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Poco

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I read an article in Reader's Digest about monkeys that help people with ALS or other similar diseases. The program is called Helping Hands and I looked it up on line. They are trained for 5 years and it is a non-profit organization with no charge to the disabled person., They can feed you, use a microwave, scratch your head, use a dvd etc. and turn pages of a book etc. They are capuchin monkeys and are little five pound caregivers. Has anyone ever had the experience of using them? Just wanted you to know Dick switched from lexapro to wellbrutin and it is not working for him, he is more depressed than ever. He now has a cough assist machine and the doctor wants to talk to him in three months about a feeding tube. This is progressing very quickly. We now have home health care and they have been wonderful and it has helped take a big physical burden off me and has worked great for Dick too. I think of all of you every day. Our social worker said there is a grant of $1000 a year for people with ALS thru the association. I don't know if that is nation wide. Thinking of all of you,
Phyl
 

CindyM

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Hi Phyl-sorry to hear that hubby is in a bad patch. You are right about the folks on this forum-I feel like I have made great friends here! Thanks for the information about the little helpers. Are you going to apply for one? Cindy
 

patricia1

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My husband and I were talking about those monkeys But my Jack Russell will Kill him:mrgreen: Pat
 

patricia1

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Poco said:
I read an article in Reader's Digest about monkeys that help people with ALS or other similar diseases. The program is called Helping Hands and I looked it up on line. They are trained for 5 years and it is a non-profit organization with no charge to the disabled person., They can feed you, use a microwave, scratch your head, use a dvd etc. and turn pages of a book etc. They are capuchin monkeys and are little five pound caregivers. Has anyone ever had the experience of using them? Just wanted you to know Dick switched from lexapro to wellbrutin and it is not working for him, he is more depressed than ever. He now has a cough assist machine and the doctor wants to talk to him in three months about a feeding tube. This is progressing very quickly. We now have home health care and they have been wonderful and it has helped take a big physical burden off me and has worked great for Dick too. I think of all of you every day. Our social worker said there is a grant of $1000 a year for people with ALS thru the association. I don't know if that is nation wide. Thinking of all of you,
Phyl
Your mail box is all filled Pat
 

Jamiet

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Poco,

Sorry to hear the dep. is worse on the Wellbutrin. It's what worked the best for me, i take 300mg per day and it was night and day compared to what the lexapro did to me. They all work different for different people. I would stop it today, call the doc and get another type, like paxil, zoloft or prozac. You'll find the right one for him.

On the monkeys, it would be a good idea, and mabye even pick his depression into more joy, might be like having a dog, but will get just about anything you want...and become a good pal?

Poco, please let us know if we can help in any way, this is all difficult, we're here for you.

Where do you get these monkeys and how much do they cost?

good luck

regards,

jamie
 

Poco

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They are exotic animals so I don't know if you can purchase them. These guys are free to people who need them, but they are trained for five years before they are given to disabled people. The program is out of Boston. I would love to have one, supposedly they are trained to interact with pets. We have two chuchuahas (spelling) and they are a great confort to us. Dick is having a hard time breathing. What scares me is when it is an emergency or just something that will pass. I wanted to take him tonight but he said no and seemed to calm down when I put the bi-pap on him with the nose pillows. He gets panicky with the full face mask which we just got. I don't have a good feeling about his progression, the ALS clinic told me he does not have the type of systoms that prolongs life, and maybe two years is his life expectancy. I would never tell him that. They told my Mom she had six months with lung cancer. and that is exactly when she passed. This was 2 months before Dick was diagnosed. I am having a rough night dealing with all this. What if I do something wrong or don't react fast enough and then he dies and it's my fault. This is so hard. Thanks for listening.
Phyl
 

Paty

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Hi Phyl

Hi Phyl sorry about your hubby, I also get scared when my husband seems as though he's choking when I am feeding him, specially at night, we live alone and this scares the hell out of me, but he refuses the PEG.

About these monkey's it sounds wonderful, I sure could use some help.
AS FOR YOUR DOGS, IT IS "CHIHUAHUAS", if you're talking about the little dogs, with pointed ears like German Shepherds.

