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Ronnie& sissy

Active member
Joined
Jan 12, 2014
Messages
62
Reason
CALS
Diagnosis
09/2012
Country
US
State
WV
City
Cameron
Please forgive me everyone, I've never done this before. So I'm not sure where to start... I guess I should first introduce myself, my name is Karen, but everyone calls me Sissy, my husbands name is Ronnie, and he was diagnosed with ALS in sept. 2012. He is 49, I am 37.
Ok, that's a start... I should also probably tell you that my hubby used to be a bull of a guy, so strong, grew up on a farm, and a pipelines for 31 years. ( to give u an idea, I could not touch my fingers from both hands around his forearms)
Even though it's only been a year and 4 months, things are taking its toll. We do have a caregiver that's comes 8-12, and a niece that comes after that until I get home from work. I too now work in the natural gas industry. (so blessed in that since). Anyway here is where we are now, walking is with a walker and someone behind him, legs braces on, with a cane and someone there, (again because he's stubborn) at the store or anything we do have a scooter. bathroom,shower and shaving, has become me, can't believe he put a razor in my hand! Lol jk Turning in bed is mine, breathing at night is the bi pap, still eating ok, but with in the past month voice going fast! Looking into banking his words. Depression is on the horizon, but I'm doing everything I can think of to keep that from happening. (For the both of us) we live in WV and it was -20 @ the beginning of the week, that's rough! Hope this breaks the ice ok, didn't want to get too deep my first post, because I could truly just start bawling at any givin min. Just nice to finally, maybe get some relieve talking to others in our situation. Look forward to meeting and sharing with you all. And hopefully Ronnie may get some things off his chest as well. Although he doesn't do the internet thing, I read him stuff from here all the time. So thank you for that as we'll, ( just took a little more guts to finally talk about it)
 
Sissy, my husband was officially diagnosed February 15, 2012. That was the day our world changed. I didn't join this forum until October 2013. I don't know what took me so long. This site has been a Godsend. There are so many caring, kind,compassionate and most importantly understanding CALS and PALS out there. Please know that you are not alone and we are here for you. This is the best support system you will ever need.
 
Sissy, I am glad that you found this forum, and sorry that you needed to. My husband was diagnosed July/12, and was also an extremely athletic man. It seems that so many of the PALS here were, which must make it all the more difficult for them to deal with this type of disease. There are definitely lists of ups and downs, but rarely the feeling that you are ahead of this disease. My husband has lost almost all function of his body from the neck down, but still has some thumb control. God has granted us some mercy as he has no difficulty with speech or swallowing, even though he uses a sip& puff ventilator to assist his breathing, as his diaphragm no longer functions.
I know that without this forum I would feel totally isolated, as I left my job to be his full time care giver. I am thankful that we are financially able for me to do that, as I was coming home from nursing exhausted and then started my shift with him, and not in a good mood. I believe God has been preparing me for this my whole life, as I have been a nurse for 33 years, am 5'9" and built like an amazon, and a bit of a loner so the long time away from people other than my husband isn't as bad as if I were a very social person. That is not to say that I don't enjoy being with people, I just find I have so much to do here. I am also very mechanically minded and that has come in handy when his motorized wheelchair broke, or needed maintenance. I also love to build things, so when we needed a ramp for our other house, I built it with my husband's supervision. So as you can see I have much to be thankful for.
But again, I am so very thankful for my ALS family and pray for them daily. I will add you to my prayers, and look forward to hearing about you and your husband's adventures.
Paulette
 
Sissy, I have been there. I totally understand. It is not easy by any means and it sounds like you are trying very hard and doing all you can.

Welcome to the forum, you will make many friends here who truly understand what you are going through.

Hang in there girl!
 
