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Jomeha

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Joined
Apr 4, 2020
Messages
9
Reason
CALS
Diagnosis
03/2020
Country
US
State
NJ
City
Ringoes
Three months ago my husband was packing for a 3-week business trip in India. He had been complaining of shoulder aches and pain for about 6 months or so that the doctor thought might be the mattress or pillow and had been battling fatigue that was attributed to work stress and very very low vitamin D; but he was an active, seemingly healthy, workaholic. Today it took him 5 minutes to put his pants on. He came home from the trip saying that his brain was working fine but he was having trouble making his mouth form the words. It's been a whirlwind from there. Bloodwork, MRI, EMG, genetic testing (his mother passed from ALS in 1997), and Riluzole. We're now in a holding pattern waiting for the Radicava to be approved and Columbia to call with an appointment. I know I'm not alone, every caregiver has their own version of my story, but I feel alone and I'm terrified. I have 3 20 something-year-old kids who will lose their father and are facing the genetic realities this diagnosis presents, and I'm amazed at how fast this is moving. He says every day is a new adventure and its an accurate statement. He needs a will, an advance directive, shower chairs, information on speech aids, and I don't even know what else. He's started using a cane, after about the 3rd fall/stumble. I never expected him to be at this point already. I'm so ill-prepared. I'd gratefully accept any thoughts, advice, or words of wisdom from those of you who have been where I am now.
 

JimInVA

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Joined
May 29, 2014
Messages
852
Reason
Lost a loved one
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
Jomeha,

I'm sorry to have to welcome you to our forums. That aside, there are many good people, here, who are also walking/running along the same ALS path as you. You are not alone. If you will look in the Caregivers section of the forums, you'll find "stickies" that will answer a lot of your initial questions. Please feel comfortable asking any specific questions you may have. You will get answers and differing perspectives that will help you with choices and decisions that you might find before you.

My PALS was showed first "what the heck is this" symptoms in November of 2012. Our two children were then in their 20s. Both are now in their 30s. They have adjusted well to their Mom's ALS situation... as I suspect your children will, too. Our approach was to be transparent, open and honest with them along this entire path. My son was with us at a clinic visit when Darcey's neurologist told her frankly that she was in her last 6 months of life... so she should plan accordingly. Darcey smiled at her doctor and said something to the effect of, "Thank you... but I've still a lot to do and accomplish before I'm ready to give it up." That was in March of 2016.

For me, personally, I had to find a way to visualize what was going on. I talked about this with Darcey and came up with an analogy. We imagined that we were on a train. We didn't ask to be on this train, but we were on this train nonetheless. We knew where it was going but we didn't know how long it would take us to get there. And, it seemed that we couldn't get off until we reached that end destination. Fortunately, we could see options. We could try to make the best of each day that we had on this crazy ride or we could perpetually bemoan the fact that we were here. We took the first choice and have done most everything we could to make these the best days that we could. I hope that once the shock of all of this lessens, that you're able to still grasp and hold onto all the many good things that will still come your way.

I hope you find this a place to gain knowledge and to share both your joys and your concerns. Again, welcome!

My best...

Jim
 

lgelb

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Joined
Nov 5, 2009
Messages
8,912
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hi Jomeha, a sad welcome to you. Your local ALSA chapter may have some insights and loaner equipment (like a lift) for you. Since his progression sounds fast, starting the process for a power wheelchair, for which there are pandemic provisions to do as much as possible via telemedicine, is probably advisable.

Just wondering, did you look at Rutgers/RWJ as a possible clinic, rather than having to go into the city? Did he get a second opinion on the diagnosis?

You will find other threads on preparation -- while recommending that you also carpe diem. It is a balance, for sure.

No question is too big or small. Give yourselves both time to process.

Best,
Laurie
 

Jomeha

New member
Joined
Apr 4, 2020
Messages
9
Reason
CALS
Diagnosis
03/2020
Country
US
State
NJ
City
Ringoes
Thank you both for your responses. There's so much to think of to make sure he's as comfortable as I can make him.

The RWJ clinic diagnosed Joe and suggested Columbia, I think largely because of his mother's ALS. Testing was done for 6 mutations/markers (I don't yet fully understand the genetic component) which all came back negative. If I followed correctly RWJ felt that he would benefit from a second opinion, the multi-disciplinary approach, and experience with genetics. I think RWJ will wind up the "home base" with input from Columbia.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,370
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Columbia is the place in your region for ALS genetics. Matt Harms MD does a lot of work in ALs genetics. Assuming the diagnosis is confirmed you might ask about their research study in family ALS. Pretty sure it is on hold due to the coronavirus but if they accept people without an identified family mutation your children might be interested. If there is an unidentified mutation ( as opposed to bad luck) getting your dna into research studies is a good idea So your husband should accept if he is asked to give a sample too. gradually they have chipped away at unidentified FALS.
 

wmilo

Active member
Joined
Feb 14, 2018
Messages
78
Reason
PALS
Diagnosis
10/2017
Country
US
State
PA
City
Zelienople
Jomeha, I’m glad you found this community, but sorry for the need.

If you have a regional ALS Association presence, they may be able to help with OT recommendations on home safety as well as loaner equipment. If you can become connected with a multi-disciplinary clinic, they will also help with your questions.

I agree with Jim about being open with your children and trying to make the best of each day.
Regards,
Bill
 
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