Just diagnosed

[coltarama]

Hi All -- I received my second opinion diagnosis yesterday -- the doctor is planning to perform another EMG and spinal tap, but said he thinks it's ALS (he's a specialist in the field). As the news was confirmed (again), my heart sunk. I'm 40 years old and have two little kids. I haven't stopped crying. My question -- how do you go on? How do you face something that will eventually take you away from those you love? I tried doing something mindless (looking on social media), but it didn't help. In fact, I thought in my head why the heck am I looking on this.

 

[Mtzu]

Hi Coltarama,

I'm so sorry to see this news. I'm new at this too. I won't lie, it's hard. That said, I've been surprised at the amazing response of loving support I've received from some of my friends. I feel very lucky in that respect. For myself, I focus on what can I do in the near term to connect with the important people in my life and spend quality time with them. I also find that my meditation practice seems to help too.

Additionally, being on this forum is invaluable. To be able to have frank conversations about what is going on is a tremendous aid. The people who've been around the forum longer will certainly have great insight.

Stay in touch,

Michael

 

[cheerleader]

Dear Coltarama, so sorry - but you still have lots of living yet to do. Spend your time making memories that even ALS cannot rob you of. Think the key to staying as upbeat as possible is plan ahead but don't dwell on what's ahead. Know that is very difficult but I can tell you this. The time after my husband's diagnosis were the sweetest years of our marriage because we made each day count, and tried not to clutter it with unimportant things. And almost everything is unimportant except loving your family and spending time with them. You have a wonderful support group who understand your despair but you will also gain courage by the spirit of the members here. Welcome. Donna

 

[coltarama]

I'm just so despondent. waiting for the other shoe to drop. Waiting for my body to give out. I know these emotions are part of the 'shock' faze and once I am able to come to terms, I can see that life isn't over. But, thinking of my little ones (4 and 7) makes me sick. Knowing all that I will miss in their lives.

 

[GregK]

Coltarama, the initial news is a terrible shock but as with all things you will move past this to a form of acceptance.
Life does go on and you will again find joy in being alive, and with friends and family.

 

[Nikki J]

I am sorry to welcome you. The shock is intense but you will get through it. There is life after diagnosis for sure and joy to be had. Wishing you a slow progression

 

[paulinej]

Hi, I am so sorry that you have been diagnosed with ALS. My Husband was in January of this year. I can just say, you have to try and stay positive, your mind has to be reeling with every emotion. how to tell people, how to tell the kids, family, colleagues. But somehow we did it, and now that he is 5 month in, there are times when we forget and we just carry on as the happy couple we are, if you think to much, your mind will unravel, and that's when it is all consuming. Reach out to your local ALS chapter, talk to people. It is easy to say "be positive", but i truly believe that Steve been positive has got us through the last 5 months. Of course we have our moments, who wouldn't, it's crap. The neurologist said to me, as we left after our third opinion" keep him positive, i believe that the mind has a lot to do with progression". Stay well, and I am truly sorry for you and your family x

 

[Brit007]

Hi All -- I received my second opinion diagnosis yesterday -- the doctor is planning to perform another EMG and spinal tap, but said he thinks it's ALS (he's a specialist in the field). As the news was confirmed (again), my heart sunk. I'm 40 years old and have two little kids. I haven't stopped crying. My question -- how do you go on? How do you face something that will eventually take you away from those you love? I tried doing something mindless (looking on social media), but it didn't help. In fact, I thought in my head why the heck am I looking on this.

Hello There..I am so sorry to hear this news about being diagnosed with ALS. You asked a very valid question ..How do I go on? I am not the patient, my sweet husband is. he was diagnosed with Bulbar ALS in Nov of 2011. We were in a place of shock and fear! All I know is since that day to today..WE WILL NOT ALLOW ALS TO CONSUME US! We will not give it the Power..My darling Warren is still alive, and THANK GOD, still has a good quality of life..ALS IS different for each person..Yet I ask you to create a future for yourself to LIVE INTO! YOU ARE ALIVE NOW! YOu have two small children and I pray a family that will give you support emotionally. I ask that you consider asking yourself about all the things you have wanted to do in this lifetime.

Sit with family or friends or counselors to see how you could create accomplishing one or two of those items.

Take loads of photo's with you and your children.

Create recordings of your voice and tell all the people iin your life how much you love them.

Plan a trip..plan to go to the Opera, a basketball game, a concert, a movie..from small things like a walk in the park with your dog..to big things think Orlando..

