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JimInVA

Very helpful member
Forum Supporter
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
 
>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

welcome, Jim! Sorry you need to be here, but you will find a wealth of info and wonderful support!

see:

https://www.alsforums.com/forum/memoriam-memory/25406-soar-high-your-wings-my-love.html

https://www.alsforums.com/forum/come-tea/25472-come-tea.html

https://www.alsforums.com/forum/stories-hope/22764-happiness-now-honor-sharon.html

https://www.alsforums.com/forum/current-caregivers-cals/24646-pity-party-coming.html

and many others!

Max

:)
 
HI Jim, you are among friends here.
 
Welcome Jim, you have come to the right place, there is a load of great advice and amazing support. It sounds like your wife's progression is much like my husbands. Although he is almost a full quad he is still able to eat and talk, BUT is using 24/7 non-invasive respiratory support in the form of BiPap at night, and sip & puff ventilator during the day. So if you have any questions ask away.

Paulette
 
Welcome Jim, you've joined an elite group that no one wants to join, but there it is. At least you have found the best place for support and advice.

You've already figured the number 1 important thing - try to stay ahead of progression. I found it easier to have equipment sitting unused in a garage for any length of time, that I could suddenly pull out and start using, than to find us in crisis.
 
Thank you ALL for the warm welcome.

@Max - Thanks for the thoughtful addition of links to get me pointed in a good direction. I noticed a post that you made regarding Voice Banking... and have already begun discussion with Darcey in that regard. Thanks again!

@dalvin - I see that we are almost neighbors! Thanks for the "hello".

@Barbie - It IS good to be amongst friends. I hope to prove worthy of that inclusion.

@Paulette - Thanks for the offer to field questions. I'm curious about the "sip & puff vent" and if/when we should procure such an item so as to have it ready and available before we desperately need it. Are we best to deal with such question/answer/dialogue privately or as a public posting? Being new here, I'm not sure how this community prefers to interract with each other.

@Tillie - I'm sorry for your loss... and am humbled by the strength that allows you to continue to offer care for those of us who continue on this journey. Thank you...

Jim
 
Jim, as for carrying on dialogues, you can do it either way you are comfortable with. Most of the time you'll get a wider range of input and opinion on the public forum but if you have a question that your not comfortable going public with but think a particular individual might have the answer to you can private message them. You have to post a certain number of times before you can do the private thing though. Think it might be 25 but not sure, you'll see it referred to here as pm ing. Give personal info like email addresses and phone numbers on the public is discouraged though, you don't know who else might be reading this
 
Hi Jim, I'm so sorry you had to join this group, but am glad you found it. I've learned more from the folks on this forum than I ever could have imagined, and everyone here is incredibly supportive.

I see you are in Poquoson--we lived in Tabb for many years, and our daughters are still in the area. We moved to NC a couple of years ago before learning that my husband's early symptoms weren't caused by age, and while I love our home, I often wish we were closer to the girls again.

Please extend our welcome to Darcey also. While my husband doesn't get on the forum, I share information with him and know that when he's ready he will enjoy this family as much as I do.
 
Thanks, Nuts! You're right... I've already begun to find information I was unable to find elsewhere.

We're lucky to have most of our family nearby. Only our son, who lives is Brooklyn, NY is of any distance away. If it helps, I'll wave towards your daughters as we pass Tabb on the way home. Thanks for the welcome. My best to you and your husband...

Jim
 
>Please extend our welcome to Darcey also. While my husband doesn't get on the forum, I share information with him and know that when he's ready he will enjoy this family as much as I do.

and don't forget to post pics of kids and dogs!
 

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Welcome Jim, you are among friends here.
janie
 
I'm sorry to have to meet you under these circumstances, but am glad to be here. Thank you for the hello and welcome.

Jim
 
sorry to see you here, but glad to have your acquaintance.
That IVIG is so unbelievable ex$pen$ive surprised they treated your Darcey with it for a year! Steve got 3 separate treatments and then a jumbo treatment of steroids and they moved him along when he did not improve and/or continued to decline(at this time his progression was very slow)

you'll find good advice and support here
 
SMP51,

While treating Darcey for CIDP, they started with 4 days of IVIG and then did a once a month one-day dose. After the better part of a year, with symptoms continuing to worsen, they upped her dose to 4 days of dosings, once a month. They also included Prednisone (steroid) & Imuran (immune suppressant). And you are quite right... IVIG is an expensive treatment and we've been very grateful to have good insurance. Thanks for the comments... and also glad to meet you.

Jim
 
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