new ALS diagnosis - how to cope

[COlisa]

Just returned from a neurologist appt with my (43 year old) husband and he was given initial diagnosis of ALS. He has had MRI, but still need to do blood work & EMG is scheduled for next week. Symptoms are progressively slurred speech over the past 8 months, overly strong reflexes in one ankle, weakness in arm strength (according to Dr. at least. My husband disputes this part ).


When I pressed the Dr. for how sure he was that it is ALS: 90%.


This is fairly unexpected and devastating news. I'm not sure where to go with this. Just keep it together a day at a time until firm diagnosis? Then what? We have 2 kids ages 15 & 12. When do we tell them? How do we cope in our own heads in the meantime?

Any experiences anyone can share would help. We feel very alone at this point. Do not know where to turn, what to ask, how to handle it within the family.

 

[David]

Re: new diagnosis - how to cope

I will leave the support to the rest of our community, as I'm not someone that has been directly impacted by ALS.

I am sure there are quite a few members that will be able to shed light on your situation and can be very helpful.

I wanted to write to say you're not alone, keep your head up, and my prayers are with you.

 

[hope]

Re: new diagnosis - how to cope

COlisa, I understand how you feel. My husband was recently diagnosed with als, he as we speak is just returning from London after seeing dr.strong to confirm the diagnosis. It is truly devastating and my heart goes out to you. Like you I was terrified. It was september when we were told, since then I have had to find the strength to keep hope in our hearts. I had a million questions and there really was not alot of answers. I will say it is wonderful to have a site like this where we can support each other.

We were told and after that felt like we were out on a clothesline. There was no one there. The support was not the kind that I wanted, talking to a support group was not something we were ready for. We were in shock, scared, and thought what do we do. As the weeks passed we decided that the manual was not a good thing for us to read, the support group we were not ready for so we from that day on have been doing our way. Every day we live with hope in our hearts, we do the things we enjoy we hug each other, we say to each other every morning, today we fight the fight and we live one day at a time like they say. We do not think of the disease all the time we try and think of life and living. When things become harder in certain areas we together look for ways to do things in a different way that makes it easier for my husband. I love him with all my heart and it is painful to see this but I know that I will work hard in never giving up. Reach out and talk it helps. I know by my saying no to the manual right now and the groups is making my husband cope alot better. There will come a day when we will have to learn more but not now.

I think there should be groups but at different stages, I feel there should be a manual but one that is broken up in sections. It is to hard to cope with all this at one time. I keep laughter in our life, it is important.

hope's wife.

 

[A Daughters Love]

Re: new diagnosis - how to cope

Hi COlisa,
The initial shock is so great and completely overwhelming. All I can say is don't try to find to many answers at this point, just give yourself some time to digest all of this. I read the ALS Manual right away and I regret that. It was far to much at that time. I do hope that your family will experience what ours has, and that is an amazing appreciation for each other and every single day we have. I also don't feel that crying is a bad thing, it really does help to let it out. My Mom and I cryed together for a long time when she first found out. But slowly the crying and saddness got a little less day by day(unfortunatley it never completly goes away). God Bless you and your family, you are in my thoughts and prayers.

 

[wewillbeatthis]

Re: new diagnosis - how to cope

Hello,

Sorry that you are going through this.. However, if you have to go through this you have been blessed in finding this site. When my dad started his symptons about three years ago I was all over the net trying to figure out what it was. Doctors had no clue. Now this August he was told that it was ALS... The very next day I found this site. I find this to be my second family... I learn so much from everyone on this board.

This disease without a doubt will bring good days and bad days. Hey but then again so does life.

Some things that have helped me when we were waiting fot that final diagnosis. My mama said to me stop praying that it is MS or PLS cause one of those cases can be worse then the case of ALS that dad may have. Makes so much sense now but could not see it then...

My uncle indicated to me one day that it is horrible that he has to have this and I said yes it is and it is hard but he is tuff and we are going to beat this and deal with what it brings us just fine...

Come to this site when you are down and have your husband come as well. If he is not ready to then you ask the questions for him.....

Good Bless you and your family

Jen

 

[TBear]

Re: new diagnosis - how to cope

Hi COlisa... which I suspect is Colorado Lisa

Sorry that you are here. Most of the people who frequent this new and improved site were in the same situation as you are right now. Some have been around for several years. Right now this seems to have come at you from out of nowhere and there is a lot to digest. My suggestion is, as has been stated, to take one day at a time. Educate yourself by asking questions and try to find a sense of humour. Your kids should know when the diagnosis has been confirmed. It will give you a bit of time to sort it out for yourself.
Good Luck.

CHeers

T.

