2/22/06
Patient progress notes from Dr. Van Houten, my primary physician:
He has lost almost all the function in his legs and arms, and the only way he can eat is actually put his face into the food.

I got very creative when I was tired of other folks feeding me. I had my plate put on a Lazy Susan with the food at the edge of the plate. That way I could spin the plate with my nose and bite at the edge of the plate!

Dr. Van Houten continues:
He is trying to be as independent as possible. He does feel anxious about this but has decided he’s going to make the best of every day of his life now. I offered him hope and encouragement. Advised him that if he needs antidepressant therapy or any other counseling therapy, he is to let me know.

I’m having a real hard time.
The Miracle that I experienced a short time ago with my arms lifting up from my lap and pushing me out of my wheelchair and my walking in a circle has turned into crying and depression. I can’t understand how I could go from having no strength to having a miracle, and then back to spinning a Lazy Susan with my nose just trying to feel some independence.

Antidepressants are the last thing I want to take. I can only move my head and two fingers on my right hand. If I want food, I have to ask for someone to feed it to me. I have no privacy in my life. I have to go to bed and get out of bed thinking about when it’s convenient for my caretaker. I have to be dressed by someone else. It goes on and on and I am so, so tired of it.

I knew how to end it early…
That was one of the saddest days of my life. Just recounting this memory brings tears.

I was amazed by my brief recovery, but I was more frightened now by my steady decline. Mentally, I always had hope, but my body was not listening.

The stress my family was going through made me feel like a
burden. I was feeling lost. There were no answers. just the everyday chores providing me a dignified lifestyle. I was truly thankful to everyone helping. I was just tired, mentally, physically and Spiritually.

I have a deep background in spirituality. I have a story that I made up from all the other stories I’ve heard in my life.

I believe that life continues on. In my story, I come from a world that exists in a different vibration. All the activities in my life make up a certain vibration and That will be my next destination in that world. I am very conscious of all the activities that I have undertaken in this life and I am very happy with them.

So, I didn’t think I would be afraid to take charge in releasing myself from this monster ALS.

The stress of trying to hold it together when you are an inch from crying is no good, I discovered. Sadness was so easy to sink into. Crying was like having a conversation with another part of me that was weary and lost. No hope is deadly. So many times I lost my desire to go on. And that’s probably why I later was able to help others facing this crisis when I joined the EverythingALS.org team.

Valentine’s Day Feb. 2006
As far as I know, a miracle happened to me, but just as fast as it came to me, it was taken from me. I will never get over that experience of going from elation to depression in a matter of minutes.

Mona went to town that day and bought me a strawberry dipped in chocolate, a heart-shaped cookie, and a new sheepskin pad for my wheelchair as Valentine’s Day presents. I was very thankful, but as I spent that day by myself mostly, I concluded that if I can only eat by laying my face on the table and spinning the Lazy Susan with my nose as I bite food off the edge of the plate, and have to be put to bed at a certain time, often begging,” PLEASE, don’t drop me,” and have to be bathed by someone who will also wipe my butt, brush and floss my teeth, get me out of bed at a certain time and dress me before making me breakfast and emptying my urinal as the day moves on, Fuck This, I can’t even light my pipe.

And even as I write this, I’m getting tears in my eyes again, because this isn’t easy. When I think of all of you still dealing with this, it breaks my heart. After all these years, we still don’t know the answer to the question, “Why us?”

After Mona had returned home for a short while, I told her what had been going through my mind when she was away that day.

“I feel like I’m floating down a stream and I’ve lost all control of where it is taking me. I don’t feel like I can fight this. I give up.”
That day was very sad. There were no signs from the medical world that any help was coming. I was totally thankful and still amazed about the prayer circle, but that chemistry didn’t continue.

I had only two ways out of this. Without anyone’s help or permission, I could stop taking in any food or water. I felt that would be the easiest thing to do until I thought about it little more. My family was going to have to bear watching me for a few weeks slowly wither away. I couldn’t do that to them. I know Mona would have helped me, because she could see I was suffering. The most important thing in my life now was making sure Mona was cared for. I thought, “She is healthy and smiling, and I want to do my best to help her keep it that way!!”

My second choice — and Mona was in agreement with my wishes — my sister’s friend would lease me a house in Oregon and then I could apply for the state’s Death With Dignity program.

The Darkest hour of my LIFE. What to DO? Hang On or Hang UP.

