• Richard Maloon posted an update 1 year, 5 months ago

    @richardhasals Agree with what you writing about. I have been newly diagnosed and investigating options. Not going to be in a wheelchair.

    Richard Maloon

    • Hi Richard, very sorry to hear about your current diagnosis.

      Since you are newly diagnosed, I’ve published this information in a previous forum, but if you missed it I’m re-sending it below:

      Note: the views and opinions expressed herein are my own. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read.

      Hang in there!!

      ================ After Being Diagnosed With ALS ======================

      Just a few thoughts about the post ALS diagnosis and working with your physician or ALS clinic:

      1. Be assigned a case manager, a point person. Someone who reaches out to you navigating you, on what to do, when to do it and how to do it.
      2. 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.
      6. Be given a lung function tests (such as Spirometer, Respiratory pressure meter,Peak flow meter)
      7. Ask about banking your voice
      8. Familiarize yourself with ALS initial and advanced symptoms.
      9. Discuss with your physician the possibility of being prescribed Riluzole and Radacava
      10. 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.
      11. Discuss the possible need for handicap parking and apply if applicable before it’s needed.
      12. Consider getting fitted for a wheelchair or motorized scooter before you actually need it.
      13. Investigate technological options before they are needed: communicating, transportation, feeding, mobility, breathing.
      14. Connect with your local ALS chapter. They may have programs for equipment loans, transportation options, caregiver support groups among other things
      15. Consider your future housing needs.
      16. Sign the AMX0035 fast-track petition, calling on the drug company and the FDA to make the treatment widely available as soon as possible.
      17. Email your congressmen for ALS funding and treatment legislation.
      18. 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.
      19. Develop your own personal (more granular) ALS functional rating scale test, so to more actually measure your disease progression. Update it daily.
      20. 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.
      21. 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.
      22. 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.
      23. Discuss if exercising is an option to possibly slow down the disease progression and which exercises you’d most benefit from performing.
      24. 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.

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