Support Michael Mariant

$48,484 of $55,000 goal

Raised by 247 people in 16 months
Created May 28, 2017
On Friday evening Dec 4th 2015, 46-year old Michael Mariant, suffered what was believed to be a stroke while enjoying an anniversary dinner with his family at a restaurant in SLO. His partner, Dawn, recognized what was happening quickly and rushed him to the nearest hospital. He was transported by paramedics from French Hospital to Sierra Vista Hospital where specialists could further assess his condition. Due to his getting to the hospital quickly, he was administered the drug TPA and survived his first stroke.

Since that first incident, Michael has now suffered over a dozen degrading neurological events of varying intensity and resulting in deficits in functioning. In January of 2017 he spent a month in the hospital after another “big one" hit, and he is still recovering from the affects of that event.  He has been to over a dozen different doctors/specialists in the SLO and Santa Barabara areas and they are still unable to find a cause for the continued strokes. The next step is to go to LA or SF areas to get a more specific diagnosis at a university hospital, and potentially go to a specialized neuro-rehab clinic away from home to regain more functioning and hopefully drive again.

It has been a rough past year and a half, with Michael having to give up work with Semester at Sea and letting go of sharing his love of photography with others (for now) by closing High Sierra Workshops.

It still is a long road to recovery, so we have set up this Go Fund Me campaign to help raise money to cover the medical expenses that have incurred, and to cover expenses for future treatments as well as unexpected expenses such as food, gas, hotel stays, medical bills, etc. and to allow Michael to focus his attention and energy on healing.

 Michael is well respected and loved by all he meets on his travels through life.  He is a talented photographer, amazing teacher/storyteller, and one of the kindest people you ever encounter.  We know he has the strength to get through this and will do so with the continued love and support from his family, friends, and community. Please consider helping this wonderful family in their time of need.

 Thank You.
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Today marks one year since we started this campaign and we never thought a year later we would still be struggling with this. We’ve said it many times in past updates that we thought it would only be a couple of months, the doctors would get a handle on what was going on with Michael’s health, and we would be back on our feet soon. Michael struggles with not being able to work for well over a year now. High Sierra Workshops and Semester at Sea both not only provided financially but also spiritually and emotionally for Michael, as he so enjoyed doing what we loved.

But now, one year later, we finally *might* have some direction as to what is happening with Michael, after another trip to UCLA last week.

ON THE HOME-FRONT (aka how the family is doing):
We need to thank everyone who supported us over the past several months since the last update as it was an usually trying time for us. Our regular day-to-day living was exasperated with many unexpected expenses, including costly repairs on both vehicles, the refrigerator dying, followed by a clothes washer that died shortly after! The incredible help from donors kept our heads just above water when it wasn’t looking good!

In addition, Michael was back in the hospital in April after another major neuro attack, as well as having a serious fall that was coupled with unconsciousness. Since then, his deficits continue to decline slowly and the attacks, while mild, are increasing in frequency, occurring almost weekly now.

Of upmost importance to us during this upheaval is to try and keep not just a sense of normalcy for the girls but a routine that is spiritually and emotionally enriching for both of them. Those of you who know the girls will not be surprised to hear that Rachael (14) still is riding horses and taking lessons weekly, with a lifetime goal of someday owning her own ranch to teach horsemanship! For Riley (13), music and singing has always been her calling and it has not changed. Weekly lessons with a vocal coach have been constant for her, with some singing (and now guitar) performances! We feel this normalcy for the girls is just as important as finding out what is going on with Michael. Your support here on GoFundMe also insures that this continues for the girls

We spent last Monday back at UCLA for a follow-up. The diagnosis was both surprising and confusing. In short, they do believe Michael is suffering from some form of encephalopathy, a brain disease, but also clarified the possible type.

Related background: Since his teenage years Michael suffered from migraine headaches. What was odd was that ever since that first neurological episode back in December 2015, when this all started, his migraine headaches have gone away.