The Death with Dignity Act was approved twice by Oregon’s voters and took effect in 1997. The law requires that patients wanting to die must have a life expectancy of less than six months, as determined by two doctors; must be mentally competent and not suffering from impaired judgment resulting from depression or another psychiatric disorder; must make an initial request to the doctor and then wait 15 days before making a written request that is witnessed by two people; and must be advised of all alternatives, such as hospice care and pain management. The doctor then prescribes the drugs but may not administer them.
As long as my tongue could lick the pills off the plate, I would be good To GO.

My biggest worry was how I would respond when my doctor signed the form stating I had only had six months to live. I had to make a life or death decision and I was in no healthy mental state to make that choice.
Postnote: To see what changed my mind, read next week’s post. And for those who have read this blog and have been inspired to help promote research treatments for people with ALS, please consider volunteering with the EverythingALS.org Speech Project at info@everythingals.org

To my Brothers and Sisters suffering from this unthinkable hardship. I know it’s the worst possible path to have to experience. You have every right to weigh your options. Be sure to share your Hopes & Fears with someone who has a Professional capacity to understand your position and can be a sounding board to reflect back to you some insights.

Please reach out. Please.

National Suicide Lifeline 800–273–8255

10 Minutes a Week to Help with Early Diagnosis of ALS!

The Everything ALS speech study is a Voice Project that will help us discover digital biomarkers using Artificial Intelligence to collect voice and facial metrics/data.
Biomarkers are characteristics of the body that can be measured (blood pressure, imaging, x-ray etc) and used to identify the progress of a disease. There is a need for a biomarker that can help diagnose ALS early on and help with understanding the course of this disease.
Our study will help change the way clinical trials are conducted in ALS. By discovering biomarkers for early detection of ALS and to use them as endpoints in clinical trials we can better understand the course of ALS and get patients on proper treatments early on. This will shorten the clinical trial length and lead to quicker drug discovery and thus get drugs to market and in bodies sooner.
Please consider signing up:
everythingals.org/research

EverythingALS is a patient focused non-profit organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. Together we can help in the fight for Care and Cure for ALS!

We need you gentlemen who do not have ALS to join the Voice project as controls. Your contribution is vital for the success of the project.

Become an Ambassador for the Voice project, contact everythingals.org/research for details about how you can join our Team.

Being an advocate for others less fortunate than yourself can be rewarding and consuming!!

My work with everythingals.org brings me in contact with folks all over the world. I am thankful I can understand their needs because, I’ve been there. I reversed my ALS fifteen years ago.

Once you commit to being of service to PALS you have to understand you have entered, 24 hours a day, seven days a week, three hundred sixty five days a year, world of need.

I needed 24 hour care when I had ALS. I needed someone more than my family to depend on for my sanity.

Now, I am that someone who calls out of the blue to see how your day is going. I am the one doing the research to help find the answer to your challenges. I am the one who can not just forget about those I have met that need support.

My challenge is keeping a balance between my home life (wife), the farm, my children, my community and my advocacy for ALS folks.

I am doing quite well balancing out this challenge. I watch what I commit to and I take naps in between.

This is the other side of McFinn

I advocate for others because, I do it for myself first. I have a wonderful life because when I look in the mirror, I feel my Spirit looking back at me and I like it’s company.

Thanks for coming along on The Adventure of an ALS Advocate!!

When the doctor says there is no hope, he or she means, they have no hope.

I did not follow their lead.

Hope is fuel for the body. Hope is not stagnant, it is an active participation in solving a personal challenge.

Hope is medicine to the body and mind. There is a vibration to the feeling of hope that gives your body a calming effect.

Hope means that you’re a willing participant in investigating every avenue possible to achieve your healing. I will never up is a powerful statement to your mind that you are open to all possibilities.

We live in our minds as much or more than our physical world when we have ALS. My body was still, but my thoughts where bubbling up constantly.

It was easy to give into negative thought patterns. Thats when I came up with my mantra: Peace on Earth, I would say that when negative thoughts came into my mind. It gave me a break to see if I wanted to continue that line of thinking. I use this mantra a lot.

I gave myself hope through my scientific and spiritual faith in a higher power, I believe is, inside me.

I am telling you this because it is so easy to slip into: poor me and not notice how that drains your energy.

I became an advocate for people with ALS by joining EverythingALS. I was given the gift of a longer, healthy life for a purpose. I chose a life of service to others at the age of twenty. Now I am seventy and have a lot of experience caring for the mental, physical and spiritual needs of others. Do you?

