Spouse Diagnosed with ALS in Nov

[Sandy34691]

Evening all...this is the first time I've used a forum. My husband of 23 years has been diagnosed with ALS. Already I feel our lives turned up side down. I try to stay strong on the homefront, but then I turn into this complete emotional basketcase at work. How you cope? Where to get the strength to support your ailing family and hold it all together. I'm overwhelmed so much I feel like a padded room is my next step

 

[Zaphoon]

Sandy,

You asked how we cope. Well, in my house, its called complete denial!:mrgreen:

As far as becoming a basket case at work, in my book, that's allowed. Heck, I'd love to see my wife become a basket case over this just once! I'd get a hoot and a howl out of it. My case is different as I only have PLS. So, in retrospect, I guess there's not a whole lot to become a basket case over.

I am very sorry your husband has been diagnosed with ALS. One of the best things you can do as a caregiver is stay a step ahead of the progression and anticipate future needs. Talk openly with your husband about possible future needs like PEG tube, Bipap, Vent/Trach and so forth. Take a look at your home and see what may need to be done to make it more wheelchair friendly.

I try to cover my struggling ways best I can to keep my daughters and wife noticing any worsening in my condition. I'm also a very good actor when I want to be. I hope your husband is more truthful and up front with you as ALS isn't the same beast as PLS.

Warm regards and best of luck to you and your husband.

Zaphoon

 

[Sandy34691]

Thanks Zaphoon..The cold weather right now just seems to add to his physical problems. Its only been 6 weeks since the diagnosis, and I've read everything about it. I feel like I've crammed for some medical exam. The progression is happening so fast and I find myself so scrared ...so unprepared..will he want a DNR...he's always expressed not wanting a PEG tube..we have three doctor appts next week. and if its taking this much of a toll on me, I can't even begin to grasp what his emotional/mental state must be trying to accept all of this.
What is PLS? Tomorrow its the Home Health care visit, next week the swallow test, day after ALS comes into the home, next week after that the ALS check up. So many medications...so many medication changes...The pain I've seen him in..the frustration he experiencing not being able to do what he once could, having to become dependant on others....This is all far from what he is. I'm so overwhelmed and I'm so tired of crying but yet thats all I do.The bills, the lack to income...friggen jobs disability is taking their sweet time in getting their crap together....sorry ranting moment

 

[Twinsmom]

Dear Sandy,
I'm so sorry to hear about your husband, but welcome to an incredibly safe, supportive place! So...how to cope-cut yourself some slack and remember, while your husband is the one WITH ALS, you also must learn how to live with this disease. Arming yourself with as much information as possible will obviously help, because information is power, but you are probably on overload. If you have an ALS chapter in your community, find the case manager/care coordinator and they will also be able to provide you and your family with support.

I know my doctor suggested antidepressants for me to help me through, and it may be something for you to discuss with your doctor. This is an incredibly overwhelming, stressful time, and your body may not be producing enough serotonin to give you the ability to manage it all. I'm not a doctor, so please take it purely from a "living this same life" and I know it's helped me. Do you have a counselor or pastor? Someone to help you process all this and give you the tools to get through this.

This is a great place for support and encouragement, so rant all you need. You'll find several of us needing to do the same thing periodically.

If you want to email me privately, just send me a visitor message.

Peace,
Melody

 

[BethU]

Sandy ... this is the worst time, for both of you. Your lives HAVE been turned upside down, and there is just too much to understand and accept at first. I'm sure he is in the same state you are ... dazed, scared, grieving and just putting one foot in front of the other.

All those appointments and visits add to the load, but you will be picking up bits of information about resources and ways to handle all this. There is a community of amazing caregivers on this forum ... they will help carry you over the roughest patches, of which the period following the diagnosis is the roughest. I'm glad you found the forum.

Hang in there. Bless you for being there for your husband.

 

[Zaphoon]

Sandy,

ALS is bad news and it takes a while to take it all in. You both are still trying to get over the shock of it all. Given some time, the feeling of despair will leave and you will start to see that it is time for action. It helps to balance your focus. Too much attention to the negatives will wear you down.

PLS is a motor neuron disease that disrupts the upper motor neurons which causes weakness, stiffness, cramping, balance issues and in some cases, bulbar issues but limited or no muscle atrophy. People diagnosed with PLS (or suspected of having it) are watched for a 3-5 year period to see if the lower motor neurons become involved, in which case, the diagnosis is changed to ALS.

ALS is a motor neuron disease that attacks both upper and lower motor neurons. Its progression is faster than PLS (which can take decades) and more debilitating in nature.

I hope this helps. You will find some excellent company on this forum with folks that have gone through all that you are going through.

Zaphoon

 

[cris]

sandy34691...as the others have said this is a rough time. Things do get a little easier once you and you PALS veadjusted to this. It's quite a shack..huh?!

My hubby(PALS) didn't want any of the advanced things either..at first. He has since changed his mind. We will be getting a PEG next week. Like zaphoon said try to stay one step ahead. But don't get too far ahead either. You will know when the time comes for the next levels. Just take a deep breathe. Try to get some quiet time whenever it's possible.

Don't forget to come on here for any advice or just to vent. There are a lot of WONDERFUL people here! If you've got a ques no matter how small just put it on here and anyone w/ any ideas will come back to you.

So sorry you are going through this, but glad you found us. Our prayer are w/ you!...c

 

[shelleynshaggy]

Sandy -
After my husband's initial diagnosis I'd fall apart at work quite often. My coworkes were some of my biggest support (don't be afraid to share what's going on.) I also visted my PCP - after 3 visits I think I have found a good mix of depression & anxiety meds to control most of it. Plus I have a prescription for Xanax to use at those breakdown moments. Eventually hopefully you will get to the place where you are able to not let this disease run your everyday life. I still have the breakdowns but I tell myself I've cried enough tears for this today - we need to live our lives and make memories while we can and I am determined those memories will be good.

