? "I checked the oil level in your car."

That's all he had done and he was having another hard time walking, with those very careful steps.

Tuesday he went to his PT and mentioned his legs seeming to lose strength. The therapist noted - basically DOUBTED his current diagnosis - that his symptoms were progressing so quickly that it didn't "seem" like ALS.

He goes back to PT tomorrow, with two visits (about 60-90 mins. each) per week.

He is taking SO MANY supplements and has started drinking lots of Ensures to try to gain weight. He's still at 155, even though he is (I think) getting 3000 calories per day.

The other interesting thing I notice is that he no longer snores at night. You would think that would be a relief, but it's honestly a bit disconcerting.

Anyway, we are counting down the days until Monday!

When we went to the ALS clinic on June 2nd, the doctor(s) wanted to order a genetic test to see if Eric had the "genetic markers" for ALS. They asked him several questions related to whether anyone in his family had Alzheimer's.


I guess there are new studies that somehow link Alzheimer's to muscular degenerative issues. His mother, now 89, is showing signs of Alzheimer's which he answered affirmatively at his exam.


I was really frustrated for several reasons when she wanted to order this test:
1) THIS IS A $5000 TEST and it doesn't mean ANYTHING! 
See, even the ALS website notes that only 5% of ALS cases are familial (although this clinic told us 10-15%).
SO TESTING MEANS NOTHING...
If he DOESN'T have the genetic indications, he could STILL have ALS, right? AND if he DOES have the markers, then that doesn't actually mean he has ALS... IT COULD STILL BE LYME OR SOMETHING ELSE!


2) BECAUSE this test is so ridiculously expensive, she refused to order the ONE test we asked for: a test for Rickettsia - a co-infection of Lyme disease. She said that she didn't want to look like they were grasping for straws by ordering several tests, especially because the genetic one was so expensive.
(Then WHY NOT start with the CHEAPER test?!?)

As I pointed to Eric I told her, "This is a man who has suffered from depression most of his life. What you are giving him is a HUGE diagnosis. We have four kids! I don't understand why you wouldn't order just ONE test that we are asking for to give us an ounce of HOPE!"

She said that if the genetic test came back negative, she'd order whatever test we wanted. Well... today we received in the mail a letter that the test had been DENIED. Halle-fucking-lujiah! What a WASTE of 5 Grand!
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3) AND finally, WHAT WOULD WE HAVE TOLD OUR KIDS IF THE TEST HAD COME OUT POSITIVE??? I mean, seriously!
So, when we left the doctor's office, we never mentioned the test to our kids.
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We don't have an appointment to go back to the ALS clinic until Sept. By then we will have seen Dr. Parpia of Gordon Medical Group, who will hopefully look at ALL potential CAUSES and do the necessary testing to help shed light on what is going on in his system.

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!