Paty
Husband's Caregiver DX 10/17/05
Baja California, Mexico
 

Al

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Hi Phyl. Do NOT EVER feel guilty for what you do for your husband or what you think you might not have done for him. This is a very difficult disease to manage and deal with. Most doctors don't have any idea how to deal with it. You are a wife, caregiver, lover and are doing the best you can with the knowledge you have. I trust my wife to do the best she can for me and I am sure your husband knows you will do the best for him. If something happens that you don't understand or aren't trained to cope with it is NOT your fault. He knows this. As for the bipap mask try to get him to just lie in bed during the day with it on and just relax a bit. Don't plan on sleeping just relax and get used to it. It helped me. Take care.
AL.
 

terri

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monkeys

Hi,

I actually checked out the monkey a few months ago. There was a web site and I emailed someone there who sent us an application. The application said a clear speaking voice was necessary plus the trainer would live in your home while adapting the monkey to the person. Well, LB doesn't have a speaking voice and we don't have the extra room so we dropped the idea there. Others might find a way to make it work. I thought it would be a great idea. I would think a communication device might work to speak to the monkey with but we don't have a one that works that well.
 

nspoc

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Hi Phyl -

Just a word on the antidepressants - Please do NOT stop any of them abruptly, This can result in all kinds of problems called serotonin syndrome. You can have a rebound depression, but most often very troubling and persistent flu symptoms. I am a psychologist married to a psychiatrist - so lots of experience here. Some of these problems can be quite problematic - so please do not just stop.

I urge you to call your doctor and work this out.

Another point - breathing problems result in terrible anxiety, which is very linked to depression. Higher doses of the SSRI's (Prozac, Lexapro, not Effexor, etc.) work well for anxiety - but they take quite a while to work - actually significantly longer than the antidepressant effect. In the meantime I urge you to look into anti-anxiety medication like the liquid Lorazapam (Ativan) - VERY concentrated and fast acting.

Lastly - is he on Rilutek? It looks like Riluzole is turning out to be an effective antidepressant, especially in combination with other meds, for refractory depression.

Regarding feeling guilty - can relate to feeling very responsible for the safety of the PALS in my care. The panic is especially bad at night. I take Prozac - and it helped keep me on an even keel - made me ruminate about the future a lot less - and really removed the guilt. Things work differently for different people - but get some support for yourself - it sure helped me.

Take care and let us know how it goes! Beth
 

patricia1

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Poco said:
I read an article in Reader's Digest about monkeys that help people with ALS or other similar diseases. The program is called Helping Hands and I looked it up on line. They are trained for 5 years and it is a non-profit organization with no charge to the disabled person., They can feed you, use a microwave, scratch your head, use a dvd etc. and turn pages of a book etc. They are capuchin monkeys and are little five pound caregivers. Has anyone ever had the experience of using them? Just wanted you to know Dick switched from lexapro to wellbrutin and it is not working for him, he is more depressed than ever. He now has a cough assist machine and the doctor wants to talk to him in three months about a feeding tube. This is progressing very quickly. We now have home health care and they have been wonderful and it has helped take a big physical burden off me and has worked great for Dick too. I think of all of you every day. Our social worker said there is a grant of $1000 a year for people with ALS thru the association. I don't know if that is nation wide. Thinking of all of you,
Phyl
Dear Poco I was wondering about the $1000 is that for equipment or medication and who do you apply to Thanks Pat.
 

Poco

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Pat,

We now have a social worker who is part of our home health care team which we just started using. She is going to apply for us and I will ask her about the process' I would call the ALS or muscular dystropy assoc. and ask them but meanwhile I will follow up for you. There are a lot of programs I was not aware of before she came to see us. There is a group called transitions that volunter up to 4 hours a week to help you at home, such as light houswork etc (no nursing functions)so the caregiver can have some alone time to shop or whatever. All this might just be in Oregon but I would make calls from your area and find out what is available to you.
 

patricia1

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THANK YOU SO MUCH yOU ARE SO KIND PAT
 

Poco

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Pat,
The $1000 grant is in Oregon, but I would call your local ALS chapter and see what is available. We have so many resources here that I was not aware of that are covered by insurance or free so you should do some research in your area. Hope that answered your question.
Thanks,
Phyl
 
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