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.

HOSPICE

May 2011 5 months after definitive diagnosis read on... how did we get to the point where Don is under the hospice wings of care? I cannot remember how this happened I just know that one day hospice came to our home after  Don's peg tube surgery and a lovely nurse named Michelle came to see us and her natural nursing instincts told her there was a need and so she made sure Don was going to be looked out for. After Michelle talked with us she said "I want to talk to the director of Hospice care here in Keene NH and tell him about your case", the director found out how fast Don's ALS was moving and made a decision to book Don into the loving care of Hospice, does this mean Don will die soon? NO it does not, what it means is that we have SUPPORT for a terminal illness and now that Don is under the hospice wings of love if he needs them they will be there for him 24/7, what an amazing supportive team of people the hospice nurses are, we are thankful for them and their wise wisdom.

THE CANE

ALS moves into your life like a stealth bomber lurking over it's target waiting to seek and destroy. Don was given a cane by the VA to help him get up and around in the morning, he gladly took the Cane home with him but it sat up against a wall for the first few days. I initially could not see the significance of this piece of curved metal but to Don it was eating away at his mind. then one morning he started to use the cane and to my surprise was walking around the house with it for almost a whole day, that same evening he called to me and looked me straight in my eyes and said " I hate this cane!, this cane makes me realise I am truly unwell, this cane represents what ALS is doing to my body", it was then that Don realised and understood and accepted he has ALS and that he is in a battle for his very life.

Mary Jane & ALS

I have always been a believer in mother nature's bounty of healing plants, after all she has offered us morphine from the opium poppy to kill pain, Aloe Vera to sooth and heal cuts and burns & Aspirin from the bark of the white willow the list is bountiful and endless. With the above concept I decided to research the Internet for natural herbs for ALS and Marijuana came up immediately! I have found some interesting information and decided why not share this, here is a video of an ALS patient who swears smoking marijuana slowed down the progression of her ALS, I also found this very interesting article on ALS (Amyotrophic lateral sclerosis) and Marijuana you can read it here:http://norml.org/index.cfm?Group_ID=7004.

As I see it ALS has been medically documented for 140 years and the medical field still has not come up with any form of useful therapies so when it come to ALS we all need to keep an open mind and always remain aware of  scammers, If anyone else has found other useful information on ALS and using marijuana please do not hesitate to leave feedback,

AVAP BIPAP

Well it was back to the drawing board for fitting Don's breathing machine and after just getting over surgery for his peg tube he had to go back to hospital to stay over night to be fitted for a AVAP BIPAP as the one he was using was not doing the job, actually due to his throat closing the bipap he was using was making him feel like he was being choked, NOT GOOD.


So he came home with a new breathing machine and even though better than the other one the two masks provided still feel like they do not fit well but Don is using it at least 4 hours a night and that is way better than his usage with his last machine, his new nickname is "DARTH VADER" !


I think we will have to call the avap support and get this darn machine figured out.

PEG TUBE UPDATE

WE HAD MOVED HOUSE 3 DAYS BEFORE DON'S PEG TUBE SURGERY APRIL 25TH AND DON HAD OFFICIALLY STOPPED WORK FOR GOOD APRIL 24TH, such big changes in our lives he handled surgery very well, sadly the hospital did not. The procedure is normally a daytime event, but due to Don's bulbar onset the neurology unit had wanted him to stay overnight and see his clinical team the next day, however even though this had been ordered this never happened and he was sent home as soon as the conscious sedation wore off, no visual instructions on how to care or feed with this tube, nada zilch zippo. This error sent feathers flying in all directions when the neurology nurse called me the next day asking where we were and when I replied we are at home she was furious, it was only then that we realized he should never have been sent home.

When Don left the hospital the very first thing he did when he got in the door was eat a ham sandwich as he had not had anything to eat or drink since the night before and was fit to be tied, I was secretly worried something would go horribly amiss as he had this tube hanging out of his belly and there he was stuffing his face!! but he handled the solid food OK.

Next day with the help of a home visiting nurse he had his first peg feed, we did this feed by a large syringe pouring bottled water in his tube first then clamping, then pouring a liquid food supplement in then clamping again, then bottled water again and he handled this all very well, the wound site was still very bloody so the nurse showed us how to clean the site & correctly turn the tube.

DAY 3 and the wound still looks bloody & Don has decided sitting in the lazy boy is not enough of a 45 degree angle for feeding so he tried laying on the bed against his wedged pillows & this seems to stop flux feeling up to his throat. DAY 4 wound still bloody but he feels less uncomfortable and has started to master his feeds no problem. DAY 5 6 7 less bloody around the wound and it is starting to feel itchy but now the biggest issue seems to be motivating Don to do this process 4 times a day so I suggest we utilize the drip pole and use the drip bags given to us by the VA so he is able to feed slower as with the drip you can control the flow much easier. So I set up the drip pole and drip bag ( remember I am NOT A NURSE) and proceed to attach the tubing for his feed and nothing happens, there is supplement spurting out all over the place as we drastically try to figure out why it is not working and then AH HA Don has not released the main clamp from his tube so all of the feed was being blocked PROBLEM SOLVED.

MAY 11th Don is not good at keeping up his feeding schedule and so far he is feeding only 2 times a day, but the wound looks great and is healing nicely his weight continues to fall and I hope he will eventually grasp the importance of feeding 4 times a day as the weight gain will help his lungs, it is all a huge adjustment for him mentally and physically, he should have his peg tube flashed to his skin in about 6 weeks time.

FOOTNOTE: the hospital never shaved Don's belly before surgery & this made taping the tube after each feed very uncomfortable, so if you are going to have this procedure and you are a guy MAKE SURE THE SITE IS SHAVED BEFORE HAND.