What to say when diagnosis is confirmed?

[LynnC]

My sister-in-law just received confirmation (second opinion) from Johns Hopkins that she has ALS. She was told that it is a more slow progressing kind, however she and our family are, nevertheless, devastated, especially since her upper nerve conduction study came back "normal," and we were holding out hope that she might have MMN instead (which I understand is treatable).

Any advice/suggestions on what to say that she might find helpful and supportive at such a difficult time? It is so hard when "bad things happen to good people," especially when there's so little you can do for them.

Thanks so much for your consideration. May God bless you all.

 

[Barbie]

there is not much you can say other than sorry. Be there for her, hug her, and cry with her.

What she needs is real help; just be there, treat her like always, make jokes, laugh, share your life. visit, do errands, help out around the house, give support to her caregivers. Don't be the relative that says what ever you need and then fades into the woodwork, Or worse, complain that the daily caregivers are doing a bad job but don't step up to help!

 

[skipper66]

I am sorry for your situation. I agree with everything Barbie says. You might encourage her to check with her local ALS clinic and see if she is elligible for a clinical trial. They are testing alot of things and maybe soon they will come up with something to help. Let her talk about things at her own pace. Do errands or fix meals would I'm sure be a great help. We are here for you. Kim

 

[Nighthawk]

@LynnC:

Try to encourage her and let her know that this diagnosis is not the end of the road.
There is life after the diagnosis.

I also was diagnosed with ALS at the same hospital your sister-in-law was diagnosed.
At the time of the diagnosis I felt my whole world around crashing down, I was depressed, angry, in shock, and was even asking myself this: "Why me, why me?".
I was in despair and, that's common for a newly diagnosed with this dreadful disease.

However, I decided I wasn't going to embitter whatever amount of time I had left on Earth just thinking about this.

I was told by someone from our Local Chapter of ALSA that there was always going to be a way for me to enjoy life no matter what corporal functions I could lose due to the disease.

I lost my voice...SOLUTION: They loaned me an iPad with applications that I could use to express what I wanted to say and be heard and understood.

I developed foot drop...SOLUTION: I started using a cane but kept walking.
Leg weakness continued progressing...SOLUTION: they loaned me a wheeled walker and I kept walking.

My legs weakened further...SOLUTION: I got a P.W.C. (*power wheelchair) and kept moving around.

Swallowing solid food became difficult...SOLUTION: Caregivers started to pureeing my food for easier swallowing.

And I could go on and on, couldn't I?

The thing is to never give up. There is life after diagnosis and can still be enjoyable as long as your PALS has the right equipment and Caregivers who love her.

But, you've got to stay ahead of the game (so to speak) as this disease is unpredictable and you may want to have whatever your PALS will be needing before she needs it.

So, my advice to you would be to contact your Local Chapter of ALS Association so they can send a representative to your home to assess what equipment your PALS is going to need so they can check if they have such equipment it in their "Loaner Closet" and loan it to you.


Good luck and, hang in there.

 

[LynnC]

You all are absolutely amazing with your insight and strength! Thank you so much for this guidance. I will follow all of it and, Carlos, share your words of wisdom with my sister-in-law and brother, as I know they will be very inspired by them.

Thank you again for your kindness in helping me help them. There certainly are many heros and heroines in this forum. Keep on keeping on!

Gratefully,
Lynn

 

[Nighthawk]

@LynnC:

I'm glad you found my last post helpful, thanks.

I look at life this way, there are kids in hospitals sick and dying right now, people all over the world who are starving and dying right now, the list goes on and on and on.

How can I feel sorry for myself (even if I die today)?

No sense to this world, just pure randomness in my humble opinion. I did or didn't do anything to get sick with this disease. It was just in our cards.

Everyday in life is a day to be thankful for if you can. Try to adapt the best you can and do what makes you happy each day you have left.

And, if I die and there turns out to be a Heaven or blissful place, hey, I'll wonder why I didn't starve myself long ago. If not, well then at least I will not be suffering anymore because I will not be aware of anything. Either way works for me (although I'd rather have the former).

I'm just here until the ride comes to a complete stop.


Best wishes.

 

[bemindful]

Thank you for sharing that Nighthawk. You are an inspiration.

 

[LynnC]

Yes, you definitely are an inspiration, Carlos/Nighthawk. Have you ever considered writing a book about your journey? I keep thinking how your insights and lived experience would provide much strength (and a healthy perspective) for many to benefit from. I really admire your strength and fortitude.

May God bless you!

~ Lynn

 

[minnesota]

It has been our experience that saying the words..."I am here for you--in any way you want" was super helpful. At first Diagnosis we didn't want any advice----however we rec'd well meaning advice all the time. For us, it would have been more helpful to hear "I have read some things and care about you so much, let me know if you want me to share" Your sister-in-law will no doubt want to be in charge of her own decisions and hearing too much at first is overwhelming--she's grieving! Also, saying "I'm so sorry I wish I had the words to say" was more helpful than trying to find words to say. This is an excellent forum with top notch people, as you've seen in the above posts! Hope you find what helps you and your family.

 

[skipper66]

Yes, we love Carlos on here. He is level-headed and helps keep things on track. He's great for this forum. Kim

 

[CasaHopkins]

I think it really doesn't matter what you say, as long as you don't say anything stupid because then it matters A LOT! What matters is your actions. Be the love you want her to receive. Be the sunny part of her cloudy days. Serve her needs selflessly as much as you can. Put effort into that. That's what she needs more than any words you might share with her.