@aloahfrank
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Aloha Frank replied to the topic Urgently referred to ALS clinic. Anyone here have respiratory and bulbar onset? in the forum Diagnosis Information and General Questions 1 year, 10 months ago
Hi Anne. I too experienced uncontrolled drooling and total loss of speech just a few months after I was diagnosed with bulbar ALS in March 2020. Like you, I was embarrassed whenever I drooled and often didn’t realize it until it dripped down my chin. Now I wear a bib, even at night. But the good news is my doctor prescribed HYOSCYAMINE SULFATE…[Read more]
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Aloha Frank replied to the topic Factors that influence your thoughts and feelings in the forum Living With ALS 1 year, 11 months ago
You are absolutely correct Kathy. I am a bulbar pALS and continue to experience a very rapid progression of the disease. I have not experienced signs of depression because I accepted my fate from the beginning and know that feeling depressed will only make things worse, not better. It is what it is, no point whining about it. I prefer to focus my…[Read more]
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Aloha Frank posted a new activity comment 2 years ago
Hi Kathy. Appreciate your posts and for understanding what most pALS are going through every day. Wish there was a way to at least stabilize this horrible disease so we could adapt and make the best of it. However, short of that, all we have to look forward to is more unimaginable suffering with every passing day. Thankfully, Hawaii passed a…[Read more]
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Aloha Frank and
Kathy stitz are now friends 2 years ago
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Aloha Frank replied to the topic ALS Association Announces Goal of Making ALS Livable by 2030 in the forum Research Topics 2 years ago
Good Lord, setting a goal like that is merely a weak attempt to fool people into believing that making ALS ‘livable’ nine years from now is attainable when we all know it’s nothing but pie in the sky nonsense. Nothing has been done in the last 100 years to come up with anything close to reaching that imaginary goal, so what makes them think that…[Read more]
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Aloha Frank replied to the topic ALS – A Looked-over Sickness in the forum ALS Awareness and Advocacy 2 years ago
Right on Richard. A Lack of Support says it all. Don’t count on any improvement during our limited lifetime.
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Aloha Frank and
Jennifer Zink are now friends 2 years ago
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Aloha Frank replied to the topic Very very nervous … dont know what to do in the forum Diagnosis Information and General Questions 2 years, 1 month ago
Hi Russell. You may be jumping the gun on the possible diagnosis. While there is definitely something going on, it may or not be early symptoms of ALS. When I first experienced symptoms a year ago I noticed a weakening of my left side, plus a very slight problem speaking. I also began to feel tiny little twitches on my left arm and leg, which…[Read more]
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Aloha Frank replied to the topic Speak up and let us know what topics are useful! in the forum Using our Forums 2 years, 1 month ago
Hi Cindy. Sorry to hear about the terrible pain you are now experiencing. I am a year into my diagnosis and am progressing very quickly, having already lost use of both legs and all of my left side. I cannot speak and have a difficult time eating and swallowing. My right arm/hand barely function so I can type using the ‘hunt ‘n peck’ method, but…[Read more]
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Aloha Frank posted a new activity comment 2 years, 1 month ago
Thank you Astrid. Nice to hear from you. We thought about installing a lift system but rejected it for several reasons. We instead are having a commercial elevator installed, which should be completed within the next few weeks. We live across the street from the beach and were required by local ordnance to build our home in 2010 a minimum of eight…[Read more]
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Aloha Frank posted an update 2 years, 1 month ago
Hi Kathy. Hope you’re having a reasonably good day today. All we can do is make the best of each and every day, as difficult as that can be. My wife, caregiver and a friend managed to get me downstairs and into the passenger side of my little 1990 Eunos convertible yesterday for a ride around the Island. My good friend Chris from college, who…[Read more]
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Hi frank i will also having a lift so i can get to my sleeping and bathroom ! i live in a small house with lots of stairs and levels. Even the entree to the garden has a stair unfortunately that is stil a problem to solve, but maybe if my husband can find a way to get me down the stairs safely we can sit in the garden with our kids this summer.
