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pfd161

New member
Joined
Dec 31, 2018
Messages
7
Reason
CALS
Diagnosis
01/2019
Country
US
State
ME
My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation.

The first few days were spent crying/ holding her. She now seems to be in the "Let's not talk about it" stage. I think this is her way of dealing with it...deep down she knows her diagnosis but if she doesn't talk about it it seems less real?

Her Doctor, Sabrina Paganoni, has an impressive resume, Both a Phd and an MD, Clinical researcher, has been involved in many ALS trials. We discussed nothing at the appointment, basically just confirming the diagnosis and getting her history, getting her started on Riluzole, and seeking approval for the IV medication. I'm guessing she could tell Sharon was overwhelmed and terrified, and that more info would just not be remembered. Probably a good way to go I guess..

I got her a rollator walker, mostly because she is terrified walking right now, her left ankle is still in a boot from a fall and ankle fracture. It's mostly healed and she is starting to walk on it some.

I guess I don't know what to do next? We have an appointment in a month at the clinic. She will see the NP this visit. Everyone has been fantastic at offering help...we will see who comes through for us.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,227
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
The first few weeks are extra tough. One thing that is likely extra impirtant for you as an unmarried couple is getting some paperwork in place so you can always get information from her medical providers and speak for her if she can’t. This of course assumes that is her wish. You may already have this.

Getting paperwork in place early is important anyway but she has to be on board.

You can be thinking and researching now so that when she is ready you will have resources to offer her.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
517
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
The ALS Society will probably get in touch with you and they should be very helpful, you should look at a manual wheelchair.as they are much better for shopping and outdoor trips. My neurologist said when I first met hi that some people go on for decades, and we have people here that prove that point.
Al
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
575
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Dr Paganoni is the one who confirmed my diagnosis as a second opinion, shes wonderful. After diagnosis I didn't want to talk about it either, definitely a case of trying to pretend it's not real in some way. Don't push her.. this kind of self-protective reaction is really needed for a time, or it was for me. Just be there for her.

Getting in touch with ALSA is good, but CCALS is the best, they will drop everything for you when you have a need. You can go on ccals dot org to get contact info.

Dr Paganoni is the PI for a clinical drug study I'm participating in called amx0035 or amylyx. I'm currently in the open label phase, meaning I know I'm getting the real drug, and I do believe it's helping me. I'd encourage your PALS to look into clinical trials that she thinks might benefit her. Sadly the window for eligibility is only open for a short time for most drug studies (usually 2 years from symptom onset).

When she's ready encourage her to come here too. It's a great safe space and resource.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,796
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Denial is a valid coping mechanism, at least for a while. I have found that denial helps me not be as overwhelmed with fear and let’s me enjoy things a little more. It’s a mind game.

Stages of grief include denial, anger, bargaining, sadness, and acceptance.

I find they don’t necessarily go in order. For me, I would vacillate among these stages almost daily. Now at over a year into this journey, I notice less denial and more sadness and acceptance.

With ALS being a progressive disease, there’s progressive loss of function throughout the course. So I think people also go through a version of these stages with each functional loss, as well as for the disease as a whole.

And my spouse/ CALS goes through these stages too. Everyone who knows you and Sharon will go through their own processing.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,195
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
There are many groups on FB, some for women only and some for PALS only. When she is ready, maybe this can be an outlet. Some PALS and CALS don't like posting on the same forum and FB has other specialty forums dealing with ALS.

One of our former moderators and PALS, Greg, put together a manual that is helpful. I'm going to have it messaged to youGreg is still very active in the ALS community and posts on FB every day in various groups.

I think a financial plan and a living plan are first in order. Decisions like work hours, places she wants to go, and things she and you want to accomplish may help because it's something to look forward to.

The think I also recommend is to attend to general health issues early. Dental appointments, eye appointments, and things such as these become harder as we progress.
 
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lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,252
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
As others have said, she has to go at her own pace, might find her own space on line, and you yours, and there will be stops and starts. There is no single moment of acceptance or moving forward.

Best,
Laurie
 

ThroughThatValley

Active member
Joined
Jun 23, 2017
Messages
35
Reason
PALS
Country
FRA
State
France
Very sorry you had to find us. These first weeks are hell on earth. Everything one belived in -projects, health, work, etc. goes down the drainer and the mind can't ajust to that cruel awakening. It will get better, that I can assure. Help her find new daily routines. I found routines helped and had somehow a soothing action. The most fearful moment for me was in the morning when waking up and realizing all that was not just a bad dream but real as rock. So instead of staying paralysed with dread and shock in bed I would go out and take a cup of coffee in the next street Café. Amongst these strange folks of the early morning, drinking their café, commenting on the news I found a certain relief. Then I had a little walk around the Block, at my own pace, listening to a podcast. It did me good and helped me carve through these horribles days of reckoning that follow diagnosis. Lots of good vibes comming way and you GF's way.
Oh and stay both away from the booze, I now it seems ti help in the fisrt stage but will backfire rapidly. However benzos and zoplicone worked wonders as they damped down my twiching, relaxés my sore muscles and provided sleep, an activity that was had been litteraly destroyer but the state of horror I was in.
 
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Doglady

Active member
Joined
Aug 6, 2018
Messages
64
Reason
PALS
Diagnosis
04/2018
Country
US
State
Minnesota
Welcome and so sorry for the reason that brings you here. My ideas for you right now are to try take care of that injured ankle and avoid falls. Her ankle will be weak and prone to additional injuries. You can learn a lot on the website for your local ALS association whenever you and she are in the right frame of mind to check it out (and here of course, too). Glad she and you have good support in your life.
 
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