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Kate

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Friend was DX
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Depere
My best friend was diagnosed last year with ALS. She and her husband had some bad experiences with the Doctors they came in contact with and decided to look outside for help. She has been seeing an Acupuncturist and a physical therapist. When I offered to go with her to an ALS support group she told me she didn't want to know what to expect. I have honored her wish, but now she is loosing her ability to swallow. Her ALS symptoms started with her speech, I have been told her ALS is starting from the top of her body and going down, instsead of with her limbs, like most symptoms. She can still walk, and write, but has been unable to talk for over 6 months. She is on a bunch of supplements, pills that she chokes down (literally) several times a day. She also has some atrophy of one side of her diaphragm, so her breathing is somewhat labored.
My question, where do I go for the kind of information, i.e. foods, mechanical help, that I can diplomatically suggest? I live in Wisconsin, she lives in Illinois, I only see her once a month. I feel so helpless, and i want to honor her wishes, but I am afraid she and her husband are not being realistic and I fear it will be a crisis before he reaches out to find help, and she will needlessly suffer in the meantime. If I could have some readily available sources when the time comes....
 

kelly

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ALS center

Sounds like the family should really contact an ALS center. They have been so helpful to our family. Challenging to watch a friend struggle..especially from another state. Gently suggest the ALS center. Fondly, KR
 

brooksea

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HM
Kate look up ALSA. Also MDA for ALS. You will find plenty of info.

How old are your friends?
 

Kate

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Friend was DX
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US
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wisconsin
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Depere
She is 67 he is 69. Very stubborn rock heads. Nothing is impossible to accomplish, all mind over matter. Up until this she was extremely healthy, ate right, exercised, never smoked, drank in moderation, kept her weight perfectly. Makes you wonder why bother? Do everything right and you get hit with something like this.
the whole family are non-communicators. This is why I am trying to get information that I can "diplomatically suggest" from time to time. She is still eating, but grinds up things like salad, still eats "normal food" but chokes quite a bit. She can't drink watery liquids, she freezes fluids and eats them as a slushy.
Until I went on this website yesterday I did not think about her aspirating her food and developing pneumonia. These are the kinds of things they are not aware of because they have refused any contact with ALS related organizations.
 

paula-jane

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Lost a loved one
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Ontario
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Oakville
Kate,

Just a thought... Is there a possibility that she does in fact know what is going to happen but does not want to talk about it? Perhaps she has made some choices about how to handle her disease and does not want to discuss it for fear that people might challenge her choices or beliefs?. All you can do is educate yourself about ALS and be honest with her about wanting to help her and be there for her when/if she wants or needs your help. Ask her how you can support and help her. Continue to offer your friendship and love. It is really tough to watch someone you care for do things differently than you might do if you were in their shoes. It's wonderful that you make that trip to be with her each month... best friend's are special!

Paula.
 

CindyM

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Learn about ALS
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New England
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Anytown
Good point, Paula. We've seen it around here before that sometimes when a caring relative or friend does the research and is there at the right time with the information, the PAl and CAL start to open up a bit.
 

anneinma

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PALS
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barnstable
We knew too much. My husband's doctor told us to stop reading.. I think my husband passed worrying about what was going to happen to him.
 

Kate

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Joined
Jun 24, 2008
Messages
7
Reason
Friend was DX
Country
US
State
wisconsin
City
Depere
yes, she said over a year ago she didn't want to know what was going to happen. I respect her choice. I don't understand it, I am the kind of person who has to reach out for all the help I can get. My fear is that a crisis will develop and her husband won't be prepared to deal with it, and she will suffer while he is getting his ducks in a row. I came into this chat room to educate myself so I can help her however I can, however she lets me. I made 4 different kinds of soup and froze them for her the last time I spent the weekend with them. I am going to be spending another weekend with them the middle of July and I am desparately trying to come up with more recipes of easy things for her to eat that I can prepare for her. She fell two months ago and broke her hip and wrist, so she has not been able to do her own cooking. Her husband has NEVER cooked.
I showed her how to make fruit smoothies and she really liked them. Anybody got a source for recipes that are nutritious and easy to prepare, and easy to eat? (I am not asking for much, am I?)
 
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