We Have Hope To Share

If you have any interest in helping our Team serve the needs of people with ALS, please contact us at info@everythingals.org
We have exciting projects we will share with you.

I have been asking you to contact everythingals.org for support and information. I would like to share a photo of our team so you can see who is on Your Team!!

L to R Murgesh, Aria, Sarah, Deb, Indu, Lisa, Richard, Neil, Sylvia, McFinn.

These are the folks who want to help in any way possible with your journey with ALS.

We could use your help too. We have a Speech Study underway that will be used to detect ALS early.

We need folks with ALS and an equal number of folks without ALS as controls. The Speech Study takes about ten minutes a week of you reading into our computer program. It can be done anywhere you have wi-fi. This is a chance for you to contribute from the comfort of your home to those who need help sooner than latter!!
EverythingALS.org/research is going to help improve patient outcomes and revolutionize the way clinical trials are going to be conducted. The goal: quicker diagnosis of ALS through biomarker discovery and early treatments for ALS patients and better patient outcomes. This is why it is so important to sign up for our Speech Study, we need participants to help us to help you!

I was attracted to how EverythingALS is moving research forward, are you? info@everythingals.org

My hand was weak. That was the only sign of anything wrong, until we went to Mexico on vacation.

While I was walking with Mona, I fell onto the sidewalk. Then, after the fall, I had to crawl in order to climb up stairs.

Whatever was wrong, it was suddenly getting scary!

I went to my local M.D., a knowledgeable physician, but he didn’t know what was happening to me.

My case demonstrates how ALS can creep up slowly before you — and your doctor — have any idea that you have it.

On average, it takes up to 18 months to get an ALS diagnosis.

EverythingALS.org/Research is working hard to change that.

Here’s how you can help: We launched a Speech Project early this year and now have 500 participants to help us find early biomarkers of ALS. This will give people with ALS time to slow down some of the physical symptoms with treatments and gain the support of our community as well as financial support.

We need 500 more participants by August 30. Our study can be done at home and only requires 10 minutes of your time a week to collect speech and visual (facial) data from your computing device.

Whether you have ALS or want to be part of our ALS-free control group, your participation in our IRB-approved Speech Project will help everyone — patients, caretakers, family, and physicians — with an early diagnosis.

I spent a lot of time searching the web to find a reason for my decline. You don’t have to. Join our Speech Project and help take the mystery out of ALS diagnosis.

Join us at everythingals.org/research.

P.S. Anyone who signs up 10 or more participants is eligible to be selected as EverythingALS Champion of the Month and will be interviewed on our podcast, Stories and Innovations in ALS, and featured on our social media.

The 2019 Healing ALS Conference brought me into contact with Patricia Tamowski and Scott Douglas, the team that master minded the event. Patricia and Scott run HealingALS.org, an organization that promotes reversing ALS.

Patricia and Scott collaborate with Dr. Richard Bedlack, who oversees the ALS Clinic at Duke University’s Neurological Disorders Clinic.

DR. Bedlack has confirmed 41 ALS reversals from the records presented to him.

Patricia from Healing ALS asked me to send my medical records to Dr. Bedlack. After reviewing my records, Dr. Bedlack confirmed that I was his number 42 ALS reversal.

This was the confirmation that I needed to share my story.

Once it was confirmed that I had reversed my ALS, the doors opened for me to become part of the world of research.

I am in three research programs at Duke. One is for my genetics, another is for my life time exposure, and the third one happens within 12 hours of my death: the removal of my brain and spinal cord to be studied by Duke and the National Institutes of Health.

My wife, Mona, was not happy about that last decision.

I expressed my determination to her to be as helpful as possible in this fight so others might have a better chance to survive. Mona could see I was dead serious about my part in ending ALS. She agreed to notify the doctor and mortuary that I had chosen for the removal.

Another research program I entered was with the ALS Therapy Development Institute. My blood is drawn four times a year to search for biomarkers. In addition, I participate in a speech recording session once a month.

My commitment to participate in all these ALS research programs leads to why I am really writing this post. I feel it’s important for each of us in the ALS community to join forces.

I need your help.
My pALS are dying. I see them getting weaker and then I never see them again. This is so hard for me to bear, but it gives me deep satisfaction knowing I’m helping where I can.

