Nancy Gilkeson
Forum Replies Created
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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, or even Post Polio, with a repeated MRI (different technique) ruling out Cervical myeloradiculopathy. Technically I no longer “belong” here, but have kept checking in & learning from you all. Appreciate this medium greatly. Thanks for everything.
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Wow, thank you all for input. Im not swelling, but the alternating air boots, zippered socks, fitkicks, & footwarmer with multiple settings, all sound helpful.
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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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Cold hands and feet are daily visitors here at my home too! I use two pair of wool & cotton blend socks at night now. I put one pair on regular and tuck PJ leg bottoms into the cuff of that 2nd pair of socks, which has been helping the feet at night.
Thankfully I can huddle near the pellet stove, reheat hot water or coffee in microwave to warm hands still, but also use “flaxseed warming pillows” heated in microwave occasionally, for hand warmth. I had made a bunch for family Christmas gift-giving a few years back & the “leftovers” are certainly appreciated now by myself!
That makes me think of something else…felted soaps. I’ll start a thread for that.
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Thank you both, Rich and Jean-Pierre for your answers & links.
Nancy
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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 answers, I appreciate your shares, and want to come here, to learn from & with you.
Thank you….Amanda, Kathy, Nina, Isabelle, Cindy, Chuck, John, David, and Allan. Your being here is meaningful to me and Im sure others who are “listening”.
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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 and are not necessarily mechanical or physical. It seems that a “skillful wisdom” can be shared through awareness/learning, practice and hope/purpose. I have picked up some “skills” here (ALSnewstoday) and am practicing them. (example: stretching & exercising fingers; mindfully focusing on living; searching for positive purposes).
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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 unique. I am both, a caregiver & starting the journey of a care receiver. My husband of 54 yrs has been a high level (T-4-5) paraplegic for 57 years and altho mostly independent until 5 yrs ago, has become more dependent physically, requiring hoyer lift & electric chair, assist to turn etc. My “minor” limitations (zipping, buttoning, opening, cutting etc) have turned our tables a bit. I think my increasing need has allowed him a new sense of purpose & both of us a greater appreciation of each others understanding, help & opportunities to care. We are having to look more realistically into the future.
I had a brand new experience yesterday, that Ive not felt in our marriage before. I became so frustrated sitting in the drivers seat, waiting for the lift to finish bringing David into the van, attempting to place my hearing aid into my right ear with the right hand/fingers not doing what I needed them to do, speaking patience to myself, and finally reaching my limit,….I threw my hearing aides against the dash as hard as I could, then broke down into sobs. Such simple little things built up into an eruption which felt soooo needed. My husband, had compassion, I even had compassion and somehow we both shared in an unspoken understanding & acceptance & yes, love. Sounds so trivial but I feel stronger knowing we experienced it together and it was real. Hope this makes sense to others. Thanks!
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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 could make a plan for succeeding this next time.
I have my “2nd opinion” appt scheduled next month and your question here reveals to me that I need to plan if I am to succeed in coming home from that trip with a sense of being heard, understood, supported and that I will have received forthright information of my personal disease process.
Now, how do we do that? I wonder if we can practice in front of a mirror our interview of questions, practice our “presentation” of need for answers…with a confidence that we dont presently feel??? (Adage: “practice makes perfect”.)
I never thot of this till “reading myself” in your question. I”m already cheering for you, “go Lisa”! Thank you!
Nancy
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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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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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Whoops…
My question just now should have been directed to Jean-Pierre…., Pardon.
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And Dagmar, I’ll add with Kathy, the thank you for looking deeper, and seeing more. : )
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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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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 & conferencing, at the University level. I have, meanwhile, combed thru you tube videos of people with ALS, cried alot, withdrew from others, thot thru some ramifications how to deal with such a horrid diagnosis. I eventially saw several wonderful videos that gave a sense 0f strength & hope about “not dying with als, but living with als. Death is where we all are headed, no matter what the cause, but life is where we are right now! I found this ALS News Today & am learning how it works & to participate a bit. I CAN stretch & exercise (Thank you, DAGMAR) I CAN do what I can do and am deciding to accept , give leniency to, what I truly cannot do. I even asked a nephew to cut my steak into pieces!! I am working on the heavy possibility of “what if it is ALS” and am searching with a much clearer mind now, for information about other possibilities.
I am now writing down my factual findings that may be helpful, for when I do have my 2nd opinion. (I signed up for membership onto Medscape website which has medically based information, medical articles etc, that I can search thru. You dont have to be a medical professional…scroll down until you find options that fit as non-professional and media.) I am gathering my facts from my previous medical history in past 5 years which could possibly be related. (Even that I had Polio when I was 6 yrs old…now 75; I had an episode of very low sodium which was corrected in an ER with IVs over 3 1/2 hrs 3 years ago which could be significant; etc) Some of these “non-related” issues could be a culprit that no one can pull together if they dont know.
In other words I need to be my very best advocate to get the answer and meanwhile praying for a compassionate, knowledgeable professional to help me get to the right answer, and hopefully right treatment if there is one. I will include you in my prayers as I ask for that help. Yes, seek how you can be seen by someone with fresh new eyes and heart. I am so thankful for this website/these people and all they are doing and you surely are as well.
Nancy
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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 (due to profound atrophy in rt hand and lesser amt in rt hand + worsening abilities) she stated she did not see bulbar signs “yet” but it could be an LMN variant of that. In December, after more blood work was essentially negative, she stated she’d like to send me for an “academic” 2nd opinion. All I know is that I have “pronounced, chronic, neurogenic changes in C7/8 bilateral distribution & Left, L5 distribution ” and definitely a “Lower Motor Neuron Disease.” I am scheduled to see an OHSU Neurologist . I believe my forearm atrophy is worsened and dexterity as well. It is hard not to have answers. But I am trying to learn patience,,,with myself & with medical practice which seems so slow. Hope this answers your question Lisa.