The emotional aspects with ALS

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primeconcern

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Hello all members,

I am a medical student seeking information from individuals with ALS (family members or professionals, please feel free to comment as well)

What I am looking to understand is what are some of the common emotional responses you feel? and in addition how are these emotions managed?

Thank you and I look forward to hearing your stories / input.
 

vickim

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I would suggest that you read through past posts and threads to get a true feel of what we all go through . There are plenty of stories there without rehashing the pain and suffering. I am sure there are some who will post on your thread so stay tuned.
 

ottawa girl

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I agree Vicki. Well said.

If " prime-concern " is a med student, more details should be provided, including his/her name, university, course outline, project end date etc. Such information can be verified by those members wishing to participate. They would do so with some level of comfort knowing they are indeed contributing to the education of a future doctor, which hopefully would benefit his/her future patients facing MND and similar terminal diseases.
 

bob_s

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You might start by looking in the "Newly Diagnosed" section.
 

KissJ

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Yes, how do we know you are a doctor?
 

primeconcern

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Good afternoon Vickim and other members,
While I appreciate your suggestion of reading through the entire site (which I have and still am as its quite a large site, with many, many postings/threads) What I was trying to do was begin a new thread, with a very specific topic (the emotional aspects of those dealing with ALS) This way I could easily find the information, from actual real people (rather than just googling such things) and of course no one is forced to share if they do not want too. In addition to that, I wouldn’t expect anyone to give their names, location, etc. (strictly whatever each individual choses to share)

Therefore, I did an online search and came across this site and created an account (like everyone else), with the intent to hear from real people (those diagnosed, other professionals or family members) … It’s really as simple as that. There is no sneaky, malicious plot here (I can’t imagine what one would get out of that anyway) And finally, I am NOT a doctor (“kissJ”) … not by a long shot (I wish I were already) I am a med. Student (if it matters) I am in my 2nd yr at BU (Boston Uni) I have a long ways to go still. I am currently studying Biochem, but the information I see here is for my Pathophys. Class. We were assigned a group project (ours is on ALS) I chose the emotional aspects (and hoped this forum would be a good source to get real, first-hand info from), I understand a bit from the bio or etiology side of the disease, but I want to understand the more human aspect of it, if you will.

PS: I don’t know why some of you seem so offended, by anyone seeking to better understand what it is you go through in living with this disease. I have read and re-read my post and can’t see where I went wrong. So with that, I thank you just the same and sincerely wish you all the best.

PSS: And to “bob s” I thank you for your suggestion and I will def. look into that thread, perhaps this topic was mentioned already there and folks responded in kind. I will look there for information.

Thanks again.
 

primeconcern

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Bob s,
In case you don’t see my response to everyone who’s replied thus far, I want to personally thank you for your suggestion. I will absolutely check there for this information (perhaps this threads already been asked & answered) So, thanks again and best of wishes to you and yours!
 

vickim

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Primeconcern

If you have read through some of the posts You will find that there are some who post here selling cures and such. It makes us leery. And alot of us went through years of the diagnostic process and telling our stories could be quite long and with advanced illness it is difficult to communicate.

I on personal level think you should read through past post because it will tell a truer story than getting a short recap. BY reading the past you will read the story as it unfolded thereby getting a real since of feeling. Yea it will take a while but if you are sincere you will find what you want. Personally I think you want the easy way just a short recap so you can write your paper, and you may think that unfair but there have been others like you here before. If you want the real story , the real emotions, fear, pain and death then you have to work for it.

M aybe a good first hand experience would be to sit in or volunteer at a local ALS clinic support group, you would see pain, suffering, and struggle along with strength, bravery and hope. Seeing someone face to face is far more real than reading words on a forum. Good luck.
 
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cypress

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Prime, x2 on what victim says about sitting in at a support group. Contact coordinator first and you should be welcome. It will change your life. Best wishes in your studies!
 

ottawa girl

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I am sorry you do not readily understand why some would be offended by your question. Maybe that's a third year course.

We've been diagnosed with a catastrophic illness. I've read it's the worst disease on the face of the planet. I suspect it's because we die in small increments. It's a huge surreal circus. Our emotions are akin to the scariest roller coaster you might imagine; the ride is unrelenting. It slows, speeds up, swerves, but never stops. There's no getting off. Our view of the horizon is blighted and skewed by the speed, and each of our senses is wholly drowned out by the sound of the squealing wheels upon the rails. We are strapped in, immobile, drooling, hungry, speechless. There is no mechanic to oil the wheels, no circus magician to wave a wand, no lion tamer to quell the beast. We are vulnerable and wholly dependent on other people to manage all of our most basic and intimate needs while on this ride. We feel sad, petrified, embarrassed, anxious and sometimes cranky.