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Thank you Astrid. Nice to hear from you. We thought about installing a lift system but rejected it for several reasons. We instead are having a commercial elevator installed, which should be completed within the next few weeks. We live across the street from the beach and were required by local ordnance to build our home in 2010 a minimum of eight…[Read more]
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Aloha Frank replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 2 years, 1 month ago
Hi Richard. I agree with you 100%. I too am more concerned with quality of life than life expectancy. I understand that others may have a different opinion and that’s okay. But for me, if there is zero quality of life then there is no point suffering with this horrible condition any longer than I have to. I’ll be 76 next month and had a great…[Read more]
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Aloha Frank replied to the topic Technology and ALS Research in the forum ALS News 2 years, 2 months ago
I agree Astrid. Surely there must be some form of assistance to enable at least some limited use of a limb lost to ALS. I’m surprised there isn’t anything available, at least nothing that I’m aware of. Lost total use of my left arm and leg months ago. Would be great to have at least some use of both. I know I’m losing use of my right side too. Not…[Read more]
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Aloha Frank posted a new activity comment 2 years, 2 months ago
Hi Rich & Victor. Over the past 12 months I’ve researched countless ‘potential’ treatment articles and ‘trials’ that all claim ‘promising’ results, but the fact is the way our snail-paced government system works nothing truly effective to help advanced pALS will become available during my lifetime. God bless all pALS who hold out for a miracle,…[Read more]
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Aloha Frank replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 2 years, 2 months ago
Hi Richard. I’m hangin’ in there day by day, but I see nothing but quickly fading stars out there and know they will all eventually fade away into total darkness while I sit here and continue to suffer with this dreadful disease. I see no logical reason to prolong the inevitable. The sooner I leave the building, the better.
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Aloha Frank replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 2 years, 2 months ago
Thanks Victor. I agree. Without any ‘quality of life’ what is there? Nothing but suffering in misery for months or years until you die? Makes no sense to me. I’m ready to go right now.
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Aloha Frank replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 2 years, 2 months ago
Hi Kathy. Yes, all we can do is try to get through every day as comfortably as possible and be thankful for loved ones and caregivers who do their best to help us day in and day out. God bless them. I don’t see any reason to hang on to false hope when we all know that our future will only bring more pain, suffering and misery. That’s no ‘life’ for me.
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Aloha Frank replied to the topic ALS Life Expectancy vs. Quality Of Life in the forum Living With ALS 2 years, 2 months ago
I agree that the quest to live longer with ALS is pointless if the quality of life is zero. Not only does one with advanced ALS have to suffer with the disease as it continues to worsen day by day, but the burden others have to endure caring for your every need 24/7 is cruel. There is a huge difference between ‘life’ and living. I am well into my…[Read more]
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Aloha Frank and
Richard are now friends 2 years, 2 months ago
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Hi Rich & Victor. Over the past 12 months I’ve researched countless ‘potential’ treatment articles and ‘trials’ that all claim ‘promising’ results, but the fact is the way our snail-paced government system works nothing truly effective to help advanced pALS will become available during my lifetime. God bless all pALS who hold out for a miracle,…[Read more]
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Aloha Frank posted an update 2 years, 2 months ago
What does it feel like knowing that I am dying and there is nothing that can be done about it? I’ve known for over a year now that it is coming, and I do not fear it. What is there to fear? I always hoped that when my time was up that I would die peacefully with as little pain or suffering as possible, but I also understand that I have no say in t…[Read more]
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Hi Kathy. Appreciate your posts and for understanding what most pALS are going through every day. Wish there was a way to at least stabilize this horrible disease so we could adapt and make the best of it. However, short of that, all we have to look forward to is more unimaginable suffering with every passing day. Thankfully, Hawaii passed a…[Read more]