Shelley

 

[hopeful warrior]

Yes, my dear. It is horribly, overwhelmingly awful and devastating. My husband was in his late 40's when he was diagnosed. We are going into our fourth year with this disease.

This is a great place! Bookmark it and come back often. It helped me get through many dark nights.

I would also be glad to answer any questions you run into. If you want to send a private message, I'll get the note.

Take care of yourself and know you are not alone.
Jacque

 

[indigosd]

Sandy, everything that you are feeling is normal and will eventually become a dull throb instead of searing raw pain. It is horrible. If you read through posts-do a search on the search bar -you will quickly discover many answers to any question or concern that you have because we have all been there and done that! :] I haven't [yet] experienced the depression or anxiety. Probably has a lot to do with my Norwegian VIKING DNA and the fact that I have a troop of smoking Flying Monkey's! Web has been on Paxil since the diagnosed and we have increased the dosage to 20 mg every morning-it HELPS! We cope with laughter, black humor, prayer, telling the story of our sacred journey, advocating, letting go and simply living in the moments and extracting every drop of joy and bliss that we can squeeze out ot it. You will find the very best path for you and yours.

Practical advice from one CALS to another;
Purchase a collapsable file folder and keep everything to do with the ALS in it! Keep notes on the who, when, where-date and times. It is so easy to forget and this way you can easily keep track and make follow up contact with the multitude of organizations and government agencies that you will now have as a part of your daily life.

Accept that you have NO CONTROL over the ALS and yet, nurture bliss and hope in ways that soothe your heart and soul.

TELL the truth of your story and when someone tells you "NO", pull on your big girl panties and your combat boots and kick a--!

Empower and nurture YOURSELF so that you will be able to nurture your PALS. Make YOU also a priority!

Educate yourself so that you can protect your family.

Open your hands and your heart and just let go. And still, you must plan for the things that you do have control over like durable medical equipment, living will, home modifications, your joy of life list. You see, it is just life distilled and intensified with all of the yin and yang- positive negative!

Know that you are not on a solitary journey and we will not let you fall. Hugs, Kay Marie

 

[indigosd]

Kim, I just love you and your comments! DENIAL is not a river in Egypt lolol

 

[Marjorie R. Wilcox]

My two cents worth is that you just take one day at a time.
Don't let ALS be stamped across your head but just carry it along.
Make the most of every day. Have no regrets ...
and pay your nickel and take your chances.

Worry doesn't add one day to your life, but takes away.
Happiness is a state of mind. You make up your mind to BE happy
not inspite of, but besides what's going on.

You want everyone around you to have good memories of you.
If you fret and complain, and make things difficult for those you
are around, they won't want to keep coming around you.

It's tough but you have to force yourself at times to see the best in things.
When you get lemons, make lemonade....
or... think of the idea that you have reasons to be thankful, even if it's
just that you are loved or that you have a safe warm home. Many have nothing,
no one and no health.

 

[halfin]

Sandy, welcome to the forum. How is your husband doing, how is he progressing?

As far as the PEG tube, I cannot speak from experience but most people here who have had a PEG said it greatly increased their quality of life. It gave them more energy and left them feeling better. It freed them from long bouts of choking and coughing, and very long mealtimes as they eat slowly and carefully. They can complete a meal in 15 minutes instead of two hours.

As far as DNR, most PALS (People with ALS) do not want to go onto life support and ventilation, fewer than 10% do. So he would not be alone if that is what he decides. At the same time, those who do go onto life support generally are glad they did, so it is worth learning about the alternatives and discussing them. Before this point though there are portable external breathing assistance devices using a mask, called BIPAP, which can be of great help in extending life and keeping up energy and comfort.

It is a hard road but the diagnosis is not the end of life. Nobody can say for sure what your husband's future progression will be. Even if it is fast now, some people hit a plateau for a while and the progression slows down, so there is always hope. I know the time of diagnosis is a whirlwind of confusion. Keep in mind that in a way, ALS is a disease of the whole family, not just the one person. The impact on everyone else is almost as great or even worse in some ways. So give yourself a break and don't feel bad if you are not able to perform for a few weeks while you adjust to all this.

 

[Katie C]

hi Sandy. I'm pretty much going to just repeat what everyone else has said here... consider it West Coast syndrome! My husband was officially diagnosed last July, but that was after a battle of at least 2 years to get a diagnosis. (If Denial is a river in Egypt, Glen has a first class ticket on the barge!)

Because Glen has dementia to go with the ALS, most of the decision making is now falling on me. Early on we talked about PEG, trach, etc... he was adamantly against, and I will respect his wishes. The first couple of months that you are experiencing now are indeed insane! Try to just take a breath and not let the flood carry you away. As others have said, it will settle into a routine, depending on progression. You will not have all the diagnostic appointments, and you will get to a point where you decide yes, this appointment/treatment is helping, or no, it's not helping more than the stress is causing is hurting. Trust your instincts, and remember that you and your husband have a right to demand the best treatment available.. AND you have a right to say no, that's not right for us.

Be willing to ask for help. That's a tough one for me, but I'm learning. When people say let me know what I can do, write down their names. Make up a list of what needs to be done, and let those people look it over. And now is the time to make that bucket list, and start checking things off while you can!

Best of everything to you and your husband!

 

[indigosd]

Katie, do you think that barge can float us all to Peter's for a Holiday! Room for the fur babies? OMG! I soul admire and love you. xo