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denise1965

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Feb 4, 2007
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1
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US
State
Alabama
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Vinemont
My name is Denise. I am sole caregiver to my husband Ronald who has been diagnosed for 5 years with ALS. His was bulbar onset. He is now total care. He amde the choice for no PEG or vent. or other life support. So needless to say it has been hard to deal with at time. He is veteran, 58 years old and formerly in law enforcement. I am now stay at home full time care giver. It is a great honor to be in a group with so many other wonderful people and heros.
Denise
 

CindyM

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Hello denise- welcome to the fourm, but sorry for the reason you are here. You are right about this being a group of exceptional folks. they are all quite remarkable in their sourage and compassion. glad you found us. Write more when you feel like it! Cindy
 

brooksea

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Sep 27, 2006
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5,171
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Other
Country
HM
Denise,

I'm very sorry your husband has ALS. Hang in there! We have to take it a day at a time. Please let us know how you and your husband are doing.
 

pmbenb83

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Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
Hi Denise ~ Welcome to the forum. I'm sorry to hear that your husband has ALS, but you have come to a great place to get advice and support from very good people with a lot of experience dealing with this. My husband is undiagnosed, but people have helped us with questions to ask the neurologist and have helped us to cope a lot better. We felt very lost until I stumbled upon this website. I don't post very often, but follow the advice that has been given to others that fit our situation at the time.

Take care and let us know how both of you are doing.

Pam B in Va

PS ~ My husband is also in law enforcement.
 

peli

New member
Joined
Sep 24, 2007
Messages
0
Reason
CALS
Diagnosis
june 2007
Country
AU
State
tasmania
City
devonport
hello I am peli. I have just joined the group. My wife was diagnosed with pbp in august this year. so we are still coming to terms with it. She is still very active and has no pain, but her speech is getting worse and she occasionaly chokes when she is eating. This is the most frightening experience for us both. Is there some proven way to get the food out of her throat when she starts choking?
 

CindyM

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Hi Peli- so sorry to hear about your wife. I am glad you decided to join us, though. You will probaby get a lot of answers to your question but the first hting I'd say is to please make sure you are familiar with the heimlich maneuver. ALso, I only tend to choke on liquids but for liquids it helps to keep your chin down when swallowing. I forget why that works but it does. If you try a search on choking from the tab at the top of your screen, you'll get more ideas. Good Luck! Cindy
 

peli

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Sep 24, 2007
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Reason
CALS
Diagnosis
june 2007
Country
AU
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tasmania
City
devonport
Hey Cindy, That was quick, Thanks for your reply, and I will try that info you sent me.

Thanks again.
 

CindyM

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:-D It is the luck of the draw, Peli. We just happened to be visiting the threads at the same time. I was thinking of you during the day, however. I remembered that on one of the threads someone said that it helps to get a thickner to put into thin liquids. You buy it a the drug store, I think, or maybe health supply stores like the kind that sell walkers and such. I forget the name but an employee should be able to point you in the right direction.

It might also be time to puree your wife's foods. A small food processor works great. Also your ALS clinic might want to know about her choking. They will have more ideas and tips. Cindy
 

TypingTerror

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Joined
Sep 16, 2007
Messages
12
Reason
Loved one DX
Country
US
State
FL
City
Zephyrhills
There are a couple of food additives to thicken liquids that I believe you can buy at health food stores. People on Atkins use them to thicken sauces or gravies without adding carbs. One is called ThickenThin not/Starch. Another is xanthan gum, which only uses a tiny amount each time sprinkled over the food/liquid and then stirred really well. It might work better for foods than drinks, but I'm not sure.

Marisa
 

comfortable with ALS

Distinguished member
Joined
Sep 24, 2007
Messages
111
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Other
Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
hello

hello iam new to this site and would love to talk to people can someone please tell me what to do jenny
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Jenny we are trying to help you but private messaging everyone on this site is not the way to get help. I have told you in private messages I'm pretty sure you don't have ALS but you do have some health issues and obsessing here is not healthy for you.
AL.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Jenny,

You might try your local "Hospice" center to see if they can help you with the loss of your child. Our local hospice does this, including pre-natal death. Also try comunity mental health as they may help with your loss.

As far as getting help for possible ALS you are at the right place - but being told you probably do not have ALS is "HELP." As you have been told you need to go a ALS clinic - find out for sure and then ask for help in dealing with it and the final outcome of death. If you do not have it, and it sounds like you don't, then you need to get on with the new baby coming, your life, and dealing with your physical symptoms. Everyone here has been helpful to you - I have seen many of your posts on different threads and even looked up all of your posts. I came to this thread for "Newbies", in order to tell you how to get on it, and I was glad to find your post here today.

This is the right spot for your initial inquiry. Go to the ALS clinic. I am very sorry you are in this very sad and yet happy situation. It is a lot of emotional weight, but you have deal with each issue, death of baby, new baby, physical health. Best Wishes, Peg
 
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