The lucky among us accept this dizzying ride, adapt, love and even laugh. Our own big tent is filled to capacity with our cherished seat mates, family, friends and carers. The blessed ones have empathetic doctors who are compassionate when doling out the lifetime admission ticket to this circus. Each time they hop on with us, for a bit, these doctors do not candy floss the reality, but they do give us hope. Hope that the next curve or sudden drop will not cause our car to fall off the rails. Hope that one among them will one day soon get the roller coaster to stop. Never to take on new passengers or to start again.
 

vickim

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Elaine,

You have such beautiful words.
 

pearshoot

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well written ottawa girl, keep up the good work
 

primeconcern

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Vickim,
Good morning to you and thank you for responding in kind to my thread here, I trust now you all see my actions are sincere. But just to clarify quickly, I am not looking for an easy way in the sense that one would just recap their entire lives up until the present time. That seems a bit cheap or rather inconsiderate. If that were the case, I could simple google stories, but instead I chose to look for a forum compiled of more tangible people. Having said that, I am specifically looking for 2 things (to understand the emotional rollercoaster, as many have called it and also how these are being managed) You see as the project is divided up, my colleagues will be explaining the disease itself (from the biological standpoints), also the new medications, and it is my job to convey the more human aspects of it all. To perhaps give a bit about the emotions that people feel and how you all try to live with it. As you probably know, many times doctors can forget about the person behind the disease. We go through our trainings, year after year and we begin to see things just from a scientific standpoint (diagnosis, treatments, disease, experiment to find cure, etc) … all the while growing less humane in our search for a successful cure. This is what I don’t want to happen to me or those around me … I don’t want us to forget that patients are people first. I want to convey the stories, the heartbeats, the life of folks … I believe that that is just as important. Lastly, last night I read through a few posts (that bob s suggested) and it was very touching. I followed the posts of one gentleman who was caring for his sister who had als. He detailed his struggles with it and I appreciated his sharing openly with everyone. I only wish I had the chance to speak with his sister and hear her side of it. And to your suggestion of sitting in at a ALS place, I think that’s a great idea! In fact one member was chosen from our group earlier this semester to interview a patient. We all submitted a question to have asked, but not all of us were allowed to attend (I think so not to overwhelm the person and make them feel like an experiment.) I appreciate what your saying Vickim and so I will continue to just read the stories I come across through other posts.
Thank you.
 

primeconcern

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IF you took any offense at all it’s because you prejudged without taking the time to understand where I was sincerely coming from (or perhaps you read the post in haste, to which I can only encourage you to re-read it again) I cannot apologize for YOUR misunderstanding, but if you continue to feel any negative way about my inquiring to understand ALS, than feel free to ignore/block me. I am not here to argue. Having said that, IF you feel you can positively contribute to this thread, than I absolutely welcome you.
In response to the rest of your post (which is much better, much less guarded and confrontational)
I agree that this disease is absolutely horrible, surely one of the worse mankind has been faced with. If I may share with you a quick, personal story into my own life … I have lost 2 very beloved people in my own life (one to Cancer and the other Aids) … this was at a very young age (I was around 15) and their loses have continued to affect me, every day. It is more than likely what has fueled me (subconsciously) to pursue a career as a doctor as an adult now. So again, I view all terminal diseases as absolute horrific tragedies to all humanity (none worse than the other. Each taking people that are loved from their families) I am also an eternal optimist and believe that, working TOGETHER, humanity can find cures.
I have to believe this.
To the rest of your reply, I can only say – thank you. Thank you for opening up, for sharing what your emotions are like in dealing with ALS. Your description was … powerful. It brings me near tears (makes me recall my family members who died from cancer and aids, particularly the aids one. She contracted from a cheating man) Every day I watched her slowly weaken, losing weight, her beautiful hair, her smile was gone without a trace … she didn’t look the same. If anyone were to see her in that stage, they couldn’t imagine how beautiful, how full of life she was. I miss my mother … every single day.
It is why I want to become a dr. so I can fight for people with terminal diseases … I am an adult now (not a helpless lil’ 15yr old boy) … I want the health care community to know that these are people we are working for! … people with real families, real stories, reasons to live. Elaine, even if you can’t understand me (for whatever reason you are directing anger toward me) and if we therefore never become friends … I’d like you to know, that I understand. And that with everything in me, I wish you the happiest life.

1 Samuel 25:6
Matthew 4:23
Amen
 

primeconcern

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Cypress,

Thank you for the encouragement! I can only promise to give the field my best.
So to you, I am wishing the strength to continue your fight, abundance of happiness & peace.
 
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