I can totally see how you ended up down the peptide rabbit hole, there’s a lot of interesting stuff out there. 😄 Just one thing I’d be careful about: not everything involving amino acids is automatically a peptide. GHRP-6, for example, is a peptide, but individual amino acids are different.

The ALS claims are definitely interesting, though.…

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Watch the replay here: https://alsnewstoday.com/video/life-and-caregiving-with-als-webinar/

Caregivers & pALS: 

What’s something you stopped doing, or stopped expecting of yourself, that made things more manageable? 

This week, ask your caregiver: 

What’s one thing about caregiving that they wish more people understood? 

Come back and share what they said. 

Self-care isn’t an indulgence; it is necessary for everyone – especially family members who are also caregivers for a loved one.

How do you and your family take care of your own self-care needs — while providing caregiving for a loved one?

You have built a wonderful website! I’m sure it will help many newly diagnosed ALS patients. Thank you for your hard work.

My wife was diagnosed about 2 years ago, when we started this journey it was really confusing know what we should do first, where we should go. What it all meant on top of the emotions of it all. I built a website to pretty much cover what we would have wanted when we first started. It covers grants, benefits, clinical trials and local…

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Caregiving can be an important part of life with ALS, and many of the challenges families navigate extend beyond any one diagnosis.

In honor of National Family Caregivers Month, we’re inviting the ALS community, including family members and caregivers, to join In This Together: Life & Caregiving with ALS, a candid roundtable discussion centered…

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Is there a resource, tool, or person that’s made caregiving easier for you or your family? Drop it below

I totally agree! We have an accessible van with a side ramp — many times, someone else parks encroaching on the handicapped painted lines, leaving the space too small for our ramp to extend. We have to pull out into the open area of the lot, and I roll up there.

I’m sorry your nephew didn’t have the correct diagnosis from the start. So many physicians misdiagnose ALS — leading to delays in treatment.

Yes, more research is needed. I wonder if the pharma companies are directing research and dollars to their products?

November is National Caregiver Awareness Month. Before it starts — what does your caregiver mean to you? 

I want to say it was NOT guided by insurance

But my uninsured nephew was not properly treated during the onset of symptoms.

His onset had a stroke presentation they did not call a stroke code or even do a CT scan.

I practice emergency medicine in NYC I am a NP-

At a minimal this should have been done it took three ER visits

We were…

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I wish that the spaces next to handicapped spots for ramps were blocked off so that it prevented anyone from being able to park there. It would also be nice if law enforcement would actually write tickets for people who did park there. The other thing is I wish more places had caregiver bathrooms.

I am S of Tucson, with a view of the mountains. You are so right: get out of the city 😉

I lived and taught on the Gila River Reservation For three years which is just behind South Mountain. I always tell people Arizona is a beautiful place to vacation whether you go north to the Grand Canyon on NW 2 4 Corners or S to Tucson or Bisbee It is a beautiful state. I tell them just land in Phoenix and get out of

Happy belated birthday BroJoe! You are so right about the effort needed to get dressed in warm layers of clothing. That’s why I’m grateful I live in southern Arizona (shorts weather almost all year round), and not in cold Iowa, where I grew up. Lucky you, being able to return to the south! 😉

I just spoke to Tim Gleason. They are an amazing organization. The woman I spoke to was so sweet and so helpful. She even convinced me that maybe I can go scuba diving once again.

I just came from the north having celebrated my birthday U in New York. It was beautiful seeing the autumn leaves once again that I haven’t seen in many years since I live in Miami. But having been up there I realize it’s much harder having an ALS in colder temperatures. Putting on long socks Long pants shirts A long sleeve shirts… Read more

I don’t have a great way of tracking them, I’m so disheveled and A.D.D. I’ll use a post it notes app on my laptop, or the notes feature on email, or an actual email. I’ve used the websites Google Keep, and Evernote. The only way I sleep at night, is knowing that I update my symptoms and conditions on my Patients Live Me profile. Would love…

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Tracking ALS symptoms can feel overwhelming, especially when they change from day to day. But having a record — even a simple one — can make medical appointments easier and help you advocate for yourself.