 

[Carol Deboer]

Re: new diagnosis - how to cope

Hi Lisa, I feel for you and your husband. It is such a shock and upset to be given the diagnosed of als. However, educate yourselves and go forward. Knowledge is power with this ailment. I know that your emotions will be all over the board over the next bit, but, hang in there. When you get your final diagnosed, then tell your children. They probably already know that something isn't quite right with their dad. My kids knew something was not right for a while before we told them as well. We have to be honest with them. That is something that just has to be told to them. Hiding the truth from them will not do anyone any good. They have to learn to deal with the changes and the pain that will come along with als. They will surprise you as to how well they will cope. Their energy and love will help you all out during the days to come. Our kids were 8, 15, and 18 when Henry was diagnosed. It was hard to tell them, but in the long run, they need to know. Hiding the truth from them will only burden you two more now more than ever. Hang in there. We will add your family to our prayer list, and we hope that you will keep your faith strong and hold on to each day.

Stay Strong, Carol

 

[TBear]

Re: new diagnosis - how to cope

Carol.... where is your bikini computer?

T.

 

[dana]

Re: new diagnosis - how to cope

Hello,
When my dad was told that he had a early signs of ALS in March of 2005, we were completely devestated. He then found out that he tested positive for Lymes disease in June of 2005. This gave us so much hope. My family totally ruled out the ALS diagnosis and focused on the Lymes. I think I was the only one who continued to research the ALS.

Over the last few months, dad progressively got worse. Two weeks ago he was admitted into the ICU in the hospital due to respitory failure from ALS. My family could not believe the ALS part of the diagnosis. They truely wanted to believe it was Lymes.

The reason I am telling you this is because most of my family did not research and educate themselves about this disease, and now that dad is in some of the final stages, they are trying to educate themselves like crazy. I am to blame too because I tried to protect my family, and did not share everything that I should have. I tried to sugar coat things. I am learning not to protect them as much and be completely upfront with what is to come. It is almost a relief being honest with what our future holds.

Learn as much as you can about what ALS is, and what can happen. Be ready to be overwhelmed, scared, and sad all at the same time, BUT do not give up hope either. Only God knows what your future holds. It is better to be prepared for what could happen but hope for the best. Good luck. This battle can be so difficult, but you can do it.
God bless you and your family,
Dana

 

[Jerry Story]

Re: new diagnosis - how to cope

Any experiences anyone can share would help. We feel very alone at this point. Do not know where to turn, what to ask, how to handle it within the family.

Read everything I wrote about MSG on this discussion website and do not touch MSG with a ten foot pole. And click on all the MSG websites that I posted.

 

[COlisa]

Re: new diagnosis - how to cope

I feel like my head is going to explode. My husband is inconsolable. I don't know how to get through the next day, hour, minute. It is all too much to comprehend.

 

[Granny]

Re: new diagnosis - how to cope

Dear COlisa,
I just wanted to tell you that all the members of this forum are thinking about you and care about you. I know it is so hard at first to get your head around the diagnosis.
Besides the awful diagnosis there is all this information thrown at you all at once. It is more that a person can take in.
As others will tell you also, it does get easier with time to accept the diagnosis and to take in and understand helpful information.
In the time being, you can just be there for each other, cry together and hold each other. And, come back to the forum whenever you want, there are so many people here who can give you good advice and a shoulder to cry on.
Love, prayers and hugs,
Leah

 

[rosales20]

Re: new diagnosis - how to cope

Religion will play a larger part in your life. Seek alternative medicine. You will not find much with traditioal western medicine. I have a 27 year old brother who was just diagnosed. Our lives, like yours, have been turned upside down. You and your kids will need help as well. I wish you and your family the best. Let me know if you need someone to talke to. My email is available in my profile.

Manuel

 

[jojo]

Re: new diagnosis - how to cope

Dear COlisa,

My heart reaches out to you and your family at this difficult time. As if it was yesterday, I remember the heartwrenching impact of my diagnosis on my family and friends. However, it got easier after I broke the news to them, as they rallied around me with their love and support.

I don't post very often on this forum, but I do "lurk" here a lot. I have learned much from these wise and giving posters, and take great comfort in being part of this community, knowing that if I need to reach out, someone will surely be there.

I was 42 when I was diagnosed in Sep 2000, with similar symptoms as your husband (I had been having those symptoms for 3 years prior to diagnosis). And I'm still around and in pretty good shape. It is very easy to jump to the worst case scenario, but please keep in mind that each case is different.

 

[braveheart]

Re: new diagnosis - how to cope

Hi Lisa, I have a 12 year old son that cried when he asked me if I was going to die, I guess beause I started to cry while telling him. There is a website that says to give them what they can handle at thier age and emotional maturity. There is info. re: telling kids, I don't have the web addresses. The ALS Society in your area should have info. or leads.
My son has become more loving despite his pre-adolescence and AD/HD.
My faith in God is the only reason I have survived the trials in my life. God bless you and your family as you grieve to enable you to move on and live each day as a blessing to one another.