In June 2012, Mike rushed Squeak to University Hospital’s Conneaut Brown Memorial Hospital emergency for slow speech which occurred overnight. After receving test results, the medical staff concluded she had no serious issues. What was not explained to Squeak- why all her pain from the past had ended on or about June 2012.
About a month later, on July 05, 2012, Mike took Squeak to ER at the Cleveland Clinic Hillcrest Hospital in Mayfield Heights, Ohio. Mike’s son, Danny, knew a doctor at the Cleveland Clinic who was at Hillcrest. After the two talked, he admitted Squeak using ER as an entry point, to by-pass protocol.
Hillcrest’s medical team kept Squeak for two days on a ICU floor with blood screening every three hours. She received many MRI and two MRAs and had two neurologists review her test results. The neurologists concluded that all tests given to Squeak demonstrated no serious issues.
After Squeak was released from Hillcrest, she and Mike did follow-up visits to Dr. Hunt, Squeak’s family physician.
Due to her failing health, Squeak retired and sold off the restaurants in December of 2012. She began to assist Mike in his research work to establish an ALS protocol to treat and possibly save her.
In December 2012, Squeak’s personal physician, Dr Hunt referred her to his personal neurologist at the Ashtabula Clinic.
We received an appointment at the beginning in January, 2013, whereupon, that medical team ordered several blood profiles to determine a bacteria event: sending blood to an outside lab. After several weeks of testing, no issue was found. Then, finally, an EMG test, ordered late February, 2013, tested positive for ALS, however, Squeak’s neurologist wanted a second opinion from the Director of neurology at the main campus of the Cleveland Clinic. On March 1, 013, Squeak and Mike met this neurologist, Dr Kuensler, who continued on as Squeak’s primary neurologist, who concurred that this was, in fact, Amyotrophic Lateral Sclerosis, better known as ALS or Lou Gehig’s Disease.
THE TEST THAT QUICKLY LED TO THIS ALS DIAGNOSIS WAS GIVEN TWO YEARS AND NINE MONTHS AFTER SQUEAK REALIZED SOMETHING WAS VERY WRONG WITH HER AND SOUGHT MEDICAL HELP! MIGHT SHE HAVE HAD A LONGER SURVIVAL PERIOD, IF SHE HAD BEEN GIVEN THIS EMG TEST, AND DIAGNOSIS AND TREATMENT, ACCORDING TO A STANDARDIZED MEDICAL PROTOCOL WAS RECEIVED, WHEN SHE FIRST HAD SIGNS OF DISTRESS?
At the March 01, 2013 consultation with Dr Kuensler, Squeak and the doctor started a Cleveland Clinic ‘My Chart’ interactive interface, so she could have immediate connect with the Clinic: It proved to be a great tool. She and Mike asked Dr. Kuensler about ALS; in particular, about the trigger that starts ALS. The doctor said they had no idea,but they believed ALS was randomly triggered, with a two year to five year survival expectation, with no resolution, standard protocol of treatment, or cure available.
ALS affects the motor neurons, the cells that initiate and control movement of voluntary muscles. ALS primarily causes a slow degeneration of the nerve cells that control muscle movement. As a result, people with ALS gradually lose their ability to control their muscles.
Scientists are working to develop biomarkers for ALS that could serve as tools for diagnosis, as markers of disease progression. Such biomarkers can be molecules derived from a bodily fluid (such as spinal fluid), an imaging assay of the brain or spinal cord, or an electrophysiological measure of nerve and muscle ability to process an electrical signal.
Even though the disease has been known since the late 1800s, little is still known about what causes ALS – information needed to affect an effective treatment or cure. According to doctors interviewed for this project, the actual medical protocol for diagnosing and treating the disease has changed little in the past 125 years. Plus, this limited information concerning ALS is mostly disseminated to the doctors specializing in ALS, and not to the medical community, at large. As you will see, routine, doctor prescribed treatments for patient’s ALS- triggered conditions and complications, are many times ineffective and inconsistent, as many specialists, brought in to assist the ALS doctors to treat ancillary respiratory, swallowing or digestive issues, admit they have little or no understanding of their patient’s underlying ALS disease.
On March 05, Squeak and met with Dr. Franjo Vladic, an expert on the digestive process, with respect to bacteria contact: He said he had no knowledge of the elements of the ALS disease and its relationship to digestion. He prescribed calcium to Squeak, to reduce acid reflex.
The next day, Squeak and Mike met a doctor and medical team at Cleveland Clinic affiliate Ashtabula County Medical Center, for a swallowing test and a nutrition survey, They could not answer their questions regarding a proper ALS protocol for treatment of symptoms.The doctor called in to review the swallowing test was very focused on Squeaks inability to swallow, but, again, had no background or knew of any specific protocol for treating ALS patients and their special needs.
