Would anyone be open to sharing their experiences and outlook with ALS?

[meowgirl]

Hi,

I'm meowgirl and I'm a new member to this forum. I am currently doing a project with a partner to learn more about the individual side of those with ALS, as well as any outlooks and perspectives people with ALS have on the disease, its treatments, and living a happy life.
We are going to present this project to a professor who is a neuroscientist, as well as other students that are going to become future health professionals.
If anyone is in the Austin area, please pm me if you would be able to share your experiences with us. You can be kept confidential if you would like to. Or, if you are in the shyer side, if you would like to share your experiences through email or telephone, that would be fine too.
Also, feel free to post your experience with ALS in this thread as well.

What we are trying to investigate is how ALS affects your everday life, and how have you coped with ALS to continue living a happy life?

In what ways have your family been supportive after being diagnosed with ALS?

What is your outlook on the treatments available for ALS?

What are your personal hobbies/ other aspects of life you enjoy?

Thank you for any response/thoughts. : ) Please do pm me if you are in the Austin area, we would love to get a personal glimpse into the personality side of those with ALS. : )

 

[sadiemae]

Are you just looking for the PALS perspective, or are you also including the CALS?

 

[meowgirl]

Sorry it took me a while to respond, I was trying to figure out what CALS meant. : ) That being said, we would love to hear both sides, especially if the caregiver is a family member. Thank you for your response.

 

[pepsiman]

What we are trying to investigate is how ALS affects your everday life, and how have you coped with ALS to continue living a happy life?

ALS completely dominates your life, if you are the person with ALS, you deal with the issues as they arise. Loss of use of hands, feet, eventually the ability to eat and speak. Finally the ability to breath on your own. If you are the caregiver you deal with taking care of the person, transferring from bed to wheelchair, wheelchair to toilet, toilet back to wheelchair. Showering, toothbrushing, eventually feeding, first with a spoon or fork, eventually through a tube in the stomach. Finally, breathing apparatus Bi-PAP and eventually if the patient chooses, to a trach and vent. The happy life part is an individual experience. Some can find happiness in anything, some can't.

In what ways have your family been supportive after being diagnosed with ALS?

Since I was a caregiver I have to give my experience. What help from family? Didn't happen, I was it.

What is your outlook on the treatments available for ALS?

What treatments, Rilutek? Maybe it extends life, maybe not. There isn't really anything else. The outlook is pretty bleak also.

What are your personal hobbies/ other aspects of life you enjoy?

As a caregiver I had no time for personal hobbies or any other aspects of life at all. I worked 40+ hours a week from home and in the times between caregiving and work I ate, fed my four kids, did laundry, washed dishes and was mother, father and chief bottlewasher. Some might find some enjoyment, my favorite part of the day was closing my eyes to go to sleep.

Thank you for any response/thoughts. : ) Please do pm me if you are in the Austin area, we would love to get a personal glimpse into the personality side of those with ALS. : )

 

[meowgirl]

What we are trying to investigate is how ALS affects your everday life, and how have you coped with ALS to continue living a happy life?

ALS completely dominates your life, if you are the person with ALS, you deal with the issues as they arise. Loss of use of hands, feet, eventually the ability to eat and speak. Finally the ability to breath on your own. If you are the caregiver you deal with taking care of the person, transferring from bed to wheelchair, wheelchair to toilet, toilet back to wheelchair. Showering, toothbrushing, eventually feeding, first with a spoon or fork, eventually through a tube in the stomach. Finally, breathing apparatus Bi-PAP and eventually if the patient chooses, to a trach and vent. The happy life part is an individual experience. Some can find happiness in anything, some can't.

In what ways have your family been supportive after being diagnosed with ALS?

Since I was a caregiver I have to give my experience. What help from family? Didn't happen, I was it.

What is your outlook on the treatments available for ALS?

What treatments, Rilutek? Maybe it extends life, maybe not. There isn't really anything else. The outlook is pretty bleak also.

What are your personal hobbies/ other aspects of life you enjoy?

As a caregiver I had no time for personal hobbies or any other aspects of life at all. I worked 40+ hours a week from home and in the times between caregiving and work I ate, fed my four kids, did laundry, washed dishes and was mother, father and chief bottlewasher. Some might find some enjoyment, my favorite part of the day was closing my eyes to go to sleep.

Thank you for any response/thoughts. : ) Please do pm me if you are in the Austin area, we would love to get a personal glimpse into the personality side of those with ALS. : )

Wow, thank you so much for your reply. It is a real eyeopener. Did dealing with medical costs prevent extra additional help with caregiving as well?

Please feel free to PM me. Thank you!

