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KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,235
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
1. Don't fall and don't take risks that might lead to a fall.
2. Get other conditions treated early. I have hemorrhoids and should have had them taken care of last Spring. Now I'm in so much pain and still have them.
3. Understand progression rates can and do change
4. Get a local neurologist and good primary care physician who will work with you if your clinic is far away. Cooperation and compassion is just as important as knowledge when it comes to ALS.
5. If you live alone, make sure you have a support system and a plan in place for when you can no longer live alone. Don't count on all your friends to stay around. Some of them won't be able to handle it or are too busy themselves.
6. Start a "lotsa helping hands online help community and get friends and family on board to help with rides, means, whatever. It is how my rides are coordinated.
7. Figure out a way to manage your pain.
8. Let others know your routine, your med list, your wishes. You will have a progressive loss of control of everything so someone needs to be able to take over things. Please let someone in on your finances whom you can trust. Don't wait.

Educate as many people as you can. Please add to this list. I'm uploading the ALS Awareness Document because some health care providers appreciated it and it helped others understand the disease.
 

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Kathy K

Active member
Joined
Sep 10, 2015
Messages
59
Reason
PALS
Diagnosis
06/2013
Country
US
State
NY
City
Hudson Valley
Kim, this is a good list.

I would add a local pulmonologist if/when your breathing is affected.

Finish those projects now! You may not have the ability tomorrow or next week.

Speak up for yourself. I am a very easy going person who would thank people for fixing my coffee or buttering my toast. As I lost the ability to do simple things for myself I turned into a fusspot. Since I couldn't do things for myself I had to make sure they were done to my preference.

Visit people before you really need a pwc. None of my friends or family have a handicap access house so they come to me or we meet somewhere which is great but I miss going to people's houses.

Kathy
 

faithandlove

Distinguished member
Joined
May 22, 2016
Messages
174
Reason
PALS
Diagnosis
06/2016
Country
US
State
NV
City
Reno
I think of you often Kim, and pray that you get lots of help.

Thank you for this information.

Hugs,
Deb
 
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