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Dagmar Munn started the topic Do you have a morning ritual or routine? in the forum Living With ALS 1 day, 22 hours 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 evo…[Read more]

Dagmar Munn replied to the topic What is Your Self-Care Plan? in the forum Living With ALS 2 days, 6 hours 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 2 days, 6 hours 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 2 days, 6 hours 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 5 days, 16 hours 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 6 days, 16 hours 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 6 days, 16 hours 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 week 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 week, 1 day 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]

Dagmar Munn started the topic Are you a part of any ALS support groups? in the forum Living With ALS 1 week, 1 day ago

ALS support groups are valuable for sharing vital information and giving the needed support to patients and family caregivers. These support groups are plentiful in the US, but our forum members live worldwide and often don’t have access to a support group.

Another example is my own, I live in a part of the US that is 20 miles from the n…[Read more]

Amanda replied to the topic When Should They Keep Their Mouth Closed? in the forum Living With ALS 1 week, 6 days ago

Wow, I am learning a great deal from all of you that are sharing. So many things that never even crossed my mind. It is amazing how much we can learn from each other.

Amanda

Dagmar Munn replied to the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 weeks ago

Hi Gail,

I wrote about my experience with a shower chair here: https://alsandwellness.blogspot.com/2020/10/how-i-made-my-shower-safer.html
although mine is not tilting.
Here is a Google link to the types of tilting chairs available.…[Read more]

Dagmar Munn started the topic What are your tips to prepare for a non-ALS doctor’s appointment? in the forum Living With ALS 2 weeks ago

Although we’ve shared tips in this forum before on how to prepare for an ALS Clinic visit (here’s the link) in this time of covid, or even summer colds, there’s always the chance you’ll be visiting an InstaCare type of doctor rather than your regular ALS neurologist. Having to start from scratch with your medical history and medications can be da…[Read more]

Amanda replied to the topic What is Your Self-Care Plan? in the forum Living With ALS 2 weeks, 1 day ago

Katie, you are so right!

Amanda replied to the topic Hospice for ALS in the forum Living With ALS 2 weeks, 4 days ago

Kathy,

My family had Hospice care for both my father (ALS) and my stepmother (Cancer). We used their services for end-of-life care and they were fabulous. The nurse and social worker were so educated, informed, compassionate and helpful for our family. My parents passed away just 11 months apart so we developed a close relationship with our H…[Read more]

Amanda replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 2 weeks, 4 days ago

Amy,

Thank you so much for sharing. Your mom was a valuable member of our forums and she helped many of our members with her input and advice. When a family can think of others when they are going through such a tremendous loss just shows how kind and generous Marianne’s family is. Thank you for taking the time and energy to raise so much m…[Read more]

Amanda started the topic When Should They Keep Their Mouth Closed? in the forum Living With ALS 2 weeks, 5 days ago

When I first started taking care of my father when he had ALS, I referred to myself as his caretaker. I really didn’t see the problem with that term, until much later when a colleague gently educated me about the terms caregiver and caretaker. Thank you, Dagmar.
I was a little embarrassed about my oversight and really thought it should have b…[Read more]

Amanda started the topic Preparations and Planning in the forum Diagnosis Information and General Questions 2 weeks, 6 days ago

Planning for the end of life is always challenging and emotional, with or without ALS. Having ALS often makes a pALS and their loved ones more conscious of the time we have left together. In order to relieve some of the stress, many pALS plan for how they want to address medical care needs and end-of-life plans. This can provide a sense of control…[Read more]

Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 3 weeks ago

Yes, Ralph, range of motion exercises are a great start to help with recovery.

My update – – it’s been 2-1/2 weeks since the onset of my covid, and, I’m finally not coughing (yay!). Still sleeping a lot, but have to say, I do feel better.

Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 3 weeks ago

Hi Kathleen, I think Ralph meant “FVC” – – forced vital capacity. Or… maybe he meant FRS-R (Functional Rating Scale-Revised). It’s what they use in the ALS clinics to gauge the rate of progression of our symptoms.