Family Support

[dank]

My diagnosis was only 8 days ago, so this is still pretty fresh, but.......

My wonderful wife has been staying super positive to keep up my spirits (and so far it's been working) and we're both preoccupied with out 2 girls for much of the time anyway. But this morning she clearly was down about the situation.

This site has actually been very helpful for me, as has having a general positive outlook on life, etc. I was just wondering if anyone had any advice for anything that may help my wife deal with the diagnosis? Obviously we are all going to have our down days, and perhaps that all this is, but she said she just finds this "scary and confusing" and I guess I'm looking for a way to help her (and me to a degree) be less scared and confused.

Thanks,
Dan

 

[Tokahfang]

I think the best thing for her mentally is to spend a little time reading about the exploits of disabled people (all kinds of disabilities, type doesn't matter). Youtube the first wheelchair back flip or search for the Amputee Rap for her. If she has specific fears about how you guys will accomplish something, I guarantee there is an instructional video for that too, the crip community is prolific! If you pm me your email, I'll even mail you some pics of my more ridiculous moments... I'm particularly proud of humping me and my wheelchair down 7 flights of stairs to the bottom of a waterfall and back.

I prescribe this because able bodied people tend to be scared of progressive diseases like PLS because of a number of incorrect presumptions. They can't even usually voice these preconceived notions, but basically they think our life sucks and may not even be worth living. When they see a disabled kid on tv, they think "give money" not "hey, he might be an aerospace engineer one day". When they meet someone in a wheelchair pushing a cart in the store, they feel the need to congratulate them as if grocery shopping was a feat. They think Deaf people want to be cured, and freeze up around people with blind canes. In general, they just presume crips have very different lives from them.

So they way I settled my family was through my own personal independence, but if I had to do it again, I'd use videos and narratives from the community. Ultimately a person with a disability of any kind does the same junk as any other person in their culture: wake up, do bathroom stuff, prepare and eat food, care for kids, work, complain about working, go to church, play sports or video games, go to bed tired. We go to bed a bit more tired and that stuff takes longer and sometimes more equipment, but it's the same stuff. Once it's not "other" to her, she'll feel more comfortable.

I remember back in Dec 2005 I had just been in a wheelchair for a few months. We had just managed to push my 'chair through streets covered in snow to a local food joint with our friends and we were discussing going skiing the next winter. My husband-to-be looked at me very sadly and pronounced, "It is just so terrible that Beky can't ski with us." I giggled... full, honestly giggled. I couldn't help myself. I then proceeded to explain not just how people in wheelchairs ski, but the different between duo and mono sit skis, as well as ranting about how people missing limbs and blind people ski in world competition, and why in the world wouldn't I be able to? He's never said anything that dumb since.

 

[susanf]

I think it's still fresh for her. As Beky said it's what we can do, not can't.
Sorry you have to be here but it's an informative sight with wonderful, caring people.

 

[olly]

hi dank.
i know when i was first told i was devestated,you automatically think of the worst.
in reality pls is not so bad once you educate yourself and learn to adapt..............theres far worse neurological deseases including als.
pls is generally slow progressing over decades,many dont need chairs or scooters till many years into there progression.
look after yourself and keep as active as possible without over doing it .............life with pls is no piece of cake but compared to other things it a nice little cup cake.
take care,caroline

 

[epkennedy]

Welcome to the forum but so sorry you have to be here. I'm the wife of a PALS who was diagnosed March of last year. I, personally, was in denial for quite some time. I still go in and out of denial. I have a counselor who I was seeing for my anxiety so it was helpful to continue to see her once we learned about my husband.

Its only natural that you both will have down days. its a lot to take in and still very fresh news.

Keep coming back and encourage your wife to- even if its to read the many helpful/informative posts.

 

[EGBAR]

Hello Dank,
I am kind of new to this too. I was diagnosed in June. I notice that my attitude directly affects those around me. That being said just like you said we all have our days. This is a terrible thing to process. I face telling my parents next week and then 3 weeks from now my 25 year old daughter. Instead of having a diagnosis of 2 - 3 or who knows how many years, would it had been better to be killed in a car wreck the day you were diagnosed. I try to look at my situation like that. I still have a lot of quality time left with my family and loved ones. There will be time for frustation, sadness and grief in the future. We used to have a saying in the Army, I dont have to train to be misserable. I still have my moments dont get me wrong, but I am not going to let three letters dictate how I live my life with my family as long as I can.

 

[Zaphoon]

Welcome aboard, Dank!

Here's hoping you'll have a snail's pace progression!