The emotional aspects with ALS

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Katie C

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Primeconcern... you say you want to learn about the emotional impact of this disease, then turn around and lecture us about not giving you enough of our time to understand your somewhat lengthy posts. For some, the disease robs them of the ability to communicate easily or to spend long amounts of time concentrating on one thing. For caregivers, we are robbed of companionship at the same time that we are given added responsibilities... physical care of our PALS, total financial responsiblity for our families, to say nothing of the normal every days of cooking, housekeeping, etc. And if, as in our case, there is dementia involved, all of the above is intensified. So yes.. we distrust those who show up unknown wanting a piece of that time. While we offer each other support, your desire is to take away information. You don't want to read the whole site because it would take you too long. We come to this site with little bites of time... I'd rather spend it helping a PALS or CALS with specific suggestions or a simple "I know... hang in there" And perhaps if you really read the responses you got, you would actually get more insight into your query than you realized. Because anger, fear, frustration and yes... IMPATIENCE... are all part of the remarkable toll ALS takes on its victims and their families.
 

Katie C

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Just wanted to add... Vicki's suggestion to attend a support group is brilliant. Perhaps it will give you more insight into what ALS families go through on a daily basis.
 

ottawa girl

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I did not direct anger toward you. Suspicious? Yes. Others have explained the reasons.

The essential message I wished you to focus upon as a physician (aside from listening, which skill needs honing because you heard anger where none exists), is the absolute need to offer hope to every patient you will encounter in your lifetime as a healer. Many doctors forget that. They treat limbs and organs.

I would urge you to check out an interview with Dr. Richard Bedlack, neurologist at Duke. I think it's on YouTube. In it, he explains why he sports a tattoo on his left hand. It serves as his reminder, to give hope to every patient he meets. He treats ALS patients. He is very inspirational and a good example to young and old doctors alike.
 

vickim

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Prime concern

I found this on my daughter in law's Facebook and thought it beautiful and it goes for crabby old women too and future doctors attached below.
 

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DawneO

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primeconcern,
My best friend was diagnosed a month ago. I guess I knew what the diagnosed would be at Christmas, but could not face. We heard the words at the neuro docs office...I am a nurse so I knew what it meant. The hardest thing about being a nurse when a loved one is sick is that we go to the end- the worst case scenario, and then work out way backwards to where we are today. It takes effort every day NOT to see my friend dying in the back room and to instead see her living in the now. I find myself looking for answers on time, because I want to help plan for her bucket list, and at the same time, not wanting answers on time because then I am back to the end again.
What were the emotions like...for the first 3 weeks all 3 of us (friend,her husband and I ) cried a LOT. There are so many people to tell- the hardest was her son. People called and want to do something, and the diagnosed is always in your face. Somewhere in that 3 weeks, the 3 of us made a partnership- we could cry and laugh and take turns telling people, and we know that between us and some close friends we can manage the living and the dying . We negotiate the dr visits, (we always go as a pack now) we ask a lot more questions, we sought a lot more education. As I get educated I cry less and focus more on the now. We are working to celebrate every day.
THe nights are worst. My friend can sleep, her husband and I do not. It seems that the fear mushrooms in the night and we lose our resolve to celebrate the living.
So the emotions in a nutshell: sad- so sad you can barely stand it. Fear- that she will struggle and we will not know how to help because it is an unfamiliar disease to us. Mad- she spent her life taking care of people (also a nurse) how can this happen? Frustrated- seems like the healthcare system runs slow- weeks to get a cpap, knowing that a cpap is not the right assist but pulm is stubborn, weeks for als clinic appt, neuro mails us the mri without an explanation if radiology sees PLS or ALS...
Dawne
 

bob_s

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primeconcern,

I intended to post sooner but fell and hit my head on Sunday, spent a day in the hospital, and then visits from PTs etc. Also I type with one finger, so it's hard and slow.

I wanted to say that I am a retired med school professor, so I am disposed in a positive way toward your project because I think the best doctors retain the compassion for patients that led them into medicine. Yet it is difficult to put emotions in words in part because, for me as a PALS, they range over every emotions you can think of.

My current mood is mild depression and frustration at the loss of more independence and with increasing weakness. And fear at what is coming too fast. There is no promise that I can get back to my pre-fall functional level. And my ALS is progressing fairly quickly.

I read the previous posts, and I think that, if you read closely, you will discover answers to your question. I will paraphrase one sentiment that you may get a better sense of the emotional toll of ALS by reading the overt and especially the under current of emotions in the context of posts. I realize that is a big load for a 2nd year semester project, which is why I pointed you toward Newly Diagnosed posts.

Sorry -- arm tired now. Will try to respond to questions if you have them but may be slow getting back. You can also send me PM.

Bob
 

Ms. Pie

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So what is your real name so we can check your credentials. I think Otawagirl expressed how we handle this very well.
 

ltbeauti

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I can say that I have the physical emotional symptoms and have been diagnosed with pseudobulbar affect (pba). a condition that affects people with neurological damage. I used to laugh and cry to excess. After an episode of crying and not being able to stop it felt like I had been run over by a truck. i would just start bawling at work, in the mall. I was in a trial for Nuedexta and have been taking it ever since. It has really helped me. my neurologist said that bulbar onset people may have a higher instance of this because of the proximity to the emotional area in the brain.

just imagine that you lose an ability, say walking unassisted, then you finally get used to using a cane or walker. Then BOOM another loss, you cannot walk anymore. to the wheelchair you go. then when you get used to that BOOM , another loss. you cannot move your arms or legs or whatever.
This happens over and over and over again. so the constant loss of an ability is very emotionally draining on anyone whether they have pba or not.
 

