Old 05-17-2018, 03:28 PM #1 (permalink)
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Default Dear Past and Current Caregivers

I want you to write a book. I would like as many of you as want to contribute 5+ pages about what you have learned about, ALS including tips and tricks, what you have learned about life living with a PALS, and life after your PALS has left.

I would put all my energy that I have left into compiling it into the quintessential ALS guide. And finding a way to publish it.

With so much rubbish out there i think this will be very helpful. email me your documents at:

precisegeosystems at gmail dot com

I will include a few paragraphs as introduction from some of our PALS.

Please help me out.

Last edited by ShiftKicker : 05-17-2018 at 08:27 PM Reason: edited email address to prevent skimmers (thanks Greg!)
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Old 05-17-2018, 04:10 PM #2 (permalink)
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Default Re: Dear Past and Current Caregivers

Excellent idea, Pete. And a proud legacy.

But you're missing half of potential contributors by only asking cALS !
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Old 05-17-2018, 05:00 PM #3 (permalink)
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Default Re: Dear Past and Current Caregivers

please include PALS you are of course right.
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Old 05-18-2018, 05:07 AM #4 (permalink)
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Default Re: Dear Past and Current Caregivers

depending on the feedback we may do one book from the CALS/PAST CALS point and a second from the PALS
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Old 05-18-2018, 06:21 AM #5 (permalink)
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Default Re: Dear Past and Current Caregivers

Pete, what a fabulous project. You continue to amaze and impress.

To be clear, we are looking for practical tips and tricks for those dealing with this, rather than stories to educate the rest of the world. This site and these people are such a wealth of knowledge-

I have been totally unreliable on the writing/posting front this year, but I will give some thought to what might be most valuable. Perhaps traveling with a PALS and dealing with (in)accessible rooms. I have no cruising experience, so maybe someone else can take that.

Becky
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Old 05-18-2018, 08:43 AM #6 (permalink)
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Default Re: Dear Past and Current Caregivers

"To be clear, we are looking for practical tips and tricks for those dealing with this, rather than stories to educate the rest of the world. This site and these people are such a wealth of knowledge-"

Yes "practical tips and tricks for those dealing with this" but also emotianal. I think some stories explaining the effects of how CALS have to deal with life after ALS dx and after death. i think i will try and break each persons document into topical sections that can offer help. example some of your story in one chapter will be tips, some in another chapter might be a story on how you deal with a "ramp or poop" accident.

all of this is important. if possible a 1 paragraph bio could be put at the back for each contributor.
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Old 05-18-2018, 10:16 AM #7 (permalink)
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Default Re: Dear Past and Current Caregivers

I love this Pete! I will work on something to send you.
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Old 05-18-2018, 05:22 PM #8 (permalink)
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Default Re: Dear Past and Current Caregivers

Pete, attached is the doc I PMed you about.
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File Type: pdf ALSInfo12.pdf (346.5 KB, 57 views)
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Old 05-18-2018, 05:33 PM #9 (permalink)
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Default Re: Dear Past and Current Caregivers

this is an excellent document with great resources. i was thinking about being a bit more "story" oriented and "personal" in nature. but in light of this i can hold off if there is no need.
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Old 05-18-2018, 06:51 PM #10 (permalink)
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Default Re: Dear Past and Current Caregivers

Pete, I think it very important to include the emotional aspect of ALS from CALS and PALS perspectives as well as the whole mental part of ALS which as we all know can be devastating on some days. Like you said...something a little more personal in nature. What a great idea!
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Old 05-18-2018, 07:33 PM #11 (permalink)
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Default Re: Dear Past and Current Caregivers

Quote:
Originally Posted by tripete View Post
this is an excellent document ... but in light of this i can hold off if there is no need.
Just to publically reiterate what Pete and I already discussed:

Oh hell no! Our journeys have been different, your story will stand on it's own merits.

I offer mine solely as input, and I'll be honored to add a link to your story in my doc.
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Old 05-18-2018, 07:54 PM #12 (permalink)
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Default Re: Dear Past and Current Caregivers

Greg that is one magnificent resource you have created.

Pete I agree the story-telling is immensely important for that personal side of normalising what people are going through. That was one of the bigger motivators for why I wrote my book and website.

We can never have enough resources for people covering the many aspects and experiences. Thanks for wanting to do this.
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Old 05-18-2018, 09:36 PM #13 (permalink)
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Default Re: Dear Past and Current Caregivers

Pete I know time is of the essence, and I will do my best. My time is currently limited due to having my father with me as well and double caregiving for a few more days. I will try.

Hugs,

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Old 05-19-2018, 05:54 AM #14 (permalink)
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Default Re: Dear Past and Current Caregivers

thank you for your support. as i get more info i will share where i am at in the process. Tillie can you remind me where your site is? thanks to everyone again.
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Old 05-19-2018, 06:44 AM #15 (permalink)
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Default Re: Dear Past and Current Caregivers

Here is a preview of how I was thinking about the tone of the document, where you see the #1 and 2 will be footnotes:

ALS
An all inclusive guide that does not cover nearly enough


When a medical professional suggest to an individual or DR Google diagnosis you with ALS, most likely the first thing that you do is run to your favorite web browser to try and learn more. From my experience and the experiences of many of us with the illness and those that care for us, what you read will be mostly useless tripe.

ALS, goes by several names the two most common are MND, or Lou Gehrig's disease. I do not like the Lou Gehrig's title as it somehow implies that he was the first with this illness or that in some way he was more important than the rest of us who suffer from it. Lou was a baseball player and I suppose the reason he became synonymous with ALS is because the world got to view him waste away, -the same as countless numbers of us have, only without the attention he received. I don't blame Lou, I just don't like the name.

When searching for ALS you will find that is is: "Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.

ALS belongs to a wider group of disorders known as (MND)motor neuron diseases, which are caused by gradual deterioration (degeneration) and death of motor neurons. Motor neurons are nerve cells that extend from the brain to the spinal cord and to muscles throughout the body. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles.
Messages from motor neurons in the brain (called upper motor neurons) are transmitted to motor neurons in the spinal cord and to motor nuclei of brain (called lower motor neurons) and from the spinal cord and motor nuclei of brain to a particular muscle or muscles.
In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.
Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe.
Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10 percent of people with ALS survive for 10 or more years."1


If you made it through that quote then the rest of what you will read will sound like what Gary Simpson of the Far Side described a dog hears when its master is talking to it:

(see cartoon image)

Only what we hear is "blah, blah, DEATH, blah, blah, blah, 3-5 years, blah, blah, blah, blah, blah, blah, NO CURE,

While technically this and other descriptions of ASL may be correct they are far from what the PALS (Person with ALS) and CALS (Caregiver of the individual with ALS) go through while enduring what so many of us call the Monster.

This "all inclusive" but "no where near thorough" guide will be developed from the point of view of those who have this horrific illness and those who suffer, perhaps even more so, their caregivers. The contributors are my friends from the ALS Forum2 and while each of us works through this journey differently we all also do so with our own take on how to cope. With their help I hope to capture their courage and strength to help you my dear reader who is facing a terrible quest, where the only riches to be found at the end are those of being released from pain and suffering.
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