Someone Please Reply To Me

[janf]

sweet potatoes

Thanks Big Al
Your the Mississippi where the sweet potatoes grow sooooo sweet. Our good friend is a huge sweet potatoe grower but, I'm sorry Mississippis' are better.

Been working on profile all morning hopefully got our picture in lets try it

(NOPE PICTURE NOT THERE)

i'LL TRY AGAIN

Jan & Lanny F

 

[MtPockets]

Thought I'd get a wise crack from AL?

After the picture? I was going to call myself GrandpaAL since I have 14 grandchildren but saw ALGRAMPS already had a name close, so went with Big AL.
Doc said my size may be an advantage (255lb) later when I start to lose weight due to the stomach tube. WOW never thought being fat could be so much fun, and ugly too.

Sounds like an old joke your fat, yeah and your ugly. Yes but I can lose weight.

Hope everyone has a good weekend. Enjoy life, go out and do something fun.

God Bless
Big AL

 

[gapeach]

jan,
My husband was diagnosed at Emory on the 14th of this month. To me it was better to know for sure than to be in such limbo. I really liked Emory and all of the ALS clinic support group. They were so nice to us and helpful about breathing and how to eat better without choking so much while he can still eat. When is your appt at Emory? My husband has had the laughing issues, too. We will be praying for you as you go. God can get help you through this. We also have my mother with us on hospice for kidney failure right now. God has given us grace each day to make it through. Just try to handle one day at a time, because each day has enough problems of it's own and God doesn't give us grace ahead of time but just for today! Keep your chin up!
gapeach- Susan Atkins

 

[MtPockets]

Hey GrampAL

Did you see the picture below? I expected a quick witted come back, must be a bad day for you.:mrgreen:

You know me just trying to stir the pot. Have a great weekend everyone.

God Bless
Big AL

 

[Al]

Actually on my board the picture is above. I do mine in descending order. I saw it about 3 in the morning. I was going to say you looked different than the fishing picture. Not sure if you look like Ernest Hemmingway or Grizzly Adams. How's that for a snappy comeback. And you do look more like a grampa than me. LOL.

 

[MtPockets]

Can't tell up from down anymore

How did you fly that plane anyway? You did say you flew a plane? Skydived?
The pics were a little different, cut about half beard off then next month cut it all off. Wifie says I look too old like grizzly Adams or something with the beard. All those grandchildren must be causing me to lose my youthful appearance. I know that is where a lot of the gray hair came from. Ugly just came naturally.

God Bless
Big AL

 

[Al]

Yup did fly just for a hobby though, and did go skydiving after diagnosed just once. I'd try it again but the harness would be too tight and couldn't breathe now. I think my kids made my hair fall out. Although ugly isn't in my vocabulary. LOL

 

[Brentt]

I hear ya!

Hi Jan I am 46 and have been dealing with this problem for about 4 years now .I am new to this forum and you are first person I have responded to .I want to say that when I first became diagnosed with als I was frightened to no end . My wife was terrified my family was devastated .
After dealing with the problems that develop over time I guess I have learned to deal with it. It's like any other problem just different remedies . We are fortunate to live in the times we live in. The medical implements and the help from others helps all of us hold on . My fears have gone away and my desire to learn how to live comfortably occupy my time.
I use a wheelchair that I can operate with my chin as my arms don't work anymore . The eye gaze unit allows me to communicate online and in person by using my eyes. I no longer talk . And I use a bipap at night to sleep as I can't breath lying on my side or back . These things are so easy to use and have given me hope . I have found that a feeding tube is not so bad either . When and if it becomes necessary I will have a ventilator installed as my 4 year old daughter needs me . Now I know it sounds like a lot of trouble to deal with but it's not . The best part is that I can live a long time with these new devises. You can get all the help you need from loaner closets from mda and als support communities . I encourage you to seek answers to your needs and talk to as many people as you can to find the best products to make your life easier .
Best wishes Brentt.

