ALS "AMERICA'S BEST KEPT SECRET" AND THE "OFTEN AWESOME ARMY"

The earth shook on the East coast of the USA, hurricane Irene loomed & there was a big buzz around the world about a major breakthrough for ALS http://www.feinberg.northwestern.edu/news/2011E-August/ALS_Breakthrough.html?sf2041063=1  How ironic that all this would be happening whilst Tim LaFollette slipped away losing  his battle with ALS and passed from this world. Tim's mother tragically lost her life to ALS when he was just Two years old as if this was not tragic enough in May 2009 at the young age of 30 Tim was also given a diagnosis of ALS & the "ROAR" began, Tim was going to make sure he educated the entire world about his battle with ALS by way of the "Often Awesome" series http://oftenawesome.org/ .  This is an amazing insight into the life of  a patient with ALS and what is brought to the table, the battle, caregivers, devastation, high moments, low moments and everything in between, not to be ignored, this documentary is brilliant, soul searching and "REAL"  a must see. Tim you will always be remembered by myself and  many others across the world, a cure for you did not happen in your time , but through your insightfulness and willingness to share your battle with the world perhaps there will one day be a cure.

"Another turning point fork stuck in the road"

"Like an Anaconda snake ALS suffocates it's victims & remains elusive, so you wing it from the very start of diagnosis and battle ALS on a day by day process".

 Don turned another fork in the road in his battle with ALS & it has taken me  days to calm down enough to write about this.  Taking the Rizoule (aka Rilutek) seems to have agreed with him, this is lucky because it only works with about 50% of patients that take it, it seems to have slowed the fast track of symptoms he has been experiencing however I come to find there is NO magic pill to take for ALS.

Don has had little symptoms of weakness in his hands/fingers & then low and behold the other day he says to me "can you open this pepsi bottle" "can you open this water bottle" , my heart sunk and I'm like "no please not already!! this is another fork in the road,  but we will make the best of what we have and totally embrace life each day.

Another turning point, a fork stuck in the road
Time grabs you by the wrist, directs you where to go
So make the best of this test, and don't ask why
It's not a question, but a lesson learned in time

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

So take the photographs, and still frames in your mind
Hang it on a shelf in good health and good time
Tattoos of memories and dead skin on trial
For what it's worth it was worth all the while

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

It's something unpredictable, but in the end it's right.
I hope you had the time of your life.

It's something unpredictable, but in the end it's right.
I hope you had the time of your life

GREEN DAY 1996

Brain-Computer Interface could help ALS patients

www.yomiuri.co.jp
A group of scientists from Osaka University Hospital is set to conduct clinical research aimed at mechanically producing the actions directed by disabled people’s brain waves. If successful, the research would make it possible, among other things, for people who cannot use their arms and legs to display their thoughts on the screen of a personal computer.
It would also enable physically handicapped persons to manipulate robots.

Continued Article here: http://neurogadget.com/2011/01/11/japanese-researchers-to-help-als-patients-through-brain-computer-interface/170

Read about how BCI works at the link below
http://computer.howstuffworks.com/brain-computer-interface.htm

Peg tube to a Mickey tube

Don's New Mickey Tube 7/22/11 

Last week Don went to the VA spinal clinic for his check up and to finally get his peg tube changed to a mickey tube. He was excited about this because getting the mickey would give him more dignity, no more huge bump sticking out from under his clothes, and no more shaving his belly so he could tape the tubing to his belly, no more skin infections or oozing ( his tube did this constantly) but the change came at a price.

Don's peg tube change was without full sedation, conscious sedation, or pain killers, he had his pegtube yanked out of his belly and "IT HURT"!! not to mention he did not like seeing any blood, Don almost told them to stop!!!!He has bulbar ALS so they do not like to sedate bulbar patients at any time unless needed. He will have to have his mickey replaced in 6 months.

UPDATE DEC 15TH 2011 Don has had ongoing problems with his mickey, it started off with secretions leaking around the tube, hospice gave him a medication to lower the acid level in his stomach content & this seems to haved helped for some time. Then he developed constant bleeding around his mickey and this has continued the whole time, last sunday it was bleeding enough for me to call a nurse to come and see him, the outcome is his mickey will have to be renewed, his body is trying to constantly reject & grow new skin around the mickey.