On March 07, Mike Helfinstine began his journey to develop an ALS protocol for Squeak. He started with online research and technical analysis, to acquire specific questions for him to ask Squeak’s physicians. They left They both left their Conneaut home and moved in with their son, Danny and his wife, Shannon, who is a nurse.
On April 02, nearly a month later, Mike Helfinstine called Dr Kuensler to ask what type of physical therapy should be initiated, to stimulate Squeak’s motor neurons, muscle, and brain. Two days later, the doctor’s office called back to explain the use of small rubber balls to work with the hands. they said walking is very good, but no speech therapy, as any stress to the body would destroy muscles..
Two weeks later, on April 17, Mike, while researching on the internet, discovered that on March 01, according to federal law, Squeak qualified immediately for Medicare. He called Cleveland Clinic and they started paper, work on her behalf.
Also that day, Mike called Human Arc for the Cleveland Clinic. He asked them to process an application with State of Ohio for medical funding. That began his process to create an ALS study to establish a specific medical protocol, so he could ask questions and better understand Squeak’s medical situation .
On June 12, Mike and Squeak had a meeting with her personal physician in Conneaut, Dr Hunt. Mike explained that he had been working to create a specific ALS treatment protocol and needed his support for his project, as it related to Squeak.He asked Dr. Hunt if it was reasonable to assume that ALS started from bacteria. Mike had done research and discover a theory about Blue Green Algae in the Great Lakes whose blooms produced neurotoxins called BMAA. Here is an exceprt from a sceientific report on BMAA, published on Nature.com by
“The amino acid variant β-methyl-amino-L-alanine (BMAA) has long been associated with the increased incidence and progression of the amyotrophic lateral sclerosis/Parkinsonism dementia complex (ALS/PDC). Previous studies have indicated that BMAA damages neurons via excitotoxic mechanisms. We have challenged rat olfactory ensheathing cells (OECs) with exogenous BMAA and found it to be cytotoxic. BMAA also induces a significant increase in Ca2+ influx, enhanced production of reactive oxygen species (ROS), and disrupts mitochondrial activity in OECs. This is the first study investigating BMAA toxicity using pure glial cells. These findings align BMAA with the three proposed mechanisms of degeneration in ALS, those being non-cell autonomous death, excitotoxicity and mitochondrial dysfunction.”
Doctor Hunt said he did not know, however, he believed that something is wrong in Conneaut, which sits directly on Lake Erie and has Conneaut Creek running from it, because he had seven active patients at the time. Dr. Hunt stated that statistically, if an incidence of ALS was a random event, the ALS onset is 1 per 100k population. By definition, having seven active ALS patients in a town of roughly 3500 makes Conneaut a cluster event. Dr. Hunt went on to point out to Mike that those patients of his were all located southwest of Conneaut’s golf course, moving in a direction towards Gore Road.Dr. Hunt then advised Mike to call the Center for Disease Control in Atlanta. He told Mike that he could not do this himself, because of his HIPPA responsibility.
Afterward, Mike called the CDC. He was told that they had a documented study of a cluster in Northeast Ohio, a while ago, but could not focus their efforts on such a small region. The CDC representatives said they were involved with a National Registry of ALS patients and involved with research to answer questions as to how ALS is being triggered: was ALS being passed on genetically, through parents passing ALS to children, are patients getting ALS through trauma to the brain, or could the trigger be associated with ingestion or contact with heavy metals. Before he hung up, Mike asked if the CDC had studied an environmental issue with respect to toxins. The CDC representative was reading from his data base. After looking for a while, he responded that “that no data was on file”.
After talking with the CDC, Mike called Pam Cazzoli, an ALS regional representative who was doing a survey in this area. He asked her specifically about his theory that neurotoxins from Lake Erie algae blooms may be triggering the ALS cluster events. Ms. Cazzoli told him that a study was initiated in the early 1990s, but dismissed as only rumor, without supporting data.She said her office has documented a cluster in northeast Ohio, beginning in the 1990’s . She said that cluster still is present in her Akron office area.
Ms. Cazzoli went on to say that prions, a protein that goes bad as an agent that spreads very easy into a virus, could insult the nervous system, but there is no technology to detect the virus. Mike told her about his theory about BMAA and toxic algae blooms in Lake Erie, possibly connected to waste products of illegal drug manufacturing (meth, etc,) or illegal interstate transportation and dumping of toxic manufacturing or hospital waste. Cazzoli went on to say to Mike that an amino acid that forms with the protein, could be an interesting thought, in light of due to clusters being created over the years .Mike asked why more research into the trigger behind ALS is not occurring. According to Ms. Cazzoli, a lack of funding for ALS research is the reason for the slow progress in ALS cause and treatment research, here in the U.S.
Next Post – Vincina’s ALS Journey – Year Three
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