ALS News Today Forums Forums Living With ALS Why can’t I be involved in my care?

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  • Why can’t I be involved in my care?

    Posted by eric-jensen on November 20, 2022 at 12:35 pm

    Every time I go to a medical provider visit, I feel like I have just been in a fight. I don’t need to be a medical professional to give input on my plan of care. I am one piece of the puzzle, in the differential diagnostic equation. I had a provider tell me, “stop researching on the internet…” Why wouldn’t I want to be informed? ***using NIH and Neurological Journals

    Why can’t I be an educated advocate for my care? If I don’t, who will? My insurance company won’t advocate. Most providers won’t advocate. Since a ALS/MND illness is terminal, we should all work together to be efficient. Anyone else have difficulty getting medical providers to listen to you?
    “I can’t open jelly jars anymore… I can’t walk anymore… I can’t drink without choking….”

    Statements like these are NOT made by a machine. The statements are objective and show decline.

    ***using NIH and Neurological Journals

    edchavezcomcast-net replied 1 year, 3 months ago 4 Members · 4 Replies
  • 4 Replies
  • kathleen-b-katie

    Member
    November 23, 2022 at 8:25 am

    Eric, I’m a reader of National Institute of Health and Neurological Journal items too—AND I make copies to take to my appointments !   I started doing that by 3rd appointment when I heard same statement you did.  It has helped—we DO indeed need to be our own advocates—until these medical people can simulate this condition and then go about THEIR daily lives for 3 months.
    They  are neither ‘walking in our shoes’ or living in our bodies—only studying a disease process as it unfolds.   Be true to self and request a different neurologist if your clinic has one—it is truly important to have a mutually respectful relationship—and some doctors come by that more easily than others.

    • prudence-runyan

      Member
      November 29, 2022 at 3:41 pm

      Sorry you are having this experience. Frankly, I would change doctors and tell this one why.

  • eric-jensen

    Member
    November 24, 2022 at 11:15 am

    Thank you. They need to do just a day in our life, I agree. I wouldn’t wish this disease on anyone. I am glad that there are forums for us to vent our frustrations. Thank you for the idea to print them. Many times, the providers don’t want to hear me give scientific fact or an intellectual opinion. My first visit to the ALS department, the physician said I was acting manic. I said, “when I was told I had a fatal disease,…, you would be anxious too.” He asked my wife, if she thought if I should go to the ER to be evaluated by psychiatry.

    ????

     

     

     

     

    • marykg

      Member
      November 25, 2022 at 12:59 pm

      Eric,  I am so sorry your Doctor acted that way.  Hopefully, you have found a better physician.
      Even though we have an ALS clinic we use and now have hospice care for my hubby it is as though they all listen with their mouths and not their ears.  At this point we’ve quit trying and only involve them when absolutely necessary.   My time with my love is too short to have to spend it in the turmoil the medical profession adds to our life. Peace, quiet and quality of life is all we want at this time.

  • jerry-fabrizio

    Member
    November 29, 2022 at 3:01 pm

    Eric,

    I had an idea that I am testing it is called LENS

    The concept of Low Energy Neurofeedback (which is a completely unique form of “brain optimization”) was first introduced by Len Ochs in the 1980s. After introducing his ideas to several national forums, he established Ochs Labs to further develop and hone Low Energy Neurofeedback concepts and the technology behind it.

    About – Ochs Labs

    My Dr (not Neurologist) uses for his patients to help their brains.

    He measures my head and places the part that sends the signal to my nerve.

    Example My doctor placed the sensor on my head and another on my leg/arm.  He measured to amount of energy that was coming through.  Then he increases the signal until it gets to the sensor.  Then he sends the signal for a couple of minutes.  I do not feel anything while this is happening.

    When I get home, I place a TENS unit sensor on the same place in my arm and my leg.  Then my hand or foot quivers.

    So what,  you ask.

    Before I started, I could not start my car with one hand.  Now I can.

    Before I started, I had a drop foot.  Now I do not.

    My Neurologist thinks it could work.  I have just started this, and I am communicating with my Neurologist.   I hope it works and I hope I can help people understand how it works.

    I wish I had this idea earlier.

    Keep Fighting we have help our doctors think about new ways to stop this.  They have been looking at the same thing for many years.  We have fresh eyes!

    Jerry

     

     

     

     

     

  • kathleen-b-katie

    Member
    November 29, 2022 at 3:05 pm

    Thank you Mary for your wise words for myself & Eric to benefit from as we make this journey with our spouses.
    I too hope you’ve another neurologist Eric—and, if you are at an ALS clinic, there must be a director—and a social worker —who should both be informed by phone or email of your experience. It is very unprofessional and totally not what any ALS patient should experience.

  • edchavezcomcast-net

    Member
    December 1, 2022 at 3:06 pm

    Excellent discussion. Our providers need to listen to us. I suggest reading Being Mortal written by Atul Awande. This book explains the importance of the medical team (and others) listening to the patient. I found it empowering.

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