UPDATE DEC 19th 2011 well the veterans hospital is trying to fit him in to have his mickey tube changed as the leaking is still happening.

UPDATE: Mickey tube changed just before xmas!
Mickey tube changed thank the good lord above, this is Don's third tube, his new tube still secrets discharge around the outside of the mickey, we have learned to cope with it, according to the nurses ongoing discharge around the tube is standard but I know other ALS patients who have no discharge!

"Don't Let Your Babies Grow Up To Be Athletes" ALS & The Concussion Connection.

Compiled by K Purdy.

Contact sports could lead to the deadly motor neuron disease known as ALS ( Amyotrophic lateral sclerosis ).

Doctors speak about the deadly affects of smoking, drug use, drinking & obesity and the long term affects on your health, but they do not warn you that the simple act of playing sports could one day Kill you by way of developing a deadly motor neuron disease called ALS? It would be completely fruitless to expect people NOT to play contact sports but people need to be aware of ALS and how playing contact sports could have devastating affects on their body later on down the track.

Athletes are now being diagnosed in much larger numbers with the disease A.L.S. ( Amyotrophic lateral sclerosis), are these new statistics due to modern medical diagnostic abilities? or is it something more alarming? I have recently come to find that Lou Gehrig sustained serious head injuries while playing baseball & the statistics are indeed very alarming!

 

Did you know that Lou Gehrig swapped baseball caps with Babe Ruth one time because Lou Gehrig's head was too swollen to wear his own cap due to swelling because of a head trauma? In the hay day of Lou Gehrig's baseball career ALS barely made a whisper because it was so rare.

                                                   

1. In 1925 Lou Gehrig is knocked unconscious after a ball is thrown at his head, it took smelling salts to bring him around.
2. September 30th 1928 Lou Gehrig is hit in the face from a line drive and rendered unconscious.
3. April 23rd 1933 Lou Gehrig is beaned by a fastball.
4. June 29th 1934 Lou Gehrig is beaned by a fastball, he lay on the field motionless for 5 minutes.
5. June 15th 1937 Lou Gehrig is struck in the jaw and knocked out cold.
6. June 19th 1939 Lou Gehrig is Diagnosed with ALS.

It was homecoming 1981 — Minnesota’s last in Memorial Stadium. Bob Stroup, a fullback for the Gophers, sustained a hit to the back of the helmet.
Everything went dark, “It was like someone poured ink over my face,” Stroup said. “I stayed in the game. The first time I saw the next two plays was on film on Sunday.” Nearly 1,000 miles away, Mike Webster was playing center for the Pittsburgh Steelers. “Iron Mike” was a future Hall of Famer, renowned for playing through all sorts of injuries, including concussions. He played 150 straight games from 1976 to 1986.
In September of 2002, Webster died at age 50. His life post-retirement was tormented by depression, debt and addiction. An autopsy uncovered that Webster suffered from chronic traumatic encephalopathy (CTE) , a degenerative brain disease similar to Alzheimer’s found in those with histories of repetitive head trauma. SOURCE:http://www.mndaily.com/2009/11/05/concussions-and-repercussions.

It is yet to be determined if there is a mimic of the ALS disease out there, however if there is a mimic out there the symptoms are the same and just as devastating. According to a study by Dr. Ann C. McKee of Boston University http://www.ncbi.nlm.nih.gov/pubmed/20720505, repetitive head trauma experienced in collision sports might be associated with the development of a motor neuron disease. Specific Brain Abnormalities Linked to Motor Neuron Disease in Athletes with Head Trauma, researchers used sophisticated neuropathology techniques to study a specific protein called TDP-43 http://www.med.upenn.edu/cndr/TDP43androleonALS.shtml in brains obtained at autopsy from twelve former athletes, eleven of the athletes had been professional football players, one was a hockey player.

All of the athletes had a newly characterized disease called chronic traumatic encephalopathy (CTE), three of the athletes were affected by fatal motor neuron disease Of course most people who develop ALS are not pro athletes. "The study has broad implications, not only for understanding the potential risks to professional and non-professional athletes in many types of collision sports, but also for people who serve in military combat environment" comments Dr. Raymond A. Sobel, Editor-in-Chief of Journal of Neuropathology & Experimental Neurology. "Anyone who experiences repetitive, seemingly mild, head injury or concussion might be at risk for developing a brain disease later in life."

