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Feb 10, 2009
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Arkansas
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Hot Springs Village
Hi -This is the first time for me to be entering this forum. my husband was diagnosed with ALS on 02/09/09. I am already seeing a small amount of swallowing problems and the hands, legs are getting worse by the week. I feel his ALS is progressing very fast. Each day from reading about ALS I am seeing what a terrible disease ALS is. God Bless each of you - we are all walking this journey together - thankful for this site.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Welcome to the forum, sorry you need to be here. I was diagnosed one year ago, with bulbar. Lets hope that your husband has a plateau, thats what we all need, to give the doctors more time to help us. Yes it is really a dreadful disease and not something anyone should have to live through. Contact your als society and get as much help as you can, from wherever. And ask on this forum, you will learn so much from people experiencing the same things. Thoughts are with you.
jennifer
 

shelly2612

Distinguished member
Joined
Aug 31, 2008
Messages
103
Reason
CALS
Diagnosis
09/2008
Country
US
State
Ohio
City
Waterloo
Hi Marlene

Welcome, I hate that you have to be here, I hate that any of us has to come here. My husband was diagnosed 10/08 with ALS. Just know that you are never alone, we are always here for you to answer any questions you may have and support you in your time of need. Keep smiling and praying for a cure
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Marlene. Welcome but sorry you had to come looking for us. Use the search feature above and look at the FAQ to learn how to use some features that we have or just ask.

AL
 
Joined
Feb 10, 2009
Messages
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Loved one DX
Diagnosis
02/2009
Country
US
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City
Hot Springs Village
Thanks Jennifer - sorry you have ALS also. Will be praying for you. Keep in touch.
 
Joined
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Messages
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Loved one DX
Diagnosis
02/2009
Country
US
State
Arkansas
City
Hot Springs Village
Hi Shelly, thank you for answering my hi. I can't seem to stop crying. My husbands voice is going fast and I want to learn and know about things before he can't tell me himself. This is such a rare disease and so horrible as I am finding out as I read. I am also trying to put my list of resources (people etc) together. I know God is with us - I am not afraid just so very sad. Hope you have a good day, Shelly. Keep in touch - we need one another.
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Marlene...I take it your husband has bulbar...PLEASE while he still has a voice, look at downloading e triloquist .. A FREE download which your husband can use to communicate. The reason to do it so soon is that it has a facility to record his voice saying anything he would like, so he has a sense of still talking to you. I left it too late and so only have a bought voice ( I only bought a voice as I wanted a british voice, not microsoft mary or sam). The only record of my own voice that we now have is on our answer machine. How I wish I had recorded little things to say to my tiny granchildren and my hubby.
 
Joined
Feb 10, 2009
Messages
10
Reason
Loved one DX
Diagnosis
02/2009
Country
US
State
Arkansas
City
Hot Springs Village
Yes, Jennifer, my husband does have bulbar and thank you so much for telling me about the e triloquist web site. I am trying to educate myself on communication devices and systems that will be helpful in the future as things change. This is one terrible disease and I am praying for a cure daily. Praying for you as well as you deal with this daily.
 
Joined
Feb 10, 2009
Messages
10
Reason
Loved one DX
Diagnosis
02/2009
Country
US
State
Arkansas
City
Hot Springs Village
We live in the south where the humidity is high in the summer - I am just wondering how this will affect my husband who has ALS and will he just have to be confined to our house till Fall? Appreciate any comments. The more I read on these forums the more I am beginning to realize how horrible this disease is. Only God knows how far this disease will take over my dear husband but believe me I am praying for God's mercy.
 

rowland's wife

Active member
Joined
Nov 22, 2008
Messages
34
Reason
Loved one DX
Diagnosis
09/2008
Country
US
State
Arkansas
City
Lamar
hello marlene, I am from arkansas also about a hour and a half from hot springs, my husband also has bulbar als he was diagnosed in sept. 08, his voice started slurring in july 08 it has progressively gotten worse in the last 2 months it has gotten harder for me to understand him, I have asked the neurologists about something to help us communicate better we are still waiting, don't waste anytime finding out about the voice machines because you never now how fast or how slow this horrible disease will move
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Marlene,

It sure is nice to know you are there for your husband! God bless you for all that you are doing for him.

I like Jennifer's idea of recording messages from your husband while he still has the ability to vocalize. He can record messages of appreciation for you now that you will be able to replay at any time down the road. For that matter, he can record anything to anybody while he still has the ability.

I'm pulling for you!

Zaphoon
 
Joined
Feb 10, 2009
Messages
10
Reason
Loved one DX
Diagnosis
02/2009
Country
US
State
Arkansas
City
Hot Springs Village
hello marlene, I am from arkansas also about a hour and a half from hot springs, my husband also has bulbar als he was diagnosed in sept. 08, his voice started slurring in july 08 it has progressively gotten worse in the last 2 months it has gotten harder for me to understand him, I have asked the neurologists about something to help us communicate better we are still waiting, don't waste anytime finding out about the voice machines because you never now how fast or how slow this horrible disease will move

Hi rowland's wife. It is so heartwrenching to see my husband getting weaker each week. Voice is harder to understand, he now has to use a cane to walk has to give up part of his hobby because of his hands losing strength and he was just diagnosed in February. It seems to be getting worse very quickly. My heart goes out to you as well knowing what you are experiencing daily. I will be praying for you and your husband.
:-(
 

handinhand

Senior member
Joined
Mar 28, 2009
Messages
902
Diagnosis
02/2009
Country
US
State
Colorado
City
Pagosa Springs
Marlene...I take it your husband has bulbar...PLEASE while he still has a voice, look at downloading e triloquist .. A FREE download which your husband can use to communicate. The reason to do it so soon is that it has a facility to record his voice saying anything he would like, so he has a sense of still talking to you. I left it too late and so only have a bought voice ( I only bought a voice as I wanted a british voice, not microsoft mary or sam). The only record of my own voice that we now have is on our answer machine. How I wish I had recorded little things to say to my tiny granchildren and my hubby.

Jennifer, I just had my daughter and two Gr. Daughters here this past week. Jaime wanted me to talk and say something to her and her family while I still canon her little camera that records.. It was very hard but we did it. Your email made me cry . This is so very hard. I was diognosed with Bulbar ALS 8 weeks ago today. I am afraid I will not be able to tell the ones I love in my own voice very soon. Just the most helpless feeling.... God help us all. Lin
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Another site that is free for the program is at:
http://www.asel.udel.edu/speech/
You record the words they give you on your own computer and when finished send them the files and they hone it to get you a better product. The way I understand it you can also add phrases at the end. Such as I love you, etc.
It plays back on your own computer in your own voice.
I am recording mine with them this coming week. I think there are about 500 words if I remember it right.
Just another option for you to consider. I know my Neurologist wanted me to have a speech machine that cost about $6000. No way if I can use my own computer. When I get to where I no longer have use of my hands I can use a eye recognition mouse to speak.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Hi Marlene, so sorry you have to be here and that the progression is so fast. Hopefully things will settle down for you both. You sound like a trooper and we all pray for any easier time to come. I hope you facilitate all the things out there available to assist.

I just want to comment on the humidity. We were told that the humidity is important for and ALS patient, and that it should be kept at 100% or more. We have a woodstove burning in the winter and it takes the humidity out of the air. We have two humidifiers running with a gauge that tells us the percentage. We keep it between 50 or 60 at those times, and it is higher as the humid summer months approach.

Humidity is hard on a heart patient, but desired for a PALS.

Bless you and yours as time passes. Maybe a cure is coming very soon!
 
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