My b/f was just diagnosed...idk what to do

[DebraJean14]

Good Morning to all!
Thank you for your replies! I have not been on because my BF is in the anger stage of this process and It seems I am the enemy. He is mean. starts fights, is drinking way too much, refuses to take anti-depressants or get counseling. I did call his neuro about this because this is NOT my BF; yes, he has a hot temper, but NOT every second of everyday. The neuro explained to me that he sees this all the time with the sig others, and that I am the reminder of how life was good, what could have been and that he is leaving me..... I am trying to be strong and kind, but the BF words and actions are hurting me and bad... I am PRAYING and hoping this stage ends soon...


MY BF's neuro also stated to me that BF's ALs is moderate. I asked what that meant. Neuro said, "well if BF was fine 2 years ago, and now BF is moderate (in the middle of ALS process) then you can tell what the next two years will bring".... ANd yes, I am realizing that Neuro is NOT God, and that the experts and Columbia will prob have more info.


I still have alot of hope that it is BF injuries that are making him so miserable and that SOMETHING can be done....if not surgery then maybe injections into the pressure points, chiro, massage therapy, and more....

We did get into Columbia, finally, We go tomorrow 10/17..... I hear that they will exam him, go over all test results, maybe do another test or two and tell us their opinion, as to if they agree that is def ALS. OF course I am praying that it is NOT, but I hear that IF IT DEF IS, then the ALS experts will steer us to the ALS foundation and there will be a world of a little hope, as far as, counseling for him and me...., therapies, meds, and more.....


He has NOT been the 'same inside" since the last test, the EMG, on 9/11 and is just angry all the time, wants to do nothing, is always screaming and cursing. I miss my sweetheart, and hoping they can talk him into counseling..etc.. I pray....

 

[DebraJean14]

Don't jump to conclusions darling. I've had ALS for eight years and I can still talk eat and raise hell. Remember that the only thing about him that is changing are his muscles. His heart, soul, and character are all still there. Every single patient progresses differently. I know this is hard and I know this is frightening. We do understand your fear and terror, but just remember he still the same inside.

To hjlindley,

Ty so much for your encouraging words! I am sorry you are going through this! I pray that my BF can get the counseling that he needs to "fight" this. I feel that the mind is a powerful thing and once he is counseled, a positive attitude would help him and me! Stay strong! You are a light in this! xo

 

[DebraJean14]

OK we went and got a second opinion, at Columbia, and a top expert agrees; Greg, my BF DOES have ALS The doc believes he has "years" but there is alot he has to do to have those "years" I will be quiet for a couples of days soaking this in. Ty for your support; Again I am devastated.... </3

 

[DebraJean14]

Debra, wow so much you are trying to cope with at once.


I'm going to ask the mods to move your thread to the CALS section. The PALS do read their and participate, we love them doing that, but it is other CALS you probably need to rant to....

Hello "affected", the Dx was confirmed..MY, BF, Greg ,does have ALS

I am writing to you because you had said that My posts should be switched to the CALS boards.... so far, and please bare with me as I am new to "forums", I have not seen the post moved to Cals.... I still have been posting here. IS that OK?

thanks again, DebraJean14

 

[affected]

Hi Debra, they didn't move it, but don't worry!

I'm so sorry again that you have the diagnosis confirmed. Take your time now to let the shock pass through. I so remember the awful shock. Doesn't seem to matter if you already knew it was this, somehow the moment they say this is definite you feel that point of no return just went by.

The shock does settle, the fog lifts and you find your way forward again. We will support you.

 

[IluvNY]

Hi...so sorry to hear about your bf, 3 yrs ago i was in your situation and I too was devastated, confused and at a loss, it was the worst thing i ever experienced in my life and still is. You can get great comfort and advice here, it will take some time to digest and then you do what you have to do with your "new normal" life. It is a test of faith, strength, endurance, commitment and everything else. While you are taking care of him, don't forget to take care of you.

 

[MaxEidswick]

> It is a test of faith, strength, endurance, commitment and everything else. While you are taking care of him, don't forget to take care of you.

Ditto that!