Dr. Adriano Chiò a professor in the department of neuroscience at the University of Turin, conducted a study on Italian soccer players, Dr Chiò ordered death reports on 24 thousand men who had either played semi-pro soccer or professional soccer from the 1960's to 1996. The findings showed that Italian players died of A.L.S. at a rate almost 12 times as great as normal, so it was decided to undertake a more aggressive study. The new study however found not only an increased risk among these Italian athletes, also the longer an athlete player the greater the risk of contracting ALS.

"I always say, 'You can ice your ankle but you can't ice your brain,"' says Dr. Julian Bailes of West Virginia University's School of Medicine. "You don't send a player who's still symptomatic back to play."

Additional Sources: HBO sports, Old New York Daily's, New York Times, Journal of Neuropathology and Experimental Neurology.

"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.

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.

USS TRUXTUN CGN-35 did you serve on this ship?

Did you serve in the USN on the USS Truxtun CGN-35 the late 70's to the early 80's ? my husband did and he has ALS, this disease is also called Lou Gehrig's, drop us a line & thank you for your service. N.B: http://www.truxtunassn.org/Events.html we hope to go to this !


Sailor's Creed

I am a United States sailor.

I will support and defend the Constitution of the United States of America and I will obey the orders of the officers appointed over me.

I represent the fighting spirit of the Navy and those who have gone before me to defend freedom and democracy around the world.

I proudly serve my country's Navy combat team with honor, courage, and committment.

I am committed to excellence and the fair treatment of all.

Sleep Lab For Bipap

This past wednesday March 23rd Don went to DHMC for a sleep study to find out what kind of Bipap breathing aid would be best for his breathing issues. Don arrived about 7pm and by 9pm he was fitted with all the necessary wires and gadgets ( they had also threatened to shave his goatee off which he has had for years ) after a while they put a mask on him and he found this very uncomfortable, he felt like he was being affixiated so they had to remove the mask. he ended up with about two hours sleep but it was enough to figure out what his breathing issues are ( I hope). Don was told in the morning that they would see him and address the Bipap issue at his next ALS clinic, however the hospital has since called & informed him that he has a date for his feeding tube proceedure April the 25th,  not sure now what will happen, either the Bipap will come first or the feeding Tube surgery, either way something has to be done about both.

Often Awesome The Series - Episode 28: Prisoner Inside

I have been following Tim on his journey, he is a remarkable young man, I admire his stella strength & have watched his story unfold through time, people need to watch his films from the begining to understand Tim & what he has been through.

Drop Foot

Dam It!!!! Dam It!!!! Don get's up this morning and his right leg gives out, he almost fell through the wall, looks like this drop foot is going to be a problem faster than we thought, it never ceases to amaze me how ALS trys to take control of Don's body in a different way each day, PUCK ALS !!!

Fund Raiser Starts Tomorrow

Don's fundraiser has started, big big thank you to his workplace WTG! Hopefully it will raise enough so we can move !!!
FOOTNOTE: I have left the company name out as I do not have permission to use it ahead of time, if I get permission I will post more information.

First ALS Clinic Visit

We had been waiting since January the 14th "The day of Don's definitive diagnosis" to attend our first clinic appointment, the day we were given the devastating news we had so many questions and had run out of time, so the first clinic appointment was another chance to ask more  & I made sure we armed ourselves with any questions we needed answered for our visit.


The morning of our appointment started off great because we had been blessed with clear skies, something we had not seen in New Hampshire for quite some time and headed out in our clunker for an almost two hour drive. About twenty minutes into the trip I mentioned to Don that the road we were on did not look familiar and he said "I was just thinking the same thing", thankfully we had a cell phone and I immediately called my angel friend Heidi & explained where we were and she said "you are heading in the opposite direction, you need to turn around and go all the way back"!


One thing Don and I have always enjoyed as a couple was taking drives together, I have never driven and have always admired Don from the passenger seat, having raised four children being in the car together was our time out. Now Don gets directionally confused and could have directions in front of him and still get lost, our trips as of recent have been extended sometimes by an hour or more due to being lost.


Finally we arrived at DHMC ALS clinic and while in the waiting room met some lovely people also there for clinic, sadly none of them lived in NH & they had travelled even further than we had, it was great to meet other folks who were living with ALS & there was swaps of emails & phone numbers.