We share this because we learned two things: one was that Michael was actually suffering from cluster headaches, equally painful to migraine headaches but medically different, and, two, that the medical term ‘migraines’ extend beyond just headaches. Basically a migraine is an “insult” or attack on the brain but yet there are different types of attacks. Headaches are the most common and are what most people think of when they hear the word “migraine”.

There is a very rare and serious type of insult called ‘sporadic hemiplegic migraine’ that occurs in 0.01% of the population. The symptoms mimic that of strokes except that, unlike strokes that have an immediate onset of symptoms, with this disease the symptoms slowly increase in intensity. Sufferers physically recover quicker than stroke victims but the cognitive deficients can be longer lasting.

(We’re getting this explanation from the internet, so forgive the clinical explanation!)

This disease is the result of a genetic defect or mutation with the first onset of symptoms can occurring typically as the result of extreme stress, head trauma or medical complications.

(For those that don’t know, Michael had a severe ski accident about 25 years ago with significant head trauma, paralysis and coma. And — despite years of newsroom and Associated Press deadlines and running his own business — just prior to his first neuro event in December 2015, he was under levels of stress he had never dealt with before.)

The seriousness of the disease is two-fold: physical symptoms of the attack are based on the brain “shutting down” as the neuro attack intensifies, and includes paralysis unconsciousness, and then coma. (This explains Michael’s paralysis during attacks, as well as his recent fall due to unconsciousness.)

The seriousness is compounded with cerebral degeneration that accompanies the physical symptoms. The longer the episodes occurs without diagnosis and management, the greater the chances the cognitive functions (executive, memory, attention, perception, visual, language) do not recover and become chronic. Studies show that in the majority of cases 12 months is the marker for the onset of permanence. We are at 30 months.

Good: Michael will now be seen by UCLA’s Migraine Unit, a research facility that is regarded as the best in the nation. We are awaiting for insurance approval of the referral (again) and then he will be scheduled for his first assessment.

Bad: The doctors believe that the episodes are occurring so frequently now that he is most of the time in the middle of an episode or recovering. He recovers quickly, over a week or so, but not completely before the on-set of the next episode begins.

Good: They will perform genetic testing to isolate the exact mutation or defect to determine if this becomes familia hemiplegia migraines, meaning the defect could also exist in Rachael or Riley.

Bad: The doctors are concerned about the progressive cognitive decline, but until the hemiplegia (neuro episodes) is successfully managed, they can not determine the severity and permanence of his cognitive decline. The doctors say it can take at least six months to a year before they can manage it, and then begin to determine the extent of the cognitive defects that are permanent.

This news was difficult for Michael to hear, as it means that we are at least another year until we know what’s going on, until Michael might recover, and we can hopefully return to a normal life again.

We started this a year ago today, hoping it would be only a few months. Here we are now looking at at least another year. But there is no doubt we are surrounded by our friends and family, and that means the world to us. As Michael spends most of his days home-bound now while Dawn will be starting her second year as an elementary school teacher in the fall, just hearing from friends via social media and letters in the mail is extremely uplifting. All your support is uplifting!!! It’s a long road ahead, but at least we now probably know the route we need to take. That’s some of the best news we have had since this all started.

Thank you again — ten-fold — for all your help and support. It keeps us afloat, both literally and emotionally. As the trips to UCLA will now increase in frequency, we will only update when we get any new information or news.

Warm love and hugs from all of us!
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UCLA Update #1:

Yes, update #1 because there will be return visits to UCLA. The time spent at UCLA was both promising and also frustrating. After hours and hours of poking and prodding, lots of questions about medical history and neuro incidents, and several cognitive and memory tests, the neuro specialist said, with a scrunched-up face, “I’m sorry but I don’t have an answer for you. I’m really sorry. We need more time, more tests and more looking in to your case.”

While we were optimistic that they would have an answer, it was not surprising that they didn’t have an answer on the first visit. It was almost as if the doctor himself was the most upset that there was no answer!

