My Terms

[Time Theory]

On September 4, 2015, the Doctor told me I had ALS. Can someone please tell me the best way for self deliverance. I do not want to suffer or be a burden to my family. I don't want to wait around so that the health care facilities can do a Cashectomey on me. Any advice would be greatly appreciated. Thank you.

 

[Atsugi]

Time Theory, I am sympathetic, but a few things come to my mind:
First, have you had a second opinion from a good MND specialist?
Second, do you have family?
Third, what is your condition?

 

[FamilialALS?]

Time I'm sorry to welcome you to our group here. I can absolutely understand the point you are at right now, this is a devastating diagnosis. Being active on this forum will help you come to terms with it and make decisions that are right for yourself. Vent, ask, and search and at least you will be empowered to envision how you are going manage your ALS journey. My aunt passed away from ALS in 2013, my mom's als symptoms started about six months after that. Mom's symptoms, progression, quality of life, and care choices have all been different from her sister's- for all the things ALS does take away, it does not take away your choices in how to live with it or not to extend living with it. First of all give yourself time to come to terms with your diagnosis.

 

[Broken down Cowboy]

On September 4, 2015, the Doctor told me I had ALS. Can someone please tell me the best way for self deliverance. I do not want to suffer or be a burden to my family. I don't want to wait around so that the health care facilities can do a Cashectomey on me. Any advice would be greatly appreciated. Thank you.

Funny thing about life is that it's full of choices. Unlimited for many, restricted for some. Those convicts serving life without parole are a good example of folks with fewer choices. Men like us are in that same boat....ALS sufferers.

But friend there still are choices, both bad and good. You and you alone can have to make those decisions. I know exactly how you feel, I was diagnosed with ALS Dec 2014.

I made mine based on every factor I could consider, my wife and kids being the prime motivators. My soul came in a close second place. The only advice I'd give is think about allowing those who love you have some input in the process.

My choice was to live each day left to me to it's fullest. Express all the love I have to give, and learn how to accept that love in return. I decided to make the best of this mess as I could, take the advise of my heath professionals and roll with the punches as they come. I made an agreement with my best friend (wife) to stay with her as long as we could communicate, she's promised after that to allow proper sedatives that will remove all stress and let me go. I believe in her, and know she will. I also know I'll get to thank her one fine day in heaven.

Yep, I got ALS, but I also have peace. I'm working on my second book, watching football and lovin' these Montana Fall mornings.

I sure hope this helps.

May God Bless Us All...............Glenn

 

[fionae]

Dear Time Theory,

I empathize with you. I was diagnosed on August 20, 2015. I have had the same deep concerns. I wasn't brave enough to bring it up here. I am so sorry for what you are going through. I don't have any answers. I wish I could somehow help you. Again, I am so sorry you are experiencing all that you are.

Sincerely,
Laura

 

[chally]

hey time, welcome to the nightmare and don't sweat the small stuff { and it's all small stuff }. i understand also, as we all do, so know that you are not alone. besides everyone is terminal we'er not unique in this. it's a journey good or bad, one day at a time. keep posting here and more will be reveled through our collective experiences. some one else always has it worst and we can offer support. love ya chally

 

[Time Theory]

Thank you all for responding. It is nice to meet a group of people that can relate to this madness of an illness. Of all the things that could take me out, ALS was never on the list. Two years ago I was in my kayak and a 13 year old girl riding a jet ski ran over the back of my yak. If she had ran into it two feet forward and at the rate of speed she was going it would have been an instant death for me. Strange how things work out.

A little about myself. I am 57, married, with one child who has some special needs. Currently I work two jobs. One of those jobs is working with patients at a hospital. I had my life all planned out. Retire in three years, sell my house and become a "liveaboard" on a sailboat. I recently earned my advanced scuba diving certification. All I thought about was working hard so that I could retire and enjoy life. I think you would appreciate this Cowboy (Glenn), my daughter takes horse back riding lessons. I had plans to take them with her as well. Atsuqi, if I am correct you are a pilot, (Is that a Dave Clark headset you have on?) I also had plans to learn how to fly sailplanes. ALS has changed all of this for me and my family. Please forgive me for complaining. I don't mean to come across as to "it's all about me." Typically I am not this way at all.

