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sajrcc

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Friend was DX
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A very close friend of mine was diagnosed with ALS a couple of years ago. For the past two years has enjoyed life to the fullest (family vacations, trips with friends, etc) He has been a great example of courage and positive thinking. As ALS makes its inevitable progress I am a little unsure of how to help him and his family. How do I support best support them?
 

Phil M

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Just be his friend, and treat him no different than you did before. I'm sure he just wants to live his life as normal as he can.
 

sajrcc

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Friend was DX
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Thank you for the response. I am always unsure what to ask. My friend does his best to live life, but his diminishing capacity always leaves me guessing as to what to do. (example....two months ago we could go to the movies together, but today it would not really be possible).

Is it wrong to privately call his wife and ask about his condition and want he can and can't do? My friend does not really like to talk about the disease.
 

joelc

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Good for you! You are a great friend to be so concerned about doing the right thing.
I would talk to his wife, she should be able to give you many insights.
Why is it no longer possible to go to movies? I am in a wheelchair with a tracheostomy and vent, it does not stop me from doing anything!

Live life to the fullest and enjoying every part of it.
 

brooksea

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Just go visit your friend! You will soon be able to tell what he can and cannot do. Although, it sounds as if he may want to hide this from friends and family. That's OK! Maybe he's trying to remain positive.

In any case, I see nothing wrong with calling the wife about his condition. She would probably be most grateful to know that you care that much to even inquire about his abilities. At least, I would be. She could probably tell you what he would really like to do and you could help him do it! Just grilling out with smell of the meat cooking (you playing chef if he cannot) would probably lift his spirits. If he can't go to the movies, rent one and bring it to him and y'all watch together. If he can still eat, bring his favorite finger foods too!

Really, just visiting is so important.
 

brooksea

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Phil,

I see you're just a few miles down the road my friend! I can't private msg you, as you haven't been on the forum long enough yet.

Do you go to Emory ALS Clinic?
 

Phil M

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PALS
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Phil,

I see you're just a few miles down the road my friend! I can't private msg you, as you haven't been on the forum long enough yet.

Do you go to Emory ALS Clinic?

Not yet. I'm intouch, but haven't been to any gatherings yet. I see the Dr there tomorrow.
 

Phil M

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PALS
Diagnosis
5/2008
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US
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Ga
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Snellville
My friend does not really like to talk about the disease.

I tell my friends not to talk about it. Treat me normal. If I'm in the mood to talk about it I will. I do keep them informed. Your friend doesn't want to get emotional. even though theres nothing wrong with that. It can make him very uncomfortable physically. It can give him some extra drainage in his throat, and he can possibly choke on it. If he, or she is anything like me. Just being there is enough. You would be suprised how many so called friends dissapear when you become really ill! Guess they just don't want to deal with it.
 

brooksea

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sajrcc:

What Phil says is all too true! Your friend will have few of his cronies visiting much! So, if you find it in your heart to stay in touch you would be a true friend.

And by the way, you may want to bring flowers or a bottle of wine for the wife!:wink:

Phil:

Good luck at Emory. They are very caring and straight forward. Hope you will let us know about your experience at the clinic.
 

sajrcc

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Friend was DX
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thanks

Thanks so much for all the great advice. I have just returned from a nice visit with my friend. When we are just sitting around chatting it is easy to forget about the disease for a little while.

Maybe I should have clarified an earlier comment. I believe that my friend is still capable of going to a movie, but I believe he is uncomfortable relying on my help. He is much more comfortable in his home where he the things he needs are more readily available. I understand that completely. I do, however, want him to know that I would do ANYTHING necessary to help him.

This is a great site. I have learned alot about ALS.
 

Al

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Joined
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You didn't say how old you are but one of our biggest concerns in winter is snow shovelling. You can get people to plow the driveway but someone to clear the steps and walkway would be a huge help.

AL.
 

sajrcc

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Friend was DX
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shovelling

great idea. I am 34, my friend is 40
 

Al

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Perfect age for shovelling snow 34. LOL. I was reluctant to ask for help for quite a while but you learn that you just can't do a lot of things yourself and some of your better friends are reluctant to offer, thinking that you'll feel bad that you can't do it yourself. If you see a bulb burned out, offer to replace it. I was having trouble eating with a straight fork and spoon. My brother bent some dollar store utensils for me. Beats the heck out of the $20 ones at the Handi. store. There are lots of little things you can do if you look closely. Come spring time a wax job on the car is great. I used to do mine every 3 months. I can't justify paying a service $100 and up to do it. Anyway I hope I've given you some food for thought.

AL.
 

crystalkk

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sarjcc

You could always rent dvd's and watch them when you visit.
 

sajrcc

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Friend was DX
Country
CA
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Alberta
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thank you

Thanks again for all the great ideas and advice. My friend is a great example of finding the best in a bad situation. I have realized from browsing the forum that he is not alone in that regard.
 
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