Husband Diagnosed in January 2015

[paulinej]

Hi, It's taken me a few months to get my head around this and register. My husband Steve was diagnosed January 2nd of this year. We had been told it was chronic Lymes, but then when things didn't improve the doubt started to set in for Steve, and we went to see a Neurologist, who tested Steve and told us it was ALS . We have gone for 2nd and 3rd opinions now and it is ALS. Wow what a strange start to a new year, you often think "what would you do if you were ever given a terminal diagnosis" I fell to pieces, Steve knew it was coming and was strong. We have our whole life in front of us, kids are both in College, are youngest Sam a freshman and Ben the oldest a Junior. The first time we had an empty home since our first year of marriage 21 years ago.It was the beginning of a brand new chapter in our marriage.
Steve is strong and positive 90 % of the time, he does get low, but finds the strength from somewhere to push through. He is till working, driving, doing everything he used to. He does get tired quicker, he has lost the fine motor skill in his right hand, he has Atrophy in his chest, arms, legs, and at some point i think the Neurologists said in his brain, but that was when i fell to bits. He has terrible fasciculation's all over his body, that make his stomach look like something out of the film "Alien" his cramps are bad in his legs, and pain has started in his neck.
It so hard to get used to this, its not fair, why us, why Steve. The future is unclear and cloudy, its hard to plan anything. I really just want to go back to the way we were, a happy young couple with the world at our feet, but then reality sets in and know that's all gone now. I am so strong for him, our boys, our friends, our family , that i think i forget about me, this is happening to me too, isn't it?
I stay off web md, i try not to google how long he has, i want to know but i don't want to know. I want a cure to come tomorrow.
I feel lost and just coming to work and watching everyone carry on when my world has fallen apart is tough.
i just need to know i am not alone.

 

[Atsugi]

Pauline, you are definitely not alone. This website's community is certainly the most supportive I've ever seen anywhere. A few of us (esp me) speak bluntly of factual data while most folks here are very emotionally in tune to what you are going through.

Did Steve serve in the armed forces? Veterans have special benefits that help with ALS.

At the top of this sub-forum there are several sticky posts that are helpful.

Don't try to guess how long he has. There's no reliable way to know. Just take each day as it comes, and find the high points to enjoy.

Don't forget about you. You must avoid burn out. In fact, there are times you let someone else care for Steve (and your household) while you take some respite.

And frankly, remember to prepare yourself for being the survivor. Get the last affairs in order. Find out his wishes for the last days: Does he want to be kept alive longer with feeding tube, breathing vent, etc?

Perhaps my bringing up these issues is not kind. But when my wife had ALS, I discovered that I could "handle it" much better if I was busy, seeking knowledge, taking care of business, and succeeding at making my wife's life better.

Post all your questions and concerns, and you'll never be alone here.

 

[paulinej]

Hi , Thanks for your response. Steve did not serve in the military, but the local CT chapter have been very helpful with good resources. We actually moved over here from the UK in 2007.
We are hoping for a slow progression, he started with symptoms in February 2014, and those symptoms seem to be the same from my point of view, i am sure Steve would disagree, as he can feel his body changing, he doesn't look any different to me and the fact that he is still working is good sign, Right?
We have talked quite frankly about finances and such, and it is scary, with 2 college tuition's to pay for and a new mortgage (2007) we are pretty screwed, but we will get through it, we can sell and downsize.
I hadn't even thought about the feeding tube, how naive of me, but will talk to him about it, i want to make life better for him, but i also encourage him to do things for himself too., while he can. We go away next week on vacation, cant really afford it, but as we now know life is certainly to short. So we are going to watch Cricket in the Caribbean something Steve has always wanted to do, not officially a bucket list not yet (say's Steve). I am glad i registered today, it's nice to talk to somebody. Thanks. and i am sorry for the loss of your wife.

 

[gooseberry]

It would be helpful to get in touch with your local als association chapter or mda chapter. They have loaner closets and respite resources, grants, etc that you may find useful. I would also look for an als center of excellence and see about an appointment. You can see all your needed healthcare providers in one day .It makes things simpler.

 

[Nuts]

Pauline, I'm sorry to welcome you here. I used to think that I had a charmed life--no great tragedies. It catches up to us, dosen't it? My husband was diagnosed January 30th of last year. I'm not a numbers person, but I don't think I'll ever forget that date. I'm married to the best man I've ever known. He has done so much for so many people... Well, you know the story; it seems our PALS are all wonderful people. What's that about?

Sorry...rambling. As Atsugi said, this is a wonderful place. I've learned more here than all other sources of information combined, and the support is unending. It is important to have people who really understand what you are experiencing.

