My advice to those recently diagnosed

[PDaddy]

I was diagnosed’d 4/08 and now can’t walk or talk, swallow food well or use my hands. I use a headtracker on my pc and a Dynavox to speak. So, if you can or desire to:

Walk
Talk
Swim
Hike
Fish
Drive
Hold your loved ones
Eat
Drink
Play golf
Play tennis
Cook
Woodwork
Mow the lawn
Or almost anything else:


DO IT WHILE YOU CAN!

 

[Blackpool]

Good advice, I will try and do as many things as I can while I can. Thank you. PDaddy

 

[Our Mother]

Hi

My mother has ALS. It is getting hard on her.It is getting hard to understand her. But we try. She is laying alot. We try to get her up as often as we can. We put her in the car lay her back alittle and of we go. She enjoy that. I just asked her today if she wanted to go for a ride this weekend. She put a smile on her face. So that was a yes. Thank you for advice, We will get her up as often as she likes.

 

[Mahealani]

Ditto! Great advice!

I'm right behind you - diagnosed 10/08. My speech is going, can't walk but can stand with help, right hand gone, left hand weak and going quickly.

PDaddy - just curious are you using an electric chair? I've been fitted but it hasn't arrived yet and as days go by I wonder how much use I will actually get from it.

Mahea

 

[JAKE]

That would be a power chair. An electric chair is what they use to execute people. HaHa, I knew what you meant, just had to say that.

 

[dldred]

Good one Jake, thanks for giving me a laugh tonight.

Dana

 

[Mahealani]

OK - I stand corrected. I meant a "power wheelchair".

 

[PDaddy]

Yeah, I have a power wh, but often the electric chair sounds like a good idea

Ditto! Great advice!

I'm right behind you - diagnosed 10/08. My speech is going, can't walk but can stand with help, right hand gone, left hand weak and going quickly.

PDaddy - just curious are you using an electric chair? I've been fitted but it hasn't arrived yet and as days go by I wonder how much use I will actually get from it.

Mahea

 

[Our Mother]

All of you are just amazing. There is some times I just want to break down a cry. When I see her with her head in between her legs. Trying to get that mucus up. ( she has to get it up so far so we can get it with the suction.) Her left hand is the one that does not move well.And her right is getting that way. Believe it or not She is left handed. But we still some how make her laugh. And you all are making that happen alot easier. Thank you all.

 

[Mahealani]

PDaddy - how often do use the "power wheelchair"? Daily? or not?

 

[nishant]

Great advice, I would add video games to list as well. I would also recommend visiting that place you always wanted to.

 

[laurel]

PDaddy,
I am very sorry to read how bad things are for you. Reading your posting gave me a jolt as I didn't know things were progressing so fast. It makes me sad to read this.
Laurel

 

[hopingforcure]

P.
I am also sad to hear how fast this monster is progressing for you. I have loved your sense of humor since your first post on this forum. I am all full of joy that you still have that part of you, ALS cannot have that, we just will not allow it. I was glad to see you post today, you are always a welcome sight for me on this forum.

 

[Zaphoon]

I loved playing baseball, softball and football. Now, it can't even be said that I throw like a girl (no offense to the girlies). I run like a complete spaz, too, which adds a comedic effect to my playing any sport.

The sidelines are under rated anyway!

Zaphoon

 

[PDaddy]

All day long with no problems

PDaddy - how often do use the "power wheelchair"? Daily? or not?