Old 10-27-2015, 03:19 PM #1 (permalink)
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Default Writing about ALS

Hello all,

I do not have a diagnosis of ALS, but I intend to write a novel where the main character has ALS; I hasten to add that I want to approach this with the utmost respect, and not reduce this character to just his diagnosis. I believe that having a diagnosis of ALS is just one aspect of a person, and I feel that a lot of people forget this when they're depicting ALS. I wanted to know if there would be anyone who opposes a person who doesn't have ALS writing a character who does have ALS; if so, I would quietly back off (this has been one of my main concerns), I want to stress that I will approach this delicately and with respect, and I have been doing my best to educate myself on ALS and everything surrounding it. Your responses are much appreciated!
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Old 10-27-2015, 04:17 PM #2 (permalink)
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Default Re: Writing about ALS

I'd say go for it. PALS pretty well run the gamut as far as personality types, etc... so you ought to have plenty of room to flesh out the character.
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Old 10-27-2015, 04:29 PM #3 (permalink)
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Default Re: Writing about ALS

Brad is right. Anybody can get ALS, but it seems to affect athletic people more often, especially military people. Most learn to live day-by-day accepting new symptoms and limitations with stoicism the best they can. A few get angry, selfish, and even verbally abusive of their spouses. Some consider suicide as soon as they're diagnosed, but most learn to live with dignity and maximize whatever joy they can get out of each day. They arrange their affairs and their care so that when they lose all mobility and the ability to breathe well, their nurses or spouses can optimize patient comfort and help them pass quietly without pain or fear. in their home. Morphine helps with that. --Mike

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Old 10-27-2015, 04:40 PM #4 (permalink)
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Default Re: Writing about ALS

Have you personally known anyone with ALS and been closely involved with them?

I would imagine it would be incredibly difficult to write a novel that truly shows what a person with ALS might be going through. Especially when there are so many differences in how it plays out in each person.

What onset will your character have? What speed of progression? Any FTD involved?

You may have to spend a very long time researching carefully to be able to depict an accurate case of someone with ALS and know that you are presenting really factual information inside a fictional novel.
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Old 10-27-2015, 06:28 PM #5 (permalink)
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Default Re: Writing about ALS

notBrad: Thanks; I was wondering if there would be a strong objection to me writing about this, but it's nice to know that at least someone thinks I should go for it.

Atsugi: Thanks very much for the information! I did not know that ALS causes physical pain to the point of requiring morphine.

affected: I have not; unfortunately, in my community, there seems to be this lack of knowledge about ALS beyond the point of the ice bucket challenge, and it's personally very hard for me to get around my city (I live in Jacksonville and don't own a car... public transport is nonexistent), so I don't have the ability to reach out to people with ALS in my city. I am very committed to doing a lot of research in order to depict this accurately, though. That's basically why I joined these forums, and I've also been doing a lot of borrowing of books from libraries and trawling through the internet. I admit that this may still not be enough, but I expect to be working on this novel, from first draft to publication, for a long time, so hopefully by then, I'll be in another city where I can talk to someone who has ALS in person.

He has limb onset ALS, starting from his legs and feet, and he has had symptoms for four years before his diagnosis (I've read that getting an ALS diagnosis is a very long, harrowing process, and other diseases have to be ruled out because there's no actual test for ALS). Two years after the diagnosis, he has respiratory failure and as per his instructions, he does not have a tracheostomy and care is withdrawn. There is no FTD involved.
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Old 10-27-2015, 06:47 PM #6 (permalink)
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Default Re: Writing about ALS

There are videos on You Tube of people with ALS. These would be a good start. Also, read "Tuesday's with Morrie" by Mitch Albom to get more background.
Hope you rely heavily on character development- with the disease as a secondary aspect. A person with ALS is first and foremost who they have always been. This disease just seems to bring out the beauty, courage and strength of indivuals, so rather than arousing only pity, it makes others respect the courage and dignity the PALS lives with in fighting this monster. An observation- think the average diagnosis time is 6 months to 2 years rather than the 4 you mentioned. Good luck in presenting our beloved friends and family as the Warriors that they are!
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Old 10-27-2015, 07:05 PM #7 (permalink)
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Default Re: Writing about ALS

