Newly diagnosed. Hopelessness to acceptance?

[LizT]

Jeanie-
As the others have said, you do need to allow yourself to go thru the grieving. With every physical loss, there is a grieving period. The best advise I can give, is to allow yourself to feel it, but then let it go. You must try to find a way to accept this. It is easier on you if you find a way to do this. So you know, ALS can cause EL, which is Emotional Lability. It is described as inappropriate laughing or crying. But we've seen its not always so inappropriate, just easier accessed. If your doc hasnt prescribed an anti-depressant, please have him/her do so. Most PALS i know are on them. ANd give the anti-anxiety meds a try too.
As for you wondering what your purpose is- believe me, you have one. I promise. I just dont know you yet, so cannot tell you what your purpose is.
I met my PALS after he was completely paralyzed, no voice, on a ventilator and had a feeding tube. All he physically had left was his eye movement and some facial expressions. Now, aside from my daughter, he became the most important person in the whole world to me. He taught me patience, understanding, and acceptance. He loved me like Ive never been loved, and I him. We had AMAZING times together and made a million memories. I am better for knowing him.
So please- do not give up on yourself. You have meaning. You truly do.

 

[Poet Chistopher Robin]

I can no longer do my grapic design work

I used to be an online poet making a good living through advertising, I had to give that up too, just remember you’re not ever alone.

Today I type only with my left hand and one sole finger

 

[SCOTTDSC]

Jeannie,

I too, was diagnosed with ALS in March 2012. I'm trying to maintain a positive attitude but like you it's very difficult some days. I have found solace in different forums online. My disease also seems to be progressing faster than I can keep up with it. I live in a two-story home with both full baths on the second floor, so I need to be able to get up the steps. Unfortunately, the only way I can make it upstairs now is was somebody assisting me from behind and one from the front. I'm looking into having addition to my house so that I can have a first-floor master suite. I really don't know that I can make it to when the construct will be finished.

Anyways, the day after I was diagnosed with ALS I decided I was going to fight this disease with every fiber of my being. I'm going back to the U of M neurology clinic on May second. I'm also going for a second opinion and having Lyme disease tests done. I figure there is always hope for the future.

Scott

 

[Jennifer D]

Hi Jeanie,

So sorry you have to be here.......ALS is an awful disease, but there is life after such a diagnosis.

Take one day at a time, try not to get overwhelmed, don't let ALS take over your life and define who you are. I wish you the best of luck on this horrible journey and more importantly, IT IS NEVER TOO LATE TO FIND GOD! Some of us only look for him when we really need him.....maybe you're ready?

Keeping you in my GOOD thoughts and PRAYERS!

 

[Jeanieee]

Thank you all for your kind and helpful responses. It's a daily struggle to worwith through my feelings and changing physical symptoms. I hope to put into practice many of your suggestions.
Jeanieee

 

[housemouse]

Hi Jean, I'm a new member. I also have many questions. My husband was diagnosed about 18 mo.s ago. Jerry was always a very busy guy, he is 69. His systoms have got worse the last 6 to 8 mo.s ago. I also have experiened family fading away. I take care of him the best I can. Neither one on us actually belong to a Church but I have a strong Faith in God. I pray all the time. I'm new on this forum so I still have many questions. I mostly read other people's. It is hard but we so far are getting through this. It is very rough though. I hope things get better for you. Try to stay postive if you can. God Bless you Jean, Darlene