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Christopher Pike

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Joined
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4
Reason
PALS
Diagnosis
02/2011
Country
Riv
State
California
Hello Everyone,

Although I have had ALS over five years, I am a new member to this forum and would like to introduce myself.

I was diagnosed back in February 2011.

Physically, from the chin up, I am doing well. I can still speak – albeit softly – and eat which I am very grateful for. South of the chin, however, is a different story. I have partial use of one finger and that's about it.

I use Dragon – voice recognition software – to control my computer. With it, I can control my computer entirely with voice commands. I prefer Dragon over Windows Speech because it adapts to the user's speech pattern and can be streamlined and customized through programming. A very useful free app is Google Voice. With it, you can use your computer to make phone calls and send text messages.

I use an Invacare TDX SP power wheelchair with a sip and puff controller. I have a Roho air bladder seat cushion which I highly recommend. I believe it is the key piece that allows me to sit comfortably for extended periods of time. I am in my chair 24/7. It fully reclines and I doubles as my bed. The only time I am out of my wheelchair is when traveling, bathing and toileting. This set up works quite well. Best of all, it spares my wife the considerable work of transferring me to a bed and back each day.

We do not own a wheelchair van. Because of the cost, we elected a more economical option which has worked quite well. We use a Harmar wheelchair lift. We added air bladders to the rear springs to supplement the carrying capacity of our Siena van. We use a Milford Person Lift by AutoChair – a compact portable motorized lifting arm – to lift me out of my wheelchair and transfer me into the van.

We also use the Milford Person Lift in the home. It attaches to a mobile base which my wife uses to transfer me from my wheelchair to the shower chair for bathing and to suspend me over the commode for toileting. It is portable so we can take with us to use when traveling.

I hope this information can be of benefit to others.

Cheers
Dan
 

chally

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Joined
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Messages
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Reason
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Diagnosis
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Country
US
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wv.
Welcome to the forum Dan,
That's all good info from an experienced pals,thanks a lot!
Looking forward to more insight on dealing with this nightmare.
Chally
 

affected

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Diagnosis
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Country
OZ
State
home
Welcome Dan :)
 

KimT

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Extremely helpful member
Joined
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Messages
3,394
Reason
PALS
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08/2015
Country
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State
South
Hello Dan and welcome,

It sounds like you have a method that works great for you and your wife. Your post reminded me that I bought Dragon Pro last year. After I moved I forgot about it so thanks for mentioning it!

Thank you for sharing your life with us. This is a great forum. I hope you will like it here.
 

soonerwife

Very helpful member
Joined
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Messages
1,547
Reason
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Diagnosis
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Welcome Dan! Great info! Thanks for sharing!
 

NothingButLove

Distinguished member
Joined
Dec 25, 2016
Messages
101
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
CA
Greetings from Anaheim! (91+Imperial)

That's quite the informative first post! Glad to have you on the forum!

Rob
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
Hi Dan
Welcome!

Angie
 

DaChief

Distinguished member
Joined
Dec 6, 2016
Messages
191
Reason
PALS
Diagnosis
12/2016
Country
US
State
Florida
Glad you found us Dan. Thanks for the post.

Bruce
 

Christopher Pike

New member
Joined
Jul 30, 2017
Messages
4
Reason
PALS
Diagnosis
02/2011
Country
Riv
State
California
Hey Rob, were just about neighbors! We were just in your neighborhood not too long ago for some Japanese food.

Dan
 

NothingButLove

Distinguished member
Joined
Dec 25, 2016
Messages
101
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
CA
Dan,

There's some good Japanese restaurants in this area. Yagi Japanese Restaurant on Santa Ana Canyon is in walking distance of my house.

Do you go to a clinic? My wife goes to UCI ALS and NMD clinic.

Good meeting you Dan. Enjoy the weekend!

Rob
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,105
Reason
DX MND
Diagnosis
07/2014
Country
US
State
Colorado
Great to see you posting here. I enjoyed reading your story and look forward to learning from you as we go forward.

Steve
 

LizF

Active member
Joined
Jun 16, 2016
Messages
63
Reason
PALS
Diagnosis
06/2016
Country
CA
State
BC
Thank you for all the info in your post, Dan! I am not a frequent poster, but a daily reader, and have found the info & stories here to be helpful and uplifting.
Your screen handle must be a callback to Star Trek, right?
Liz
 
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