The morphine is not necessarily for pain management.
The nerve controlling the diaphragm is subject to attack from ALS also. Not so much in the case of Stephen Hawking, but fairly common.
As this nerve fails and the diaphragm becomes less effective, ventilation is needed. A device called a BiPap, similar to the cpap used by sleep apnea sufferers, assists with breathing. Some PALS are on Bipap 24/7, and can be faced with a decision to have a tracheotomy and be vented full time as Steve Reeves was.
If the PALS elects to not have assisted breathing CO2 builds up, oxygen saturation drops and the body's chemistry changes.
Air hunger happens, the body desires more oxygen.

The morphine addresses this air hunger, suppresses it. The body eventually shuts down; the PALS dies.
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Old 10-27-2015, 07:35 PM #8 (permalink)
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Default Re: Writing about ALS

cheerleader: Thank you, I'll look into that at once! I forgot to mention that he refuses to seek medical help for the first two years of having symptoms, as they are still mild and he's in his late 20s and pretty much feels invincible and thinks that it can't possibly be a medical condition. He thinks he'll be fine and the symptoms will go away. I should also mention that he is the lead singer/guitarist of a rock band and his schedule kind of prevents him from getting a speedy diagnosis because he's away on tour for long periods of time. I will definitely keep that in mind, and the last thing I want is for the character just to be pitied by the reader and nothing more-- he hates it when people try to reduce him to an object of pity just because of his diagnosis. I will make very sure not to fall into that hole.

GregK: I see, thank you very much for that information! I will make sure to do more thorough research into each stage of ALS.
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Old 10-27-2015, 07:56 PM #9 (permalink)
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Default Re: Writing about ALS

One more comment that I hope you consider. It is EXTREMELY rare for people in their 20's to have ALS. I fear your story may arouse more panic in young people thinking they have ALS if they feel your novel is well researched and accurate. If you read the forum regularly you know how often we have to tell 20+ year olds that it is so rare, as to be record setting. I applaud your efforts to keep it real, so hope you will look at the statistics and consider altering his age. I'm really not trying to tell you how to tell your story- just want it to be authentic so it isn't science fiction! Good luck!
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Old 10-28-2015, 12:25 AM #10 (permalink)
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Default Re: Writing about ALS

AMIULYSSES: Better make your character at least 29. Even that age is exceptionally rare. We average 50-60.
The morphine is not for pain.

Some subjects are not easily discussed in public here, since they are quite emotional. I'll send you a message that explains it in detail.
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Old 10-28-2015, 03:51 AM #11 (permalink)
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Default Re: Writing about ALS

I agree, you can't write a compellingly real book about such a young person. The most common age of onset is between 50 and 60. Of course that is only the most common. But ALS in someone in their 20's who have had it already 4 years is just so atypical it makes the book seem a total work of fiction, rather than a fictional story that feels totally real. I would think you are aiming for the latter.

I would make him in his 40's at the youngest.

I agree 4 years is too long til diagnosis. It would make him extremely slow progression and therefore not a very typical PALS. I will tell you this though - my Chris had muscle wastage noticed in his shoulders by a physiotherapist (for a non-ALS related issue) 3 years before his diagnosis. But he was completely strong (he was always digging gardens without cease!) and he did not develop noticeable speech/swallowing issues for another 2.5 years. So it was working in his body for who knows how long. If he had not seen this physio there would have been no indication of anything for years. At the time he shrugged the comment off as he didn't realise it meant anything. But that is different to saying your character had lower limb onset for 4 years before diagnosis. Within months PALS know something is really wrong and start seeing a doctor. Often with lower limb onset they have a single strange fall and see a doctor. It may take months, but not years for a definitive diagnosis. Often this is because they have to wait for test dates and referrals more than anything.

