@kathleen
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Kathleen B (Katie) replied to the topic CLENBUTEROL in the forum Research Topics 2 months, 3 weeks ago
Thank you Dagmar & Kathy S, I appreciate your insightful perspectives–helpful in my situation as I will consider all the research & trial info more in light of ‘read-only’…good to know things are going on, keep a list for future perhaps, but not pursue or anticipate a ‘when’ factor. INDEED, the daily challenges are enough…focusing on the…[Read more]
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Kathleen B (Katie) replied to the topic CLENBUTEROL in the forum Research Topics 2 months, 3 weeks ago
Besides overall confusion about most things ALS, (as 8-9mo newly diagnosed) this concept of clinical trials and research into helpful items is the UTMOST mind-boggling! While it seems to be that there are many things new study ‘treatments’ underway to help slow progression or help with some symptom or another of sporadic or familial ALS, the…[Read more]
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Kathleen B (Katie) replied to the topic 2022 in the forum A Forum for ALS Caregivers 3 months, 2 weeks ago
An early May 2021 diagnosis for me “changed our life as only those who have had this diagnosis understand.” (Thank you Mary, your words are a spot on description!) …and I have been with the love of my life for just 37 years…hoping to make it to 40 at least! My struggle at the moment is the fear that something will happen to my husband, b…[Read more]
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Kathleen B (Katie) replied to the topic You're Not You in the forum ALS In The Media 3 months, 2 weeks ago
I, too, am not ready to see movies about someone who has ALS…but I am just 8 months into being a pALS. I am making a list as I see items mentioned…and I would like to watch these with my husband caregiver at some point…but not yet. My 1st choice of ‘to come’ learning is having made the decision to re-read “Tuesdays with Morrie” (wr…[Read more]
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Kathleen B (Katie)'s profile was updated 3 months, 2 weeks ago
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Kathleen B (Katie) replied to the topic Can anyone give advice in the forum Diagnosis Information and General Questions 4 months, 1 week ago
WOW! A very extensive list Richard—but VERY helpful. I’ve been going to a University ALS Clinic in Michigan (USA), since diagnosis in May 2021, which was: Limb onset (left foot drop) Sporadic ALS @ age 65…none of 33 known genetic markers at all…likely an environmental toxic impact unique to my particular body system.
…not much peace of mind sin…[Read more] -
Kathleen B (Katie) replied to the topic Is this more progression? in the forum Diagnosis Information and General Questions 9 months, 4 weeks ago
Lisa,
Thoughts & prayers for you, your daughter & grandchildren is what I can offer best…and I truly will do so.
I know the angst you describe regarding the body changes…and lifestyle changes…and the Neuro dr.’s ‘hedging’ (the most frustrating, unexpected piece)…tho’ I also cannot imagine how it would be to ‘go to work’ every day and…[Read more]
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Kathleen B (Katie) replied to the topic Virtual Meeting in the forum ALS Awareness and Advocacy 9 months, 4 weeks ago
I’m a recent Forums join–interested in the Virtual meeting idea too–best time for me is in the 10am-3pm time range– Eastern (Daylight savings) Time Zone of the United States.
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Kathleen B (Katie) replied to the topic AFOs: Are they worth it? in the forum Mobility Aides, Assistive Technology and Medical Equipment 10 months ago
Hi all,
I’m new to Forums, but got interested in ‘joining in’ because of some of the discussions. I’m really new to ALS (2 months ago diagnosis)…but I do already have both AFO’s and a rollator walker. I was not a fan of having or using either right away…but I was more frustrated with moving slow to be safe and avoid falls (due to foot dr…[Read more]
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Kathleen B (Katie) posted a new activity comment 10 months ago
Thank you Dagmar,
I really enjoy your writing style and input of practical things! Even made a print copy of one item ( the ‘new’ new normal)…as it helped me figure out a way to share ALS diagnosis with a handful of close friends. I look forward to sharing and learning. Such as: I read there is a way to ‘private message’…how is that done?…[Read more]-
On your profile page you’ll find the option to send a “message” (public) or send a “private message” – – choose that one if you don’t want it seen by all members. Dagmar
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Kathleen B (Katie) posted a new activity comment 10 months ago
Thank you Amanda,
I’d like to go by the name ‘Katie’ for the forum–how do I do that without messing up my ‘user name’ (which said must be real name). I have been reading the ALS Digest & forums a month now…just took some tech help to figure out how to register, (LOL! have not done any social networks, just teaching technology things with IT…[Read more] -
Kathleen B (Katie) became a registered member 10 months, 3 weeks ago
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Hello Kathleen,
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…[Read more]
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Thank you Dagmar,
I really enjoy your writing style and input of practical things! Even made a print copy of one item ( the ‘new’ new normal)…as it helped me figure out a way to share ALS diagnosis with a handful of close friends. I look forward to sharing and learning. Such as: I read there is a way to ‘private message’…how is that done?…[Read more]-
On your profile page you’ll find the option to send a “message” (public) or send a “private message” – – choose that one if you don’t want it seen by all members. Dagmar
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Hello Kathleen, 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 l…[Read more]
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Thank you Amanda,
I’d like to go by the name ‘Katie’ for the forum–how do I do that without messing up my ‘user name’ (which said must be real name). I have been reading the ALS Digest & forums a month now…just took some tech help to figure out how to register, (LOL! have not done any social networks, just teaching technology things with IT…[Read more]
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