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Mary

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@marykg

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    Mary replied to the topic Why can’t I be involved in my care? in the forum Living With ALS 2 months ago

    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 lo…[Read more]

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    Mary replied to the topic Passing away and respiratory in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 months, 1 week ago

    Shannon,

    We are so sorry you have had to join this community because it means you are dealing with this horrific disease.

    As Amanda said every pALS is different and all of us who are caregivers feel lost.
    Has he had a lung function test?  Are you dealing with an ALS clinic?  Have you joined your local ALS  Association’s support group for care…[Read more]

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    Mary replied to the topic ALS and Pain in the forum Living With ALS 9 months ago

    In Bill’s case the pain was one of the first noticeable symptoms and probably  helped to delay his diagnosis.

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    Mary replied to the topic ALS and Pain in the forum Living With ALS 9 months ago

    My husband was diagnosed with ALS with Respiratory Onset in September 2021.  We were told there was no pain associated with ALS.  In Bill’s case other than breathing and of course the rapid progression of losing the ability to use muscles, PAIN …..has been his biggest problem.  He has the typical head drop which is associated with Respir…[Read more]

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    Mary replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 10 months, 1 week ago

    My husband, Bill, needs an I pad or personal computer that will work with eye movements or other means.   He still has his voice but it gets very weak during the day.   His hands and arms are all but  gone at this point.  ALS with Respiratory Onset is the diagnosis. He is still ambulatory but has a motorized wheelchair for resting his head and usi…[Read more]

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    Mary replied to the topic Pain management and ALS in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 11 months ago

    Finally got my hubby referred to a pain management and palliative care clinic that will prescribe liquid marijuana as part of a pain management treatment plan.   Our als clinic prescribed opioids even after us telling them that he couldn’t use narcotics as he has bad reactions and it adversely affects his breathing.
    We are praying his ap…[Read more]

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    Mary replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 1 week ago

    Duane,

    Thank you for the information.  My hubby is to the point of needing a hospital bed.  He s struggling to get out of bed as his arms continue to weaken.
    I worry about the size of a hospital bed.   Do they come in different sizes.   He has Respiratory Onset so he needs to be elevated and on his side.   He is 6’ 4” and 260 lbs at this point.  …[Read more]

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    Mary replied to the topic 2022 in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 11 months, 3 weeks ago

    Thank you for your kindness and suggestions.

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    Mary replied to the topic 2022 in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 11 months, 4 weeks ago

    Amanda,

    Right now it is all so overwhelming.  We searched for over 18 months for a diagnosis. September 2021 changed our life as only those who have had this diagnosis understand.
    I am forming new habits at home and work to make time for myself.  I am getting up an hour earlier to have some quiet time to try to relax and come to terms with l…[Read more]

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    Mary replied to the topic Is NF-L in CSF Lumbal Puncture a reliable BioMarker? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year ago

    Highly suggest you go to an ALS Clinic such as Mayo, Johns Hopkins or VCU.
    Don’t give up.  There is someone out there who will help you.

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    Mary became a registered member 1 year, 2 months ago

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      Amanda replied 1 year, 2 months ago

      Hello Mary,
      I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!

      We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with A…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 2 months ago

      Hello Mary,

      Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]

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