Help hubby age 31 just diagnosed .. I'm so lost

[Angelosangel]

Oh I forgot to ask recently he has been twitching on his face at night, fatigued, and feels dizzy. He stated its like a head rush. Has anyone heard about or experienced this? Thank you again!

 

[fionae]

Angel, don't worry about how "exactly" to do the forum stuff...you're doing fine! I'm rather new here myself, and I feel like most of the time I don't really know what I'm doing as far as the forum goes, either.

The important thing is that you're here, and that you can share ANYTHING you want to, and ask ANY questions you need to...and anything else that may arise. Everyone here is wonderful and caring. There is so much knowledge here. I do not feel that I, myself, am one of the many with a lot of knowledge...again, my being rather new here. But I want you to know there is warmth and support here.

It sounds like to me you have been making some very important strides as far as medical arrangements and the like...I know there are many here who can speak so much more fully toward that than I.

This is such a horrendously awful stage to go through. I feel for you, your dear husband, and your family.
Sincerely, Laura.

 

[gooseberry]

If you have a camera you might consider taking some video of your husband with each of the kids. Its a great memory for all.

 

[LeprechaunSean]

It started in my right hand as well, and I was also originally diagnosed with carpal tunnel. I was actually scheduled for carpal tunnel release surgery and it was the hand surgeon who was the first person to mention ALS. Is your husband athletic by any chance?

 

[anderkling]

I've experience face twitches and fatigue. Fatigue is very much part of ALS. Twitches in different parts of the body come and go, and are often concentrated in one area. For me it's my left leg and foot, but I often have twitches elsewhere, too.
- Charlene

 

[affected]

Sorry to welcome you Angel.

What is his breathing like? Has it been checked?

Fatigue is a huge part of this disease, but not usually dizziness. However he may be feeling very stressed and it is affecting his blood pressure causing dizzy spells.

Keep talking and asking here, you will find your way around quickly and find lots of support

 

[dougieconnor]

I was diagnosed recently and for some reason I don't care. Life is about living for the moment. I could get hit by a bus tomorrow. So I'm living each day as it comes. I have to be positive or this will get me down. The thing I worry about is what other people think.
So my advice is to carry on family life enjoy each moment, make your partner laugh this helps me a lot

 

[Alana]

Sorry that your here, but this forum of people are so comforting and wise! I try and keep ahead of the game and read as much as possible and be prepared for the next step! And that's hard to do as we don't know what comes next as everyone is different. It's a shitty game!
We were diagnosed in May 2015, ( hubby is 54 and has ALS )so it's new to us! We thought carpal tunnel too and wished it had been but you have to deal with it one day at a time. I'm still walking around with a grey fog over my head as it's not gonna go away until we find a cure. That's how I feel as the wife and mother.

I hope you have the support of family and friends who can help you through this as it helps to talk about it and even be angry with it which helps release some held in emotions!
Your family is in my prayers. Your not alone. ALana

 

[Now stay at home dad]

I'm so grateful for Angelo's Angel because she is my Angel. Since being diagnosed with ALS on 9.29.15, she has been my support even while putting her own medical issues aside. It's so funny that without telling each other we both registered on this site. I came across her initial thread and thought, that sounds like me! My Angel is an amazing woman and I am so thankful to have her by my side through this tough time in my life, I know she will be by my side for eternity.

I agree with Dougie, I try not to think about how bad ALS is and I just try to stay positive, happy and spend as much time as I can with the ones I love.

Love you so much, Angel.

 

[Now stay at home dad]

I'm so grateful for Angelo's Angel because she is my Angel. Since being diagnosed with ALS on 9.29.15, she has been my support even while putting her own medical issues aside. It's so funny that without telling each other we both registered on this site. I came across her initial thread and thought, that sounds like me! My Angel is an amazing woman and I am so thankful to have her by my side through this tough time in my life, I know she will be by my side for eternity.

I agree with Dougie, I try not to think about how bad ALS is and I just try to stay positive, happy and spend as much time as I can with the ones I love.

Love you so much, Angel.

 

[cheerleader]

Angel, so glad you joined us. You still have many good memories to make and time to make them. Your loving family will surely bring you laughter and joy. You are a wise man to know you are still blessed and plan to be as happy and positive as you can. What a great role model for your little ones.
And just a word of advice when you start feeling like you are burdening her (which I think all PALS feel at some time.). It is a gift to her to be able to be there for you, to love you and care for you- as you would have for her if the situation was reversed. Even though she will be exhausted at times, it is never about you- just the disease. Returning her love and saying those appreciative words to her makes it all worthwhile. I would give anything to have had more time with my hubby- and we had 54 years of marriage. As we all say here, ALS sucks! Hugs. Donna

 

[gooseberry]

I am sorry you find yourselves here but so glad you will have support. There is a lot of knowledge and experience here. No question is too odd, too gross, etc. Someone can always help.

In the beginning it is so overwhelming. My best advice is to read the stickies that you will need when you can. The anticipatory planning , equipment, etc are very important. You can address things as you feel co.fortable and are able. There is so much helpful information in them. Some of it is hard to read in the beginning...just skip it for now. You should make contact with your local alsa chapter.

Lastly breathe. I have a now 13 year old with special needs. We try to live as normally as possible.

 

[fionae]

Dear "dad",

The story of you and your dear Angel touches me very deeply. I am glad that both of you are here with us. I know, that as always, everyone here will do what they can to be there for you both.

Truly,
Laura.

 

[madam419]

I understand your pain. My husband was diagnosed to weeks ago, we have a 5 yr old daughter and have been together for 18 years. I never thought that at 32 I would have to have so many conversations about life, death, and worse case scenarios. Keeping it together for both my daughter and my husband is possibly the hardest thing I have ever done. I cry myself to sleep most nights and as a SAHM my mind is constantly racing about what to do next and where to go from here. You and your family will be in my prayers.

madam419

 

[gooseberry]

Sleep is so important . If you aren't able to sleep and your anxiety is spiking , it is important to address it. See a counselor, or get some meds, speak with clergy but get help. The anxiety will overwhelm you with all that needs to be done. Getting help before it is out of control is crucial.