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Amanda replied to the topic Hospice for ALS in the forum Living With ALS 2 months, 1 week 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 months, 1 week 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 months, 1 week 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 months, 1 week 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]

Amanda started the topic What is Your Self-Care Plan? in the forum Living With ALS 2 months, 2 weeks ago

We know that Self-Care is vital, especially for pALS and Caregivers. Self-care is essential for each of us, and if we don’t prioritize self-care for ourselves and our caregivers, how can we expect others to help us when we need support?

When focusing on how to build your self-care plan, it may help to consider the national Substance Abuse a…[Read more]

Amanda replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 2 months, 2 weeks ago

Our forum members amaze me daily. You all ask and answer some tough questions daily! I’m so proud that I am part of such a unique online community. It’s a bitter sweet experience to be honest. I’m sure you can all understand that sentiment. Carolyn, I cannot even begin to put into words how much I have learned from you. Grace to begin with. Th…[Read more]

Amanda replied to the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 2 months, 2 weeks ago

Richard,

Any time a post is deleted or edited, Dagmar and I consult each other and include the other on the response. The member is emailed and we explain why the post or comment was edited or deleted. In our community standards it is very clear that comments are supposed to contribute to the discussion, and provide information or support. You…[Read more]

Amanda replied to the topic Passing away and respiratory in the forum Diagnosis Information and General Questions 2 months, 2 weeks ago

Shannon,

ALS effects each person differently so the exact path and length of time each pALS has is difficult to determine. Do you know if your husband has a genetic mutation or if his ALS is sporadic? How has his progression been so far? Has it been limb onset or bulbar? All of these factors play a part in helping you understand and prepare. H…[Read more]

Amanda started the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 2 months, 3 weeks ago

Have you ever noticed that Dagmar and I occasionally have different opinions on a topic? Sometimes the difference is nothing more than two ideas that exist without really impacting the other idea. Other times we have opposing ideas, beliefs, or thoughts.
One of the first “differences” I recall was about ALS Awareness month. I approached t…[Read more]

Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 2 months, 3 weeks ago

@Martin,
How long does it typically take for a drug to be approved and then made available in Canada? I didn’t realize that the Canadian process was as long as the USA’s.
Amanda

Amanda started the topic Extreme Weather Preparedness, Are You Ready? in the forum ALS Awareness Month 2 months, 4 weeks ago

Depending on where you live, extreme weather or natural disasters can look very different and our responses are different too! Add in ALS, and being prepared takes forethought and action!
Where do you live and what extreme weather do you need to be prepared for?
What extra steps do you take to accommodate for having ALS? (Do you have medical…[Read more]

Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 2 months, 4 weeks ago

Cynthia,
I can “feel” so much anxiety, frustration and pain when I read your post. I’ve lost several family members to ALS; however, I can’t imagine watching your spouse or life partner suffering with ALS and then not having access to treatments that are in the trial phase. I understand that the government has a process for approving treatments…[Read more]

Amanda replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 2 months, 4 weeks ago

@John C.,

That is great news and I think your post was well written! Staying cautiously optimistic is GREAT and I’ll take that kind of feedback from someone involved in the trials. The more I talk the the team at the ALS clinic for the Pre-fALS study I am in I get the same kind of feedback. They are also part of the Tofferson study although I did…[Read more]

Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 3 months ago

Iancu,

You would probably have to have a doctor prescribe the medication. You likely cannot purchase it across country lines.

Perhaps there is someone on the forums from Canada who can provide you with more information.

Amanda started the topic Independence Day!! in the forum Living With ALS 3 months ago

Eighty-three years ago Lou Gehrig, the beloved Yankee, said goodbye to the game and called himself “the luckiest man on the face of the earth” on this day. Today, many pALs face trying to maintain their independence as long as possible, using things like adaptive technology, communication devices, and home modifications.

Are there more things…[Read more]

Amanda replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 3 months, 1 week ago

My sister arrived this week and we were roaming around South Florida the past four days. The end of the school year is always crazy, and this year has been no exception. I just finished because my year was so busy it was extended by three weeks. Some how I missed this news until I popped on to check in. I’ve been popping on to try and keep up t…[Read more]

Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 3 months, 1 week ago

It’s crack how money drives so much!

Amanda started the topic Would you seek out Albrioza treatment? in the forum Research Topics 3 months, 1 week ago

Are we making progress? Canada just approved Albrioza (AMX0035) with conditions for treatment of ALS. This conditional approval requires the pharmaceutical company to continue to gather and provide evidence that the treatment works.
In the United States, the FDA found that Albrioza was safe; however, said it was lacking sufficient evidence…[Read more]

Amanda replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 3 months, 2 weeks ago

Congratulations!!