[Richard]

First, the people leading the ALS cure charge need to stop patting themselves on their backs for what I see is a clear failure.  As an example;

The other day I received an email from The ALS Association ([email protected]) touting their success about the House of Representatives 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…”

Personally, I wouldn’t be very proud of the fact that it took 4 years to pass.  I’d be embarrassed!

Second, you know ALS has a publicity problem when the most famous ALS individual being publicized died 81 years ago.  Most people living with ALS today weren’t even born yet when he died. Steven Hawking is not any better as an ALS example, a longevity anomaly. Living, though poorly, 50 years with the disease sends the wrong message about the urgency in finding a cure.  There’s a need to highlight more recent, famous people with this disease.

The individuals leading the ALS cure charge need to take a good long, hard look at their methodologies of initiating/persuading Congressional bills, drug research, funding and FDA approvals along with public awareness.  A more radical approach is necessary. Past performance is indicative of future results. A new rule book needs to be written. This snail’s pace is unacceptable when the average ALS life expectancy is between 2 to 5 years and the quality-of-life expectancy is significantly lower than that.

 

[Richard]

I agree with the Kathy Stitz post from December 7, 2020 at 12:59 pm ET about doctor neglect.   In my particular case, the doctor told me my diagnosis and then just sent me home.  Below are specific examples the ALS clinic failed:

1. Wasn’t assigned a case manager, a point person. After receiving diagnosis of ALS I should have been immediately designated a point person, who should reach out to me telling me what to do, when to do it and how to do it. I shouldn’t have to reach out to the Clinic.
2. Wasn’t given an ALS primer – paperwork on ALS or an identification of websites to go to (in a specific order), so to understand the disease, what to expect, research being done, self-help, etc.
3. Wasn’t immediately prescribed Riluzole. I had to request a prescription for Riluzole. From what I have read online, getting on Riluzole as early as possible returns the best results.
4. Wasn’t encouraged to try ALSUntangled recommended therapies. There is no cure for ALS.  ALS is a death sentence!  All the therapies that are not “we do not recommend” should be tried, together.  Trying every possible recommended therapy should be encouraged.
5. Wasn’t “handheld” through the SSA SSDI The SSA SSDI and Medicare process should start the day after receiving ALS diagnosis with a person to guide through the maze of SSA confusing, difficult to navigate websites where you are taken from webpage to webpage forgetting where you started from.
6. Wasn’t encouraged to sign the AMX0035 fast-track petition. I was informed by TodayALSNews.  There should have been a coordinated effort from the clinic.
7. Wasn’t encouraged to email my congressmen for ALS funding and treatment legislation, through websites such as https://stevensnation.com/
8. Wasn’t presented with any clinical trial orientation. I know there are trials, so working with my doctor I should be presented with what is available and what would work best for me.
9. Wasn’t given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t measure the decline progression.
10. Wasn’t questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. Gathering this information should be standard practice.  Reason, from what I have read online sporadic ALS has unknown origins.  Also, it progresses differently in different people.  It would make sense to me that the clinic(s) obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
11. Wasn’t made aware of the “Right to Try” Act.
12. Wasn’t encouraged to try Complementary and Alternative Therapies (CAM) As said before, there is no cure for ALS, so all treatment options should be on the table.  Even if you only benefit by the placebo effort, the end result is the same.  The bottom-line, you feel better and that’s what were all trying to achieve.

Bottom line…you’re either part of the problem or part of the solution.  The items I’ve identified above clearly point to being part of the problem.

 

[Richard]

to Allen Lewis…  In response to “throat gets so clogged with phlegm“…

My mother had this problem.  She was unable to clear her throat on her own.

I induced sneezing by simply using “sneezing powder” which made her spit out the phlegm.  Low tech, but worked in her situation.

Best of luck!

Rich

 

 

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