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Lilacs53

Distinguished member
Joined
Oct 13, 2014
Messages
107
Reason
PALS
Diagnosis
09/2014
Country
US
State
AZ
City
Buckeye
Hi everyone,

It's been a while since I've checked in. We had computer problems and had stuff going on with our family that we required our full attention, but all of it seems to be taken care of for now.

I hope everyone is doing all right here or as best as can be.

The disease has spread more in my body. It has moved into my limbs and my face, but I still have full use of them, except for my right foot and leg, which I'm still wearing a brace for and using my Walker. However my walking is limited to just a few minutes now because my back doesn't have the strength to hold me up as long anymore, and I have a hard time getting into our van now without the assistance of my husband Gerard. We started a go fund me account to help defray the cost of a conversion van and for other medical equipment. So far we were able to raise enough money for a lift chair and for a new brace, which I really can't wear so some adjustments need to be done to it. We are looking into getting a grant for the conversion van. Have any of you gone this route?

I have also been trying to record my voice on model talker, but so far it's a no go. It calibrates my voice just fine, but for some reason it's not recording the sentences...can't figured it out.

Every day is a struggle, but we are remaining in high spirits and hoping that a cure for ALS will come forth.

Some of you might remember that our oldest son was dating a young lady with huntinton's (SP) disease. They did brake up and it was a mutual decision. They still remain friends however so that is good.

Our daughter has graduated from college and has been accepted to another college to finish her education. She's going to become a professor of political science. We are very proud of her.

While I guess that's enough on me, how are you all doing?
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,200
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Welcome back. Missed you. Sorry to see you're progressing, but I'm glad to hear the go fund me account seems to be helping.

Who would you get the van grant from? I only know that the VA gives grants for vans.
 

Lilacs53

Distinguished member
Joined
Oct 13, 2014
Messages
107
Reason
PALS
Diagnosis
09/2014
Country
US
State
AZ
City
Buckeye
Thank you, missed you too.

We are hoping to get a grant from One of various Arizona programs Idk if they have the same type of program in other states though, but it might be worth looking into. Gerard is going to call them in the morning.

Two weeks ago I made the painful decision to not drive anymore, because I had to use my hand to lift my foot to the brake peddle...it felt like it was too heavy to do it on its on. :( Even though we could get a device to help in this, we decided not to, because of the ALS spreading, I don't want to take any chances of hurting somebody.

I figured out the Model talker & was able to upload my first 10 sentences, finally..lol.
 
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