Living with ALS

[mohdfxr]

You people are so nice and I know some of you have been dealing with this bad problem for longer than me? I don't want to live with this problem of als . Stop the bus I want off! This is the most horrible thing that can happen to a human. In my life. I need help with getting the stuff I need to stop this horrible Life. If anyone knows about some stuff please let me know?

 

[affected]

Anyone who knew would be unable to answer ...

What kind of support do you have? The first month or so after diagnosis is the very worst, it is so overwhelming, but it does level out a bit in many ways. It doesn't just become fine of course, but you have read here that we adjust, and we will try to help you do that.

 

[GregK]

There's a whole bunch of what to do next wrapped in the Sticky topics at the top of this forum.

Did you read them ... ?

 

[mohdfxr]

Thanks for the info. I still just want off this crazy train. No one has ever said just lay back and let things happen. You make things happen. There is no cure.

 

[affected]

You can register immediately with palliative care, hospice.

Tell them how you feel in detail and see how they can help you. They are experts at comfort care without attempting to extend life.

I can only say that the people here are trying to live with ALS for however long they have. Those that have in any way opted to get off the bus are not here to discuss that with you.

Do read the newly diagnosed sticky.
Do talk to your doctor and immediate family about how you feel.
Do consider some counselling and even meds.
No it won't stop the fact you have ALS, but it may help you come to some clearer decisions.

We know there is no cure, Greg for example has been living with that knowledge for nearly 4 years, so he has a lot of experience to learn from. Some of our PALS are FALS, so they have already witnessed this in their own loved ones before it hit them. They also have a lot of wisdom and experience to learn from.

We do know the overwhelming despair you are feeling, we've all been there/are there.

 

[Lkaibel]

Please hold the train. I see you were diagnosed this month. That means you have some mobile time left, time to do some things you want to do. Don't make a rash decision based in despair. I agree with everything Tillie said. Please take her good advice.

My husband was diagnosed June 30th, and we have a sweet bucket list going.

 

[Nikki J]

You have shared very little here which is your right. You have reported severe pain which is not usually a presenting ALS system. Your reported location is not one that abounds with ALS specialists. Have you been diagnosed by a neuromuscular specialist and confirmed by a second one? Before you get off the bus, make sure you are on the correct one to start with. There may be no room for doubt but at least consider. Incorrect diagnoses happen especially when made by non neuromuscular doctors

 

[scaredwifetx]

mohdfxr, Steve was diagnosed a year ago this month and in the beginning all he wanted was out. He researched all kinds of ways to end it all. I was so freaked out that I even helped him. The first month or two is so shocking and unbearable for everyone in the family.

I came to this forum a very scared wife, hence my handle. I read a lot of the stickies, asked a lot of questions, ranted, cried and was beside myself. Because of the support I received here I was able to help Steve and he decided he did not want to give up. He also thought about what it would do to everyone who loves him.

I will be very honest here. Life is still so hard and at times I dont know how we do this. ALS is a horrible disease but we do have more time than we think we do. In the beginning...all we can see is the end and how horrible we think it will be. One year later... and we are still here. This nasty disease hasn't robbed him of everything. There will be time to make decisions, to go out your way and at all times it is up to you.

Give yourself some time to deal with the shock and anytime you need support you can talk here.

 

[mohdfxr]

Thanks for all your time on this site. Yes I can walk a little but the gov does not give me any money besides my rent and food. So no way to get out of the house and that is it for me. I deal with what I get. And I went to 5 doctors before the last one told me I have ALS . Crazy train still rolling.

 

[Vincent]

Are you alone? If not, it isn't completely your decision alone. There others to take into account. When I was first diagnosed, I was down and depressed too. But one day you will wake up and think, What's changed? Other than having a name for what's going on, not much. You still function at whatever you did a few weeks ago. The only real difference is you now know time is not your friend. With less time you need to spend it wisely. Make time for the people in your life. Friends, family, enemies. Because the only transactions that matter are the ones you have with the people around you.

This is the chance to leave your legacy. It's not money, property or things. It is how you faced the biggest challenge you will ever face. I can guarantee you will die soon enough. No need to speed things up.
Vincent