The tracking doesn’t have to be perfect. Sometimes it’s a few notes in your phone. Sometimes it’s voice memos or a list with paper and…

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Even though I try to maintain some “normalcy” in what I do (brushing my teeth, getting dressed, eating, etc.), the BIG change over time has been how long they take. What used to a simple few minutes to put on my shoes now takes 10-15, getting fully dressed is a half-hour. Time is something I don’t want to waste or use up needlessly.

I got mine from Team Gleason foundation. Long term loan.

Bravo Rosemary! Instead of giving up and being in a mental funk — you brainstormed an alternative way. It’s always interesting how our brains automatically fall back on “there’s only one way” thinking. ………when you can’t go over the mountain, go around it.

Ditto here on dressing as well! But more concerning for me, was after having several falls, I was told I should not be using my walker to get around. This created an even bigger problem of not being able to showering. My tub transfer bench could not fit through the glass enclosure door opening – yikes! What to do now??? Took a few days…

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I used to be able to get dressed while standing — even balancing on one foot, then the other- to put on pants and socks. Now, I get dressed while sitting on a chair.

Life with ALS can drastically change the way you get dressed, cook, write, drive, shower, and open containers. Although the change doesn’t happen overnight, over time, some people with ALS find they have to change how they tackle certain tasks. 

What’s one everyday task you’ve had to learn to do differently?

Look at Klano 40 wheelchair. Traveled in Asia with it. Only about 38lbs.

I’ve seen people using EZ Lite Cruiser — https://www.ezlitecruiser.com/

They are narrow, lightweight, and foldable.

I got mine from the Gleason foundation. It has been a very very big help. Your should contact them.

I am looking at purchasing a power wheel chair for travel. Has anyone Dealt with the Ghost Riders Company. Or would you like to suggest another company that you find trustworthy. I like the Ghost Riders things but they are terrible at getting back to me. They promised to call they never do they promised to email they never do. Thanks for your help.

Thank you for your years of dedication to your many patients. I’m sending you hugs across the miles.

I am also in the same boat. My legs are very weak and turning in bed is the big challenge. I got a height adjustable and head/leg adjustable hospital bed. It help a lot since my hands are getting weaker now.

I too, am a person of Faith, and believe what happens to us in our lives, is out of our hands. I was diagnosed this past January and was totally caught by surprise. After a year of searching for an answer, it was almost a relief to find out after having no explanations as to what was happening to my previous, very healthy body. I was still…

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Yes, I have had PT since being diagnosed back in January. I started reading everything I could get my hands on. I am a nurse, and spent 23+ years as a Director of a medical equipment company. One of my children also has a developmental intellectual disability so very familiar. Additionally, when I left my role as a director, I worked with…

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I am living each day more thoughtfully than ever before andI have found I can consciously developdesirable qualities such as compassion empathy and gratitude.

Rosemary, do you do any physical therapy (either on your own or with a PT) to help keep your torso and leg muscles strong?

Well I am a man of prayer and have been my whole life so I know where I’m heading. I think the best thing about learning I had ALS Is that I know my end is coming and so I have more time to prepare for it both in being with family getting my heart correctly set in the right direction.

I have just lower leg involvement currently. #1 Challenge -Getting comfortable in bed and getting a good nights rest. Still in a “regular” bed. I have a bed cane on one side and my significant others arm to “pull on” to help me turn & lay on my side because I can’t sleep on my back. Hate waking him up to bother him during the night to help me…

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Here is a helpful video:

https://www.youtube.com/watch?v=fEWTQyVtZh0

Not being able to speak, difficulty swallowing and excessive saliva

Can you recommend any videos on how to use a dressing stick?