 

[Peg B]

Meowgirl,

Please go back and really read what information Pepsiman shared with you and your response. His loving wife of 22+ years died last November.

"Husband of Elizabeth Anne Feeman Millet 12/22/62 - 11/23/2009 diagnosed 10/17/2006 "

Please understand that if you want to be a "health professional" it requires a great deal of sensitivity. It requires really listening, knowing what disease your client is dealing with, and how that might effect anyone who has the disease or who has to help them.

Pepsiman was very generous to answer your questions. Go back and read some of his other posts and you will see he loved his wife very much, was married over 22 years and has 4 wonderful children who watched their mother die a horrible slow death and now she is gone.

Your response to his story was another question, which was an incredibly inappropriate and insensitive response to a man who just opened wounds to explain how it felt for him. It is none of our business if money was an issue. "Did dealing with medical costs prevent extra additional help with care giving as well?" was your response beside the WOW!...

A kinder response would have been "Thank you so much for sharing this with me. I am so sorry for your loss and I wish you well."

You sound very young and my husband thought your questions really were about you trying to learn. So go to the library or the internet and find out there is NO treatment for ALS. There is one medicine that works on some symptoms and maybe slows the process for some people but there is NO CURE. Treatment implies a cure - There is no cure. The only hope at this point in time is for a slow progression. But some people might prefer a quicker progression. Don't ask about happiness - it is an insult. People without any disease usually find "happiness" in the same way as those with a life ending disease. Love of family and friends, and peace through faith or spirituality. But ALS makes that harder because as a person who can't do anything eventually, as Dick (pepsiman) explained, finds life much more difficult. Put yourself in Elizabeth's place as she lay in bed and could not talk to her daughters or her loving husband. Put yourself in his place as he worked to financially support 6 people and still be the sole adult care person for his wife and children. Have you ever had to do everything for another person 24/7? Now imagine that person is the love of your life.

Please be sensitive to what you are asking people to share with you. Do real research, find out what this disease does, read all the posts here and then read "On Death and Dying," by Elisabeth Kubler-Ross. If you educate yourself first you will benefit from the stories people share with you in a much better way.

Best Wishes, Peg

 

[Twinsmom]

Very thoughtfully said Peg. I was also thinking I wanted to encourage Meowgirl to slow down and re-read Dick's responses and REALLY PROCESS everything he shared.

Meowgirl, you are on an important journey in wanting to understand this disease, and Peg gave you some very valuable words of wisdom. I pray you see them in the spirit they were intended.
Peace,
Melody

 

[brooksea]

We are going to present this project to a professor who is a neuroscientist, as well as other students that are going to become future health professionals.

I would like to know from which school you are researching the affects of everyday life with ALS.

AND, if you read the caregiver forums you will see what goes on with pALS and cALS. Seems to me if you really wanted to research this you could do a little investigation (research) into this site.

Phone call? :? I can only wish that would be possible...

 

[pepsiman]

I followed it all up with a (polite) PM to meowgirl with full details. I've got nothing to hide, I'll post it here if you guys want to see it. I tell anyone who will listen what we went through. Pain, guilt, financial impact, everything. If someone hasn't lived it, they will never understand.

I don't expect anything will come of meowgirl's request, not because she's not trying but because people have been living this sort of disaster since long before Lou Gehrig died from it. Individual members of the medical community can be very compassionate but the community as a whole is very insensitive to "incurable" diseases.

Dick

 

[brooksea]

Dick,

We've had people on here before asking questions like this. It just seems odd sometimes.

I don't expect anything will come of meowgirl's request, not because she's not trying but because people have been living this sort of disaster since long before Lou Gehrig died from it. Individual members of the medical community can be very compassionate but the community as a whole is very insensitive to "incurable" diseases.

As a cALS I know exactly where you are coming from!

Peace be with you. (what my husband says when he's joking around and when I understand him!)

 

[meowgirl]

Meowgirl,

Please go back and really read what information Pepsiman shared with you and your response. His loving wife of 22+ years died last November.

"Husband of Elizabeth Anne Feeman Millet 12/22/62 - 11/23/2009 diagnosed 10/17/2006 "

Please understand that if you want to be a "health professional" it requires a great deal of sensitivity. It requires really listening, knowing what disease your client is dealing with, and how that might effect anyone who has the disease or who has to help them.

Pepsiman was very generous to answer your questions. Go back and read some of his other posts and you will see he loved his wife very much, was married over 22 years and has 4 wonderful children who watched their mother die a horrible slow death and now she is gone.

