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Dagmar Munn replied to the topic Social Death in the forum Living With ALS 3 weeks, 5 days ago

I can relate to every scenario that has been mentioned! Although I’m not in a wheelchair, I do have to rely on using my mobility scooter when out and about and especially when attending social situations. And yes, it’s a shock to find myself at eye-level to belt buckles and handbags …and always having to look up.

I think we pALS have to first…[Read more]

Amanda replied to the topic You're Not You in the forum ALS In The Media 3 weeks, 6 days ago

@Katie,

Your perspective is eye opening. I haven’t read Tuesday with Morrie, yet. I think reading verses watching a movie may be easier to digest, and I may be able to learn even more. There is something about taking my time to digest what I am taking in when I am reading, and just being able to re-read, and pause and think about what I’ve r…[Read more]

Dagmar Munn replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 4 weeks ago

There are so many different styles of AFOs – – and feet – – that I think everyone has a different experience with them.

If they hurt your feet, keep trying out ways to help alleviate it…even maybe getting new ones. I first had to find a new brand of shoes, then add padding, take that out and finally pad my toes. Just keep looking for a…[Read more]

Dagmar Munn replied to the topic What A.I. (artificial intelligence) home devices help you live with ALS? in the forum Living With ALS 4 weeks ago

SAVE THE DATE – – Sept 15th

A special online presentation “Home Automation for People Living with ALS”

With the advancement of technology and home automation systems, tasks that were previously difficult for people living with ALS, such as turning the lights on and off in your home, have become much easier. Team Gleason’s mission is to have p…[Read more]

Dagmar Munn replied to the topic What A.I. (artificial intelligence) home devices help you live with ALS? in the forum Living With ALS 4 weeks ago

ouuu 🙂 Thank you Beth! I learned something new! I’ll try your method!

Amanda started the topic As a caregiver, What Services Do You Use? in the forum A Forum for ALS Caregivers 1 month ago

Many caregivers are spouses or adult children and they are taking on all of the responsibilities for their pALS alone. That can have a devastating effect both on their mental and physical health. There is help out there, but you need to be willing to ask and accept the help. That can be very challenging, especially when your needs and the…[Read more]

Dagmar Munn replied to the topic What A.I. (artificial intelligence) home devices help you live with ALS? in the forum Living With ALS 1 month ago

I enjoy listening to music from our Alexa while I’m at my computer… but even though my voice “activates” the device, my speech is too slow and it shuts down before I’m finished speaking. So, I type the command into my computer (on a Word doc.) put the volume on high, and hit the “read aloud” key. This way my computer’s “voice” is recognized by…[Read more]

Dagmar Munn started the topic What A.I. (artificial intelligence) home devices help you live with ALS? in the forum Living With ALS 1 month ago

During this past decade, A.I. (artificial intelligence) devices have evolved from simply novelty items to essential to our daily lives. Everything from Alexas, to Siris, to even now, has “smart homes” that respond to voice commands and sounds.

Being voice-challenged myself, I initially disliked voice-activated devices. But have invented my own…[Read more]

Amanda started the topic I’m so Frustrated!! What about You? in the forum Diagnosis Information and General Questions 1 month, 1 week ago

“ALS is frustratingly difficult to diagnose. Consider these ALS misdiagnosis statistics: In about 10% to 15% of the cases, patients initially diagnosed with ALS actually have another disease or condition instead (false positive). Nearly 40% of people with ALS initially receive a false negative.”

Not only is ALS difficult to diagnose, but o…[Read more]

Amanda replied to the topic EXCESS MUCUS in the forum Living With ALS 1 month, 1 week ago

I’m so sorry for your loss. Thank you contributing and keeping up with the forums.

Amanda

Dagmar Munn started the topic Do you have a morning ritual or routine? in the forum Living With ALS 1 month, 1 week ago

Ten years ago, if you had asked me how I was feeling when I woke up in the morning, I would’ve ignored you and disappeared beneath the blankets. That was during my first year with ALS, a time when I felt the weight of worry and having a life disrupted by a disease I didn’t even understand. Fast-forward to today, when my new morning routine has…[Read more]

Dagmar Munn replied to the topic What is Your Self-Care Plan? in the forum Living With ALS 1 month, 1 week ago

I have always loved the quote “Taking care of myself is not an act of indulgence, it is an act of self-preservation.” Especially now that I have ALS!

In my post “With ALS, Self-Care Isn’t Selfish, It’s Essential” I share tips and ideas that anyone can use.

Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 1 month, 1 week ago

The current covid variant seems to be super-contagious and hits hard. My recent experience with covid reaffirms my commitment to follow all the guidelines and wear a mask in public. ….when at the grocercy store and I am riding my mobility scooter, I realized that it makes me shorter than the shoppers around me – – and they are breathing “down”…[Read more]

Dagmar Munn replied to the topic Augmented Reality Can Help Communication in the forum Living With ALS 1 month, 1 week ago

Thank you Jim for this detailed and informative post!

A couple of questions for you…

Regarding voice banking, I never was convinced that the effort of doing all that recording was worth the outcome. It seems most pALS (you included?) use the synthesized-you-voice for novelty applications. With the proliferation of computer-generated voices…[Read more]

Amanda started the topic Were YOU on the List? What could you do to help others stay OFF the Misdiagnosed List? in the forum Diagnosis Information and General Questions 1 month, 2 weeks ago

ALS is often misdiagnosed as we’ve discussed. This list contains many of the illnesses/diseases that ALS is often confused with by medical professionals.

Myasthenia gravis
Lambert-Eaton myasthenic syndrome
Lyme disease
Carpal tunnel
Poliomyelitis and post-poliomyelitis
Heavy metal intoxication
Kennedy syndrome

<…

[Read more]

Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 1 month, 2 weeks ago

@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.

Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 1 month, 2 weeks ago

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

Amanda started the topic The End of Summer in the forum Living With ALS 1 month, 2 weeks 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?

Amanda replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 1 month, 2 weeks 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]