Alana
Active member
- Joined
- Jun 25, 2015
- Messages
- 51
- Reason
- CALS
- Diagnosis
- 05/2015
- Country
- US
- State
- CA
- City
- Long Beach
Hi Everyone out there,
This is the first ever forum for me so I'm learning as I go. I truly wish it wasn't but that's what we've been dealt. My husband of 20 years is only 54 and was diagnosed in May this year. We had the second opinion of course with UCI of Urvine in Ca, the best in there field. It has been like a train ride that has not stopped yet, the wheels keep running down the track and we don't know yet how to make it slow down.
We went to our first ALS meeting and reality set in when we met other people that have the same condition. I've also been to a caregivers meeting which helped as well. These brave, gracious, kind souls made us feel welcome and I hope for us to do the same in time.
It's a lot of stress for the first few weeks as you really have to do so much! Very overwhelming! Living trust and will, social security issues, figuring out when to say no to work, getting your insurances line up, and informing your family and friends. Blah!
I've already booked that family vacation to Hawaii and many other adventures we can have together. I call it early retirement because my hubby deserves every moment enjoying his kids. I will take every advantage we are allowed and I can get away with to see a smile on his face. I was born and raised in Australia with an attitude that will serve me well in the coming years. My hubby knows I vary rarely stand down from most situations, I'm sure I've peeved off a few people in my time, this will test me further.
So too the men out there can you advise me on how I can be supportive with getting him to leave work and enjoy. He is a mechanical engineer/project manager, who bids jobs in construction and visits the sights. But most of all he is very proud man, being the sole supporter for his family he wants to make sure we are taken care of for the future. He is the best husband and father we could ever have.
And that's our story so far. Oh yeah his stage of difficulty is in his arms and hands, loosing there strength, he can still type with a couple of fingers but he gets tired easily. Lots of twitching and legs cramps.
Thank you all for taking your time to read our story, I look forward to reading and learning to help us through this journey.
Ozzychick ( Alana):|
This is the first ever forum for me so I'm learning as I go. I truly wish it wasn't but that's what we've been dealt. My husband of 20 years is only 54 and was diagnosed in May this year. We had the second opinion of course with UCI of Urvine in Ca, the best in there field. It has been like a train ride that has not stopped yet, the wheels keep running down the track and we don't know yet how to make it slow down.
We went to our first ALS meeting and reality set in when we met other people that have the same condition. I've also been to a caregivers meeting which helped as well. These brave, gracious, kind souls made us feel welcome and I hope for us to do the same in time.
It's a lot of stress for the first few weeks as you really have to do so much! Very overwhelming! Living trust and will, social security issues, figuring out when to say no to work, getting your insurances line up, and informing your family and friends. Blah!
I've already booked that family vacation to Hawaii and many other adventures we can have together. I call it early retirement because my hubby deserves every moment enjoying his kids. I will take every advantage we are allowed and I can get away with to see a smile on his face. I was born and raised in Australia with an attitude that will serve me well in the coming years. My hubby knows I vary rarely stand down from most situations, I'm sure I've peeved off a few people in my time, this will test me further.
So too the men out there can you advise me on how I can be supportive with getting him to leave work and enjoy. He is a mechanical engineer/project manager, who bids jobs in construction and visits the sights. But most of all he is very proud man, being the sole supporter for his family he wants to make sure we are taken care of for the future. He is the best husband and father we could ever have.
And that's our story so far. Oh yeah his stage of difficulty is in his arms and hands, loosing there strength, he can still type with a couple of fingers but he gets tired easily. Lots of twitching and legs cramps.
Thank you all for taking your time to read our story, I look forward to reading and learning to help us through this journey.
Ozzychick ( Alana):|