New To This Forum

[DeansWife]

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]

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]

So sorry to hear that. Welcome to your new family, we are always hear to listen, cry,advice and laugh.

 

[Okie2]

Welcome to the forum, sorry you had to come this way.

 

[notgivnup]

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]

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]

Welcome aboard and God bless you!

 

[Gail K]

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]

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]

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]

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]

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]

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]

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]]