Part of the problem was that the large case file that was sent from our neurologist to UCLA for their review, made it to UCLA but never got in their hands. All they had was the two-page case summary from the insurance referral. But the medical history and tests results they want now are far more than what was originally sent to them.

While they wouldn’t rule out a degenerative brain disease, they want to rule out other possibilities first. First on the list is bacterial encephalitis, which is tested through a spinal tap. Michael was already tested for this when he had an extensive spinal tap last year in the hospital that left him bedridden for several weeks, but UCLA did not have those results.

So since the return from UCLA, we have been collecting ALL the medical records, as well as pathology and radiology test results from the past 2+ years of hospitalizations and acute rehab time. So far it is over 150 pages plus several DVDs of brain scans. Once we make copies for ourselves, this will all go in to box and get shipped directly to the doctor and his research team.

Then we wait while they review the case file and determine the next round of testing. We are anticipating a PET scan (a nuclear medicine imaging method that detects gamma rays in the brain, says Wikipedia) to look for signs of neuro degeneration, and hope that our insurance will cover it. The promising part of the UCLA visit is they will not give up. They are researchers and they are determined to find an answer.

Our next scheduled appointment isn’t until the end of May, but we hope some tests will be scheduled before then. In the mean time, Michael will work to hold his title of “king of naps” to keep the headaches, dizziness and cognitive fatigue away, while the whole family will head “back home” to Lake Tahoe for a few days during the spring break, celebrating the 20+ years since Michael and Dawn first met there ... a MUCH needed break, bonding and togetherness for the whole family.

Thank you to everyone for all your support and your words of encouragement. It all truly mean so much to us and allows us to keep chugging along with positive spirts!

With much love to all,
Michael, Dawn, Rachael & Riley
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Important Update: Good News & Uncertainty Ahead

It has been awhile since we posted an update, mostly because we weren’t getting anywhere with getting to UCLA. This update is a bit longer, as we explain in some detail the past several months and also what Michael might be suffering from, something we have not shared before. We have said they were strokes since that was the assumption from doctors, even though symptoms didn’t match-up quite right. It was the neurologist he has been seeing this summer that began digging into what really was afflicting Michael.

It was back in May last year that we started this GoFundMe, with hopes that Michael would get to UCLA during the summer and we would be free of financial concerns as Michael no longer was able to work at all. Dawn was able to stay home to take care of him and deal with the various doctors and appointments. Everyone’s support was beyond belief and we were humbled by the outreach and donations. It made the difference as we spent the summer months visiting specialists as they tried to narrow down what was happening.

We never expected that this would have continued for almost another year. At the end of summer last year, with no end in sight yet, Dawn began teaching full time at an elementary school. Donations were still coming in here and there and were a great help to supplement Dawn’s paycheck. Michael still was unable to work.

But back in July, Michael had another neuro-episode that landed him back in the hospital for several days. Michael’s neurologist at that point opted for UC San Francisco (because of better research/test availability in this specific neuro area) over UCLA but after several months of back and forth, our insurance rejected UCSF as it was out-of-network. Then Michael had another neuro-episode in September, right as Dawn started working again, and we were back to trying to get in to UCLA.

September turned to October, then November, and on to December with nothing but running in circles. Fighting to get doctor referrals, UCLA not getting the correct authorizations, being sent to the wrong department at UCLA, starting over with new authorizations, case file not at UCLA, doctors no longer in that department... on and on.

In January this year, Michael’s neurologist himself got on the phone with UCLA trying to get it resolved and hit the same circles and dead ends. At this point, the neurologist’s office staff took over to get it worked out.

The good news is that we now have an appointment at UCLA in early March. And the doctor at UCLA is the one that our neurologist originally wanted but we’re told wasn’t available any more.

The doctor at UCLA specializes in Frontotemporal Lobe Degeneration. This is the uncertainty that is ahead for us.

Back in mid-December, Michael had an appointment with his neurologist and many things came from that meeting: Michael no longer could drive, he couldn’t return to any type of work, and the doctor shared that he believed that what might be happening is a type of degenerative brain disease.

