Time to say THANK YOU!

[Ells]

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.

 

[gooseberry]

Nice to meet you. I am sorry you have to join our group but I am quite glad your progression has been slow. I have a 13 yr old and my husband is progressing at the moment. It is very hard when kids are involved.

 

[Nikki J]

Welcome. Glad you decided to speak up! I look forward to getting to know even more about you. I rejoice to hear from a slow progressor. I am sure there is a lot we can learn from you too. Do you see Dr Hardiman by chance? She is supposed to be wonderful. Have you heard the MNDA Symposium is to be in Dublin this December? I want to go but it is a long way! I went this year ( to Florida) and the sessions were brilliant ( in both senses of the term)

Please join in the conversation as you want

 

[Ells]

Thank you both for the welcome.

Yes, kids do make the situation different, but my 2 were very young when I was diagnosed so have grown up with me like this.

Nikki, yes Orla is my Neuro.

I'll join in if I can help anyone. Better late than never I suppose !

 

[lgelb]

Ells, welcome. I hope 2016 brings you (and everyone here) the continued joys of time with family and friends.

Best,
Laurie

 

[anderkling]

Thank you for sharing your story. Wonderful that you are in your 10th year, and have been able to watch your children grow, although raising them as you suffer ALS must have been challenging. It's certainly a huge advantage to have your medical bills taken care of by the government. Here in Canada we have a similar system. I'm quite overwhelmed at how abundantly services and equipment are provided at no cost. It's a gift not to have to worry. Your positive outlook gives me courage. Welcome to the forum!
Charlene

 

[Nuts]

Welcome, and thank you for speaking up. I have no doubt that you have much to contribute!
Becky

 

[scaredwifetx]

I am so glad you decided to tell your story. 10 years is so inspiring and your positive and happy outlook on life is wonderful example. I visited Ireland with four friends a couple of years ago and I can honestly say it is my favorite destination. We met so many wonderful people there and I loved the attitudes as much as I loved drive around Ireland. There was beauty everywhere we looked.

 

[Ells]

Thanks for the warm welcome.

I hope I can give back to the forum.

E.

 

[fionae]

"I hope I can give back to the forum."

Dear Ells...
You already have, in many regards.
(And I very much appreciated your post to ME.)

You are a very gracious and kind person.

Thank YOU!

Sincerely,
Laura.

 

[Osiyo]

@Ells, It's just plain humbling, this type of thing brings tears to ones eyes. Where is the tissue? I'm new here too but only 8 months into this journey. It's nice to know there are survivors of more than 2 to 5 years, that's the average survival time is it not?

I am US Native American of the Cherokee Tribe, my funny name "Osiyo" is Cherokee for generally speaking "Hello", ex US Army sent to Germany in the 1970's and met a nice German Girl and married her of all things, now we have 41 years since 1974 and 3 grown children and 4 grandchildren, so I have received many blessings from God, and I am grateful. Plus the greatest blessing an all-in medical dental system here in Germany. I have no real need, have everything I need when I need it, what more can you ask for? Really blessed I am and very thankful, I have to be very thankful for each new day that I can walk, although I remind everybody of drunkards stumbling, but I can stay on my feet, I have only tumbled 2 times now and that was only because I tried to do fancy footwork through or around obstacles laying on the floor, so it's a controlled tip-over so to say. I have a great fight with my balance, I don't remember reading about equilibrium problems?

OK forgive I could go on for hours but I have question about specifics on: "the Tobii EyeX on my laptop with open source software."
I asked my dear friend Google and he tells me that you are using the Tobii EyeX Controller, I am a Microsoft Certified Architect (MCA)
for Directory Services 2008R2 / 2012R2 so I can wheel and deal with operating systems, so may I ask which Open Source Software do you run your Tobii in. I have a new notebook and just installed Windows 10 on it. Am very interested in the Tobii interface and will be doing some heavy studying this system be blessed for naming it.

Again Ells, I will pray for you that you can continue as you are and fully enjoy seeing your children grow old. Be blessed and again thanks for a thanks.

 

[Ells]

Osiyo,

The right software for you depends on what you want to use your tablet for. I mainly use Bkb and, occasionally, Optikey, both on GitHub website.
Search for "open source software, tobii eyex controller" and you'll get a number of results, you will have to research which software suits your needs best.
The Developers Forum on the EyeX site is useful to keep up w/ What's New. Other trackers e.g. Eye Tribe are also worth a look.
Hopefully you won't need to use eye gaze for a while!

Yes, lack of balance is a big problem , don't fall! The last thing you need is a broken bone! Keep safe and use a walking aid, though I know it can be hard to admit & accept that you're progressing, but falls are best avoided.

I wish you all the best, Cherokee man and congrats on your long marriage!

Ells.