[tom-pritchard]

I remember a psychological suggestion, some years ago, that positive thinking (self fulfilling prophecy) helps an individual attain a positive result. Subconsciously we make choices that helps us get to what we want to achieve and avoid things which which would distract us and make us miss our target. Depressed or addicted people tend to make wrong choices and end up going in that direction.

I have strong feelings about the quality of life. Now being an ALS victim, I want to abide with that attitude as opposed to lengthening my life. I know that people who are born with disabilities or experience them later in life, being it mentally and/or physically, sometimes figure out how to achieve beyond, what the rest of us think are, their abilities. Helen Keller is certainly one profound example. There have been many other people who have astounded us in what they have been able to achieve.

I have finally been diagnosed with Bulbar ALS, eighteen months after me speech started slurring, so far, but my mind and limbs are still functioning adequately. I anticipate that it will get to my lungs next and I am not inclined to have a tracheotomy. I have had a good and interesting life and, in spite of not living as long as I thought would be normal, I am adjusting my expectations of what my future will be. I don’t plan to become totally dependent on my loved ones while they watch me deteriorate. On the ALSFRS-R I have dropped from 48 down to 36, eating and swallowing is becoming very difficult and cumbersome. My speech therapist has been a big help with my current issues and my family.

[tom-pritchard]

I lost two cousins to ALS, I have the same symptoms as the first one was afflicted with. His sister was diagnosed with familial ALS. Her twin sister died from Cancer before the brother did.

Terminal diseases, in general, do not allow a victim to maintain a quality of life. My first job after grad school (Health Care Administration) was as a Nursing Home Administrator. I remember that experience from 45 years ago. We had a lot of patients who had terminal diseases. Before Alzheimers Disease was identified (and still is not figured out) we, in patient care conferences, we referred to them as COBSY victims (Chronic Organic Brain SYndrome): Dementia, Alzheimers, stroke victims, cardiac, COPD, ALS, Myasthenia gravis, Cancer, and how many other maladies? That experience really ignored quality of life. Our staff did a good job of caring for our aggregate grandparents. Many had already lost their grandparents, some their own parents, some – siblings, some – children. In that kind of institutional care facility there was a lot of emotion, concern, and sympathy.

Now that I retired 15 years ago, on my 55th birthday, after having experienced a heart “attack” which resulted in one posterior stent. Four years later I got a second stent – anterior, and now my blood pressure and cardiac health is fine. I had a prostate issue which is now under control, but speech started slurring 18 months ago, my speech degraded, excessive mucous and saliva. Neurologists finally confirmed Bulbar ALS, which my male cousin started with as well. His sister started down in her feet and legs. We had an uncle who had multiple sclerosis. My conclusion is that I inherited genetic mutations as did the first cousin who was diagnosed with sporadic. So far my coordination and limbs are still okay, but at this point my slow eating and drooling are embarrassing.

My wife and I had health proxies made 12 years ago. Now I have to get a MOLST, Medical Orders for Life Saving Treatment. We thought health care proxies were sufficient. But clinicians can ignore them. A physician has to sign a MOLST and then other clinicians will respect and abide by them. I do not want a tracheotomy to breath or a feeding tube to be nourished. I do not want to degrade to become of vegetable. I don’t want to burden my spouse or our families and friends. I am confident that I will make it to 70, maybe 71 but not the statistical 77 or 78. Our to the ages my parents and some of my grandparents reached. My paternal grandmother made it to her 90s.

THe quality of my life has already been compromised. My uncle with the MS was in a wheelchair for over 40 years. I know that there are disabled people who adapt to their disabilities and still live incredible lives. If I can’t breathe normally or eat, which is already a problem, I don’t want our savings spent on keeping me alive. Like I said, I don’t want to degenerate to being a vegetable (I like vegetables but I am not a vegetarian or a vegan).

We spend and waste too much money on people with terminal diseases, like ALS, with no benefit to the individual who is afflicted.

My best friend, since 7th grade, retired from being a NYS Trooper. He was enjoying his retirement until he was diagnosed with a brain tumor. He underwent surgery (they removed as much as they could), radiation and chemotherapy, and went downhill for 27 months before he finally died. The impact on his family was difficult. He was smart, respected by all, and I will never forget his continuous and stressful deterioration. I am not going to go through what he went through. We have Hospice programs all over the country. Assisted suicide is legal in some of the European countries but not in ours. States are allowed to allow them. Maine, Vermont, New Jersey. Colorado, California, Oregon, and Washington do permit it and Montana does if a court orders it. Hospice seems to be our alternative. I am working with neurologists, and ALS center, and my Primary Care Practitioners (PCPs), and I have contacted our Hospice.

That is my choice. I think any family and friends of people with terminal diseases are more sensitive to ALS victims other terminal disease victims and their families. For that matter a widow, widower, and children who have lost a loved one may also be sensitive to ALS and any other terminal disease victim.