 

[DebraJean14]

Hello,,


Well, for now, the crying has stopped, at least for tonight....I am def in denial.... I NOW know that docs have been suspecting this for about 14 months, I was made aware about 1 month ago... My BF, told me that. He says that since it was only a possibility, he did not want to worry me...as more docs were telling him, as time went on, He realized that this could really be ALS and told me at the beginning of Sept that they were going to begin testing. So he is actually calmer than me as he has had some time to worry..etc. I am in the shock/denial/outrage stages. and so confused... BF is in the anger stage, as I stated in another post, and we were having some hard times...I THINK, that may be ending...I sue hope so

The doc at Columbia said My BF has "years"; I guess there is no way to really know...The good thing that I found out was that he will be going closer to home to Stony Brook University Hospital, where they have a large ALS department. The columbia doc will also keep in touch; the columbia doc is calling Stonybrook to get the ball rolling... I have heard that there is counseling for him, me, us..etc. I welcome that...

IN two days we are heading out to Montauk point, NY to rest, regroup, hopefully find each other again and for 4 days , ONLY, not going to speak of ALS... when we get back, we are hoping to have heard from Stonybrook.

There is much more to write, but I can only handle pieces at a time, I will write more tomorrow.. Thank you all

OH and by the way, a friend sent me this article about a finding of a possible cause of ALS? It is dated from 2011. I will post the article, ONLY to see if any of you know if this possible "cause" finding has gone anywhere. Thank you all

[Mod note - check out the discussion going on on the thread "Cause of ALS is found..." in the General Discussion forum.]

 

[DebraJean14]

Hi Debra, they didn't move it, but don't worry!

I'm so sorry again that you have the diagnosis confirmed. Take your time now to let the shock pass through. I so remember the awful shock. Doesn't seem to matter if you already knew it was this, somehow the moment they say this is definite you feel that point of no return just went by.

The shock does settle, the fog lifts and you find your way forward again. We will support you.

Tillie

TY Tillie, as of right now, I feel like I am in "stuck"position....I cannot see that there will ever be a "forward" , again.... but I cannot wait to get there....

I know everyone with ALS is different, but what should I expect now, first? So far the neuro stated that he, MY BF, Greg should get himself healthy, as in stop drinking, smoking, start eating better, take anti-depressant, stop working...etc, apply for disability, go to physical therapy for his shoulder injuries, get massage therapy....that is the course we are on,,..but how do I know what to expect as in physical ailment(s) in this course of ALS?

 

[affected]

Debra are you being referred to attend an ALS clinic?

It would seem to me that is going to be a way for you to ask these questions on what is next to a team. I would think they would be doing swallow studies, breathing measurements, and the OT and PT there can start assessing what kind of aids may be needed first.

It's so hard to say progression will be 'x'. It is something you try to just stay a step ahead of as a CALS, and something that you have to evaluate and be ready to shift with all the time. You can only try to stay one step ahead because you aren't even sure what the next step will be let alone the next 5.

Believe me, I know how frustrating that is, how much you want to plan great care and be on top of everything. We do muddle on through though!

 

[ECpara]

So sorry Debra Jean! I understand your feelings right now. I promise it will get easier to accept, although every day brings a new experience. My husband and I started our ALS "journey" three years ago and he's still here! Progression has been slow, but never easy. I wanted to address some of your boyfriend's situations. The "rolling of the tongue" that the doctor saw - those were probably tongue fasciculations, my husband had those from the onset of his ALS (bulbar onset). His tongue eventually stopped functioning altogether which is why he can't speak or eat. The lobster claw hands - that is probably spasticity in his fingers, the muscles tighten and curl under. My husband has this in his toes, he wears a toe splint to help. Baclofin can also be prescribed to help with this. The mucous he is coughing is probably from the weakened diaphragm. My husband has this and he uses a cough assist machine and suction machine. It has really gotten bad lately, so these machines are a God send. He is a fighter, he can still drive, mow the lawn and golf in spite of all these obstacles! So don't think you or your boyfriend can't enjoy life anymore. Make the most of a bad situation. Attitude is everything! God bless you both!