ALS News Today Forums | Nancy Gilkeson | Activity https://alsnewstoday.com/forums/members/mummu/activity/ Activity feed for Nancy Gilkeson. Mon, 13 Apr 2026 16:39:47 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 7cd4c034e8f1fe4f84dfbd11d16a5d28 Nancy Gilkeson replied to the discussion FYI ALS Mimics in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/fyi-als-mimics/#post-18966 Thu, 20 May 2021 20:10:01 -0500 Reply to FYI ALS Mimics

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… Read more

]]> 8bc7d87af570257c5dd24e426ecdff81 Nancy Gilkeson replied to the discussion In Loving Memory of The Sifford's that had ALS in the forum In Loving Memory https://alsnewstoday.com/forums/forums/topic/in-loving-memory-of-the-siffords-that-had-als/#post-18151 Wed, 24 Mar 2021 04:55:21 -0500 Reply to In Loving Memory of The Sifford's that had ALS

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.

]]> 9803ff2a5d256ab23aeeaa463f69fe18 Nancy Gilkeson replied to the discussion In Loving Memory of The Sifford's that had ALS in the forum In Loving Memory https://alsnewstoday.com/forums/forums/topic/in-loving-memory-of-the-siffords-that-had-als/#post-18140 Mon, 22 Mar 2021 19:59:57 -0500 Reply to In Loving Memory of The Sifford's that had ALS

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

]]> b6daf1436a43fc793b92b4964f400f2a Nancy Gilkeson replied to the discussion Using Sugammadex in ALS Patients in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/using-sugammadex-in-als-patients/#post-18050 Mon, 15 Mar 2021 20:01:18 -0500 Reply to Using Sugammadex in ALS Patients

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

]]> 41fe87433269f12d693f74b349a7e7f1 Nancy Gilkeson replied to the discussion Using Sugammadex in ALS Patients in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/using-sugammadex-in-als-patients/#post-18051 Mon, 15 Mar 2021 19:50:04 -0500 Reply to Using Sugammadex in ALS Patients

Whoops…

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

 

]]> bc1e2b69a902314b73ee6b778ddf1fb8 Nancy Gilkeson and Carolyn Barry are now connected https://alsnewstoday.com/forums/activity/p/10630/ Sat, 13 Mar 2021 11:39:54 -0600 0 661b010529e202fe549b5683b642a0b6 Nancy Gilkeson and Chuck Kroeger are now connected https://alsnewstoday.com/forums/activity/p/10605/ Fri, 12 Mar 2021 02:15:51 -0600 0 503968669214250861057feb0ee0b831 Nancy Gilkeson replied to the discussion Keeping a positive Attitude in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/keeping-a-positive-attitude/#post-17964 Sat, 06 Mar 2021 16:24:32 -0600 Reply to Keeping a positive Attitude

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… Read more

]]> c54e3cd0b698b2fe7891bb4acaa3714d Nancy Gilkeson replied to the discussion Learning To Live with an illness is a skill in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/learning-to-live-with-an-illness-is-a-skill/#post-17931 Tue, 02 Mar 2021 21:52:42 -0600 Reply to Learning To Live with an illness is a skill

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… Read more

]]> 24cd397f5f01025cda435db4c95ec8c1 Nancy Gilkeson replied to the discussion Looking Towards a Brighter Future in the forum COVID-19 and ALS https://alsnewstoday.com/forums/forums/topic/looking-towards-a-brighter-future/#post-17847 Sun, 21 Feb 2021 16:53:37 -0600 Reply to Looking Towards a Brighter Future

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

]]> 4371165823ee7cb3808c910c14072615 Nancy Gilkeson replied to the discussion Thoughts and ideas in the forum ALS ​and​ ​Relationships https://alsnewstoday.com/forums/forums/topic/thoughts-and-ideas/#post-17815 Thu, 18 Feb 2021 19:18:59 -0600 Reply to Thoughts and ideas

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

]]> 8151b24fae900254b4ec2f376cb794d0 Nancy Gilkeson replied to the discussion Thoughts and ideas in the forum ALS ​and​ ​Relationships https://alsnewstoday.com/forums/forums/topic/thoughts-and-ideas/#post-17798 Thu, 18 Feb 2021 01:52:03 -0600 Reply to Thoughts and ideas

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… Read more

]]> 738d2d68a61b1dc485e827af7349b6e5 Nancy Gilkeson replied to the discussion What vital Question to ask Neuro on Friday?? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/what-vital-question-to-ask-neuro-on-friday/#post-17741 Sat, 13 Feb 2021 17:15:48 -0600 Reply to What vital Question to ask Neuro on Friday??

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 &… Read more

]]> 901069deab5a216899639fd319abef03 Nancy Gilkeson posted a new activity comment https://alsnewstoday.com/forums/activity/p/10068/#acomment-10198 Sat, 13 Feb 2021 00:33:47 -0600 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… Read more

In reply to - Nancy Gilkeson became a registered member ]]> 2e39ba411b628671e8b8caf14ab67ec6 Nancy Gilkeson posted a new activity comment https://alsnewstoday.com/forums/activity/p/10068/#acomment-10197 Sat, 13 Feb 2021 00:16:23 -0600 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

In reply to - Nancy Gilkeson became a registered member ]]> bb99bcb95d7edec1fe75b2d98cdf9afa Nancy Gilkeson replied to the discussion What vital Question to ask Neuro on Friday?? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/what-vital-question-to-ask-neuro-on-friday/#post-17724 Thu, 11 Feb 2021 00:53:19 -0600 Reply to What vital Question to ask Neuro on Friday??

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… Read more

]]> 31b4cbe315981380b4aeec6233cf102b Nancy Gilkeson replied to the discussion What vital Question to ask Neuro on Friday?? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/what-vital-question-to-ask-neuro-on-friday/#post-17695 Tue, 09 Feb 2021 00:58:41 -0600 Reply to What vital Question to ask Neuro on Friday??

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… Read more

]]> 9eb99684da28ddf3723bda62c046b8d6 Nancy Gilkeson became a registered member https://alsnewstoday.com/forums/activity/p/10068/ Thu, 04 Feb 2021 22:51:49 -0600 4