Now I admit I'm getting a little interested in what you could do with this book, so I'm not trying to dissuade you, I would like to encourage you to make the ALS parts very convincing. I agree the story is about him the person, but if you make the ALS side of his story unconvincing then you do the disease a disservice and make your story unconvincing.

The research will be tricky as there is so much conflicting stuff written online. I hope you have a good system for recording your research so you can compare and analyse what is what.
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Old 10-28-2015, 09:48 AM #12 (permalink)
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Default Re: Writing about ALS

don't know what your interest or motivation to write such a fiction is or what your writing skills are but perhaps your energies could be more effective to not only the general population but also us with the nightmare if you focused on why there is no cure! (sorry for the run on sentence). chally
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Old 10-28-2015, 04:20 PM #13 (permalink)
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Default Re: Writing about ALS

cheerleader: I certainly understand where you're coming from; do you think it would be better if I made him in his early-to-mid 30s, then?

Atsugi: I've got your message, thank you very much for the helpful information, I'll reply in just a second.

affected: Indeed, I get what you're saying. I'm a bit hesitant to make him in his 40s though, because I feel like I won't be able to connect with a character who's a bit older because, well, let's just say that I'm a college-aged person and I feel like I don't understand that mindset as much. Of course, I want to keep it factual and real, and I'll change his age if I have to, so perhaps would him being in his 30s work a little better? I also admit that the diagnosis time might be too long; so perhaps two years of having symptoms before a diagnosis? Would it also be more realistic if the ALS started in his hands, or basically the left side of his body? What really makes him go and seek help is the fact that he can't play guitar with the same speed and intensity as he used to, because of weakness in his left hand.

chally: I hope my writing skills are passable - at least, on a good day. I definitely want to include the fact that there's no cure as part of his story, and make it a big part, too.
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Old 10-28-2015, 05:02 PM #14 (permalink)
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Default Re: Writing about ALS

Two years to diagnosis would probably be more real. Onset sites are generally equally divided between lower extremity upper extremity and bulbar but bulbar is more common in older patients. Typical spread with limb onset. If it starts in one leg next it will probably go to the other leg or the same arm. If it starts in an arm the other arm or same leg.

He is going to be struggling mightily with a tour schedule fairly soon into this probably. Maybe that is part of your plot. Age is an issue. There are not a lot of young cases and a disproportionate number of those would be genetic ( familial ALS)which he would know and seek care early unless you make him adopted with unknown history ( not to write your book for you)
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Old 10-28-2015, 05:07 PM #15 (permalink)
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Default Re: Writing about ALS

Very rare for someone to have ALS in their low 30's.

2 years of symptoms also terribly rare - upper limb onset would see him suddenly unable to open a jar, do up his clothing, turn a key in a lock or ignition, write, pick up a cup or a pillow. It most often starts in the dominant hand. How is he going to get away without being able to do these things for himself for 2 years? Honestly, yes some people go into denial and try to ignore their early symptoms for some time. You risk starting a whole new wave of health anxiety young people convinced they have ALS because they go for years with tiny little symptoms they can cope with before seeking medical advice. Please don't tell me your character is going to experience 2 years of twitching and then get diagnosed with ALS.

We are talking about a rare disease and you want to make your character the rarest of the rare? Maybe you should write about a young persons disease instead.

If you want to write a book that will appeal to kids just entering adulthood I really think you may want to rethink ALS. It is not a young persons disease, but so many young people develop health anxiety and are convinced they have it.

Maybe you could make contact with the Often Awesome Army - friends of a rare young man who had ALS, diagnosed at 29 and see if you can write something based on a real life experience. His neurologist says he is one of the the youngest people he has ever seen with ALS and he is a world renowned, very experienced ALS specialist.

May I ask - what made you decide you want to write about ALS in the first place, I'd be really interested to know that.
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