February 10, 2021 at 2:53 pm #17721Dagmar MunnKeymaster
We all recognize there are things we would do differently in our lives if we could. And this is something often felt by those who live with ALS. Sure, if I could go back in time, I’d do a few things differently but, I don’t dwell on those thoughts; I just keep going forward.
However, when asked, I’m always willing to share – – because I’m willing to help others through my experiences.
Check out my column, 3 Things I Would Do Differently If Diagnosed Today, to learn why I would:
- Adapt to using a rollator much sooner
- Tell anyone and everyone
- Change the way I exercised
We can always learn from each other. Tell us about the 3 things you would do differently (and why) if you were diagnosed today.
February 11, 2021 at 4:19 pm #17733Chuck KroegerParticipant
I would have taken better care of my fingers and toes through stretching and exercise to hopefully keep them from curly into practically useless appendages
I would have started using my power wheelchair sooner to conserve energy
I would have started selling off fishing gear and other items that I will no longer use that are now left up to family to get rid of
February 17, 2021 at 5:50 pm #17796AmandaKeymaster
I think this is a great question and one I have given thought to in the past. I look forward to reading the responses.
March 16, 2021 at 2:22 pm #18065RichardParticipant
My Advice If Diagnosed With ALS Today
Though, more than just three things…working with your physician or ALS clinic:
- 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.
- 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.
- Obtain a second opinion or third, fourth, etc., if necessary.
- Rule out any ALS mimicking diseases, such as Multifocal Motor Neuropathy.
- 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.
- Familiarize yourself with ALS initial and advanced symptoms.
- Discuss with your physician the possibility of being prescribed already FDA approved drugs such as Riluzole .
- 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.
- Discuss the possible need for handicap parking and apply if applicable before it’s needed.
- Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
- Investigate technological options for communicating before the power of speech is altogether gone.
- Consider your future housing needs.
- Email your congressmen for ALS funding and treatment legislation.
- 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.
- Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression. Update it daily.
- 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.
- 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.
- 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.
- Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
- 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.
- Find ALS certified centers near you
- Gather websites for general help, organizations, clinical trials, etc.
In another tread I’ll identify a few useful websites.
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