The clinic started off with us being put in a room, the first Doctor we saw was a respiratory doctor, we were pleased about this & Don after a few quick questions was taken away to have his respiratory testing done right then and there, we were given a read out however no explanation to what level his breathing was at, just a comment that the reading could be off because bulbar ALS patients tend not to have good control with the mouth when doing the test, so now we will have to wait till next read out to see if there is a bigger decline in his lung capacity, he was told his read out was enough to have a required sleep lab to test him for a bi pap machine to help him breath easier at night, the sleep test will be done at the end of the month.


After the respiratory doctor it was all on, we saw doctor after doctor without barely a breathing space & it was like a rotating door, with Don's neurologist being the last with only about 10 minutes to spare before the end of clinic, there was the usual barrage of questions, eating sleeping, breathing, limbs, speech, we had no time left to ask much of anything. There was a mention of a trial phase 2 starting in April 2011 that DHMC was just given, I had to ask the doctor if Don would meet the criteria, he looked at Don's respiratory read out and said perhaps.


 The social worker knew of our terrible living environment and took information from us & between her and the ALS North Eastern Chapter Rep Christine they will compose a letter to help us medically get out of our lease if possible.


As to Don's drop foot on his right leg, the physiotherapist said he could give Don a brace but hesitated to do so because using a brace makes the muscle useless much faster, but it was noted in his chart that he has visible drop foot.


So all and all our first clinic was rushed chaotic and of very little help of the immediate kind, ALS is a  waiting game, so Don is waiting for a decline in breathing, brace for drop foot when he can no longer walk without tripping or falling, he has to buy his own speech aid, he was not given a different drug to help him sleep, they just upped the drug he already takes, they did not discuss the peg tube & we did not even have a nutritionist there to ask about one of Don's biggest issues because she was on pregnancy leave.


We left the clinic with our heads spinning, needless to say Don got lost again going home but this time it was only about a 10 minute delay, time for a GPS in the car.


FOOTNOTE: The hospital called back to ask Don about a feeding tube, and the social worker told Don to approach the landlord to explain we cannot live here anymore due to Don's disabilities, and according to the  veterans HQ they have not received Don's medical papers yet,  I will be making a lot of phone calls this week on Don's behalf, isn't that what clinic is for? isn't that what the ALS Assoc helps with, isn't that what the Paralyzed veteran's of America rep helps with? are we alone in all this chaos?HOPE NOT.

Father of 4 speaks out about ALS AKA Lou Gehrig's Disease

http://www.burlingtonfreepress.com/article/20110304/NEWS02/110303049/ALS-stirs-Hinesburg-man-to-action

ALS patient's conned into bogus stem cell therapy

60 minutes went underground to investigate one of the most evil brazen con artists 60 minutes has ever recorded, charlatan Stowe claimed he could heal ALS sufferer's, Stowe claimed no need for a wheelchair or death from ALS, he could reverse ALS, ALS patients would walk away healed after his stem cell therapy.

PEG TUBE DECISION

Don went for his first visit with the speech & diet therapists, the subject of "peg tube" came up, I saw the shock on Don's face as this was the last thing he thought would be discussed at this appointment.
They explained to Don that keeping his weight up was one of the most important things in fighting his ALS because the weight would also help with his lung function. They told him to think about it and that they liked to peg tube patients earlier whilst healthy enough to handle general anesthesia.
I could see the sadness & fear in his eyes talking about the peg tube as it brings the reality of what is ahead, I asked what the process was and they said he would be in hospital at least one night, he would have a longer tube for approx 8 weeks then they would turn it into a button tube so he did not have a dangling tube, he would also be able to work having this and that it was vital for giving him the nutrients he needs on a daily basis.
Don must eat eat eat he can have the most of unhealthy foods like ice cream fatty foods anything that keeps the weight up, anything you ate whilst on a diet must be completely reversed. WE WILL UPDATE YOU......

A DEDICATION FROM MUMMA

For my daughter Kim and my adopted beloved son Don
Life can be hard but they soldier on
In a marriage spanning thirty plus years
They’ve shared laughter, love, strife and tears
Many times their bond has stretched too thin
But they always faced their issues and let the love back in
Four lovely children all now grown
Are chastened to hear that Dad sounds so different when they phone
My thoughts go back to our New Zealand Whanau times
Remember my home-made pizza on Saturday nights?
Or when Kim and I indulged in a few Jim Beams
I sang in Spanish – oh yeah? – in my dreams!
The fun times we shared are too many to measure
And these happy memories are always ours to treasure
And now, Kim and Don, we wish your burden could be less
But can that ever happen with ALS?

