Husband diagnosed with ALS. Scared lonely and don't know what to do next

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Benals

Member
Joined
May 23, 2017
Messages
16
Reason
Loved one DX
Country
US
State
Maryland
City
Lavale
My husband was diagnosed with ALS last August. I had two people to support me but one died in April and one in May. My children refuses to talk to me about it. I feel as if I am fighting this monster alone ( except I do have God who is always there.
 
Welcome, Maryland, though sorry that you find yourself here. Can you tell us more about your situation? Are these your husband's kids as well?

Best,
Laurie
 
Welcome! Sorry to hear about your husbands dx. That's a lot of loss for one person to have to endure along with fighting the monster. You will never be alone on this forum. You have found a great place for support.
 
These are our children together one 35 one 40. The are just having trouble accepting it. We have 3 granddaughters whom we haven't told yet. We go to that University of West Virginia to see the doctor. She suggested we go into the WVU/ALS Clinic. Two months ago he said he wasn't ready to do this but last week he said when we go back in July he is going to tell her he is ready. Does this mean he is feeling other symptoms? I don't know because he won't talk about it. When I called a contractor to see if my doors could be widened he said no. I try to tell my husband this he said "You Can Handle It". I know I am capable but I want some input form others. Sorry to complain but I have almost reached bottom and we haven't reached the hard part yet. Thank You For Listening
 
You should go to the ALS clinic and they can help. I've found the social workers to be of great help to me in dealing with this disease and what it does to the PALS. Is he a veteran?

Louise
 
This is a terrible diagnosis, but you have found a very supportive group of people. Please tell us about your husbands current condition, so that we can know how best to support you now.

If your doors cannot be widened, look at offset hinges. They add several inches. For internal does, you might also be able to use sliding barn door style doors. If that contractor can't widen your outside entrance, find another.

It is not uncommon for pals to avoid accepting and dealing
With this diagnosis. We cals then must do the planning in order to stay ahead of things.

By all means, get to an als clinic. The support and information you will receive will be invaluable.

Becky
 
Hi BENALS - so sorry to have to welcome you here. As others have said you have come to the right place. You will always be accepted and never have to apologize for complaining. This disease is nasty to the core. We all understand.

Also as others have said, go to clinic. You will get tons of great info and help there as well. It can be a longish day, but well worth it in the end.

I'm sorry for the losses you've had to endure during this last year on top of the ALS.

Hang in there we are here for you.

Hugs,

Sue
 
Benals,
Do you want me to add you and your husband to my prayer list?
We are here to support you in any way possible.
 
I would truly appreciate it We are Christians and we know God is in control of this situation but I am still human. I just need to know the next step to take. It seems like everything I try a get a door slammed in my face. We are to go back to WVU in July and his doctor told me she would discuss some things with us. Pray it is the answers I need. We are still holding out hope for a COMPLETE MIRACLE Thank You For Being There
 
My husband's hands and feet are turning white from the tips backwards I's this another sign?
 
Does your husband have any other medical issues besides ALS? Is he overweight or diabetic?

Can he still walk without assistance?

Sometimes, just as in people without ALS, there are other medical issues that need attention. I have bad acid reflux and a heart arrhythmia, along with some other minor medical issues. It just makes dealing with ALS that much harder.

I'm going to suggest counseling for you and for your husband, if he agrees (he might not.) I went to a guy who is an ordained Methodist minister with a PhD in clinical psychology. He addressed my emotional needs, physical needs, and spiritual needs. We communicated via Facetime with our iPads and that was very convenient for me since I lived alone (until last October.)

The only problem I have with my feet is that they have lost fat and it hurts to walk barefoot. My toes are starting to curl so I make sure I stretch them several times a day.

I hope he goes to an ALS Clinic because they can address multiple issues. It's also important to have local doctors, especially a primary care who can coordinate all his local medical needs, especially in the future.

You are both on my prayer list.
 
Benals, Family, even children, have a difficult time accepting this diagnosis. I would kindly suggest you build a support network now.

Does your church have a volunteer group? Could they visit your husband so you can have a few hours to yourself? Could they mow your lawn, trim trees, t
Weed whack? Any household projects they could help with? Do you have o track or shipt in your area? This is a grocery delivery service. Can you afford someone to clean every couple of weeks or once a month? How can your kids help? Can they cook some meals so you dont have to? Can they talk to insurance companies or make doctor appointments?

Basically anything you can get help with, take it. It is a long, hard road.
 
First, as the ALS Association says, "Get thee to a clinic."

Next, don't hesitate to ask anyone and everyone you know for help, and if anyone ever offers any kind of help, DO NOT SAY NO. We used the site "lotsahelpinghands" to schedule visits by helpers. There are other similar programs. The sooner you do this, the better.

The more time the children spend at your home, the sooner reality will set in for them.

Finally, everything you're feeling is normal. Being overwhelmed will become your new "normal." Yet somehow we all manage, so keep your chin up!
 
Hello. This is my first day on the forum. My husband was also diagnosed last August. We have been dealing with all kinds of stress just accepting the disease and the realization that many "friends" have forgotten him. We attend an MDA clinic an hour from home every 3 months and it has helped us both. We talk to a physical and occupational therapist almost every time, social worker and dietician. It's good to have relationships with these people now so they know the PALS as well as the caregiver/spouse. It was difficult for many family members to accept...there was a lot of "have you tried this" and "is it Lyme disease?" They are coming around. When they see we have accepted it and are being proactive they do the same. Thinking of you. Take care!
 
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