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clewbcg

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Joined
Apr 9, 2008
Messages
42
Reason
CALS
Diagnosis
09/2006
Country
US
State
Utah
City
Heber City
Hi
My husband was diagnosed in September 2006, and we have been very lucky that his progression has been very slow. I feel guilty looking for support knowing that many people have such quick progressions. However, I would like to know how to deal with what seems like a long slow death by inches. My husband is starting to lose the strength and function in his hands on what seems like a weekly basis rather than a monthly one and neither of us anticipated that he might still be walking and talking but have no use of his hands. We have talked about and tried to make plans for the stages with a wheelchair and speech difficulties, but not this. We are in our 50's and have no family nearby. Our two children are far away and completely in denial. If anyone can help me deal with this, I would appreciate it greatly. We were so afraid of a quick progression, and now my husband is terrified of not being able to use his hands at all, but being around for a long time. He is very depressed. Help.
 

CindyM

Moderator emeritus
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Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello- please do not feel quilty for having "slower" progression. As you put it so well- it brings its own challenges. Feel free to vent here anytime, and please give yourself permission to be afraid, to feel sad, and to feel whatever emotions this disease brings on. It does get easier, but you have to work through the negative feelings first. JMO. Cindy
 

JACKIEMAX

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Joined
Jan 22, 2007
Messages
159
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US
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TN
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Baxter
slow progression

to our new friend,'' the slow progression you are describing is most likely
his hitting a plateau. i say this bec. no two patients have the same symptoms
at the same time. losing strength in his hands is most likely the beginning
of the legs and arms ready to lose strength. i am not trying to discourage you,
but als is a monster disease. you and he will go thru many many more
trials and tribulations in the next few months. our prayers go out to you.

jackiemax
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
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Mobile
clewbcg

My brother lost his hands and arms first. We are now his hands and arms. What ever you do with yours is what you will have to do for him. We clothe him, Bathe him, Feed , Give Meds. And everthing esle. It will be a challange at first. But you get use to it. The fact that your husband can still walk is great.

Can he get home Health Care?

Tim also has slow progression. Don't feel selfish. All people with ALS is different. I know alot of Slow Progressors.

Lorie
 

stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
Hello! My husband is in a similar situation with his hands. The doctor can't really tell us why his hands were one of the last things effected and they have progressed the fastest. I'm sorry you don't have family nearby to help you. My husband and I have gotten used to me being his hands. At first he was always asking me to help him with everything, but it has become routine enough that he doesn't have to ask often anymore. It got much easier for him when everyone around him just did things automatically without him having to ask. He does not feel like he is "bothering" anyone when he doesn't have to ask for help. Thinking about the future is much harder than just dealing with the present! You should not feel guilty about your husband's progression. We are glad that you will get to spend more time with him.
-Stephie
 

clewbcg

Active member
Joined
Apr 9, 2008
Messages
42
Reason
CALS
Diagnosis
09/2006
Country
US
State
Utah
City
Heber City
Thank You!

Thank you to those who responded to my first post. It feels a little less lonely now. I appreciate the advice about the hands. Right now my husband alternates between asking me to do things for him and getting mad when I try to do it before he asks. Hopefully we will reach a compromise as he loses function. He can still walk easily but is starting to slur his words alot. I don't hear it, but friends tell me that he sounds drunk on the phone. He teaches so we are worried that he will soon have to stop work. Does anyone have any advice about computer aids? At first we were looking at hands free devices, but we are now also concerned about his ability to speak. Any suggestions?
Also, is anyone taking lithium?
 

andyvaughn

Distinguished member
Joined
Feb 12, 2008
Messages
138
Reason
CALS
Country
US
State
ca
City
thousand oaks
I am sorry to hear about your husband. And, like the others mentioned, please don't feel guilty about slow progression, it gives me hope....
My husband was just recently diagnosed, but he is rapidly progressing. We are in the first steps of a speech augmentation device. I don't know if you are being treated at an ALS center, but they should be able to bring in several representatives from the varied manufacturers, (sp?) We are going to a technology rehab center, that has all of the varied machines on site for us to use and get a feel for. I do know that the ALSA can provide loaners if money is an issue. Insurance should pay for one. I personally am aiming for a machine that will do everything, including having eye-gaze technology. I can't tell you about the machines, as we don't have one yet, but I do know also that if you are registered with the MDA they will pay up to 2000.00 towards the purchase, in my case that will cover a good portion of our copay. But, it is a one shot deal, both with insurance and with the MDA, so make sure you get a machine that can adapt to any loss of function, as it would probably prove very difficult for your insurance to pay again, and the MDA pays only once.
This disease is such a dreadful thief... I wish you and your husband the very best in your journey ...
Andrea - wife of Pals Jim.
 

terryscare

New member
Joined
Apr 11, 2008
Messages
2
Reason
CALS
Diagnosis
06/1998
Country
US
State
Tx
City
Arlington
Hello - I understand exactly how you feel - i am new here also. My husband has had ALS for 10 years. It first started in his left hand and then moved to his right and then his left leg and then his right leg. His progression was really slow until the last 2 years and how he is completely dependant on me. It is really hard going really slow because you go in and out of denial and it seems when something does change you start the grieving process all over again. But on the other hand, I would not trade a minute for anything. He is now at the stage where most people that progress fast are when they start. We just try and take 1 day at a time and laugh a lot.
 

clewbcg

Active member
Joined
Apr 9, 2008
Messages
42
Reason
CALS
Diagnosis
09/2006
Country
US
State
Utah
City
Heber City
Hi to terryscare

What you said about going in and out of denial, and starting the grieving process over and over again is so true. After my husband was diagnosed by an expert in the field, we traveled out of town to another clinic with an equally qualified expert who told my husband that he absolutely didn't have ALS. He told him to stop taking the rilutek and said: "how does it feel to get your life back?" I was shocked that he so quickly disregarded the fellow expert's diagnosis of ALS. After my husband celebrated and called his whole family, the same expert three months later said that he did have ALS. We have had times since then when it seems like the whole thing was a mistake, and then suddenly he will lose the ability to cut his food or something similar. Now we seem to go up and down every day.
Thank you for responding to my email. I don't know how you have done this ten years, but I keep telling my husband that we will do it one day at a time.
 
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