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    • #23102
      Eric Jensen
      Participant

      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

    • #23113
      Kathleen B (Katie)
      Participant

      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.

      • #23157
        Prudence Runyan
        Participant

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

    • #23120
      Eric Jensen
      Participant

      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.

      😯

       

       

       

       

      • #23134
        Mary
        Participant

        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.

    • #23151
      Jerry Fabrizio
      Participant

      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

       

       

       

       

       

    • #23155
      Kathleen B (Katie)
      Participant

      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.

    • #23175
      Ed
      Participant

      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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