CarlaS

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Hello Prime Concern,
Thank you so very much for your interest in ALS, and for choosing the emotional impact of ALS as your part in the class project. From what I've read on the ALS Forum, and learned from other patients with ALS (pALS), our journey is about same when it comes to the emotional aspects. While the physical journey differs widely and is never the same from patient to patient, the emotional toll it takes on each of us and for our caregivers is greater than what any of us can effectively put Into words. What is lacking in most descriptions you will read is the word "hope". Yet each of us must find some hope within ourselves in order to face each new day which we know will be more difficult than the last.

I have a suggestion that you may find helpful. There is a new ALS Assisted Living Facility near the Boston area (not far from your University!). It is called the Leonard Florence Center for Living in Chelsea, and I'm sure they would welcome a visit from you. Please check out the links below:

AOL On - House Helps ALS Patients Keep Independence


Blessings,
Carla S
 

primeconcern

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Vickim,
Thank you for sharing that poem from your daughter-in-laws FB page. I think both the poem & your directions for it, are so befitting for this thread! (as one can just tell from some of the replies) LOL But I appreciate it (it’s so true! And AGAIN the very reason I volunteered for this aspect of the project) Also, I’d like to share this with my gerontology class too (if you don’t mind) I think this goes even better with that course.
Thanks again and have a great day!
 

vickim

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Well good luck and remember those of us here. We are not just a study for a paper. I wish you peace.
 

primeconcern

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Oh Bob S,

Firstly, I am sorry to hear that you had that accident! Thank goodness you are recovering now.
Also I am really humbled by the fact that you intended on replying to my post and even AFTER the accident, you made the time to do so. I really appreciate that, Bob (thank you). I know how busy all our lives are and how things can get pushed back, sidelined or just forgotten. Thank you again and I hope my response finds you well.

Bob, I think it’s just awesome that you were a med school Professor! (You must have a wealth of knowledge, Sir) I am pleased to meet you and look forward to anything at all you might share w/ me.
I am very happy to hear that you also believe that the BEST doctors retain their compassion, which no doubt led them to studying medicine in the 1st place. That is something I obviously believe myself, it’s why I chose this field of study and really hope to never lose my humanity once in the practice. I recall that when my mom was sick, she had this one nurse who visited with her & the family and she was so kind. While there wasn’t much she could do (as the virus had already progressed beyond the point, it was her genuine kindness that helped us all through that horrible time) … Some caregivers weren’t as kind (actually cold and robotic), so I will always remember that one good one we had. She has since moved to FL, but from time to time she sends the family an Email just to say Hi.
… Bob, your advice for me to try to read the “the undercurrent of emotions” is definitely an area I need to work on. It was tough for me to read some of the responses; I felt them really unwarranted. So I will def. heed your advice to look deeper then what’s being said. Thank you.

Lastly, Bob I am extremely glad to have connected with you! (A former Professor, a person living with ALS & willingly to share) And since you offered for me to be able to PM you, I think I def. will, Sir!
Thank you again for your time here and I look forward to speaking with you in PM.
 

primeconcern

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Itbeauti,
Thank you so much for sharing that w/ me (that was a perfect response) you are an incredibly brave person! It is rare to find such open, coherent honesty and that’s exactly what I was looking for when I began this thread. Your description was very direct and sincere; it really was so helpful in conveying what it is like and what you go through on a routine basis. I would really like the opportunity to speak with you in private messages if you don’t mind? And also if you are too busy with other things, I definitely will not be offended or hurt (I completely understand), what you’ve shared with me here was already so revealing, I couldn’t thank you enough. I will send you a PM and only hope that you respond as kind as you did here. Thank you.
Also, please continue your fight with as much grace and strength as you always have.
Many blessings to you and yours!
 

skipper66

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You ask what the emotional aspect of ALS is? It is pure fear! I didn't know anything really about ALS until my dad was diagnosed with it. I searched the internet for everything I could read on it. Everywhere I went it listed it as a Terminal Disease. With cancer there is usually a chance of surviving. You want to stay strong for your friend, family member, or spouse who has been diagnosed but you are so frightened yourself. You search and search for ways to help them in anyway possible. You beg God for a cure.
The people who have ALS survive by taking it one day at a time. Many of them reach out to others facing the same thing and give them support. They survive by counting their blessing such as having a loving family etc. They pray for a cure not for just themselves but also for others. They appreciate every moment of the day.
That is pretty much the emotional aspect of ALS. It just plain sucks!
 

primeconcern

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CarlaS,

Another amazing response (between Bob, Itbeauti and you – I have made some really great contacts)

And your welcome & thank you for your encouraging words.
This center really seems so revolutionary in their approach to care giving and definitely a place I’d like to work. Getting rid of the nursing station, long corridors, etc and the layout truly does look like a private residence. Dr. William-Thomas and his team of architects really seem to have put together an amazingly progressive environment here (with many comforts of Home) also their concept of a “Shabbaz” is just terrific, one I’d like to see more facilities employ. I hope this center is extremely successful, so that other hospitals and centers begin to copy their model.

Carla, I can’t thank you enough for putting me onto the existence of this place! (I hope others get to see it) And it’s in Boston too! I am def. going to have to contact them in the future and see if I can volunteer or do a residency. I take the train all around Boston (often) just me, my books & my iPad. So I will find this place for sure!

Also, Carla thank you for your sharing of the emotional part of your journey. That was something I was wondering also (IF the emotions were generally the same, despite the physical changes being different for each individual.) And as emotions are emotions, I can understand them being difficult to put into words at times (after all, how does one describe LOVE? Or frustration?) So again, thank you for sharing yours. Lastly, I will take care to notice the use (or lack of) the word “hope.”

I wish for you, great strength, hope and GOD’s grace, everyday.
 
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