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Nancy Gilkeson

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@mummu

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  • Profile picture of Nancy Gilkeson

    Nancy Gilkeson replied to the topic FYI ALS Mimics in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 10 months ago

    Thank you John for your overview of the difficulty in diagnosing our motor neuron diseases with specificity in what seems like a timely  manner.   I am still awaiting a diagnosis (told to return in 3 months) but was told it is NOT, ALS, at my “2nd opinion” from “Neurology Academia” on Mar 31st.  Maybe IBM (Biopsy may be done next visit), or MMN…[Read more]

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    Nancy Gilkeson replied to the topic In Loving Memory of The Sifford's that had ALS in the forum In Loving Memory 1 year, 12 months ago

    Yes, do, Amanda.  Meanwhile, an enlarging crowd of  witnesses (I am one) are cheering for you and all others who are  working for that breakthrough & advancement for that protective & preventative answer.

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    Nancy Gilkeson replied to the topic In Loving Memory of The Sifford's that had ALS in the forum In Loving Memory 2 years ago

    God bless you, richly, Amanda for your loving kindness, your advocacy, & shared memories…..all of these give me a wider, richer view of life!     I’m glad to “meet” your family and thankful you shared this.

    Nancy

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    Nancy Gilkeson replied to the topic Using Sugammadex in ALS Patients in the forum Research Topics 2 years ago

    Hi Rich (my brother’s shortened name as well!),

    Could you lead me to info re: the meaning of “dying forward” & “dying backward” ?  I’m new to those words… frankly this whole subject matter.  Thanks,

    Nancy

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    Nancy Gilkeson replied to the topic Using Sugammadex in ALS Patients in the forum Research Topics 2 years ago

    Whoops…

    My question just now should have been directed to Jean-Pierre…., Pardon.

     

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    Nancy Gilkeson and Profile picture of Carolyn BarryCarolyn Barry are now friends 2 years ago

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    Nancy Gilkeson and Profile picture of Chuck KroegerChuck Kroeger are now friends 2 years ago

  • Profile picture of Nancy Gilkeson

    Nancy Gilkeson replied to the topic Keeping a positive Attitude in the forum Living With ALS 2 years ago

    I appreciate every comment I’ve read above…the honesty, whether upbeat or downcast at this moment, is such an encouragement in that not one person is left alone in their thot or feeling.  We are such “fluid” feeling & thinking beings, and any one day may differ from another, in “happenings,” and  how I see & respond to them.  Having very few an…[Read more]

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    Nancy Gilkeson replied to the topic Learning To Live with an illness is a skill in the forum Living With ALS 2 years ago

    Just thinking…..

    Amanda, it makes sense to me, that skill (or lack of) would be involved in this major life adjustment.  I think of  parenting skills, social skills, caregiving skills etc, which help us maneuver thru learning to live well in our individual lives.  Some skills seem a “natural” with one individual while hard work for another an…[Read more]

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    Nancy Gilkeson replied to the topic Looking Towards a Brighter Future in the forum Coronavirus (COVID-19) and ALS 2 years, 1 month ago

    And Dagmar, I’ll add with Kathy,  the thank you for looking deeper, and seeing more.    :  )

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    Nancy Gilkeson replied to the topic Thoughts and ideas in the forum ALS ​and​ ​Relationships 2 years, 1 month ago

    Carolyn, this community is such a blessing, isnt it; a place to connect with others, with similar challenges and life experiences that provide us with understanding and being understood, caring and receiving care.   Thank you for sharing in that too!

    Nancy

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    Amanda and Profile picture of Nancy GilkesonNancy Gilkeson are now friends 2 years, 1 month ago

  • Profile picture of Nancy Gilkeson

    Nancy Gilkeson replied to the topic Thoughts and ideas in the forum ALS ​and​ ​Relationships 2 years, 1 month ago

    Hi Amanda (et al)    I have some thots on your questions  & information.  I am “early” into this strange new part of life where I am slowly becoming limited in a few areas and am not yet actually diagnosed with ALS but it remains in the “running,” so I should not have much yet to offer here, but I do have a perspective which may be a bit uni…[Read more]

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    Nancy Gilkeson replied to the topic What vital Question to ask Neuro on Friday?? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 1 month ago

    When I felt similar to this frustration Lisa, after a new PCP  a year ago, was dismissive with my complaints & seemed uninformed about my sx, or even who to send me to, defeat was all I saw.  It took 6 months to get to be seen by a neurologist and now 5 months later I have an appt for a 2nd opinion (on Mar 31) & maybe more testing & c…[Read more]

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    Nancy Gilkeson posted a new activity comment 2 years, 1 month ago

    Thank you Dagmar for sharing your work, experiences and caring thru this website. It is most helpful and uplifting as well as factual. I am learning how to maneuver around and appreciate how much support is offered ! I do have a question about the “red notification bell” i see at my screen lower right . It says I have notifications blocked…[Read more]

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    Nancy Gilkeson posted a new activity comment 2 years, 1 month ago

    Thank you Amanda. I cannot imagine the lifelong relationship with ALS you have experienced and carried, but immediately admire your work here. I am thankful to have found this helpful and inclusive support system. I can only be better because of it. Again thank you! Nancy

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  • Profile picture of Nancy Gilkeson

    Nancy Gilkeson replied to the topic What vital Question to ask Neuro on Friday?? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 1 month ago

    Hi Lisa.  It took me from March 2020 til Sept. 2020 to get to an appointment with a neuro-muscular specialist who did EMG & NCS, ordered Cervical & spinal MRIs & 13 vials of blood work in October.  She teleconferenced me (from another city) as a followup late Nov. 2020.   She also was hesitant to state possible dx but when I asked her  about ALS…[Read more]

  • Profile picture of Nancy Gilkeson

    Nancy Gilkeson replied to the topic What vital Question to ask Neuro on Friday?? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 1 month ago

    Lisa, I feel much like what you are expressing re: office visit & what I imagine the expectations & responses will be by Dr & have a timidity about asking for what I need or want.  Dagmar’s response is what we need to do, but we lack the confidence of how to do it successfully.  We both probably are anxious from past experience (I am) so maybe c…[Read more]

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    Nancy Gilkeson became a registered member 2 years, 1 month ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 1 month ago

      Hello Nancy,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is 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…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 years, 1 month ago

      Hi Nancy – – what fun, to meet up with a fellow fiber enthusiast! Too bad that ALS has brought us together… but you are in the right place here in the forums; for information and support.

      I will switch to a private message to you for the rest of my reply 🙂 Dagmar

    • Profile picture of Amanda
      Amanda replied 2 years, 1 month ago

      Hello Nancy, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. 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 ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]

      • Profile picture of Nancy Gilkeson
        Nancy Gilkeson replied 2 years, 1 month ago

        Thank you Amanda. I cannot imagine the lifelong relationship with ALS you have experienced and carried, but immediately admire your work here. I am thankful to have found this helpful and inclusive support system. I can only be better because of it. Again thank you! Nancy

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