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n1w2h3

New member
Joined
Jul 26, 2012
Messages
2
Reason
PALS
Diagnosis
07/2012
Country
US
State
South Carolina
City
Columbia
After 5 months of seeing a number of doctors and several tests -MRI and CT-scan, I learned I have ALS. I was told that it usually leads to death in 2 to 5 years unless it stops progression, or reverses itself -which is rare. The first symptom of it was in early February when I noticed a slight change in my voice. Now nearly 6 months later, my voice is about useless, I have trouble eating and drinking, my saliva is like thick syrup, I get fatigued very easy, and as the day goes on my neck muscles get so weak that my head feels like it weighs 100 pounds and I can't hold it up and that restricts my breathing.

I realize there are ALS victims that are in far worse condition than I am, and if it progresses in me as they say it usually does, I can expect to eventually be completely paralyzed and on a respirator until I die. I am 78 and live alone and just about all of my family and friends have passed away. I really have nothing to live for other than taking care of my home and yard, and doing a little traveling -which is becoming very difficult to do. If the ALS progresses no further in me than it is today, I do not want to spend the rest of my life in this condition.

We are all going to die sooner or later, so I do not fear death. I just fear suffering until I get there. Sure, if necessary I can live in a nursing home or hospice where they will keep me full of drugs, wipe me, bath me, feed me, and keep me "comfortable" until I die. But, that is not living! All that is, is keeping the sick care industry in business. That is why I believe Physician Assisted Suicide is a blessing and I would like to see it available in all states to anyone with a terminal illness that requests it. Currently, only Montana, Oregon, and Washington offer the service.

It puzzles me why we have more compassion for our pets then we do for our loved ones. If we love our pets we do not let them suffer until they die. Yet, we think nothing of forcing our terminally ill loved ones to suffer until they die. That is pure insanity! Let those who believe in suffering to death indulge themselfs. My body belongs to me and I do not want it to suffer to death.
 
Everyone's perception of suffering is different and everybody's choice is different too. This is a difficult disease to go through with a support group let alone being alone. You have the right to feel what you feel. Like you said, there are others worse off than you right now so hopefully, while you're still capable of being mobile and doing whatever else you're still able to do, you will find ad much joy and pleasure out of your life as possible. People go through so much bad with this disease but what my husband and I were so grateful for was to spend every second after diagnosis with gratitude that we still had time together which gave us the opportunity to talk and convey our thoughts and wishes to each other. NKeep your chin up as much ad possible. Thinking of you. Yasmin.
 
You seem pretty competent on the computer, that's a pretty long post.

Being able to put you're thoughts into the written word is an enormous plus.

You say you're 78. You must have some interesting stories to tell.
I for one would love to hear them.

This forum is a great support group, we all lien on each other for support,
So, Share what you can, ask what you need.

Casey
 
You do sound wondeful for your age. I understand what you mean by having more compassion for our pets. I've had to make that decision a couple of times for my furry family members. My beliefs are there is a Utopia on the other side for all of us believers. My Mom has always told me not to put her in a nursing home and I do pray we don't have to. She is almost 54 and her speech is very difficult to understand at this point. And like you, her saliva is getting pretty thick. She has already said no to vents or any type of device to keep her alive. She only agreed to the PEG, that's it.
Take care of yourself! Oh and like CGARS, I would enjoy hearing stories.
 
I am so sorry that you are going thru this as we all are. If you need to share your feelings this is a great place to do it. There a lot of loving compassionate people on this forum. I have not been here long as I just was just recently diagnosed but I have found more information here than any place else. You are very literate. Perhaps you could start a blog about your life, your travels. sunewun
 
im 58 n was diagnosed 5yrs ago but my problems started almost ten yrs. i hve to depend on people to care for me. ii hve a 23yr old son tht until recently ws the reason to live, but now i hve to let him live n enjoy his life. time to give up.
 
I think that you do have a lot to offer here and hope that you stay with us for a while...

I also have kids to grow up into adults, and want to be there for whatever joys life will bring them.

I think a major issue with assisted suicide is that sick or poor people will feel obligated to end it, to help out others, not necessarily to help themselves.

On a side note, I've read here that taking mucin ex can help thin the saliva, and know of a few folks who got bot ox shots as well.

Good luck, and hope you live with als rather than wait to die from it.
 
i have had symptoms of limb onset since about january 2010 but i dont feel i'm "suffering". yes there are many challenges. my life has always had challenges so i see these adjustments as just a little diferent. i can use my ight arm/hand still but am in my pwc most of the time. trying to be as self sufficient as i can...stubborn.

...we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to uus. Romans 5:3-5
 
I agree with you in so many ways. I too would love some of your stories.
Beckysuenc
 
22 years ago I wished Dr. Kevorkian would help my mother out with death. Now I have ALS and don't know what I think at this point. But I do totally understand where you are coming from God bless you. Jamiem
 
Sorry about your diagnoses but let this forum be your support and family. It has helped me a lot.
 
I know how you feel .Hang around here .We lost some pretty special people here .I think you would be a asset to the forum
hang in there
Pat
 
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