[Richard]

Tom,  You are correct, live as best as we can.  Time is our least renewable energy.  Learn from others when possible. It’s better to light a candle than to curse the darkness, for no matter how tall the mountain is, it cannot block the sun.

Rich

 

[Richard]

Frank and Victor, I too feel the same as you.  I’m hoping that some sort of treatment may be found soon.  I attend the Massachusetts General Department of Neurology Healey ALS Platform Trials webinars. They talk of trials that sound promising. There is a Q&A webinar every Thursday 5:00 pm ET.  The webinars are usually interactive, allowing you to ask (type) questions directly to the Healey Platform Trial Team.

See this link to register for  Healey Platform Trial webinars:
https://lnkd.in/dKEt8WV

If you’re not familiar with the ALS Healey Platform Trials, you can visit this website:
https://www.massgeneral.org/neurology/als/research/platform-trial

Rich

[Richard]

I’m taking several supplements that I hope delay my decline in quality of life. I can’t say if these supplements are slowing the disease progression because there is no definable timeline for disease progression.  However, I do know that these supplements have not stopped or reversed my decline. I’m trying the supplements suggested by the Untangled and Patients Like Me websites.  Here is my supplement list:

Curcumin 90 mg x 2
Black Seed 1000 mg
Men’s Vitamins Gummies
Protein Powder Whey 1 Scoop
Nutritional Yeast 1 Tbsp
TUDCA 500 mg x 4
ALCAR 1000mg
Riluzole 50mg x 2  (prescription)
Moringa 500 mg x 2
Gotu Kola 425 mg x 2
Lithium Orotate 10 10 mg x 2
CoQ10 100 mg x 2
L-Serine 1000 mg x 2
NAC 600 mg x 2
Turmeric Curcumin 600 mg x 2
Protandim 675 mg
Alpha Lipoic Acid (ALA) 300 mg x 2
Taurine 1000 mg x 2
Nicotinamide 500 mg x 2
Pterostilbene 100 mg x 2
Lion’s Mane Mushroom 500 mg x 2
TRU Niagen 300 mg

 

Rich

 

[Richard]

Hi Bill.  Would you know the name of the supplement(s) that those 60 people may have been taking that had reversed ALS?

Rich

 

[Richard]

Thanks for the info.  No simple solutions.

 

[Richard]

Hi Frank, very sorry to hear the state of your current condition.

 

Biogen’s decision (today’s featured article) rejecting early access doesn’t help the situation.

They say it’s the darkest before the dawn.  However, for pALS, it’s the darkest before it goes completely dark.  ALS is a conveyer belt of problems.  We are all in the gutter, but we have to continue to try looking at the stars.

 

Thoughts are with you, hang in there!

Rich

 

 

[Richard]

Another article on this topic:

https://www.technologynetworks.com/genomics/blog/engineering-the-future-of-genetic-medicine-347275

 

Richard

 

[Richard]

Their decision is like putting a stumbling block before the blind.

 

[Richard]

Perhaps there would be a greater urgency in finding an ALS cure if instead of countless articles saying:
“The average life expectancy after diagnosis is two to five years”

 

was changed to:
“The average quality of life expectancy after diagnosis is one to two years”

 

“In the end, it’s not the years in your life that count. It’s the life in your years.” Abraham Lincoln

 

Richard

 

[Richard]

In the above reply, Platform Vector Gene Therapy (PaVe-GT) PaVe-GT is described.  One aspect is data sharing.  The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) supports data sharing.  Sharing knowledge and multi-disciplinary expertise through open science can improve public and private collaboration, and contribute to a learning health system that better informs patient care.

 

The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) in collaboration with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge, with the support of ALS Society of Canada, Ontario Brain Institute (OBI) and NetraMark Corp. The goal is to surface insights through an open data competition that connects the global AI and neuroscience communities to better understand the overall biology of amyotrophic lateral sclerosis (ALS), and improve diagnosis and drug discovery for ALS patients.

 

The definition of insanity is doing the same thing over and over again and expecting different results.  So, the ability to perceive or think differently is important.  Strength lies in differences, not in similarities.

 

https://www.newswire.ca/news-releases/roche-canada-artificial-intelligence-centre-of-excellence-opens-digital-competition-to-tackle-als-852414842.html

 

Richard

 

[Richard]

A timely article on this subject: COVID’s all-hands-on-deck approach should be standard for rare diseases

https://thehill.com/opinion/healthcare/543461-covids-all-hands-on-deck-approach-should-be-standard-for-rare-diseases

 

Key quotes from this article:

“…this process of turning observations into treatments and cures is called “translation.” For patients suffering from diseases with no treatment — or treatments that simply don’t work well enough — the translational process cannot happen fast enough. They are dying of what I call “translational disease,” or inefficiencies in the translational process.”