Your response to his story was another question, which was an incredibly inappropriate and insensitive response to a man who just opened wounds to explain how it felt for him. It is none of our business if money was an issue. "Did dealing with medical costs prevent extra additional help with care giving as well?" was your response beside the WOW!...

A kinder response would have been "Thank you so much for sharing this with me. I am so sorry for your loss and I wish you well."

You sound very young and my husband thought your questions really were about you trying to learn. So go to the library or the internet and find out there is NO treatment for ALS. There is one medicine that works on some symptoms and maybe slows the process for some people but there is NO CURE. Treatment implies a cure - There is no cure. The only hope at this point in time is for a slow progression. But some people might prefer a quicker progression. Don't ask about happiness - it is an insult. People without any disease usually find "happiness" in the same way as those with a life ending disease. Love of family and friends, and peace through faith or spirituality. But ALS makes that harder because as a person who can't do anything eventually, as Dick (pepsiman) explained, finds life much more difficult. Put yourself in Elizabeth's place as she lay in bed and could not talk to her daughters or her loving husband. Put yourself in his place as he worked to financially support 6 people and still be the sole adult care person for his wife and children. Have you ever had to do everything for another person 24/7? Now imagine that person is the love of your life.

Please be sensitive to what you are asking people to share with you. Do real research, find out what this disease does, read all the posts here and then read "On Death and Dying," by Elisabeth Kubler-Ross. If you educate yourself first you will benefit from the stories people share with you in a much better way.

Best Wishes, Peg

Hi Peg, I am very sorry to the forum members, especially to pepsiman, for any insensitivity I have caused. I'm not used to forums much and wrote different repsonses, but didn't realize why they were not going through before realizing I needed moderator approval. I had planned to include my email as a replacement for my pm, but I think I made a typo that said "Please feel free to pm me, instead of email me." That odd thank you at the referred to a change in address. I'm sorry that it did sound very tact in the end. As for my question, I'm very sorry I came off as rude. I was trying to understand if a program that offered free assistance would be helpful. I didn't mean to imply there was a cure, and I'm very sorry for that.

 

[Peg B]

Hi

I appreciate your sincere apology and it sounds like Dick has been very helpful and kind to you. That is a win win for you both. I am glad to hear it.

After I told you about "On Death and Dying," I began reading it again. It is an excellent book and I think it may be very helpful to you and others in your classes. Take good care. Peg

 

[Cereus]

Meowgirl,

It may help for you to give more information about your project. Are you in high school, a girl scout, grad school, is this a thesis or a paper due at the end of the week? I applaud your interest but we on the forum have to be very circumspect as there are often scammers. This is a very personal journey. Just joining the forum, as as public venue is a difficult choice for many of us.

As far as "I was trying to understand if a program that offered free assistance would be helpful." There is a fraternity at our local university that has chosen the ALS Association as the beneficiary to their service projects. You may want to contact the ALS Association in Austin.

And do share what you learn. It's wonderful that you are trying to help.

 

[meowgirl]

Hi

I appreciate your sincere apology and it sounds like Dick has been very helpful and kind to you. That is a win win for you both. I am glad to hear it.

After I told you about "On Death and Dying," I began reading it again. It is an excellent book and I think it may be very helpful to you and others in your classes. Take good care. Peg

Thank you very much. I am very grateful for what Dick has done. Thank you for the recommendation. I'll be sure to recommend and read it myself.

 

[meowgirl]

Meowgirl,

It may help for you to give more information about your project. Are you in high school, a girl scout, grad school, is this a thesis or a paper due at the end of the week? I applaud your interest but we on the forum have to be very circumspect as there are often scammers. This is a very personal journey. Just joining the forum, as as public venue is a difficult choice for many of us.

As far as "I was trying to understand if a program that offered free assistance would be helpful." There is a fraternity at our local university that has chosen the ALS Association as the beneficiary to their service projects. You may want to contact the ALS Association in Austin.

And do share what you learn. It's wonderful that you are trying to help.

Hi cereus, this is a college project that will in presentation format (powerpoint). The main focus of the project, in addition to historical background and research, is the people behind ALS-- the patient and their families. The project is going to presented to classmates of many backgrounds (such as research, but most some type of health profession)
My partner has contacted the ALS association as well.

I have learned many things just from this forum alone. For example, the strong need of family and love to help a person with ALS persevere, as well as how much dedication must be put in, as I learned from pepsiman. I've also learned how to be more sensitive to the feelings of people when talking about a serious disease such as ALS. For that I am truly grateful, I didn't realize my actions, and am glad it was pointed out. I think it's important to share what I learned here to help others communicate better in their future professions with their patients.

Thank you for your input Cereus.