"Important information" template?

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Turtals

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Joined
Dec 11, 2018
Messages
18
Reason
CALS
Diagnosis
12/2016
Country
US
State
MA
Hi all,
I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.)

I know we should probably have compiled such a thing already given that my husband was diagnosed more than two years ago and is quite advanced but since I am home, we've never really had a need for it. However, I am going away for the first time in a year...just an overnight for a college friend's milestone birthday. I know it will be good for me to get away and he should be fine, but I'm a bit wary to leave and realize that having this information handy would be at least a starting point to put my mind at ease.

We have a live-in 24/7 PCA/caregiver who will be here. He is absolutely amazing and takes care of all of my husband's care however, he has some limitations...like, for example, we kinda don't think he can read (I know, I know but he makes up for it in so many other ways). My kids (15 and 18) will be around and friends will be visiting over the weekend so they would be able to help our PCA with any reading or needing to contact anyone, should the need arise.

So, if any of you more organized people have such a document already that I could use as a starting point, it would be immensely appreciated.
Thanks!
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
162
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
If your PALS has a smartphone, I would recommend using it. An iPhone comes with a Health app that includes a Medical ID section that can be updated with contact information, medications, conditions and so on. The Medical ID function is also accessible through the emergency screen when the phone is locked.

Another alternative is a medical id bracelet with a built-in USB flash drive. I have two of these, both from my local ALSA chapter, that I routinely update with all information including copies of my advanced directives and power of attorney. I even download my medical records after each appointment and upload them to the flash drive.
 

KimT

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Extremely helpful member
Joined
Nov 18, 2014
Messages
3,383
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
I've started compiling my own list but I also have an APP on my iPhone specifically designed for ALS. It has sections for critical information and emergency contacts. I also plan on scanning all my documentation so it can be on all my devices.

I've had lots of time to do all this but never got around to it. Now I'm doing one new document every week.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
922
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
I don;t know if they have them in the US, but in Canada we go to the ambulance station for the refrigerator tag. It is a fold up form that has space for Name, address, illnesses, doctors and a medication list. It all goes in a plastic folder with a magnet on the back to go on the fridge. Paramedics know to look for these when they arrive. It can't hurt to ask.
Vincent
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,574
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
The advance directive and one-page summary should be on the frig, including contacts, meds, nutritional status (e.g. feeding tube), BiPAP use, suction machine and/or Cough Assist, concomitant conditions. Also the info I posted earlier about emergency care in ALS (attached again here).

Many EMTs will look on the frig or will ask about documents. The larger format of the regular paper can be easier for them to grab and skim while they are assessing the PALS.
 

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