Fionae, (Laura) maybe with the help of others on this site we can figure all of this out. Chally, it looks like you like the Class IV white water rapids. You are correct "everyone is terminal" but dang, of all of the things out there to get----ALS?

Cowboy (Glenn) you sound like you have a great best friend(wife). I am also very fortunate to have a supportive best friend (wife). She understands that what is important to me is quality of life. You and I are very lucky to have such wonderful best friends. By the way please send some of that Montana weather this way. I sure wish I lived there.

Familial, as a health care worker seeing all of those patients suffer with no control over their lives is very difficult. I knew early on in my career that if I were in similar circumstances that I would chose not to suffer. Each person must make their own decision. I think for the most part I have made my decision.

Thank you all for reading my ramblings and please stay in touch.

Charlie

 

[Atsugi]

Thanks for the background, Charlie. Ramble all you want.

If you don't mind, I'll disagree with something you said: It IS all about you (and your family). We're quite personal on this site, and I think that helps everybody.

Your original post was about offing yourself: There are options, and all things considered, I think it would be counter-productive to be in a hurry. Your family needs you for at least two kinds of reasons, emotional and financial. We all understand the emotional reasons you want to be with your family as long as you can while you prepare for the end. And from a purely cost-benefit perspective, you wouldn't want to do anything too soon, so you can make the myriad preparations to ensure your family's income is maximized and costs are minimized in the coming months and years.

The cashectomy you referred to probably won't come quickly. Fortunately, Social Security and Medicare will expedite your benefits.

With terminal diseases, there is a big difference between "self deliverance" and "managing your exit strategy." I would recommend the later and discourage the former. We discuss it on this board rather often. While there is a lot to know, I think it's worth it. My wife did an outstanding job taking charge of her exit, and we're very glad she did.

Are you a veteran?

--Mike

 

[gooseberry]

Charlie my husband was diagnosed May 2014. He is 59 now. Our son has adhd and aspergers. Having als was never in my husband's plan or mine either. But life happens. We have made the most of it. We have travelled and seen family and friends. We really haven't changed what we do but only the ways in which we do them. You figure out different ways but don't stop doing the things you love.

 

[Time Theory]

Mike and Gooseberry,

Thank you both for the encouragement.

Mike--I am very sorry for the loss of your wife. You sound like a stand up guy who greatly loved his wife. Also, thank you for your military service to the USA. I myself regret not serving.

Gooseberry---It is inspiring that you have made the best of these situations with your child and husband. You are your child's best advocate.

For me I go to the ALS Doctor in October. I hope to find out an estimation of how long I have until I can no longer walk, talk or whatever else this illness has in store for me. Once I have this information I can determine my exit date. The State of South Carolina does not allow a citizen to die with dignity. Instead they want you to suffer. This will allow the medical facilities to profit off of the patient's pain and suffering all the while the patient's pays. This helps by providing jobs, bonuses, and enables the CEO's of these organizations to take lavish vacations.

I hope I do not offend anyone by making these statements. It is just the way I see it. All I want to do is to plan my exit on my terms and go out with dignity. I just need to know the most effective way to do this.

 

[Atsugi]

" in October. I hope to find out an estimation"
Let us know what the doctor says.

"I hope I do not offend"
Not a bit.

"All I want to do is...exit...with dignity."
I definitely understand and agree. I would choose the same.

"I just need to know the most effective way to do this."
Most suicide methods are chancey and don't always work, but they always leave the family devastated. Here on this forum, one of the things we do is help people exit well. First, you get the second opinion and a letter of diagnosis. This is useful for establishing a solid diagnosis for Social Security. You family will need that. Be sure to involve your wife, in managing your exit, because you'll need her assistance later on.

 

[Green Queen]

Hi Charlie.
Sorry I'm late to the party...I'm having an 'it's all about me' week!
October isn't that far away, please do let us know what the outcome of that appointment is when you are able.

There are so many knowledgeable, compassionate people on this forum, I'm very glad you found us.

