ALS Survival Kit Part 1

What does one need to survive the daily grind of living with ALS? after all there is No Cure! the very moment you are diagnosed everything you have ever planned for or needed or wanted starts to take on a different life process, so in your mind you start to plan how your goodbye to this world will be and your loved ones start to go through the grieving process immediately.

Your ALS survival kit should include the following:

1.  LOVING AND UNDERSTANDING PEOPLE IS UP MOST, surround yourself with loved ones as much as possible however if before your diagnosis your family dynamics were not good then this could hinder how you cope with your ALS instead of enhancing your life ( I will write about this later), you are in a fight for your life & like any battle you want the best strategies and soldiers for this war.  Pull resources from your local community, church, friends, co workers, contact your local ALS chapter they will be your life line for important information http://www.alsa.org/, do not be afraid to ASK FOR HELP NOW! you will need all the help and support you can get, now that you have started to build your army you will begin to feel stronger :0).

2.  GET YOUR PAPERS IN ORDER: no one likes to think about a "DPA" durable power of attorney ( your local hospital has them for free), after all it is stating your dying wishes for the medical  people who will look after you, make sure the person or people you assign to your DPA are there for YOU and can be trusted 100%, if you are a veteran you can obtain your DPA from them, we had our bank manager notarize our Veterans DPA and it was free. If you have a spouse make sure that your bank accounts are joint and that your spouse has signage rights to this account incase you are unable to sign yourself, you will need this in the future, AND MAKE A WILL you can obtain these legal documents from http://www.legalzoom.com/ this cuts cost and expensive lawyers and legal zoom papers will stand up in any US court. Even if you are still working you can start the process of applying for SSDI you can do this online here http://www.ssa.gov/applyfordisability/ ALS is classified as a fast track illness and usually takes about 5 months from accepted application, if you are a veteran please use your local PVA rep ( paralyzed veterans of America ) as your initial point of claim they will help you through the whole process because ALS is now a 100%  service connected illness apply here http://www.pva.org/ what ever paperwork you need to do DO IT NOW !!!! BE PROACTIVE !!!!

3.  START FUNDRAISING NOW !!! start fund raising straight away, you probably think "I am not in a wheelchair yet" "I am still healthy " "It would not seem right to start now" "I have a great insurance plan" don't be fooled by ALS your illness can change on a dime!!!  there are so many ways to do fundraising now & ALS is a very expensive illness and even if you have a comprehensive insurance plan not everything you need will be covered, REMEMBER your illness is still classified as rare so your medical coverage will baulk at this DX. You could have a pancake breakfast at Applebee's ( they take a percentage of your fundraiser but still a good quick fundraiser) you could have a spaghetti dinner at your local community club, contact your local newspaper or TV station GET THE WORD OUT! not only will it help you but it will raise awareness about ALS.

4. EAT AND BE MERRY !! Any diet you have ever been on "throw it out the window" now is the time to enjoy anything and everything about food, pleasure yourself with food eat eat eat because one day ALS will take this pleasure from you! what are the benefits of eating well? for one you will gain much needed fat stores for later and what does this help? YOUR LUNGS! your lungs are your life source for coping with ALS, if you have bulbar onset ALS then get your peg tube early and keep eating till you cannot. DANCE like there is no tomorrow if you are not a dancing kind of person listen to your favourite tunes as much as possible this will make your motor neurons happy!! Drink your favourite wine or beer Drink and be merry if you like Mary Jane then "SMOKE IT some say it is beneficial  for MND , let your hairs down this will also make your motor neurons happy ALS will not wait for you so start partying like a rock star because YOU ARE !!!!!

5. BE DANGEROUS live on the edge, bungee jump or even better jump out of a plane, go to a huge rock concert ( yes that can be dangerous LOL ), if you love sports go to as many sporting events as you are able, I cannot emphasize how important living on the edge is, remember ALS does not care about you!

6. AS ALS CHANGES OUR LIVES WE WILL UPDATE THE SURVIVAL KIT !