"Don't Say"

Don't say you are thinking of me, see me in the real.

Don't say you will help, then leave me helpless.

Dont say you care, then act careless.

Don't say you will be there, so I have to think "where are you"?

Don't say you understand, you just cannot.

Don't say  YOU WILL, when you won't.

Just "DO" even if I did not ask you.

ALS Vent Decisions 4 seasons in one day

Respiratory stabilization is the key to surviving longer with ALS and huge decisions have to be made about your respiratory status as time go's on, your decision to vent/trachea or not will change the path of your ALS, but it is a decision you will have to face eventually. One day you will suddenly be unable to breath well, I liken it to 4 seasons in one day, everything will happen all at once and then you will have to decide and there is NO GOING BACK once you are vented.

Before your breathing is an issue please discuss your wishes with the people you love and have your wishes known in your DPA (durable power of attorney), after all you are talking about your survival and ALS is an individual situation in each case, just as each person with ALS is an individual.

Don ( at this stage ) had decided not to vent, I say at this stage because he could always change his mind, Now that he is under "hospice care"if he decided to vent he would be classified as having an extended life and if vented he would no longer receive "hospice care"that for the moment is allotted to him, even though ALS is a terminal illness hospice does NOT support vented patient's so your support would be halved.

Having said this there are many reasons why an ALS patients make such serious decisions, a patient who vents may be young and hoping a cure is just around the corner, perhaps one wants to see their children graduate from high school or they want to fight the fight until they cannot fight any more, RESPECT ALS patients wishes at all times no matter what they decide, it is really a big deal because ALS takes so much from a person.

"Take these broken wings, learn to fly again" "learn to live so free".

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 !

Hospice Emergency Kit

Don's Hospice emergency/comfort kit arrived by UPS late yesterday, Kit includes Morphine sulphate, Acetaminophen supp, Prochlorperazine supp & pill form, ABHR supp, Haloperidol, Lorazepam, Needles Subcutaneous, Atrophine.

These drugs are a comfort in an emergency and we have a hot line to hospice to use them effectively, the nurses will help and will come to the house, this is a huge comfort to Don and myself.

RILUZOLE 50MG

HMMMM to take or not to take that is the question we are still pondering will keep you UPDATED!!!

UPDATE: May 27th 2011 1am in the morning Don started taking Riluzole.
UPDATE: DEC 15TH 2011 Don has tolerated the Riluzole very well and luckily for him it has agreed with his chemical makeup. I feel it has slowed down his
his symptoms by at least 20% or more, he is still taking it twice a day.