MaxEidswick
Legendary member
- Joined
- Sep 1, 2013
- Messages
- 5,598
- Reason
- PALS
- Diagnosis
- 08/2013
- Country
- US
- State
- Texas
- City
- Pinehurst
> I need to make the font larger to read
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I call it early retirement and beyond..
- Status
Green Queen
Very helpful member
- Joined
- Mar 30, 2015
- Messages
- 1,304
- Reason
- DX MND
- Diagnosis
- 4/2016
- Country
- AUS
- State
- Western Australia
- City
- By the beach
Good lord, Ed, that doesn't sound good!
My MND is quite a different variant to what you are going through, but even I have discovered Rule 1 is paramount. It really is all about adjusting to how we do things. My interaction with my kids is very different to what is was 12 months ago.
Falls frighten my kids terribly, I'm sure yours are the same.
Please take care.
God bless, Janelle x
My MND is quite a different variant to what you are going through, but even I have discovered Rule 1 is paramount. It really is all about adjusting to how we do things. My interaction with my kids is very different to what is was 12 months ago.
Falls frighten my kids terribly, I'm sure yours are the same.
Please take care.
God bless, Janelle x
canmark
Distinguished member
- Joined
- Jul 19, 2013
- Messages
- 111
- Reason
- PALS
- Diagnosis
- 07/2013
- Country
- CA
- State
- Ontario
- City
- Toronto
Tell your husband to investigate the long-term disability benefits from his employer. He may find that he could actually make more money by NOT working, while still maintaining healthcare benefits, pension plan, etc. He will also have all that extra time to spend with you and the family. But he should also keep in touch with his work friends, as interacting with friends and coworkers is an important part of one’s mental well-being – and makes you still feel like you’re part of the world.
I was diagnosed in July, but didn’t go on disability leave until October. I slightly regret that I didn’t go on leave earlier so that I might have been able to enjoy the summer (I live in Canada). By the time the next summer rolled around I was in a wheelchair and was not able to do the same things. So, good of you to start planning vacations now while your husband has the ability to do things. This is important. Do things while you can, because you never know when you’ll lose those abilities.
I was diagnosed in July, but didn’t go on disability leave until October. I slightly regret that I didn’t go on leave earlier so that I might have been able to enjoy the summer (I live in Canada). By the time the next summer rolled around I was in a wheelchair and was not able to do the same things. So, good of you to start planning vacations now while your husband has the ability to do things. This is important. Do things while you can, because you never know when you’ll lose those abilities.
Mtzu
Distinguished member
- Joined
- Oct 24, 2014
- Messages
- 186
- Reason
- PALS
- Diagnosis
- 04/2015
- Country
- US
- State
- California
- City
- Los Angeles
Alana and Ed, Welcome to the club nobody wants to join. Sorry you have to be here. It's good to see that you are getting a good start on planning your adventures.
It looks like we're not too far from each other. Andrea and I live in LA. Who knows we might just cross paths one of these days.
Cheers, Michael
It looks like we're not too far from each other. Andrea and I live in LA. Who knows we might just cross paths one of these days.
Cheers, Michael
anderkling
Distinguished member
- Joined
- Dec 1, 2014
- Messages
- 273
- Reason
- PALS
- Diagnosis
- 01/2015
- Country
- CA
- State
- B.C.
- City
- Surrey
Very sorry to read about your diagnosis, and only 54 years old. It hits so hard at first and will take time to absorb. There is time, though. Things won't happen all at once. There will be time to address each stage, each new situation, so try not to panic. I'm 8 months into it now, and can testify that as things unfold with this disease, solutions arise with each problem, with ample time to address each one. There is time, too, to live, to still enjoy life, to draw close to your loved ones, and to make precious memories. For me and many others, having a terminal diagnosis helps one to live "better" in the sense of living more in the moment, appreciating the beauty of life all around you, focussing on the important things and loving more intensely. Unlike people who die suddenly, we are given the gift of time to prepare, to say our good-byes, which for you won't happen for a long time, hopefully years. Allow yourself time to grieve, to hold each other close, to plan vacations and short get-aways. Try not to succumb to lasting, debilitating fear, despair and anxiety, which can threaten to rob you of your precious time on earth. Rise above it, again and again, and you will find joy in life. These are just some thoughts from my experience. Keeping you in my prayers, Ed and Alana.
Charlene
Charlene
rosec
Distinguished member
- Joined
- Aug 2, 2012
- Messages
- 330
- Reason
- Lost a loved one
- Diagnosis
- 11/2009
- Country
- US
- State
- CA
- City
- Costa Mesa
Alana, thanks for sharing your story. My DH was 54 when he was diagnosed. We celebrated his 60th birthday in Feb of this year. His progression has been quite slow. Do you go to the ALS clinic at UCI med center? We used to go there until the end of 2013.
- Status
