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ALS Life Expectancy vs. Quality Of Life
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I meant to say you lose the ability to walk, talk, eat, and breathe. I wouldn’t even know how to actively communicate to lawmakers about the ALS diminished quality of life like Richard said so does anyone have any information about this?
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Hi Kathy, I’ve communicated to lawmakers by being notified from articles by alsnewstoday.
Amanda posted this information back in January 2021
https://alsnewstoday.com/forums/forums/topic/right-to-try-act-2/
Other possible ways:
https://helpmayuri.com/mobilize
Rich
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@Kathy, have a look at this website to find out how to advocate for pALS and communicate with lawmakers.http://www.alsa.org/advocacy/helpful-hints-for-advocates.html
It’s a great idea to get involved, not only are you doing something to help all pALS, but may also be good for you! My cousin, Jessica, went to Capitol Hill and met with lawmakers during her journey. Her and my other cousin, Diana Wunning, have been instrumental in helping advocate and educate about ALS.
https://secure2.convio.net/alsa/site/SPageServer?pagename=STL_ALS_Across_America_Gump_Family
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Hi All, below are a couple of additional websites for ways to contact your US government officials:
Congress
https://www.house.gov/representatives/find-your-representative
Senate
https://www.senate.gov/senators/senators-contact.htm?OrderBy=state&Sort=ASC
Rich
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I was talking to my nurse at the Infusion Clinic yesterday, as I was getting my Radacava, and she had a very interesting thing to say. We were talking about ALS and how it affects a person’s life. We were talking about taking things one day at a time and how a positive attitude can only help, it would never hurt to have the best focus we can.
She then told me about a study that was done and the purpose was to determine what a person’s mindset and focus could do, and if it could possibly make a difference. She said they gave one group of people a squeeze ball, and they were told to squeeze it often during each day. The other group was not given a ball, and instead they were told to close their eyes and pretend they were squeezing a ball, and imagining their hand was getting stronger as a result. After a set period of time they brought back the participants in both groups. They tested each person’s hand strength. Amazingly, both groups had significant increased strength in their hands!! The determination as a result, was that your mind and your thoughts CAN make a difference! It was a simple study, but certainly gives reason for hopefulness that our attitude and our minds can only help our body, and why not try to be positive, as it certainly can only help us!
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Carolyn Barry
That is interesting. I did a little research and read a couple studies. Not sure whether it’s positive thinking or the techniques used in the tests. They taught people how to mentally exercise doing same as physical exercise. I guess the theory is exercising brain element of muscle activation. Yielded good results vs test groups. I wonder if muscle mental exercise would work for us pALS? By the way I am a big believer in positive thinking besides.
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Think what Richard implied was doctors should concentrate more on quality of life, not only longevity. The question wasn’t ‘What is quality of life with ALS, that can be objective, different from person to person! Quality of life.. As for myself, I was very active swimming, hiking in mountains, daily walking in the park, exercise at the gym and working! It’s been a free fall ever since ALS, can’t do any of those activities! But I do try to find different and new activities to keep busy and upbeat! Don’t know when my time is up, trying to make the most of each day!
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@Richard, this was a great post with excellent discussion. It is really interesting to read the responses. I agree that attitude and positive thinking can make a difference on not just our mental health, but our physical health as well.
Carolyn, I’d love to read about the research your nurse mentioned. Do you think you could get information about it and we can see if we can find an article about it?
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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 life. Now that ALS has destroyed any hope of getting better, I’m ready to ‘leave the building’ the sooner the better. You expressed my thoughts perfectly. Thanks for your post.
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I agree with you, Frank. I have a poor quality of life as well so I understand your feelings. Like you said, there’s no hope of getting better with this condition and it’s just a lot of suffering. Thanks for your post and best wishes.
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I remember a psychological suggestion, some years ago, that positive thinking (self fulfilling prophecy) helps an individual attain a positive result. Subconsciously we make choices that helps us get to what we want to achieve and avoid things which which would distract us and make us miss our target. Depressed or addicted people tend to make wrong choices and end up going in that direction.
I have strong feelings about the quality of life. Now being an ALS victim, I want to abide with that attitude as opposed to lengthening my life. I know that people who are born with disabilities or experience them later in life, being it mentally and/or physically, sometimes figure out how to achieve beyond, what the rest of us think are, their abilities. Helen Keller is certainly one profound example. There have been many other people who have astounded us in what they have been able to achieve.
I have finally been diagnosed with Bulbar ALS, eighteen months after me speech started slurring, so far, but my mind and limbs are still functioning adequately. I anticipate that it will get to my lungs next and I am not inclined to have a tracheotomy. I have had a good and interesting life and, in spite of not living as long as I thought would be normal, I am adjusting my expectations of what my future will be. I don’t plan to become totally dependent on my loved ones while they watch me deteriorate. On the ALSFRS-R I have dropped from 48 down to 36, eating and swallowing is becoming very difficult and cumbersome. My speech therapist has been a big help with my current issues and my family.
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