I live alone.

[fionae]

The paramedics just came.

I was choking.
I did everything I usually do to make it stop.
It wouldn't stop.
It went on much much longer than it ever has before.
I ran to my dear friend's apartment next door to mine.
I banged and banged on the door.
She answered immediately.
(I have had to bang and bang on her door before... ever since I've had ALS.)
(Last time was nine days ago.)

She called 911.


I live alone.

 

[lgelb]

Are you OK now? Are there plans for someone to monitor you tonight?

Maybe it's time to set up something a little more organized? What would the plan be if she wasn't there? Do you have a button or app that dials 911 and her and some others? Does your city have the Smart911 database where you enter your info in advance? (BTW, all PALS that do should go on line and do that.)

Losing your independence is the hardest part of ALS. I'm very sorry that you're having to deal with that. But don't wing it, for your own safety.

--Laurie

 

[affected]

Laura I do agree with Laurie - NOW is the time to get everything in place for yourself.

I can't even begin to imagine how hard your situation is. I believe you need to talk with your family, both any that live there or further away and work out some longer term solutions to you living alone. You may need to think about changing that situation far sooner than later - don't wait until you are in a real crisis.

huge hugs to you

 

[fionae]

I am sorry. I am okay. I only read both of your replies just now. I hope I didn't worry you.
There are so many impossibilities in my situation.
There are many complexities I have never shared here.
I am not attached to the idea of living alone.
I have no idea what to do, or how I am going to do it.

 

[Atsugi]

Alone with ALS is not good. Must find a solution.

 

[LifeEnthusiast]

I'm glad your are okay. Being alone is tough. I am in the exact same situation and no other alternative. It certainly is frightening.

For the time being how about trying out a Lifeline maybe? That's what they are called in Canada anyway. Essentially you wear a small device around your wrist or neck. There is a small communication device out in your home/apartment. If you are in distress you can press the button. If you fall, they can detect the fall and will reach out to you etc.

It's not a long-term solution but it might help short term.

 

[patrick123]

Get a life a life alert button. I have only had to use it once. When fell and could get up. I know it's a cliche but it worked. And my local emergency services knows I have ALS and was there in minutes.
Patrick

 

[LifeEnthusiast]

Okay. That's what they must be called in the States. They do work great.

 

[lgelb]

In some communities the city/state or ALSA can lend a Freedom Alert system (we donated ours to ALSA) and there is a mobile app I posted earlier.

Also, the 911 pre-need database is on the Web as smart911.

 

[scaredwifetx]

Dearest Laura, I am just seeing this post. i am so sorry you had to be alone in this. you do need at least a med alert,

 

[laurel]

I am sorry. I am okay. I only read both of your replies just now. I hope I didn't worry you.
There are so many impossibilities in my situation.
There are many complexities I have never shared here.
I am not attached to the idea of living alone.
I have no idea what to do, or how I am going to do it.

Fiona perhaps ALS Guardians Angels might help. Stu Millheiser used to be on this forum lots as he runs that charity and he has helped many people with ALS in difficult circumstances. It is worth a try.
Laurel

 

[Nikki J]

Stu had closed down the Guardian angels. I just saw he is reviving it for Christmas specifically. He will decide after that if he can continue beyond that. I don't think it is a resource for Laura just now unfortunately. I hope you can find help through ALSa , the MDA and your clinic. You certainly should be working closely with a social worker

 

[fionae]

Thank you all for your kind words and very helpful suggestions. I appreciate all of them.
I will be pursuing these suggestions.
Thank you.

 

[Green Queen]

Oh laura. Until you have more permanent solutions in place I'm so glad you have your neighbour there. Scary stuff.
Sharing here has given some good ideas.
Take care of you.
God bless, love Janelle xxx

 

[Nuts]

Laura, what a frightening situation. Do you have anyone you share everything with? Girlfriend, you need to open up somewhere, whether it's here openly or through private messagineg, a social worker from your clinic or an ALSA rep. Sometimes when we feel boxed in by complications, we miss things that can work. Please, please reach out.
Becky