a project work about ALS

[Postgirl]

Hello, I am Rachel, 16 years old, and I am making a project work about ALS, because I've met someone with ALS once, and it made a huge impact on me.
And I want to ask you a few questions, it's just 4 questions, so please respond,


-How do you cope with your disease?

-Do people have an other perspective of you, since you have ALS

-How is the ambulatory with your family since ALS was diagnosed? What are your aims /what are the targets you want to achieve despite your illness?

-What is the grip in your life that keeps you going on with your life?


Yours sincerely,
Rachel

 

[joelc]

Hi Rachel. Welcome to the forum.

I took the liberty and moved your post, creating a new thread in hopes it will be more visible for people to respond to.

You can gain a lot of insight about my life with ALS if you read my blogs. Click on my name and select Blog.

It might be a place to start. Let me know if you can't get there.

 

[Phil M]

1. Live for the moment.
2. Some people don't want to deal with the drama, or don't need any added sadness.
3. I just want to feel as normal as possible
4. Loved ones

 

[BarryG]

Rachel, I have a type of ALS called Bulbar Onset that involves my swallowing and speaking so for me and my family coping with the disease is all about communication and food. I cannot speak clearly enough for anyone to understand me so I have a bunch of electronic devices that speak for me and sometimes I just use pen and paper. I have a feeding tube which I use for most of my nutrition and hydration and I can still eat some things, mostly things like pudding, yogurt and apple sauce.

People who know me, know me better now because I have to take time to communicate. Because I can't really use the phone very well most of my interactions are either by email or face to face so I am finding that I am closer to everyone that matters to me. And they have to take time to talk to me too so everything is slowed down.

I have no real arm or leg issues yet (starting but not bad yet) so I am still able to go everywhere with my family and friends as long as no one wants to race. There was a song from the 70s by a Canadian band called Trooper called "We're Here For A Good Time (Not A Long Time)" and I've changed it to be "I'm Here for A Good Time AND A Long Time". That's my goal.

My grip on life is to be as useful as I can be for as long as I can. I have much yet to teach and much yet to learn.

Hope this answers your questions.

Barry