How much should you read? That depends on you and will vary. There have been days that I just stayed logged on here, even if I didn't post. At other times I have to go away--take a break--what you read here is both helpful and overwhelming at times. No, you don't want to put life on hold, there's no point, but you do need to educate yourself enough that you can work to stay ahead of the disease. Modify your home if needed (ramps, accessible bathroom, accessible bedroom) and get equipment into place before you need it, and then try to just live. The stickies here give a great deal of information that will help you do this, and if you are a great nurse you are already ahead of the game!

Working will help your husband feel normal. Just encourage him to conserve his strength (there is no pushing through with ALS--he has only so much energy in a day and when it's gone, it's gone. And yes, you need to take care of you, also. That, of course, becomes easier said than done, but remember that if you don't take care of yourself you won't be able to take care of him.

This sucks. It just does. But we will be here for each other...

 

[cheerleader]

Dear Pauline, so, so sorry- but everyone here understands. A suggestion with the neck pain (which bothered my husband a great deal!). Be sure you have a good recliner to take the pressure off his neck when he is sitting, and encourage him to wear a cervical collar.
Your new chapter in your marriage can still be a good one. The time after diagnosis until the time he was freed from this monster was the best of our marriage, as each day was savored and not taken for granted. Our words were caring, loving words as we learned not to sweat the small stuff and to just love each other.
Atsugi is so right- take care of your affairs, and then put your energy into your time together. One of the hardest challenges, especially for men, is learning to prioritize. Steve will need to let go of unimportant tasks that zap his strength, and put his energy into what he enjoys, and into making memories for his family.
No, this isn't fair but the good think about knowing Steve's fate, is that you can make this time as rich and fulfilling as possible. Do take care of yourself, too - because you have to be his rock and will find yourself stretched very thin at times. But those of us who have walked this journey can vouch for the fact that you can do it, and your hubby and boys will find you are all closer because of it. Hugs are sent your way. Donna

 

[Augustmoon]

Hi Pauline
My dad was diagnosed with ALS in August 2014. I read everything I could. The ALS clinic had a library and gave me about 30 books- factual, memoirs- even children's books. I read them all- but Tuesdays With Morrie is my favorite.
Your story really struck me because I've been married 25 years, have 2 kids in college, and like you said- seems like a charmed life. But my father in law passed last July, an then my Dad got diagnosed, and then, strangely- some friends and acquaintances passed away suddenly. Life is uncertain, but we do have each day as a new start, a new chance each day to do what you can.
I really feel for you, and hope that you have the strength to make the best of each day. Keep posting- I'll look for your words.

 

[kingsaustin]

Hi Pauline. I'm so sorry to have to welcome you to this community but please know this is one of the best resources to tap for camaraderie and folks who know exactly what you are going through and will be going through. Your story sounds too familiar. My husband was originally diagnosed back in 2010 and after 4 additional professional opinions (each concurring with the preceded diagnosis) accepting the final one in 2011. At that point my husband and I were empty nesters with 30 yrs of marriage under our belt, three grown children and one grandchild. Our new chapter had just begun and we were excited with plans of moving, traveling, etc. Unfortunately, things didn't turn out like "we" planned. My sweet husband passed away on March 3rd. I share that with you because I keep wishing and wanting to have a redo. A redo in the sense that while I was there every step of the way as my husband's caregiver and loved him with all my heart I feel I could have done more. I would have taken heed on what others were advising having been there, done that, and accepted the help sooner, gotten the necessary equipment sooner, so we could have enjoyed more of our time without all the stress and pressure of the doctor visits, paperwork, and most importantly the menial tasks (in the sense that I wouldn't be so caught up in the having to do this, having to do) and enjoyed the precious moments our God was blessing us with.

As others have mentioned reach out to your local ALS Association - they are a blessing and a tremendous organization with the necessary resources and sources to help you through this journey.

 

[paulinej]

Wow, I am completely overwhelmed with all the responses. Everyone's advice is so heartfelt and real, that's it, it's really real! Friends and colleagues just don't seem to get it. You all do. Thanks

I did register with our local ALS Chapter in January, and they have been amazing. Steve and I went to the Hospital for Special Car in March, and met the ALS team, who all seemed great, the support is there, its just a matter of reaching out and taking it.

I will take all your advice and get things organized, spend quality time together, travel and enjoy what time we have. We have a good outlook on life, we are both positive people, and will continue to be. "Seize the day"

Thanks again

Pauline

 

[MaxEidswick]

like all the others, sorry to meet you here but welcome!

The next months will be an emotional roller coaster. Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.

Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick people, especially w/ respiratory problems.

Kind regards and warm welcome,
------

> I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )



Max - Friday, April 17, 2015 11:27:20 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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