Nancy Gilkeson

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]

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.

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

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

Whoops…

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

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]

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]

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

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

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]

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]

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]

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]