Can you help?
everythingals.org/research has a little over 500 creative folks who have joined our early detection program. Through speech, facial gestures, and breath, we can start the path backwards to find the cause of ALS.

We do it using sophisticated artificial intelligence (AI) technology, but for our participants, all they need to do is speak into their computer screens for 10 minutes once a week.

We need 1,000 volunteers, half with no disability and the other half with ALS.

That’s when we can upload this data — keeping your identity anonymous — to our AI system and share it with the research community. That means you as well because YOU are part of our research community, and we need you to help us find a cause and a cure for this terrible disease.

It’s a new day in research, but only with your help.

My goal in life completely changed. I wanted to understand the energy that had healed me. I did a lot of reading about spontaneous healing in an attempt to figure out how my nerves had returned to life.

I finally gave up trying to understand it. I live by remembering what happened, and what happened was, a miracle!

For a while I tried to talk to others about that miracle, but then I stopped. It was difficult for people to believe in my account.
So I pretty much kept it to myself for15 years.

Until one day, my daughter Ivy, who is a yoga teacher, mentioned to her student,Julia that I had reversed ALS. Julia had a friend Indu Navar whose husband, Peter Cohen, had ALS.

One day, my telephone rang.It was Indu.

That was the day I started to come out of isolation with my story.

Since I really didn’t know the person on the other end of the line. I had to ask some questions.

“How bad is your ALS?”
“How deep is your spiritual faith”

Peters ALS was so severe that hope was fading fast.

Peter was very open to his Spiritual journey.

We were able to speak for a few weeks about his Hopes and Fears. Then my friend Peter passed into his New Life.

Thank you, Peter. If you would not have reached out for support, I might have never had the opportunity to serve others with ALS.

Indu then asked me to be speak at the 2019 Healing ALS Conference in Salt Lake City focused on ALS reversals through holistic approaches. This was the first time I shared my story with a large audience. On Saturday I gave a talk about my ALS experience. On Sunday I spoke about cannabis and how it can be beneficial to ALS.

I saw over 250 people at the seminar whose lives where consumed by ALS. I had been in their position, and I was one of the very few who had reversed the disease.

On January10 2020 a new organization called EverythingALS was born. Each member had a personal connection. One of their loved ones passed away from ALS. I finally found the support I needed to become an advocate for others with this devastating disease.

Please contact us at info@everythingals.org for support and the latest research and news about ALS.

This journey keeps expanding because we will not stop until we understand the Causes and the Cure for ALS.

After 25 months of uncertainty, I was feeling confident my life was not over. My arms, legs, and fingers felt brand NEW. I was so grateful for every movement my body made.

I was reborn at 57.
Many of my past interests faded away. The Spiritual side of my Life took center stage. I almost passed over, to where??? So many questions and so few answers.

My answer: Be Here Now. My life is turning from, being taken care of,to being the one who cares for others.

I had been a Brother in The Holy Order of MANS for three years. I worked with hospice care for eighteen years. I think I would have made a good Minister.

What Changed
Over the years since my recovery, Life has become Sacred, and I realized each of us is sacred. Everywhere I turn, I see God’s creation. Every day my life is extended, I see new opportunities to be of service to others. I had so many kind people take care of me, now it’s my turn to be one of those Kind people.

I feel a deep connection with folks who are wheelchair bound. My mind was not bound by that chair, but it sure was influenced by it.

Depression tried to get the best of me, and it succeeded quite a few times. I needed someone to whom I could vent my frustrations. Thank you, Mona.

I’ve become a listener now. I needed folks to talk to because when I spoke my thoughts I got a clearer sense if they where true or not. Once you speak it, you have a chance to think, “Do I really believe it?” I belong to an organization called Everything ALS. If you need a place to share your story or you need support, contact info@everythingals.org

Lessons from ALS
I learned patience. Bret and Mona would put up with my negativity long enough for me to see it myself. Now I understand the gift of letting someone show their anger.

Compassion from my caretakers was priceless. I was not always the easiest person to be around. Now I understand how compassion can be medicine to those in distress.

Companionship was a simple gift I treasured. Now I know how valuable a visit can be for someone home bound.

I was afraid of what was coming to get me. I know what fear can bring to pALS (people with ALS). Share your fears with me. I’ve been there!!

I alone had the final option to end my suffering. Mona agreed. I’m grateful I did not take that option, but I had it. That was important to me. I still shed a tear just thinking I had this journey.

Two months after my last ALS doctor appointment, two wonderful Souls were married by me.