All the best for the appointment.
God bless, Janelle x

 

[cheerleader]

Charlie, so feel for you and understand wanting to be in control ( in a disease that is so unpredictable.). PLEASE though, talk this over with your wife, as she and your child will be left with the repercussions. Also know that everyone with ALS doesn't become incapacitated. My husband could still walk (shakily), talk, use his hands and arms ( not fully) but at 118 pounds died when he aspirated a pill, got pneumonia and had no strength to come back. It was a quick, peaceful death.
Like you, hubby worried about the end and We had talked with the doctor about how to make death more peaceful, imminent- and the experts here can tell you that morphine can speed the process along at the end. It wasn't necessary for him but he was reassured knowing help would be there if needed. And that is not illegal. In the meantime, hope you can find enjoyment in each day. You still have life to live. Hugs. Donna

 

[notBrad]

My choice was to live each day left to me to it's fullest. Express all the love I have to give, and learn how to accept that love in return. I decided to make the best of this mess as I could, take the advise of my heath professionals and roll with the punches as they come. I made an agreement with my best friend (wife) to stay with her as long as we could communicate, she's promised after that to allow proper sedatives that will remove all stress and let me go. I believe in her, and know she will. I also know I'll get to thank her one fine day in heaven.

Yep, I got ALS, but I also have peace. I'm working on my second book, watching football and lovin' these Montana Fall mornings.

I sure hope this helps.

May God Bless Us All...............Glenn

With terminal diseases, there is a big difference between "self deliverance" and "managing your exit strategy." I would recommend the later and discourage the former. We discuss it on this board rather often. While there is a lot to know, I think it's worth it. My wife did an outstanding job taking charge of her exit, and we're very glad she did.

Are you a veteran?

--Mike

These both hit the nail on the head IMO.

Here's the thing about the exit strategy, the longer you hang around and let the disease take its course the more the following things happen;

1. You get more time to be with those you love
2. You get more time to enjoy those simple things in life you often overlook
3. You give your loved ones more time to come to grips with what is happening and adjust to it.
4. You give your loved ones more time to love you and be loved by you.
5. "Exiting" becomes easier, less expensive, more painless and easier for you and for those left behind to deal with and accept.

Inducing death (again IMO) in an otherwise healthy body is more difficult and traumatic for all involved the "helping it along" in a body that is weakened and has a very low fvc.

I've got an arrangement with my wife similar to Cowboys, as long as I can communicate, laugh and love/be loved let me continue once I can no longer communicate let me go. It'll be easier for her and I.

In either case sorry to have to welcome you here and I sincerely wish peace, happiness and comfort to you and yours.

Take care,
Brad

 

[Time Theory]

Mike-Thank your mentioning having the ALS diagnosis in writing. I should have done that on the last visit. I was just so stunned when the Doctor told me the news all I wanted to do was get out of there. You are correct, self deliverance methods are very chancy. That is why I want to get people's thoughts on what methods are the most successful and least painful.

Janelle, Thank you for the welcome and introduction. I hope you are doing well today.

Donna, I appreciate you sharing your story about your husband. Hearing different cases such as yours and what you and husband went through can help me and care givers of what to expect from this sickness. Please note, for a Doctor in South Carolina to prescribe morphine, they would have to go through so much red tape it is next to impossible. The only way they will give it to a Patient is if the patient is in the hospital.

Brad, Nice to meet you. You are very blessed to live in Oregon. I think your fellow Citizen, Brittany Maynard defined for America what Dignity means. That young lady was years before her time. She was smart. She had style, class and courage.

I appreciate your comments and wanted to share my thoughts:

1. You get more time to be with those you love-- AS long as it is Quality Time.
2. You get more time to enjoy those simple things in life you often overlook. If I am Suffering simple things wont matter. Sorry I am not a good Patient.
3. You give your loved ones more time to come to grips with what is happening and adjust to it. -- Very True--Good Point!
4. You give your loved ones more time to love you and be loved by you.--- As long as I am not suffering.
5. "Exiting" becomes easier, less expensive, more painless and easier for you and for those left behind to deal with and accept ---I agree in part.

A few moments ago the Physical Therapy (PT) place called to remind me of an Appointment that my Family Doctor had arranged. This was preALS diagnosis. I told the lady that PT would not help me. I did not tell her about my diagnosis. She kinda got an attitude with me and said that I really should come in for the appointment. I told her again that it would not help. She was very firm and said that she will tell the Doctor that I refused to come in. This is a perfect example of money hungry big business heath care. It is all about the money. Nothing but Pure Greed. I refuse to give them my hard earned dollars!

Have a good evening everyone.