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Canadian4Life

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Oct 30, 2009
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Friend was DX
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CA
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Ontario
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North Bay
:):)Eryk and I were just sitting around talking, and we were looking at all these threads and forums - they are great, but both of us think it could use something new. :)

This forum is full of places for caregivers, those diagnosed and the like. But how about this...a forum just for youth.:) There are many out there who have parents or family members that have ALS...or have a form of MND themselves. Why not give them a place they can call their own - where they can ask questions, talk to others who are going through the same things and benefit from the advice/lessons of senior (by that I mean adults! :) ) members of the board.

Eryk's youngest sister is almost 16...obviously the baby of the family. When he was younger it wasn't Mom and Dad that spoiled her rotten...it was him. He doted on her, and boy did she return that love. To say the least, they had/have a very special bond. Tara won't say it (I was a teenager once - and stubborn as Hell..:) ) but I could tell just by talking to her a little bit myself. She's scared; her and her big brother used to do so much together (heck, he would even take her to get her hair done - quite a feat considering he has an aversion to all things hairdresser! :lol:) and now it's a lot of work to get him through a day. Even at 15 she helps out; but she'll barely look at her brother, let alone talk to him. I know what part of it is - she feels left out, this much I know. All of her folks attention (or most of it) is focused on her brother - rightly or wrongly, it does not leave a lot of time for just her, since she is the only one of her sisters still living at home. A question...

She has a basketball (she's a VERY talented player) game next week. With all that has to be done for him, would it be possible to bring her big brother out to the game? I think it would mean a lot to her to have him there. Something in me says it's going to take a lot of planning, but it would be worth it.

Now for the best part...:wink: Her birthday is coming up (16...very important and all :) )soon - the time has been booked off from work and I have a present all ready for her. A Girls Day out...her and I and a couple of her friends (they're in on it already and so are her Mom and Dad....;) ) lunch, movie, shopping - whatever she likes I'll take care of it. Me and my big mouth - the credit card is gonna get a workout! :razz: She's a great kid - I've known her since she was very little.

I think it would be great if there was a place on here where she could come and air out all her worries; her hopes, her fears you name it. If it could be with others who understand, even better. :) Could we make that happen for her and other youth affected by ALS? :)

Penny
 
It is definitely a consideration that is worth looking at.

Bless you for being so loving and considerate. Sis could not ask for a better person in her life.

As far as taking him to the game, what seems to be the challenge? Does he have a wheelchair? I am now a quadriplegic, on a vent, and go everywhere. Having ALS. does not stop me from doing anything.
 
Wow Joel...:)

I always thought that vents were these big, bulky things that made it all but impossible to move without a lot of planning and help. Thanks for helping me understand that it isn't always the case. :) Eryk is on vent support; already started the research/education process and an RN friend of mine is going to teach me the basics of caring for someone on a vent. (Actually, she DOESN'T think I'm crazy unlike some people...:mrgreen:) I find that education is power; even though it's only been days already I feel more in control of things than I did before. I misunderstood because I saw him at home; he said that he did not get out a whole lot so I assumed it was the vent that kept him from doing so.

Now that you've explained it to me, I really do not see a problem with taking him to the game. He really wants to go; it isn't him who's afraid it's his parents. Even though he got the shot right off the bat they are worried about the flu and him getting it. Ergo, even though Eryk is a grown man (with a sound mind) his parents are very leery right now of taking him anywhere - and he has very little recourse if they say no. They aren't doing it to be jerks...they're concerned (justifiably) but at the same time he does deserve some good times and a life as he wants.:) If going to his baby sister's game is going to give him some happiness, then why not make it happen right?

How DO you manage to get around so much with both a wheelchair and a vent? Does it take a lot of planning, or do you pretty much just pack up and go wherever? Part of Tara's problem she told me is her hair trigger as far as Eryk is concerned. She'll defend him in a heart beat and has gotten into fights when people have become a little too free with running their mouths. Sisterly love....go figure. :) She wants him there, but doesn't want him to get hurt. No problem...he says he's ready for it this time. ;) However much she loves her brother, getting into fights at school these days is never a good idea; this is where I think having other youth to talk to who are in a similar situation would be a benefit. Transportation isn't a problem...his parents have had a modified van for quite some time now and the school is completely accessible, including elevators and this cool ground escalator (like in a large airport) that will take you straight to the gym. Would it be wise to get him there as early as possible, just for logistics sake?

Pretty soon, it's going to be Game Time! :grin: Already he is looking forward to it and all of us can't wait to see the look on her face when she sees him. Thanks Joel for the little bit of education; I appreciate it and look forward to talking to you and everyone here soon. :)

Penny
 
i think you have a good idea... my grand daughter is 14 and even i don't know what she thinks yet but , she is a tough girl a lot like her dad and i bet she thinks nothing can take down her daddy...that its only gonna be his arm...not sure of your relationship but, you think of others in a way i do not think of ...good friend you are...his parents need to look at it differently ..as let him live... germs are in and out of the house he already has a very bad disease that may cut his life Short he needs to go out every chance he can and enjoy what ever makes him happy..bless you
 
It takes no planning at all. We leave it less than 5 minutes of an unplanned outing.

For the family members benefit it might be helpful to get them to view my website. Living and Surving with ALS

It might help them.

You can also look at my blogs on this site. (when they are working again)

Ask any questions you want.
 
KeeKer Thanks so much for the link. My kids are 15 and 17 and I am so happy to find this for them
 
Penny, aren't you just soul glad that the Universe unfolds as it should-LOVE never ends :] I know that this is an old thread. I was gone on Holiday when you joined and had to go back and read your old posts so that I could understand your post this morning. Joel, what did you all decide about a spot for teens on the forum? It is such a valid point. The only downside that I can see is that it may make the Momma's and Daddy's feel not quite as free to really share what they feel due to the kids being on the same forum...Keeker, our son did join that site but has not been active on it that I am aware of...Is there anyone with a Psych background on the forum that has experience with how teens deal [or not] with a loved ones terminal diagnosed? Our teen [13] goes from wanting to share every minute with his Dad to complete and total emotional and physical distance. I think that is very normal for that age group. Some adults react in the same manner!
 
Joel, what did you all decide about a spot for teens on the forum?

Good question. I will look into it.
 
Al and I just talked and since the ALS Society of Canada has a good one we don't think we should duplicate.

The link is posted above.

If anyone has additional thoughts we welcome them.
 
Glad that I was able to help. I'm not able very often, because I don't have ALS and my brother only used aids for moving. He didn't have any pegs or bipaps.
indigosd, sounds like you have a very normal 13 year old. Mine are 15 and 18.
 
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