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Scarlett0123

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CALS
Diagnosis
06/2018
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Us
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Florida
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My husband, the love of my life was diagnosed with the slow moving ALS 2 months ago. I have been freaking out and crying and a complete mess. I think I am sort of in control now. He has remained in control the whole time and says that he can’t afford to break down since he does not know how many good days he has left and he will save that for later. Is that normal? They asked me at the ALS clinic if he had accepted the diagnosis and I was not sure what to say. So far most of the muscle wasting and weakness is in his arms. Mild changes in his legs and very mild in his face. We ordered modified items to give him more independence. We do get into small tiffs about him overusing his arms when I can help. Not sure if that is my fault for wanting to save them and not letting him do things at his pace. I am a control freak with an out of control situation. Signed, emotionally exhausted, Scarlett
 

KimT

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08/2015
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I'm so sorry your husband was diagnosed. People handle it differently. My diagnosis took nearly a year because I remained pretty strong and that threw them off. Finally, the clinical exam started to line up with the EMG and I was diagnosed. The way I reacted, living alone without a CALS, was to throw myself into a plan of relocation, making hard financial decisions, and coming up with a supplement regimen for my general health and to combat inflammation. I couldn't afford to break down either. I could either sit around waiting to die or set up my life to live out whatever time I had.

Regarding the use if limbs. It's really not the muscle that dies. It's the neurons controlling the signal from the brain to the muscle. As long as he's not pumping heavy iron and is safe, it's ok to use his arms and hands as long as he is able. From a PALS perspective, it may be hard to give up control until it is necessary. It's also good to start range of motion exercises, pool time, and gentle stretches.

I suggest you work on a way to deal with your stress and exhaustion. Meditate, exercise, massage, anything that gives you some relaxation might help. Maybe talking with a counselor? You need to take care of yourself so you will be able to help him.
 

KarenNWendyn

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Sorry to have to welcome you and your husband here.

I am also a limb-onset PALS with slowish progression. I have found this forum to be invaluable for providing information and support.

With ALS, we think in terms of energy conservation. For example, if someone helps him with bathing and dressing, then maybe he’ll have enough energy to attend a social event. He probably needs to figure much of this out on his own to really buy into the concept.

If he does too much, he’ll exhaust himself.

Some use the analogy of spoons representing energy units. Each day, you wake up with a fixed number of spoons and have to figure out how to spend them.

He’ll want to set his own priorities for how he wants to spend his energy spoons. You may have other ideas.

One of the many challenges adjusting to this disease is it shifts the balance of power in your relationship. You are now in a caregiver role even if he is still very independent. He faces progressive loss of function and is desperate to hold on to whatever he still can and control what he can before he loses control. This is uncharted territory for both of you, and it will take time to find a new balance.

Go easy on yourselves.
 

lgelb

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Hi Scarlett, very sorry that you find yourself here. Don't waste your time on tiffs about his using his arms -- that is part of his coming to terms and though Karen is right that there is a battery that runs down, the mind is a battery, too. There will be bigger issues and bigger tiffs, unfortunately, but if you keep talking with each other, you will come through with all the love you have now.

BTW, when they ask you at the clinic if he's accepted, you have the right to say, "Ask him." It's kind of a meaningless question. The issue is how someone deals. There are times when we freak out and others we deal. The clinic isn't really going to be your guide for that. It's what you do as a CALS, not how you feel, that counts, and no template for crying. We will support you however we can.

Best,
Laurie
 

Scarlett0123

New member
Joined
Aug 29, 2018
Messages
6
Reason
CALS
Diagnosis
06/2018
Country
Us
State
Florida
City
Tampa
Thank you for being here and sharing advice. One of the things I had hoped to get from the Clinics was group support but I realize now that is not what that is for so this site really helps. I have millions of questions and thoughts and as I keep reading I am starting to find some answers. I am actually familiar with the spoons analogy as I suffer from Fibromyalgia so I know to save my energy which is maybe why it makes me a bit crazy. But we will get the hang of it. Thank you and hugs to you all.
 

lgelb

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Likely there is a support group in Tampa. Look at the local ALSA and MDA chapter Web sites.
 
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