- Joined
- May 29, 2014
- Messages
- 1,013
- Reason
- Lost a loved one
- Diagnosis
- 04/2014
- Country
- US
- State
- VA
- City
- Poquoson
I wanted to take a quick moment to reach out and say "hello" and to introduce myself. My name is Jim (60) and my wife's name is Darcey (59). Darcey is my PALS and first showed symptoms in November of 2012. Originally diagnosed and treated for CIDP for about a year,
we became concerned that we continued to chase something that seemed to progressively get worse. In early 2014, we asked for a referral to Johns Hopkins and were accepted. Two months later, after a battery of tests, Darcey was diagnosed with Spinal Onset ALS. Obviously, it was not a diagnosis that either of us wanted to hear... but at least we now knew precisely what we were dealing with.
2013 was a frustrating year. We held onto hope that there would be recovery from CIDP and made decisions that included an expectation of remission. Yet we always found ourselves in a position of having to play catch-up... because we'd not anticipated properly where the next month would take us. Now, with a clearer understanding, we've begun to make strides towards being ahead of the progression and have actually improved our "quality of life".
Health-wise, we've said our goodbyes to Darcey walking or standing. Most transfers have moved away from the "bear hug" to use of a Hoyer lift. Sleeping at night has been hugely improved with the introduction of a BiPAP machine. And we only wake to reposition legs and turn her in bed (side, back, other side) once every 1.5 to 2.5 hours. She can still lift a fork to her mouth and lift half-filled, light cups... but I can see that becoming more and more difficult on a weekly basis. She still has full voice (though I can hear it weakening at times) and shows no difficulty with swallowing... though she's prone to asperating if she doesn't lean her head forward when swallowing liquids.
My hope, here, is to learn from those who have already moved past where we currently are... and to provide help and support to those who might benefit from where we've already been by sharing what we've already learned.
And so, with that introduction, I again bid you "Greetings!"
Jim
we became concerned that we continued to chase something that seemed to progressively get worse. In early 2014, we asked for a referral to Johns Hopkins and were accepted. Two months later, after a battery of tests, Darcey was diagnosed with Spinal Onset ALS. Obviously, it was not a diagnosis that either of us wanted to hear... but at least we now knew precisely what we were dealing with.
2013 was a frustrating year. We held onto hope that there would be recovery from CIDP and made decisions that included an expectation of remission. Yet we always found ourselves in a position of having to play catch-up... because we'd not anticipated properly where the next month would take us. Now, with a clearer understanding, we've begun to make strides towards being ahead of the progression and have actually improved our "quality of life".
Health-wise, we've said our goodbyes to Darcey walking or standing. Most transfers have moved away from the "bear hug" to use of a Hoyer lift. Sleeping at night has been hugely improved with the introduction of a BiPAP machine. And we only wake to reposition legs and turn her in bed (side, back, other side) once every 1.5 to 2.5 hours. She can still lift a fork to her mouth and lift half-filled, light cups... but I can see that becoming more and more difficult on a weekly basis. She still has full voice (though I can hear it weakening at times) and shows no difficulty with swallowing... though she's prone to asperating if she doesn't lean her head forward when swallowing liquids.
My hope, here, is to learn from those who have already moved past where we currently are... and to provide help and support to those who might benefit from where we've already been by sharing what we've already learned.
And so, with that introduction, I again bid you "Greetings!"
Jim