The only reason for length of life instead of Quality would be for helping the production of a cure that is effective and corrective. Dr. Jean-Martin Charcot figured out the disease 152 years ago in 1869. ALS is not in the top ten or fifteen causes of death. Pharmacological corporations are looking for profit and testing possible cures is expensive and takes a long time. The only way they will want to create a cure is if if will make their company richer and shoot their stock prices up. It isn’t to save our lives.

I am curious about stem cell therapy and genetic mutation correction (CRISPR). Some pharmaceuticals have come up with products that lengthen our lives but there are only two possible cures, at this point that I am aware of (NU9 and WVE-004). That is why I am focused on stem calls (our own) and CRISPR. I suspect the majority of Sporadic victims are probably descendants of ancestors who died before ALS started to kill them. I think we all have mutated genes and I think that genetic correction will be the best cure. Since ALS is not a big cause of death, numerically, genetic solutions will solve our and a lot of other causes of maladies and terminal diseases.

[tom-pritchard]

Thank you Bill. I retyped it into a document and I am reposting it now:

I am a 69-year-old Caucasian male. Fourteen years ago I was told I had a heart attack however the solution was a posterior stent. Four years later, I was asymptomatic but I got an anterior stent installed because of diagnostic test results. I was the youngest of four siblings. My mother experienced a series of mini-strokes and she also had cardiac issues. She lost a lot of weight and contracted into a fetal position. She could not speak but we could tell from her eyes that she was alert and sensitive until she finally died. She had a second pacemaker when she passed away. My father and the older of my two brothers (#2) had bypass cardiac surgeries and my #2 sibling has had several stents since the bypass. Our Father had to have his pacemaker turned off to allow him to pass away because he had cancer of his tongue, he was a long-time smoker, and that cancer blocked his ability to swallow food. My remaining oldest brother recently had a pacemaker installed. The #1 sibling was our sister who had polio when I was born. We all have had high cholesterol issues. The #3 sibling, another brother, had many health issues, including cardiac issues. My cardiac health seems to be under control with no more stents and no pacemaker.

Eighteen months ago my speech started slurring. My Primary Care Physician (PCP), in SW Florida, did a strength and coordination/balance exam on me and ordered an MRI of my brain. He referred me to a speech therapist with whom I had four appointments with. The result of the MRI had a radiological report which indicated that I had experienced two strokes. There had been no apparent consequences from those two strokes. My PCP also referred me to a Neurologist who ordered several tests for me. One was an oxygen test overnight at home, a referral to a psychologist who did a series of cognition tests on me. A blood test to test for Myasthenia gravis (MG), an overnight sleep test at a hospital clinic, and a barium swallow. She had suspected a loss of oxygen intake due to sleep apnea. And she was also focused on MG. The results of all of that testing displayed some degradation but no source was confirmed. The barium swallow was done in upstate NY where we spent our summers.

I contacted another Primary Care Practitioner, a Family Nurse Practitioner, in upstate NY and he referred me to a Neurologist, and ordered another Barium Swallow. The Neurologist came to a tentative diagnosis of Bulbar ALS and he ordered a Nerve test, a pulmonary test, another barium swallow and I went to an ENT specialist because I have had sinus issues for decades. The second Barium Swallow exam was not very different than the first one. The nerve test was on my left side from my foot to my leg, to my hand, to my arm and the left side of my tongue. The results did not confirm the tentative diagnosis, at least not at that point in time. I still do not know what the results of my pulmonary test were. I had another blood test for MG and is was negative

I have lost two maternal first cousins who succumbed to ALS. The first, a brother, started out with symptoms like I am experiencing. His younger sister had lower extremity issues. He was diagnosed with sporadic ALS, she was diagnosed with familial ALS. Her widower has been briefing me with a lot of information and advice. He has been a big help. Her twin sister passed away first, from Cancer.

I still do not have a prognosis of how much longer I will live. The more recent Neurologist prescribed Riluzole to slow down the spread of the ALS I am experiencing. He referred me to an ALS Center in Albany, NY. I met with a nurse, a physical therapist, a social worker, and two Occupational Therapists. They and all of my other practitioners, have been professional, sensitive, and helpful. The ALS Center’s Medical Director had just retired but she had evaluated all of my diagnostic tests and concurred with my Neurologist about his diagnosis of Bulbar ALS..

I have come to a conclusion that all ALS is genetic. According to clinical sources, 90% to 95% of ALS victims are sporadic and 5% to 10% are familial. In 1869 a French Neurologist, Dr. Jean-Martin Charcot, identified ALS and 152 years later, here we are. He is considered to be the “father of Neurology.” I don’t know if geneticists can trace our afflictions back to our ancestors. They had much shorter life spans back then than now, and medical practices did not yet have antiseptic surgical protocols, they did not have the technology to analyze genes, and they did not have antibiotics, which we have been overexposed to. The recent pandemic has had more devastation to elderly people. Researchers and scientists are anticipating more severe pandemics in the future. Consider what we have experienced in the past.

