Status
Not open for further replies.

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
Hi,
Any of you who read my post on "Do I have ALS" know my husband got a diagnosis today of Bulbar onset early ALS (possible on the chart), slow progression. The doctor said she was "without a doubt sure" this was the correct diagnosis but we are free to get a second opinion.

We are both in shock, too much so right now to be in denial or anger even.

My question is for anyone's advice as to what I can do right now for him. He's not really talking about anything, just to say it doesn't seem real. I am getting together his file to send for a second opinion, more for something to do than any real hope. I find his voice harder to understand and will have to address this with our daughter but right now I'm numb.

Any suggestions as to what would help him? I can't begin to imagine what he is going through inside, thinking about himself and us. He knows I will do anything - I've told him, but anything concrete that those diagnosed found helpful from their spouses and families? We're not religious and I'm sure that would be a comfort.

Thank you in advance,
Perplexed (and likely to remain so for a long time)
 

BLPhill

Distinguished member
Joined
Oct 10, 2008
Messages
211
Reason
PALS
Diagnosis
09/2008
Country
US
State
WA
City
Tacoma
Hi Erica

I am very sorry for your husbands diagnosed. But I can tell you from experience that this forum is what has been the biggest help to me. People who know what it really is. Someone who is in the same boat and has every level of experience. The best advice that I could give as to what would help him is, introduce him here when he is ready. I can tell you, he will not feel so alone. For me, when I was DX, I felt very alone. Even though I have family around, there is nothing like someone already there. my thoughts are with you and your husband Erica.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Perplexed ... I'm so sorry to hear about your husband. In my own experience last May, it took me about 2 weeks to really begin to process it. I discouraged family from visiting, because I knew I would lose it when I saw people I loved. I really just needed space and time to sort things out in my mind. My husband was a blessing, because he didn't put pressure on me to "act" either happy or sad. Once I started functioning again, I found that I had a lot of anger. Fortunately I didn't direct it at my husband, but it was there.

You need to take care of yourself. This is at least as stressful on you as it is on him. My advice would be to just be there for him, and let him take the lead. If he wants to talk, great. If he doesn't, great. He'll let you know if/when he wants to talk.

Take care.
 

Flowerpot

Active member
Joined
Aug 28, 2008
Messages
80
Reason
CALS
Country
UK
State
Tyne and Wear
City
Newcastle upon Tyne
Hi Perplexed

I think it is a real " go with the flow" time - this may take you both time to absorb what you have been told.

These forums have been a huge pool of resource , comfort and advice for me. It is easy to get very anxious about what lies ahead but , as you will see , there are many different stories/situations that are going on in the ALS/MND world. I wish you all well.

Kind regards
Flowerpot
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
It will take a while for both of you to come to terms with the diagnosed.

Give you and your husband time to look at the various ALS forums to see how people are living with ALS. This may give you some hope. Patients Like Me forums will show you how long people have been living with ALS and what they are doing to make their lives better. The ALSTDI forums will be more research oriented. Of course, this site has members that are very supportive of one another.

My husband and I met with a very charming young man (38 yrs old) about 6 months after my husband was diagnosed. He had been diagnosed with ALS the same time as my husband. He had drop foot and was difficult to understand. His strength of spirit inspired us so, that we both felt that if HE could face this monster with such fortitude, so could we. We learned much about his hopes and dreams that day and about how he was facing reality head on. He has since used his talents and wisdom to forge a new path for those diagnosed with ALS that have no place to go when they choose to vent. What focus and courage this takes!

We now see each day as an opportunity to experience life as it has been handed to us. We still get angry and sad (understatement), but the kindness of strangers and neighbors has humbled us into being thankful for what we have here and now. We no longer lament what we have lost or regret the future that was in front of us is now lost. We just have a different life to live now. And I know that no matter how bad we may seem to have it - there is someone else worse off.

I'm thankful we have these forums to learn about others struggling with the same problems. It is a great release to vent about difficulties we encounter a long the way. I hope you will continue to join us on the journey, if it is confirmed your husband has ALS. I have learned a great deal from the fellow pALS and cALS here on these forums.
 

t34gib

Distinguished member
Joined
Jan 2, 2009
Messages
234
Diagnosis
12/2008
Country
US
State
FL
City
Fort Pierce
Perplexed, So sorry for the DX, I too have just received my diagnosed of bulbar palsy/probable ALS, slow progression (hopefully will stay that way). I have found that too many people want to try and make me feel better by telling me that maybe it won't be so bad, or maybe you won't get anything other than what you have. It doesn't help. I keep thinking, who do they think they are fooling, and then I realize that it is very hard on them also. They have to come to terms with what is most likely going to happen to my body. My husband said how lucky I am not to have all the rest like other people do. Is he listening to the Dr? Is he listening to me? No. Right now he can only see short term. He cannot even imagine that this is going to happen to me. He sees what he wants to believe. So it isn't just an adjustment for the person with the disease, it is an adjustment to everyone close to that person. I am calm about it as there is nothing I can do about it but accept it. But as I tell them, don't treat me any different. Don't talk to me like I am a child, I only sound like one learning to speak. Don't patronize or be condensending to me. I am not dying tomorrow so lets just be.
Take the time you and your family need. He will deal with it in his own way. It is a very frightening thing to face ones mortality face to face. For me it is not so much the dying part, it is the I will have to be taken care of part. I don't know how I will stand that. I have always been the one to take care of everyone. I am sure this plays heavy on your husbands mind right now. But in a few weeks you will both realize that we never know what the future holds for any of us. But you are both here today. And you will both be here tomorrow. Take it a day at a time and enjoy the moments. They are what is really important.
Blessing to you both,
NancyS
 