All three things hit Michael hard, especially the theory of what could be going on. But he still tried to do things he loved. He tried photographing some bald eagles with a friend (he shared some of the pictures on Facebook) but struggled the entire morning. (Michael generally can handle about two hours of any activity before he begins to falter and either need a long break or be done.) For the first time, it was clear that even photography was becoming more difficult.

Despite this, Michael had plans to travel to Nevada this past weekend with close friends to photograph some classic steam trains in the cold of winter for three days. The first weekend of February, Michael had another significant neuro episode, more setbacks for him, but still wanted to do the trip.

Michael has a passion for trains, so this trip was something he was looking forward to for many months. He also knew he couldn’t do the whole day schedule each day and would need breaks. He was very nervous about the trip but was in good hands with his close friends.

The first day was short, but Michael still opted out of evening shooting events. He shared some of those first day photos on Facebook as well. The second day started early and Michael felt good about the pace until about 10am, when it hit him hard. He opted out of the afternoon shooting sessions on the train, instead having his friend drive him to locations to photograph. But the strain was hard and he had difficulty shooting. By evening, the exhaustion and struggle was a lot. He decided to just do the early morning session the next day, then be done for the weekend.

But by morning, he was still struggling and he chose to stay at the hotel and not go out. By late morning, he was doing worse and, after talking with Dawn, his friends chose to drive him back home immediately.

While the pictures he shared on Facebook from the steam trip give the appearance of a “back to his old self” Michael, it was a struggle unlike anything he has done since this all started. And was a reminder that he just can’t do that anymore.

It was only two days later, on Tuesday, that we received word about the appointment at UCLA. Despite the difficult weekend, that was good news to hear.

Upon researching the UCLA physician’s background and neuro field specialty, we learned more about the type of degenerative brain disease Michael’s neurologist suspected.

Temporal Lobe Degeneration is an atrophy of the brain. The symptoms listed match what Michael had been going through for the past two years. A steady cognitive decline, behavioral and emotional changes, difficulty in speech and thought, and difficulty in responding to audio and visual stimuli, often leading to a complete shutdown, such as what happened just days before during the steam train trip.

While we won’t know anything certain until we visit this specialist next month, we are hoping that the doctor could rule out this disease. It is this optimism we are holding on to right now, even though the symptoms list reads like Michael’s personal history.

This disease has no cure, with only medication to help with the agitation and emotional distress, as the cognitive decline continues. There is more to the “down the road” with this degeneration, but we will end this update here until we after we see the specialist next month.

Both of us, and the girls, want to say thank you to everyone that has continued to donate to assist us over the past many, many months. From the donations here on the website, to gift cards to the generous and kind offers of lodging in Los Angeles during our upcoming visit, you have all made a difference and it has made it easier for us to face this uphill challenge and what lies ahead.

For now, Michael is going with the positive attitude of enjoying everything in life that surrounds him. We are planning fishing trips, time in the mountains and, most importantly, visiting friends. We will update in the weeks ahead as we know more. Please keep us in your thoughts and prayers. Thank you to all.

With love and hugs,
The Mariant Family.
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On this day of expressing thanks, all of us - Michael, Dawn, Rachael & Riley - are filled with gratitude for all that everyone here have helped us with over the past many months. Everyone's financial contributions have literally been a lifesaver for the entire Mariant family. On on this day of Thanksgiving, we say a big thank you!

It's been a difficult and challenging month for Michael with many setbacks after a couple neuro episodes. But the good news is that insurance approved Michael going to UCLA for testing at the neuropsychology unit. We will work next week on getting appointments set up for the next step in this journey.

As we are surrounded by family on this Thanksgiving, we are extremely grateful for our larger family - YOU - that has been there for us every step in this journey.

Happy Thanksgiving everyone! ❤️❤️❤️
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$48,484 of $55,000 goal

Raised by 247 people in 16 months
Created May 28, 2017
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