Hello everyone,
I hope my friends here are doing well. I stopped coming here because I don't have an ALS diagnosis. But unfortunately, my problems continue and are still slowly getting worse. My muscle fatigue is pronounced, I have lost control of some of the muscles around my mouth, my muscles...
I got this email today-- and wanted to share it with all of you. I know there are many children here that are affected by ALS, and maybe if you have a teen this would be a good program for you.
http://www.outwardbound.org/programs/group-programs/heroic-journey/
Without going into the details, my son has reached out to me and asked for help in dealing with his father's death. He has been steadfast in refusing counseling, until this week when he broke down to tell me he needed help. He is 11, soon to be 12.
The hospice facility participates in a camp...
They are building me a bus shelter! This is big news; but first to other things.
My Favourite Wife and I are blissfully rattling our way south to Melbourne, on a glorious afternoon finally hallmarked Spring after an icy, grey and protracted winter. Generous respite provision for our Little One...
advice
back
camp
communication
depression
disability
driving
fear
health
life
mad
medical
mistake
morale
neurologist
neurology
nose
preparation
problem
problems
respiratory
respite
work
22-26Aug...been to hell and back this week.
no sleep since op for feeding tube 100 hours now
can't close right eye
see flashing light when do and have to open it
many other problems breathing can inhale through nose but exhaling struggle
salivated nonstop for hours filled my stomach with...
als
back
bed
blog
breathing
breathing problems
camp
choking
diagnosed
eye
eyes
feeding
feeding tube
goodbye
hours
mattress
meds
movement
muscle
night
nose
pain
peg
problems
shoulder
sleep
surgery
symptom
wanted
I have been asking myself about my recent dreams. The situations vary, but usually I am involved in something interpersonal that is stressful or worrisome. My therapist says that I am revisiting past experiences to improve the outcomes.
Offsetting this are memories that give me warm and...
this weekend the Washington/Idaho ALSA is hosting a family camp in Lake Chelan. The theme is hawaiin, i think i can handle that. It is mainly geared for the kids. Another blessing, thank you ALSA.:smile:
Rox
Being halfway between an HSP and PLS diagnosis, I've had a lot of time to learn the nuances of the two diseases. Since anyone with a generic UMN diagnosis ends up here, this seemed a good place to put up some info.
First, the similarities: HSP (Hereditary Spastic Paraplegia/Paraparesis) and PLS...
hello everybody. ive been lurking the forums a bit for the past few months now. i was hesitant to register but finally got the courage to do it. mostly because i would cry about what i would say or just the thought of writing it down would make me teary eyed. but i needed somewhere to vent with...
als
breathing
camp
chair
cry
dad
diagnosed
falling
family
feeding
feeding tube
heart
life
night
nurses
speech
story
stress
support
tests
trach
vent
ventilator
walker
Wow we finally have some good news today. Danny's new manual wheelchair will be here tomorrow and he can't wait! Also just found out that CMHC will fund and install our stairlift. Our landlord just has to fill out some papers because it is his house and when I spoke to him about it, he came over...