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DeansWife

Distinguished member
Joined
Oct 18, 2011
Messages
196
Diagnosis
08/2011
Country
US
State
AL
City
Fairhope
Hello, I'm new here although I've been reading posts for several months. My husband was finally given the diagnosis of ALS with Progressive Bulbar Palsy. Right now we are taking it a day at a time. He is still able to eat most foods though he does choke often. He undergoes E-stem therapy for the swallowing about every three months. Seems to help for several months so far. He can still walk but not long distances and has use of his hands/arms. He is a 30 year veteran so we have filed for VA comp. That is a waiting game. It's only been a month so I know it will be many more before we hear anything back. Prior to him being diagnosed, we traveled the US of A in a 40' motorhome for almost 6 years. This was our retirement dream. We have been blessed by being able to do this as it afforded us the opportunity to see and do many things that most people will only dream of doing. Of course we wished for more years but it wasn't meant to be. We are now back in a house. So, that's our story and we're stickin to it :-D

Just thought I'd say hi and to tell you that I've already gotten a lot of information from your posts and look forward to getting more and sharing what little I know. God Bless.
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,757
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
You should not have to wait months for VA benefits. We filed 4/26/2010 and received the first check around 6/10/2010.

That being said, welcome to the forum. You will find so many people here ready, willing and able to give you the support you need.
 

tammyg

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Joined
Jun 10, 2011
Messages
374
Country
US
State
md
City
baltimore
So sorry to hear that. Welcome to your new family, we are always hear to listen, cry,advice and laugh.
 

Okie2

Distinguished member
Joined
Dec 21, 2010
Messages
258
Reason
PALS
Diagnosis
04/2010
Country
US
State
Oklahoma
City
Bartlesville
Welcome to the forum, sorry you had to come this way.
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
So sorry you needed to find us but glad you did. Welcome to the family. There are Loving and knowledgeable people hear ready to help. We are on this journey together. Big Hugs
 

Felica

Distinguished member
Joined
Nov 15, 2011
Messages
116
Diagnosis
06/2011
Country
US
State
Al
City
Gardendale
Hello Deanswife I am new as well. But I have been praying for everyone I have come in contact with on here for months. I will pray for you and dean as well. Question. What is e-stem therapy? Does is improve symptoms ? Where do you get it? And how much does it cost? I would love to just swallow a drink of water to be able to eat something would be well I can't describe it that good
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Welcome aboard and God bless you!
 

Gail K

Active member
Joined
Nov 10, 2011
Messages
47
Reason
PALS
Country
US
State
New Jersey
City
Marlton
Welcome to the forum. I just got on yesterday, so I'm new too. I can still walk, but I can't do steps. You mentioned retirement, so you're probably around my age. I'm 68. We're still traveling and, in fact we're going to Australia and New Zealand soon. I'm not walking through airports this time. We arranged for wheel chairs. In fact, we've rented a wheel chair in Sydney to help us get through shore excursion on our cruise around New Zealand.

You sound like a good caregiver for your husband. My husband is super!
 

rictak in IA

Active member
Joined
Nov 9, 2011
Messages
51
Country
US
State
Iowa
City
ruthven
Hey everybody. I guess I came in with the new crop as well. My wife was diagnosed in May of this year, shes 37. She started with some slight weakness and shaking on her left side (arm and leg), witch has been slowly (I think?) Getting worse, and has moved to some weakness on her right. She is walking fairly well and still teaching kintergarten, but it takes alot out of her. No breathing or swallowing issues. We have 2 kids, 7 and 1 and live in NW Iowa. Glad to finally be able to post! Been frustrating watching from the sidelines :)
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Gosh! This is so sad to see all you newcomers! I'm so sorry any of you have to be here, but I'm sure all of you will find lots of support.
 

Ken's Kid

Member
Joined
Sep 15, 2011
Messages
14
Reason
Loved one DX
Country
US
State
SC
City
Conway
I am new myself. Like others, been looking around the forums. My dad was diagnosed with ALS 08/2010, he also has bulbar onset. My mother passed away in August 2010, just 5 days after he was "tentatively" diagnosed with ALS. I believe he was confirmed in 10/10. My 2 teenage daughters and I came to live with and care for dad in June 2011. He is still plugging away. For the most part we have just kind of been here knowing that things will be more difficult for him and he will need the extra help. We seem to be reaching that point now. Things are becoming more and more difficult for him.

Anyway, dad has been dealing with the VA/ALS Clinic as well and they have been WONDERFUL. We have equipment here that we don't even need yet but anticipating that we will need. We have been blessed with a woman who heads up the ALS Clinic who just obviously loves her job and loves the veterans and she has been a saviour.

Dad lost his voice and ability to swallow - had a PEG tube placed in April 2011. He is getting weaker and has told me he doesn't think he will be walking much longer. Hands are still functional but getting weaker too. Recently got a BiPAP which he uses at night.

Stay strong DeansWife. This is a bugger of a disease. It's difficult watching my dad go through it. I can't imagine what it would be like to see my husband go through it.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
Country
US
State
MA
City
Southborough
Welcome to all the newcomers, to the club no one wants to be in. This forum is a lifeline for me, and it's very comforting to know that others know what you're going through. Sorry that you're here, but the support is amazing.
 

tammyg

Distinguished member
Joined
Jun 10, 2011
Messages
374
Country
US
State
md
City
baltimore
Alot to handle in a small amount of time. Nice of you to uproot your life and move with him he is going to need you more then ever. Good luck so sorry you are here, welcome!
 

DeansWife

Distinguished member
Joined
Oct 18, 2011
Messages
196
Diagnosis
08/2011
Country
US
State
AL
City
Fairhope
Felica - E-stem is part of speech therapy. They place electrodes on the neck that sends a electrical shock to the muscles. Our neurologist orders it. As far as the cost, I really don't know as our insurance pays for it. It's not a cure but has helped with the swallowing issue. This is his 4th round and it seems like it's not doing as well this time. He's been doing a lot of choking even with it. We'll see.

Missy - I hope you are right about the VA. We were told a minimun of 6 months. We have a cruise planned in mid-Feb. but if I haven't heard anything by the time we get back I'll get our Senator involved. Fortunately my daughter is on a first name basis with one from our state.

As for the cruise - we used to cruise a lot, I was a travel agent, and my hubby said he would like to do one more. I'm beginning to not feel real comfortable about going because of his eating/choking issues. I worry about how much worse it will be in 3 months! I did take out the insurance so we can cancel but I hate to disappoint him.

It was great reading everyone's welcome. I hope I can contribute a little and give support when needed. It's a bad way to meet new people but I'm glad that this forum is here for us. [[Hugs]]
 
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