My current Neurologist has prescribed Riluzole for me to slow down the degradation and progress of the ALS destruction of Neurons. There is another medication, Radicava. A couple of possible cures have finally been developed. Researchers in the Northwestern University in Chicago have come up with NU-9 and the Wave Life Sciences corporation in Cambridge. MA, has developed WVE-004 dealing with C9orf72 gene mutations. NU-9 will not be tested until 18 to 24 months, WVE-004 may be tested on humans later this year. I am also curious about CRISPR and stem cells, some of which have been taken from afflicted people’s MSC in their bone marrow. (NeuroNata-R – NCT-01363401) which is injected into their Cerebral Spinal Fluid with helpful results.

[tom-pritchard]

I just spent an hour and a half writing down my situation, experience, and thoughts and I had to edit it and it disappeared. I am not going to waste another hour and a half trying to put it in again.

[tom-pritchard]

I am 69, living in my 70th year. I retired on my 55th birthday, 14 years and 8 months ago after I had a stent put in my heat. Four years later I got a second stent. My father and oldest brother had multiple cardiac bypasses my oldest brother has had several stents after his bypass. My mother was on her second pace-maker when she passed away after a series of mini-strokes. My father had to have his pacemaker turned off because he had cancer at the back of his tongue preventing him from eating. He passed away about 12 hours after his pacemaker was turned off. My oldest brother has just recently had a pacemaker installed. My other brother passed away (my #3 sibling, I was the 4th) several years ago he had a lot of medical issues. My sister had polio when I was born and she was cured. She has high cholesterol which is chronic in our family, including me. My heart is reliable now, no need for a pacemaker or any more stents.

!8 months ago my speech started slurring. My Primary Care Physician (PCP) tested me for strength, stability, and coordination, thereafter he ordered an MRI of my brain and the radiologic result indicated two strokes which I had been totally unaware of. He also referred me to a speech therapist who helped me as best as she could in four appointments. My Florida PCP also referred me to a neurologist who referred me to a psychologist for cognition, memory, and coordination, a sleep test for oxygen intake overnight, at home, and a sleep test at a hospital facility. I also went to an ENT physician because I had sinus issues. The Neurologist suspected Myasthenia gravis (MG) and ordered a blood test, which was specifically for MG, that test was negative. She also ordered a barium swallow, which was done in upstate NY (where we spend our summers).

During these 18 months, since my speech started slurring, my speech has degraded severely, my tongue is weaker, my swallowing is much more difficult, I cough a lot more due to mucus and saliva, my sinuses are much more bothersome. I have some arm and leg muscles twitching sporadically. My PCP in upstate NY is a Family Nurse Practitioner, he is professional and sensitive, he referred me to a neurologist and ordered another barium swallow for me and another blood test for MG. The blood test was still negative. THe Neurologist immediately suspected Bulbar ALS. I went through a nerve test of my left foot, leg, hand, arm, and the left side of my tongue. He also ordered a pulmonary test of my breathing capacity and strength. I still do not know what those results were. The nerve test did not confirm anything. I also went to an ENT physician who prescribed a nasal spray called Azesterol, which is helping. I am drooling now and I also use nasal strips before I go to sleep. I had two maternal first-cousins who were afflicted with ALS, the older of the two started with the same symptoms I am experiencing, he was diagnosed with sporadic ALS. His younger sister was diagnosed with familial ALS (Familial is 5% to 10% of victims, sporadic is diagnosed for the other 90% to 95%). The widower, of the second cousin victim, is encouraging me to be proactive and keeps sending me helpful information. I am working with another speech pathologist/therapist who is very professional, sensitive, helpful to my issues. My NY Neurologist prescribed Riluzole which I am now taking. I also went to the Lewis Golub ALS Center in Albany, NY a few days ago and met their team of a nurse, and physical therapist, two Occupational Therapists, and a Social Worker. They were also professional, sensitive, and helpful.

At this point, I suspect that ALS is caused by genetics and therefore all victims are familial. Unlike cancer, which can be caused by genetics as well as by environmental issues such as pollution, chemicals, occupational exposure, and food. The French Neurologist Dr. Jean Martin Charcot identified ALS in 1869. !52 years later, along with much more genetic research, we or they cannot necessarily track our ancestors back far enough to know what our ancestors may have passed onto us. They had shorter life spans than we experience now. Sanitization of Surgery. anti-biotics, which we have been overexposed to, and other modern technology has helped us last longer. But those of us who are afflicted with Muscular Dystrophy and ALS seems to me, anyway, to be genetic. Some other afflictions are probably genetic as well. The current pandemic has been dramatic and ut is more impactful on elderly people. Researchers and scientists suspect that there will be worse viruses that will attack us in the future.