Lots of Love always, Mumma/Nana

Stu from ALS GUARDIAN ANGELS is an angel update:

I just talked with STU from ALS GUARDIAN ANGELS and I am floored,humbled,tears are streaming down my face because he understood, he wanted to help and most importantly he understood what ALS is what ALS does and what ALS does to you financially, he is a "real" angel on earth, yes they exist and Stu is one of them, please DONATE to ALS ANGELS THE WORK THEY DO IS REMARKABLE HERE IS THE LINK: http://alsguardianangels.com/

The Struggles Have Begun.......

I am getting more frustrated as the days go by and need feedback please...... Our first hurdle is due to my hours being cut in the past month and medical bills ( not covered by our insurance ) and travel costs we are 1 week away from losing everything we own in a storage unit in TX they will auction it off in Feb, my husband was going to drive down to TX from the east coast to get our things in Dec but now this would be a difficult task for him, I don't care about the material things what upsets us the most is all our family photo's/memories are in that unit, the very thing of comfort for a person who is ill is to have cherished memories, I am mortified! We live in a studio 1 brm apt with steep stairs & a bathroom you could not swing a cat in ( we would never have leased this apt if we had known my hubby would be diagnosed with als) is there anyone we could contact to help us find a place to rent that is more adaptable? we live in the New Hampshire. I sleep on a mattress on the floor ( no bed ) and he sleeps on a couch as breathing laying down is uncomfortable for him, this has all happened in the last 4 weeks due to ALS creeping into our lives and it sucks, if anyone knows of anyone who could help us save everything we own we would sure appreciate it.IS THIS REALLY HAPPENING?

UPDATE STU FROM ALS ANGELS CAME TO OUR RESCUE, WE ARE SO THANKFUL!

Another day In Paradise "NOT"

Don and I finally got a precious day off together but it did not start of well. "Again" we had no hot water or heat in -24 degree weather, I  have a cold virus and due to an impending snow storm this week we have another week of delay in seeing our only support person by way of the ALS New England chapter.

So we hunkered down for the day filling out Veterans disability forms N.B. if you qualify for VA  disability benefits because you have ALS you do not have to be out of a job/not working to receive a benefit however the SSDI is a bit different and can take up to 5 months or more to be processed, good thing is that a lot can now be done online  https://secure.ssa.gov/apps6z/iClaim/dib, we will update you about all this boring stuff as we go through all the red tape.

Home Alone

Today I am home alone with my thoughts & my mind is a cesspool of emotions that I cannot stop, I liken it to an out of control train that will not slow down and eventually will turn a sharp corner and come off the tracks.


Don had family visit him yesterday & it was so good for him, I could see some of the old Don and it was wonderful to see the sparkle in his eyes, we all went out for a great dinner & at one stage he started to choke on some food and it brought me back to reality & I could not finish my meal.


His sister gave him a cell phone ( we have always used a net10 reload phone ) and it is like a new toy which also takes photo's so when we can understand how this process works we will load some photo's onto this blog :0)

DAY OF DON"S ALS DX :0( WTF !!!!!

December the 16th 2010, Are dates important? usually we look at dates as a reminder of a loved ones birthday or anniversary or perhaps just something as simple as when your next payday is, December 16th 2010 my husband was told he had probable Lou Gehrig's disease and our lives changed from that date.

January the 14th 2011 the day my husband was definitively diagnosed with Lou Gehrig's I felt the pit of my stomach falling, my inner soul cried out "no please not my Don, not my best friend, not my everything", why is this happening? this cannot be so! but it is and everything feels so surreal and painful like an open wound constantly having acid poured into it.

I keep looking at him and see his struggle to speak and cannot imagine that one day he will not speak at all, I cannot imagine that one day he will not be able to kiss me or hug me, I already miss his laugh, Lou Gehrig's has already taken away his ability to laugh, slowly Lou Gehrig's disease will take away something from him however he will be left with a clear mind to remind him of this fact each day.

This is our journey into the unknown of ALS, it is like going into a dark cold cave and you are desperate to find a glimmer of light of hope of solace and warmth, we grip our hands and minds tightly just as we always have and walk forward together.