I am making these suggestions as I am convinced that since I have created for my husband A FUTURE TO LIVE INTO..He has since he was diagnosed 3 and half years ago..His ALS is BULBAR and we were told the agressive one..whatever that means..
So what do I have planned as of today for him:-

Sanibel Island West coast of FL..7 days of fun in the sun..beach 20 steps from the condo door. That is Memorial Week this May.

Wedding celebration with family and friends end of July ..4 days..

Lewis Black one of his fav comedians Oct of this year.

The musical "Beautiful" Christmas weekend.

I have no idea if he will attend all these events with me..I pray with my whole heart he does..YET I AM COMMITTED THAT HE WILL..and we both have a future to Live into this year..

My question to you is :- What will you creaate for you?

keeping you in my heart and in my prayers

 

[Nuts]

I'm sorry to welcome you to our little family. As others have said, it is an awful kick in the gut and your grief is warranted, but please don't let it rob you of the time you have available to you. The roller coaster never really stops, but it can slow down so that you can enjoy parts of the ride. Once you are able to collect yourself, consider that giving up or grieving non-stop will not stop your progression. Thinking about the future that you will not experience will do nothing but rob you of the present. Make memories for your children. Love them, laught, leave them messages (that's a brilliant idea). I cannot allow myself to feel about the future without falling part, so I try to remain as matter-of-fact about it as I can. When the wall cracks, the flood comes, but then I go on. Everyone here understands and we will be here for you. Vent as often as you need to--it helps.
Becky

 

[krnNdug]

Coltarama, sorry to meet you here. at cheerleader says, you have lots of living to do. I just got back from Washington DC where there were hundreds of pALS and CALS. Most have been where you are now, but the overall attitude was one of determination and caring for each other. This forum has been GREAT for me. I personally would suggest getting involved in a local MDA or ALSA support group. Our local chapter is just rolling out a program for kids of people with, or touched by ALS. There are lots of resources and the people here can help you very well.

Personally, I have decided to live life every day to the fullest and as positively as I can. I made a license plate frame saying ALS - Love Life, LIVE LIFE! It reminds me daily to take it one day at a time and enjoy what I have been blessed with - wife, kids, friends, faith, home etc.

Doug

 

[affected]

coltarama so sorry to welcome you here. The shock is profound, there is no doubt about that. You are so right to feel all you are feeling just now. 2 small children, I just can't imagine how you feel as all our children were adults when Chris was diagnosed. All I can say is that this is the worst time of shock and despair and you will find a way to get your head and heart around it to some degree. We will do all we can to help you do just that.

Keep posting how you are going and read the stickies at the top of the general discussion forum about newly diagnosed and then a bit later about anticipatory planning.

Don't try to read and research too much, I know I scared myself silly in the early days and had to really be careful. We want to know what will happen and yet we just want it all to stop and go away.

The neurologist said to me, as we left after our third opinion" keep him positive, i believe that the mind has a lot to do with progression".

I must say again, as this has been said before here, that there is no basis to saying this. Interesting the neurologist believes this, but didn't say there is any body of evidence to prove this.

Yes, being positive has a lot to do with retaining quality of life. IMHO some of the most amazing positive PALS have still experienced rapid progression. Some PALS who were in despair and had a terrible time emotionally have had slow progression.

What I most dislike about this statement is that it then brings in an element of guilt. Oh no I am progressing fast, it's my fault because I wasn't positive enough. TRASH.

IIWII and is best taken a day at a time, if that's too much just an hour at a time.

 

[chally]

you are gonna be going on a path you might never believed existed. and there are lots of us on it so stay connected to this site and let people know whats going on with you. together we can be of great support for each other. one day at a time! chally

 

[Green Queen]

There's nothing I can add that hasn't already been said...my heart goes out to you.
Acceptance means a new chapter in your lives...one that's not written yet.
Make it the best chapter ever.
God bless, you and your family are in my prayers.
Janelle x

 

[avnl]

To the already wonderful advice given, I would add: don't sweat the small stuff and involve your children as opposed to trying to spare them. Obviously age appropriate....but kids are amazingly perceptive and will know something is up.....
Anna

 

[BlueandGold]

Coltarama,

One thing that is important is to allow you and your loved one's to grieve. Everyone has their own way but you all need to allow yourselves time to absorb this and get to a point of acceptance. Once you do, you will refocus your attention on the things that are important. Allow yourself time to get your affairs in order as this too will allow you to enjoy the most important thing which is your family and friends.

It will take time but you can do this. Don't allow this disease to define you. My mantra is "I may have ALS but ALS doesn't have me!" This is a wonderful and invaluable site for information and support. Visit often and in time you will be able to share your experiences with others who are new to this disease. Helping others can be very therapeutic and will do your spirit good.

My very best to you and hug those little one's every time you think of it!

Vince