“Platform Vector Gene Therapy (PaVe-GT) PaVe-GT epitomizes the same approaches that enabled teams around the world to bring COVID-19 tests, treatments and vaccines to millions of people. These include collaboration, innovation in clinical trials and recruitment, open data sharing and the use of existing resources and networks — all in support of accomplishing a collective goal as rapidly as humanly possible.”

 

Richard

 

[Richard]

My Advice If Diagnosed With ALS Today

Though, more than just three things…working with your physician or ALS clinic:

1. Ask to be assigned a case manager, a point person for your questions. Plus someone who reaches out to you navigating you, on what to do, when to do it and how to do it.
2. Ask to be provided an ALS primer. ALS introduction paperwork or at least an identification of websites to go to (in a specific order), so to understand the disease, what to expect, medication, research being done, self-help, etc.
3. Obtain a second opinion or third, fourth, etc., if necessary.
4. Rule out any ALS mimicking diseases, such as Multifocal Motor Neuropathy.
5. Be given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t determine the decline progression and if Complementary and Alternative Medicine (CAM) are working.
6. Familiarize yourself with ALS initial and advanced symptoms.
7. Discuss with your physician the possibility of being prescribed already FDA approved drugs such as Riluzole .
8. Discuss the possible need for Social Security Administration (SSA) Social Security Disability Insurance (SSDI)
   a. If you’ve received a diagnosis of Amyotrophic Lateral Sclerosis, you qualify for the Social Security Administration’s Compassionate Allowances program.
   b. Request guidance through the SSA SSDI and Medicare process.
   c. Discuss the possible need for supplemental insurance for prescriptions, vision and dental.
9. Discuss the possible need for handicap parking and apply if applicable before it’s needed.
10. Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
11. Investigate technological options for communicating before the power of speech is altogether gone.
12. Consider your future housing needs.
13. Email your congressmen for ALS funding and treatment legislation.
14. Discuss with your physician any clinical trials being conducted. Working with your physician be presented with what is available and what would work best for you.
15. Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression. Update it daily.
16. Recommend to be questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. This should be part of physicians and clinics standard practice. Reason; from what I have read online sporadic ALS has unknown origins. Also, ALS progresses differently in different people. It would make sense that physicians and clinics obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
17. Sign up for PatientsLikeMe, a health information sharing website that helps people find new treatments, connect with others and take action to improve their outcomes.
18. Be aware of the “Right to Try” Act, which allows terminally ill patients access to experimental therapies that have completed Phase I testing but have not been approved by the Food and Drug Administration.
19. Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
20. Since there is currently no cure for ALS all therapeutic options should be explored with your physician or ALS clinic:
    a. Get informed about Complementary and Alternative Medicine (CAM) or Alternative or Off-label Treatments (AOT). Even if you only benefit by the placebo effort, you’ll feel better and that’s what we’re all trying to achieve.
    b. Discuss trying ALSUntangled recommended therapies. Therapies showing some benefit and are not “we do not recommend” should be discussed with your physician as possible options.
21. Find ALS certified centers near you
22. Gather websites for general help, organizations, clinical trials, etc.

 

In another tread I’ll identify a few useful websites.

 

Richard

 

[Richard]

Hi Nancy,  Perhaps this link could further explain the meaning of “dying forward” & “dying backward”:

https://www.researchgate.net/figure/The-dying-forward-and-dying-back-hypothesis-of-amyotrophic-lateral-sclerosis-ALS-The_fig4_233977721

 

Rich

 

 

[Richard]

From my google searches, the latest information on Sugammadex is about 1 year old.  Hoping to see more research and information on Sugammadex and its relationship to being a possible ALS treatment.

 

Rich

 

[Richard]

Hi James, similarly to you, I too made an attempt to find my ALS root cause.  First, I looked at my family history. No one in my family has had ALS and the people in my family have lived into their late 70s all the way up to over 100 years old. So, my ALS is probably not familial. Then I reviewed my life’s exposures and injuries.  Nothing stood out as a catalyst. I had a couple of jobs that I may have been exposed to less than favorable environmental conditions.  However, the people I worked with back then were all exposed for a much greater length of time than I was and they lived into their 80s. I’m a health and exercise enthusiast, but nothing out of the ordinary that so many others don’t also do.  If what I did was the cause of ALS, then I would expect a lot more people to have it, and not be so rare. I agree with you, all I can think of as a cause for my ALS is perhaps it is a combination of genetics, environment, lifestyle, personality traits, injuries, previous illnesses, nutrition, etc. I must have created the perfect environment for ALS to take root.

