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Jim Cowgill started the topic Augmented Reality Can Help Communication in the forum Living With ALS 23 hours, 5 minutes ago
Communication is one of the biggest challenges for pALS (persons with ALS). This impediment is further exacerbated if you are male and naturally lack communication and listening skills. Don’t feel guilty, my knuckle dragging brethren, science has proven that our y chromosome essentially blocks any ability to maintain any coherent conversation. F…[Read more]
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Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 1 day, 23 hours ago
Are you on Facebook? There are several ALS groups on Facebook. We could start a FB group for fALS and start there. I’ll do that today.
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Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 1 day, 23 hours ago
Angel, let me do some research and see if I can find anything. I’ll update you in a day or two.
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JohnW replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 2 days, 20 hours ago
<p style=”text-align: left;”>Hello everyone,</p>
I’ve been blessed to be a slow progressor. Something that keeps me going is my love for Our Lord Jesus. I pray with my wife we pray to Him everyday. I offer up my pain and suffering to Him knowing that by by carrying my cross in this world gives me great hope for the world to come.
<p st…[Read more] -
Amanda started the topic The End of Summer in the forum Living With ALS 2 days, 21 hours ago
Can you believe summer is almost over? It feels like I waited and waited for it to begin, and in a blink, it is gone.
Do you have any special events or travel plans for the last part of the summer? Where will you be going and/or what do you have planned? Is there anything special about the end of summer that you enjoy?
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Heidi V became a registered member 2 days, 22 hours ago
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John E Zemcik became a registered member 2 days, 22 hours ago
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Hello John,
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 a…[Read more]
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Hello John,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Eric Jensen replied to the topic Pain in the forum Diagnosis Information and General Questions 3 days, 5 hours ago
Thank you Carol
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Eric Jensen replied to the topic Pain in the forum Diagnosis Information and General Questions 3 days, 6 hours ago
John. My wife and I have read several studies, NIH(reputable), that involved unnecessary fusion/Laminectomy/carpal tunnel procedures, that were not the cause of the symptoms experienced. I believed, because I waited five months before proceeding with my fusion, that I had caused permanent nerve damage to my RLE. I had become “ok,” with my new nor…[Read more]
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Debbie Zolnierowicz replied to the topic EXCESS MUCUS in the forum Living With ALS 3 days, 8 hours ago
Do you see a pulmonologist at ALS clinic? In addition to the medications mentioned, a cough assist device and suction machine can help.
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Maggie Broeren replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 3 days, 10 hours ago
Hi!
I’m Maggie, a pALS, diagnosed 3 years ago. I just started hospice.
As a married couple, we now see a deeper message being presented to us in all things and in new ways. I/we take time to reflect. We spend more time Listening to others and to one another. I’m never afraid to have a real conversation about death, but more importantly about…[Read more]
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Trevor Bower replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 3 days, 11 hours ago
Sometimes I feel like I am a single explorer looking for the magic mushroom that is reportedly growing the forest but nobody has seen it or has any idea it’s appearance or form. As my health deteriorates I might be much more apt to throw caution to the wind and try any mushroom growing under a bush.
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John M C replied to the topic Pain in the forum Diagnosis Information and General Questions 3 days, 13 hours ago
Hmmmmm. The similarities continue. I had a neurologist recommended L4-S1 fusion done for foot drop as well. I have/had stenosis at multiple levels. As it turned out it was probably a good thing as it was difficult to convince anyone that there was more going on. I also find my self exerting to do simple thing like getting dressed. I get out of the…[Read more]
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Jerry Fabrizio replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 3 days, 13 hours ago
Amanda,
That is an interesting idea, Maybe we can a Zoom call for every person that wants to join in America. Maybe too many will join, and we can have smaller groups all over the country. I know there are two other people in Saint Louis with my genetic ALS. I think it would be good to talk to them.
The only place I can communicate with ot…[Read more]
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Eric Jensen replied to the topic Pain in the forum Diagnosis Information and General Questions 3 days, 13 hours ago
Thank you Carol and John! I used the, “find,” option here and there were no results found. What?!? As John said, my calf atrophy has created strain on my knees and ankles. I have been calling my, yet not effected muscle, accessory muscles. Those, “left over,” muscles work quadruple time to ambulate me. I sweat, as if I ran a marathon, when I walk…[Read more]
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MaryConnolly replied to the topic Are you a part of any ALS support groups? in the forum Living With ALS 3 days, 15 hours ago
I joined the in-person caregiver group the week after my husband’s dX in Jan 2020—it was in the small town where I lived so super convenient! Then COVID hit and the group was switched to online Zoom which I think has worked well. We are still doing the Zoom call once a month and participants are from close-by surrounding counties and the group i…[Read more]
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Angel Hernandez replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 3 days, 15 hours ago
Hello Amanda , my name is Angel and I live in Orlando, Fl. I’ve been trying to join a support group in my area but I think the closest one is in Tampa, Fl. I tried making contact to see if I can join a support group even if it’s through ZOOM but to no avail. Do You of any in my area?
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John M C replied to the topic Pain in the forum Diagnosis Information and General Questions 3 days, 15 hours ago
I was undiagnosed until 2 months ago after nearly 3 years of procedures, tests, scans, labs, etc… sure you know. I am diagnosed with PMA as I do not yet have Upper Motor Neuron symptoms. I have had significant pain through out the process and have been told multiple times that NMDs are painless. Not mine. My muscles ache constantly and the pain…[Read more]
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Carol replied to the topic Pain in the forum Diagnosis Information and General Questions 3 days, 17 hours ago
Very similar symptoms also undiagnosed. I take Baclofen which helps some. You should be able to take Tylenol. Best to ask doctor. Good luck to you. It’s a long terrible journey to wait through for diagnosis. Want to share journey I’m here.
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Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 3 days, 22 hours ago
@ Gideon
It sound like a very difficult situation for both you and your wife, and I’m sure that is an understatement. Have you reached out to the ALS association or Hospice? https://www.alstexas.org/ Sometimes these organizations can help provide some care and support and answer some questions. I’m sure you are doing the right things for your w…[Read more]
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Hello Heidi,
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 a…[Read more]
Hello Heidi,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!
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 h…[Read more]