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@Jerry

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.

Angel, let me do some research and see if I can find anything.  I’ll update you in a day or two.

<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]

Thank you Carol

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]

Do you see a pulmonologist at ALS clinic?  In addition to the medications mentioned, a cough assist device and suction machine can help.

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]

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.

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]

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]

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]

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]

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?

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]

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.

@ 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]