 

[Al]

Welcome Brentt. We need stories like yours here. Most of us look at what may happen down the road and it scares the heck out of us. You have lived it and are living from what you say a good quality of life. It takes determination and a good attitude. Sounds like you have both. I'm sure you have a lot of knowledge that I hope you are able to share. Stick around please and jump in whenever you have something to share. AL.

 

[Teej]

I agree, thank you for that... My husband has said that he does not want the vent, and we have argued about it a bit, because we have younger children too. Not as young as 4, but they are young enough. I keep telling him the girls need their daddy, but he says that he will be a burden to us in that condition. I am sorry if I am being insensitive in putting it like that, those are his words, not mine. I would never consider him a burden. As it is, I bathe him, prepare all his meals, cut his toe nails and clean and fill his Bi-pap. I hold him when he cries and encourage him to get outside and enjoy the sunshine. I am willing to do whatever it takes as long as he is willing to fight...but it really scares me, because the decision is not mine, it's his, and I have to honor that. So, I was encouraged Brent, to read your post. I want to share it with my husband. You see, his lungs started weak (asthma, chronic bronchitis, yearly bouts with pneumonia), and have deteriorated pretty fast. I have a feeling vent days are not far off. I just don't want him to give up, and I am praying he will maintain the courage to fight, no matter what that takes. Now, I know the vent issue is a very sensitive one, and I don't mean to offend anyone, I just feel that life has value, no matter how it's sustained. Each person has something vital to contribute, and I, like brent, feel very grateful that we live in a day and age where possibilities like this exist. Teej

 

[Teej]

Also, Brentt? Where do we find out about the "eye gaze" unit? Thanks! Teej

p.s. my husband was 45 this summer

 

[Al]

Your Ot or PT should be able to hook you up for it. I just got 2 programs for my computer called Dragger 32 and Word Q from the assistive devices clinic at the ALS clinic I go to. While there they let me try the eye gaze system out and it works pretty neat. If you don't have an OT or PT you should call the ALSA or MDA nearest you and they should be able to help. Depending on the programs there may be a charge. My leasing of the 2 programs is less than $10 per month. AL.

 

[Brentt]

EyeGaze

If you have medicare then you will need to get an evaluation from a speech pathologist .
Along with their prescription . They should show you what's available out there as well as have you try all models. If you set up the appointment ask them to have an eye gaze there for you to try out . They are very exspensive though .Even with medicare the out of pocket is about $3000.00 with an additional $3000.00 until medicare pays their share .I have also received a $2000.00 invoice through the MDA towards the purchase .
I think that they can be rented .
I would like to share some things with your husband .I thought that I would never be able to live with any disability . I was a macho football playin tough guy and said I would never want to be like that . As I progressed over the next couple of years I was scared to death of not being here for my family. I consulted with my wife about me just letting her go so she could get on with her life .She wanted to strangle me . As I got to the point where she has to do everything for me I knew that she really wanted to do it .I never thought that she would be a good nurse but she is the best nurse I have ever had .Then I had a feeding tube installed as this one thing that can help to keep the weight on .It is important to understand that the whole proceedure only takes 20 minutes and then you go home.The uncomfort only lasts for one week and then it's back to normal .I never regreted it for 1 second and I feel stronger with the nutrition .
I have talked with 3 nuerologists 2 resperitory doctors and they have told me that the care required for a ventilator is not that difficult . I thought the peg would be a hassle but it's very simple and makes feeding me easier on my wife .The vent is not any harder to maintain . None of the doctors have anything to gain from telling me what they have so I trust them. I am fortunate to have a group of doctors that are experienced in ALS not very many doctors specialize in this feild . And remember that the technology is rapidly advancing twords the cure . I like to think that one day I can tell my grandchildren about how I beat this battle . I hope you are courageouse and fight this hicup in life .I am on your side and will do anything I can to help . We need to stick together .
Brentt .

 

[Brentt]

Oh man I forgot to use the spell checker .

 

[John1]

Oh man I forgot to use the spell checker .

:mrgreen:

Brentt, thanks for your candid and helpful reports from the front lines of this battle. Those of us still in the back trenches appreciate them.

John