Wall Hit

[JohnT]

Diagnosed 12-28-21. Have tried to live life, albeit limitedly, and hit that wall on mother’s day. While doing light yard work, left leg collapsed. 16 yr old son had to help me army crawl back into house. Three days later, in excruciating pain(had xrays- no breaks/fractures). Haven’t slept since Sat nite. Ambien not working. So here comes the slide! Lets see: ALS robs dignity, resources, strains your loved ones beyond imagination and slowly kills you. Nope- not for me.. where’s the damn off ramp?!?? No, really?

 

[wishmobbing]

So sorry to hear about you hitting a wall with that fall. This disease is a vile creature for sure. It's good you came here to vent.
You army crawled your body back to the house, you'll army crawl your mind out of this ditch.
Do you have equipment (rollator, wheelchair) in place to conserve energy and prevent falls?
Hope the pain fades quickly!

 

[JohnT]

Nice of you to reply. I had a 4+ month run of ‘normalcy’ lol. I guess the unknown was; when would trap door open? Appears it has…. in backyard w/my youngest. Hoped i could have squeezed in the summer. Oh well. My clinic slow walking its responses to my current situation - which finally did (couple hrs ago) ‘get to an ER.’ Lol! I have no equipment nor is my house handicap friendly—— made that decision shortly after diagnosis. looking for the off ramp. Not keyboard violin-ing. Is VSED only option?

 

[rmt]

What state do you live in? Some states have Medical Aid in Dying authorized, though I don't know what the process is or if it varies by state.

Though, I would recommend not rushing into anything so soon after a traumatic event. And of course talk to your loved ones about how you are feeling.

 

[JohnT]

New york. A state the allows everything, literally, except dying in dignity. I made decision day i was diagnosed. My loved ones will miss me but they understand and will support. If i can’t get clinical help on vsed, doing on own can be inelegant i am sure, but what about any of this is elegant?
There has been and are many ALS warriors including here! I am not one. There should be no shame! I am in a lot of pain. I have not slept since Sun morning and nothing is working. No way to live. Ty and Good bye for now.

 

[lgelb]

You don't need an ALS clinic to get help with pain and sleep. Please feel free to call on the latest primary care doc that did anything for you, or ask your best friend to recommend one. The same doc can be asked to write morphine "for air hunger" when you are ready for the off-ramp, but meanwhile, you might opt to try to get more comfortable for a spell, to test the hypothesis that this need not be that time. Deciding where and when to exit when you are fried in exhaustion and discomfort might be leaving some good time with your family on the table.

Best,
Laurie

 

[old dog]

Please listen to Laurie. To me, this sounds more like an injury rather than ALS pain. ALS weakness may have caused your leg to collapse but shouldn't be the cause of continuing pain.