Ells
Distinguished member
- Joined
- Oct 26, 2015
- Messages
- 208
- Reason
- PALS
- Diagnosis
- 03/2007
- Country
- XYZ
- State
- MY ACCOUNT
- City
- PLEASE DELETE
I’ve been reading this forum for a long time but only recently became a member.
It’s definitely time to say THANKS!
I’ve learned a lot and wanted to let you all know that your expertise is so vital to the silent majority of us “lurkers” on the sidelines. So, thanks to all the regular contributors; I’m loathe to single out people, but Laurie & Nikki seem to answer my unasked questions!
Briefly about me:
• Symptoms late 2006, diagnosed early 2007 with sALS Limb onset.
• In pwc by mid-08 with weak voice & arms. G tube fitted and replaced by G button.
• Totally dependent by mid-09.
• I use Tobii EyeX on my laptop with open source software.
• My last FVC was 27% and SNIP @19, that was 2 years ago. Not much point having them done again, but I do o/night pulse oximetry every now & then to monitor Sats. I use BiPAP most nights, but am comfortable without it.
• I get 2/3 of calorie intake through G button and most fluids, the rest I take orally; swallow is good but tongue is useless so chewing not great!
I know I am very lucky to be in my 10th year living with ALS. My well regarded MND Neuro says I’m “stable”. I love life and I’m happy, no doubt made easier for having 2 wonderful kids (now aged 12&14) and a great hubby. I’m also very healthy, always was.
I also know I’m privileged to live in a country (Ireland) with a state funded health system, albeit paid for through high income taxes, so I get meds and most equipment provided to me. I have carers provided as hubby works full time, we’re under 50.
Anyway, thanks again to everyone,
Ells xx.
It’s definitely time to say THANKS!
I’ve learned a lot and wanted to let you all know that your expertise is so vital to the silent majority of us “lurkers” on the sidelines. So, thanks to all the regular contributors; I’m loathe to single out people, but Laurie & Nikki seem to answer my unasked questions!
Briefly about me:
• Symptoms late 2006, diagnosed early 2007 with sALS Limb onset.
• In pwc by mid-08 with weak voice & arms. G tube fitted and replaced by G button.
• Totally dependent by mid-09.
• I use Tobii EyeX on my laptop with open source software.
• My last FVC was 27% and SNIP @19, that was 2 years ago. Not much point having them done again, but I do o/night pulse oximetry every now & then to monitor Sats. I use BiPAP most nights, but am comfortable without it.
• I get 2/3 of calorie intake through G button and most fluids, the rest I take orally; swallow is good but tongue is useless so chewing not great!
I know I am very lucky to be in my 10th year living with ALS. My well regarded MND Neuro says I’m “stable”. I love life and I’m happy, no doubt made easier for having 2 wonderful kids (now aged 12&14) and a great hubby. I’m also very healthy, always was.
I also know I’m privileged to live in a country (Ireland) with a state funded health system, albeit paid for through high income taxes, so I get meds and most equipment provided to me. I have carers provided as hubby works full time, we’re under 50.
Anyway, thanks again to everyone,
Ells xx.