Re: Need your opinion please

[sonie]

Re: Need your opinion please

Hi everyone,
This is my first time posting so give me pointers if I do it wrong.I had a bad day today. My husband' s neurologist gave him an EMG and very carefully said he might have ALS. It is so strange because I have had Parkinson's disease for 11 years. I am in pretty good shape because I exercise a lot.
We have been quiet about the news of ALS because the doctor said she could be wrong and may not have it. She also said it was probable that he does.. More blood tests have been ordered.
My husband is pretty clueless about medicine, I am a retired RN with little experience with ALS. I am trying to keep my cool while we wait for the final diagnosis. I only know that people seem to die quickly .
I am at a loss about how I feel and what I am suppose to do. I have been planning that my husband would help me later on ,,,, if I need it. I will probably be busy helping him.
I feeel so sad about my husband. It really kills me seeing him this way. We have been married 49 years and have been avid sailors. We have a boat in our back yard so sailing was a big part of our lives.
Any suggestions on how to cope with this and help my dear husband?

 

[Lixen]

Re: Need your opinion please

Hi, I'm so sorry you've found yourself here. Of course I hope you won't need to hand around but if his diagnosis is indeed ALS you've found a wonderful place to come for support.

There are stickies posted at the top of each forum which should help with some of the planning & where to seek assistance. In the meantime if you have any specific questions just ask.

Please update after his next appointment. Wishing you the best. ‎

 

[GregK]

Re: Need your opinion please

Hi Sonie,

For being at a loss for what to do, you made a good choice by coming here.

There are a number of 'Sticky' topics at the top of the General Discussion forum that you should read.

Possibly start with the one titled https://www.alsforums.com/forum/gen...-ve-just-been-diagnosed-what-do-i-do-now.html

 

[scaredwifetx]

Re: Need your opinion please

Sonie, I am so sorry that you find yourself here. Once you have the diagnosis call the ALS Association in your area right away. They can send someone out to speak with you, get you in touch with support channels and bring s lot of helpful information. Any questions or concerns you have you can ask here. I would also suggest that you talk to your doctor. Taking good care of yourself is very important and one of the biggest lessons I have learned the hard way. Sadness and shock are more than expected in the beginning so support is very important. I will add you both to my prayers and hope you find different answers.

 

[mimi27]

Re: Need your opinion please

I am new here too. I am sorry and can't imagine what you are going through...well maybe a little. My dad was diagnosed last year but has suffered for a long time. Fortunately, his decline has been very slow until now. I have been reading through all the posts and crying but also feeling glad that there is a way to connect with so many people who are knowledgeable and understanding.

 

[soonerwife]

Re: Need your opinion please

So sorry you have found yourself here but glad you have found a great resource.

 

[frankb]

Re: Need your opinion please

welcome, but sorry you have to join us. ditto comments of GregK.