I know nothing!! But I Believe Deeply in what I Believe.

McFinn’s Tips and Answered Questions

1. Try to find little ways to thank your caregivers. examples: positive attitude, smiles, yummy treats, showing concern about the needs they have in life.

2. Be aware of the trauma ALS is having on you and your family, you are all in this one together. Keep alert, you may be the one to offer them support.

3. It may be easier to stay home, but take every opportunity offered to you to leave your four walls so you can experience your connection to nature and other people.

4. Read your medical records, see what your doctor is saying about you in them besides what he is telling you.This will give you more control. Knowledge is power but only when and if your ready.

5. Have a couch or bed in the living room, so if you are bed bound you can always be where the action is. I felt very lonely at times in my hospital bed in my office when people were visiting with my wife in the living room.

6. Spend sometime in front of the mirror every opportunity you have, talk to yourself and see who talks back to you, my spirit often did and I was all ears.Keep in mind your mirror may be inside you.

7. Get outside when possible and lay down on the earth, it’s a big battery and the charge is free. At least take your shoes off as often as possible and feel the earth that you were made out of. It’s not called Mother Earth for no reason.

8. Sex, don’t be shy with your partner, get as creative as you need to with your sexual desires. This is no time to be bashful. Just be aware that your needs may be different than your partner. Don’t put off the conversation. https://www.rehabmagazine.ca/healthcare/sexuality-intimacy-chronic-illness/?fbclid=IwAR0LSafZXeyv_X5e7nW9nYkzrE-py6u0Xe_k7FE1jj_2jEK1W3lQjGk4nwk

9. Got questions for the doctor. Write them down before you go so you won’t have one of those moments where you say, I forgot to ask such and such. Doctors visits take time and resources, so get the most out of every visit.Ask who ever goes with you to take notes.

10. Do not hide your disappointments, share them, we need to understand them before we can let them go.

11. Prayers are HOPE in action, take time to nourish your spiritual nature.This looks different for everyone.

Questions & Answers

1. How long was it from when you you noticed your symptoms until you felt completely healed.

September 5, 2005 was the start. I finished my last physical therapy October 2, 2007. 25 months

2.What Doctor was most helpful.

Each of them guided me to the next one I needed to see. In the end I could not have gotten as far as I did, without using every Doctor I saw.The out-of-the-box doctor that I saw was. Greg Weisswasser a Naturopathic ND. He is the one who found the very high lead level in my fat and bones through a urine chelation test.

3. How did you pick your caretaker.

I used the person closest to me, Mona, my wife, that wasn’t the best idea but I didn’t have any better idea at the moment. I’m sorry it took me so long to to realize Mona had too much on her plate, with all of the chores of the garden and running our home, just that, was enough for her. I live 35 minutes out of town in the forest, so whoever was going to be my caretaker, I needed them to live with me, that was my plan.

Since I did not have insurance that would pay for a full-time caretaker I spread the word around in my community that I needed help. I knew I was going to be responsible to train someone.The most important quality I was looking for was a compassionate person. The person I chose to become an intimate part of my life had to have a spiritual foundation. I needed to be able to share my deepest feelings with them. They also needed to be very strong so they could place me on the floor for my exercises and get me off the floor afterwards.

4. How do you believe your two spiritual healings took place.

I have no idea, I only know that I believed in them as they were happening.

5. What stopped you from taking your own life.

I planned it, but was afraid of doing it, even having the spiritual background that I do.I truly believe everything will be fine after we pass over, but taking my own life was too unnatural for me. Thank God I didn’t. This was a very personal decision,that was right for me.

6. How did you deal with depression.

I cried a lot, I got mad, I took the anti-depressant Lexapro which made me sick to my stomach and constipated. I vaporized a lot of marijuana, it relaxed my muscles and my mind. Most importantly,I talked openly about it. My imagination was the danger zone. I had too try in stay in the moment. Getting ahead of where I was in a negative frame of mind was debilitating.

7. How has your Life changed since your Healing.

I do not sweat the small things and I can deal with the rest.

I am here now to be of Service.I know the hardships folks go through on this journey, so I am here to remind them,they are not alone!!

I am in Amazement of my Healing. I have experienced my unique healing power of Prayer and Belief. That is beyond any past experience in my life and was much out of my control. So now I am looking for a way to pass on the Love, Care and Wisdom I gained thru my Challenge.

WHERE is all this Leading Me ?