In the absence of useful medication, if you are interested in learning more about clinical trials, the information and links provided by I AM ALS may be a good starting point to familiarize yourself with the topic and available trials.  My name is currently on a waiting list for a Healey Trial opening.

Clinical Trial Dashboard
https://iamals.org/get-help/als-signal-clinical-research-dashboard/

Dashboard Introductory Video
https://youtu.be/aeLYTqx6a9w

Find A Clinical Trial
https://iamals.org/get-help/als-treatments-and-trials/#clinical-trials

Clinical Trial 101
https://www.neals.org/als-trials/als-clinical-research/what-is-a-clinical-trial-and-why-are-they-necessary-for-als

Take care,
Rich

 

[Richard]

A definition for those not familiar with the term pre-fALS study:

Pre-fALS is a prospective natural history and biomarker study of people not yet affected with ALS, but who are at genetic risk for developing ALS.

 

Possible questions to ask the doctor about fALS:

What new advancements have been discovered in 2020 or since your last visit?
What are the expectations for advancements/breakthroughs for 2021?

 

[Richard]

If I properly read the CDC website, ALS is considered an underlying condition which means people with ALS should get the vaccine at a higher priority.

 

If you go to the following CDC website and scroll down to the “Neurologic conditions such as dementia” section, you will see that ALS is mentioned.

 

https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html#smoking

 

Additionally, as stated in a previous comment, from what I have read about Riluzole (a medicine frequently taken by people with ALS), to me it would make sense to COVID-19 vaccinate pALS sooner rather than later.  If you go to the following website;

 

https://www.wikidoc.org/index.php/Riluzole_(patient_information)

Under the section ” What other information should I know“, the following is stated:

 

“Riluzole can affect your body’s ability to fight infection. If you have any illness, especially one with a fever, call your doctor.”

 

[Richard]

An additional URL on this topic is:

https://troymedia.com/health/researchers-discover-new-way-to-identify-severity-and-track-progression-of-als/

Rich

 

[Richard]

Hi Amanda. From what I have read about Riluzole (a medicine frequently taken by people with ALS), to me it would make sense to COVID-19 vaccinate pALS sooner rather than later. https://www.wikidoc.org/index.php/Riluzole_(patient_information)
Under the section ” What other information should I know“, the following is stated:

“Riluzole can affect your body’s ability to fight infection. If you have any illness, especially one with a fever, call your doctor.”

Rich

 

[Richard]

Just taking one step back…before you’re able to explain to others about ALS, you yourself first need to know about the disease.  What to expect, medications, progression, research, clinical trials, self-help, etc. I place this responsibility of educating the patient on the doctor who makes the ALS diagnosis.  Not just explaining to the patient in words, but rather in written form.  You may be too overwhelmed to capture and retain all the information if the information is just spoken.  From my own experience, minimal information was provided and I had to educate myself.  A clear deficiency of the ALS Clinic and doctors involved.

 

[Richard]

Quality of life is subjective.

 

If you were a person who enjoyed and sought out physical activity, then being wheelchair bound with the loss of most/all muscle movement, I feel it is not going to be a high quality of life for you.

 

If you enjoyed low physical activity, reading books and watching shows/sports on TV, then you may not feel the loss of life quality as much as someone who enjoyed and pursued hiking, MT biking, skiing, rollerblading, body building, beach volleyball, basketball, yard work, gardening, etc.

 

In addition to physical activity, if you were the type of person who minimized the dependency on others and maximized the dependency of others on you, then I feel it is not going to be a high quality of life for you.

 

I’m not saying you can’t still find meaning in your life, it is just that the quality has diminished.

 

[Richard]

Your attitude will determine your altitude.

 

[Richard]

Hi Kathy,

 

I agree with you 100%, most people don’t know anything about ALS until they are diagnosed with it or someone in their family is diagnosed with it – only the spoon knows what is stirring in the pot.

 

There are no shortages of research articles claiming potential positive results.  However,  you can’t propel yourself forward by patting yourself on the back.  An ounce of performance is worth pounds of promises.

 

Richard

 

[Richard]

I agree with you.  Unfortunately, trying to get the FDA and Congress to move any faster is like a nail competing against a hammer.

 

Though, the FDA and Congress are not the only ones to blame.  People directly involved with ALS foundations are also to blame.  As an example, several months ago the ALS Association was touting their success in their effort to work with the House of Representatives in passing the ALS Disability Insurance Access Act. Below is a quote from their email:

 

“Over the last four years, YOU have helped build the momentum and support for this bill. From a single sponsor when it was originally introduced in 2016…”

 

I couldn’t believe what I was reading.  I wouldn’t be very proud of the fact that it took 4 years to pass. Rather, I’d be embarrassed!