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JimInVA

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Greetings good ladies and gentlemen!

I don't post here as often as I'd like... but, for me, time is a privilege and not a promise. From time to time, I feel it important to chronical where we are, currently. I honestly don’t know if I do this for you, the reader… or for me, the CAL. One day, I suspect, I’ll be able to look back with a bit more honesty. I suspect that I’ll find it will have been for a broad myriad of reasons.

My PALS, Darcey, is still hanging tough. You may recall that Darcey showed first symptoms in November 2012. Originally diagnosed and treated for CIDPS, she was re-diagnosed with ALS in early 2014 (they have categorized her ALS as lower limb/spinal onset). Darcey is on her breather (Trilogy) pretty much full time now. And she is beginning to have swallowing difficulties. She has a PEG but is adamant that she will only use it for medicines and not for nourishment. Hopefully, the decline in her ability to swallow will be slow. She still has good use of her voice and is able to use a wireless headset/microphone with Dragon Naturally Speaking to write emails and participate with friends and acquaintances via Facebook. Her Tobii eye gaze sits gathering dust in a corner that she cannot see.

Tomorrow, Darcey matches my age at 62. She always lets me go first... allowing me to test the waters for a bit over 10 months before joining in at that age. Last year at this time, we didn't really expect to be here. But we are! :) Caregiving is indeed an effort of love. I can’t describe to someone who has not experienced it for a time how much work is involved. It is physically and emotionally taxing and demanding. But I also can’t describe the equally fulfilling feeling of accomplishment, love and determination that allows me to believe that no one else could take better care of my Darcey. Sometimes I feel a bit like Spock from the Star Trek series. My nuclear engineer’s mind says the conflict of “this is making me old much too fast” and “I’m proud at how well I’m doing this” can’t be resolved. Yet most days, I feel an amazing peace considering how our reality has so changed.

Son Jim just had his 30th birthday and decided to celebrate such an age by traveling to Iceland with his best friend. Our daughter, Connie, is traversing the challenges of being on her own and trying to find the promise of her heart at 27. And Darcey and I continue to make plans for the months that we believe still lie ahead for the both of us. We’ve agreed to cook the two turkeys for the family Thanksgiving gathering at Mom’s house. And Darcey’s good friend Natalie is again coming by to be Darcey’s hands and to cook Christmas cookies (neither of them expected to share that joy this year). And Darcey is absolutely determined that she’ll get to razz me for again gaining another year on her in mid-January. And se we continue on.

We’ve made some wonderful acquaintances and friends online. There is a special quality that comes to the surface of those with life altering challenges. Some time ago, one of my fellow CALS and her husband (Becky & Matt) came to visit. It was the first time that Darcey had actually talked, face-to-face, with someone else who had ALS. Their stay was much too short… but we recognized and appreciated it for the work involved, determination to do so and the “special love or affection” we all share, together. Recently, one of our CIDP friends was down from Vermont to visit a close friend whose husband has recently passed away. Even though Darcey moved from a diagnosis of CIDP to ALS, we’ve continued to keep in touch. Susan’s trip would bring her to Charlottesville… about 3 hours away from our home In Poquoson. She asked if she could come and share an afternoon to get acquainted in person. It was an absolute joy! The hours flashed by as minutes and we all knew it to be a life moment… one to never be forgotten. And in September, a past CALS (is one ever a “past” CALS?) flew from Texas to Virginia to spend several days with us. I’ve never seen two people with so much to share as Debbie and Darcey did that weekend. I kept my earbuds in and only came out long enough to feed them and to give Darcey an opportunity to use the restroom. It was an absolute joy to watch! If you ever get the chance to visit or be visited… as we have… do it. The tendency to let the fear of “what WILL we ever find to talk about” deprive you of what might be another wonderful moment of an entire life.

Although I sleep well, I’m tired most of the time. I think that the challenge of running a business, caring for a home and being a caregiver is taking its toll. There are moments when I’m ready to move past… until those few seconds later when I give Darcey an unexpected hug and know exactly why I’m here. We had planned to RV in our retirement years. I am (was) an avid surf fisherman and had fished with some of the very best in the world. We’d travel along the coasts of this fine country… Darcey watching and reading as I fished and spun yarns that only a proper fisherman can. Although we won’t do that together, Darcey continues to encourage me to take that trip with Elsie (our dog). I have the RV picked out and she often asks if there are any new thoughts relating to how I’ll have it configured. Part of me wants to run away and just fish or find that quiet place hidden away in some mountain. Another part of me wants to offer to continue caretaking for others… scheduling a few days to volunteer time so that a current CALS can take some time exclusively for themselves. I think the dreams are a necessary part for my mental health… and helps bring each “today” back into the focus that allows me to be so good a CALS.

Anyway… it’s has been awhile since I’ve posted here… though I read regularly. Keep making memories. Keep making time to live. Enjoy the things that take you back to a past “normal”… but don’t deprive yourself of the many wonderful things that can be a part of this new normal. And keep posting in here. It may be good for you… but it is often even better for us (me) than you might know.

My best to you all!

Jim
 

scaredwifetx

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07/2015
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Jim, thanks so much for this post. As always your posts are very inspirational to us all. I always look forward to the next update. I am so glad that you and Darcy are enjoying your life together in so many special ways.
 

Jhill

Distinguished member
Joined
Mar 13, 2016
Messages
166
Reason
Lost a loved one
Diagnosis
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A very thoughtful post with the ups and downs of this disease.

If you do decide to do future caregiving, someone would be so fortunate to have you. You sound like an amazing CALS.

Hugs
Joan
 

Gembead

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Joined
Oct 11, 2014
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Loved one DX
Diagnosis
10/2014
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Aus
State
Western Australia
Hi Jim, great to see you here again, another wonderful post, I know exactly how you feel and where your coming from. Thank you for your careing and loving of Darcey and reminding us all of what is really important.
Love and hugs to you both. XxxxxGem
 

Nuts

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Joined
Feb 23, 2014
Messages
2,486
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01/2014
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North Carolina
Jim, it is so good to hear from you. Thank you for the update.

I think you you and Darcey often. Please give her a hug from me.

I've seen other CALS mention providing respite in the future for others. I think it would be a wonderful thing to do, but I often wonder if I'll want to help or want to run as far as possible from ALS. Time will tell...

Again thanks for checking in.
Becky
 

Narrowminded

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Apr 30, 2016
Messages
2,314
Reason
Lost a loved one
Diagnosis
07/2007
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US
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Jim,

Thank you for sharing a window into how you and Darcy are doing. I'm sure all of us here can relate to everything you've said. I know many times I think, that when this time is over with my DH, PALS, that I want to go off in an RV and just be by myself for a time. And I can see Becky also feels that way.

Sending Hugs and Prayers your way as you continue your journey,

Sue
 

gooseberry

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Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Country
US
State
FL
Being on the other side is weird. You definitely have to learn how to put yourself first.

Jim, I am so glad you can keep a positive attitude. I lived in a world of fear the last few months because I had to work away from home. MI am so glad for all of the CALS who can be with the pals during the day.
 
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