Valya

Distinguished member
Joined
Sep 28, 2008
Messages
127
Reason
Other
Country
US
State
TX
City
Austin
Hello Perplexed. So sorry for this happening to your family. My heart truly goes out to you. When my son was diagnoised, we were in total shock. Tbh, it still seems like a dream. In any case, what really helped us those first few months, was we told very few people, only a few family members. In fact, this site is the only place I told anyone for a long time. Those we did tell, we stressed no phone calls to avoid our son being upset by answering machine messages. We strove to maintain our family privacy and as normal a routine as possible.

The shock is now over for us. Looking back at August and that first horrible neurologist DX, pulling back within our family to handle our emotions before 'going public' was the best thing we could possibly have done for our son, our family and us as parents. That being said, you might be different and want/need to involve more friends and family. Do what seems comfortable for your own family.

As they say, Time is a great healer. There are natural grieving steps you all will need to go through, after which, you will feel sad but strong. You will be surprised that the things that seem too huge to sort through now, will become doable when the time comes.

And give yourselves a break and don't worry about what others think at this point. If you don't want to go to the obligatory family gathering, don't go, don't feel guilty. Go to the next one if you feel like it. If you're feeling too emotional for that big super bowl event, skip it and don't feel guilty, there's another super bowl next year. Take care of yourself and your own family. Others will understand.

My son still won't talk about the DX. I hope in Time, he will.

I wish you all good luck. I'll include you and your family in prayers.


Valya
 

Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
City
Smiths Falls
Sorry to hear of the diagnosed. My wife is in her 5th year now with Bulbar onset ALS. We have both been through the full battery of emotions so I understand how you are feeling. No lies here, times will be difficult. I recently read a book which I strongly recommend. "Tuesdays with Morrie" Its about a professor who develops ALS and how one of his students befriends him...anyway it is a great book and will help you understand some of the challanges with this disease. One thing is, please stay positive. It's amazing how PMA (positive mental attitude) helps one stay strong and able to cope, both for the patient and caregiver. This forum is also wonderfull and offers tons of support and understanding.
Take care,
Mark
 

stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
Dear Perplexed-
I am so sorry about your husband. I remember the absolute panic I felt when my husband was diagnosed 2 yrs ago. There was so much information thrown at us at once that we just couldn't take it all in. The information we did get was terrifying. My advice to you and your husband would be to just stay a few steps ahead of the game. Don't spend all of your time obsessing about what ALS will be like in the end. Everything happens a little bit at a time, so you just have to make adjustments along the way. He will wake up tomorrow morning much the same as he was today.

When you can't handle thinking or hearing about ALS anymore, just stop! Take a break from all of the literature, meetings, appointments, family and friends and do something fun. You are lucky to have each other!
-Stephie
 

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
Thanks, Stephanie

That was good advice, thank you. I think the body's defense of shock is a useful one - there's only so much you can deal with at a time. And a skunk decided to take up residence under the front porch. At one time I would have railed and started planning what to do come spring - now I file it under "appropriately unimportant" and move on.

Funny, I went to school in Europe with someone from Coon Rapids (I think it was that) - can't be that big, right?

All the best,
Erica (Perplexed)
 

Valya

Distinguished member
Joined
Sep 28, 2008
Messages
127
Reason
Other
Country
US
State
TX
City
Austin
I purchased 'Tuesdays with Morrie' from Audible. It was very well narrated by the author. The 'classes' were audio taped. Included at the end of the book, was a portion of an actual session between Morrie and his student, the book author. Hearing the actual voices takes you there in a way reading the book can't.
 

stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
Glad I could be of some (small) help! Coon Rapids is not huge- around 64,000, I think. I also grew up in the area, so maybe I know them!
 

Connie

Active member
Joined
Apr 1, 2008
Messages
60
Diagnosis
03/2008
Country
US
State
Ca
City
Granite Bay
I am so moved by what everyone has said to Erica and I totally agree. When my husband was first diagnosed after a long period of not knowing and after being reassured that it ws not ALS, we were horrified.
The forum has been and continues to be my salvation.
After living every day terrified about how the next day would be and bemoaning our fate, I realized that these are the cards we have been dealt and it is much more productive to try to live and enjoy each day and thank God that we have today.
It is very difficult but being positive eases the pain. I still have a hard time controlling my emotions and find myself frequently in tears so I have recently started taking antidepressants which I think are beginning to help.
My husband is the type of person who is thankful that he has had a good life and accepts that this is out of his control. The best thing I can do for him is to try and be "normal".
Take care of yourself and you will feel better with time.
 
Status
Not open for further replies.
Top