Sissy, Welcome to the forum. I did not have the courage to join until a couple of months ago. My husband was diagnosed 5/2000, so you can see it took me a long time to get things off of my chest. It has done me a world of good to see that I am not the only one that is going thru what many others are going thru.
My husband was also and outdoorsman, a man's man, etc and it has been extremely hard for him to go to having someone take care of every single thing for him. If you ever need to cry off line, please send me a message, I hope I can help.
Mary
 
Welcome sissy, I'm so sorry you have to join us, but I'm glad for your sake you didn't wait any longer. This place has so helped me many times and I'm one of the newer CALS to this disease, only diagnosed May last year.

My husband was also an incredibly active man, and I think it gave him a lot of his self identity, so being barely able to talk understandably, very poor swallow, almost no hand/arm use and can just barely walk short distances at home with walker and assistance is so difficult for him. It is also so difficult for me - watching my new husband, finally after all these years meeting such a wonderful man, waste away so quickly in front of my eyes.

We can all talk here and support each other, and both sides are good for all of us.

Tillie xx
 
Welcome to the club Sissy. I was a lurker for a long time before I started participating in the forum. ALS is really hard on both the PALS and their CALSes. This forum has helped me immensely in dealing with whatever ALS has thrown at us.
 
Sissy, If I might ask, what has been your hardest thing about being a CALS so far.
 
Oh boy, that's a tough question.... But , I would have to say definitely watching him constantly worry about what's to come. He has always been my rock, and to see the worry and sadness and uncertainty in his face just breaks my heart. Knowing that I can't FIX this eats at me daily.... I have found this disease is not only torture on the body, it is torture on the mind.
No matter how many times I say to him, we will get through this, together and just one day at a time, or God will take care of us, even though these things are all true, it doesn't change the fact.... And it doesn't erase the fear. That's the hardest....
We all know life will come to an end, but when you are actually told of how that will happen, that life is forever changed....
What about you all? What's the hardest for you?
 
Sissy-I'm with you. Watching a little bit of him die each day. I asked myself, which would be harder? Loosing him altogether of going through this nightmare? I can't imagine my life without him yet I know that day will come. Knowing that there is nothing I nor the doctors can do is the hardest.........when he was diagnosed, we were given the standard 3-5 years. After the first year, I thought OK we have 4 more years to find a cure. I no longer feel that way. Acceptance.
 
For me sissy the hardest part is so many parts!

But my PALS also has some FTD, so for me if I had to pin the very hardest, it is watching his personality being eaten way the same way I can see his body being eaten away. He is no longer really the man I married, the paranoia towards me and others, the anger, and the inability to really understand cause and effect is just so awful. Knowing it is the disease and not him however does help me a lot.

The support here however helps me enormously!
 
I think the hardest part for me has been all the emotional ups and downs. He will go through some good periods where it just seems like we are in sync. I see it as adjusting to where we are right now. Then something happens, where his health takes turn for the worse, i.e., he had a lung collapse and the doctor took me aside and said he would only live for a week or so, unless he had a tracheotomy. Then after a struggle, we got into the new
"swing of things" and settled in. Six months later, he was rushed to the hospital and the neurologist took me aside to talk about his "last wishes". Then he stabilized and came home… I think sometimes that after all of the ups and downs, that I have become emotionally numb. Mary
 
One of the hardest things for me is watching him struggle for a breath. His diaphragm is extremely weak and his pulmonary functions dropped from 75% to 37% in 3 months, and the last reading was in November. He has no involvement in his mouth or swallowing so he uses a sip & puff ventilator, when he sits in his chair. When He is on the toilet, in his sling he does not have his ventilator and he struggles for breath, so often asks for me to stand in front of him so he can rest his head on my chest. I feel each shallow breath and watch his neck and shoulder muscles working to help. It brings me back to when I lost my brother and we sat holding him, watching him take each breath drawing in with what little strength he had. But I remind myself that I could take the ventilator off of his chair, or park his chair close enough that he could use it. But it just brings the imminence of losing him too close.
 
I can't even pinpoint the hardest thing. I just know emotionally I was a wreck for the first year maybe two. Not being in control made everything extra hard.
 
hate als my son was a strong man of 37 when diagnosed , so you both can cry , scream rant and rave all will be understood and we will all still send hugs after you are done
 
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