NEW CLINICAL TRIAL !! FOR ALS PATIENTS!! FDA APPROVAL !! READ ON...

http://www.als.net/TDI-132?utm_source=contactology&utm_medium=email&utm_campaign=FDAApprovesNewClinicalTrialinALSPatients

ALS DrugTrial Dexpramipexole Fails

VERY SAD NEWS in regards to the Drug dexpramipexole BIOGEN Trial for ALS patients, I was hoping as many others did that this drug could become Drug # 2 for ALS patient's, now we are back to just one drug  RILUTEK which is usually given in the last months of life to help with breathing, so it is back to the drawing board with hopes still pinned on other Drug Trials.
http://www.reuters.com/article/2013/01/03/us-biogen-trial-als-idUSBRE9020BJ20130103

 MORE INFORMATION & UPDATES ON ALS DRUG TRIALS CAN BE FOUND HERE:
http://www.alsa.org/research/about-als-research/clinical-trials.html

Hilary Swank to play ALS patient in "Your Not You"

ALS patients would be first to laugh out loud "at themselves" if they could but most cannot even do this joyful act, the first joy my husband had taken away from him was his ability to laugh as his paralyzed throat took that ability and so much more away from him. Just ask anyone who has ALS or the immediate families who care for their loved one or the families who
have lost a complete generation of family members from ALS what they thought of the careless one liner in the TED movie!!

After the disgraceful if not thoughtless line from the TED movie released 2012, “From one man to another, I hope you get Lou Gehrig’s disease", the one liner caused outrage throughout the ALS communities worldwide & set back the seriousness of ALS as a terminal disease that has no cure and little by way of medications. The general public need to be educated  not laughing about it,  Quote from the World Health Organization:"The World Health Organization predicts that neurodegenerative diseases like ALS will surpass cancer as the second leading cause of death in Canada by 2040", for larger population's such as the USA the statistics will be even higher by 2040, this is certainly no laughing matter.

There will be another chance for the general public to be properly educated via the movie industry with the 2013 Film release of "your Not You". This will be a very challenging lead role & will be played by the brilliant actress Hilary Swank. I am sure Hilary Swank will bring to the big screen the reality of ALS and the deadly affects this "no cure" disease brings to the lives of many. The movie has been adapted from the novel "your Not You" written by Michelle Wildgen, screenplay by Shana Feste & Jordan Roberts, Director George C.Wolfe, I for one will be going to this movie and I will be taking a box of tissue's with me not because I will be "laughing" for I am sure to "cry".

Written By K Purdy

The Final Week Of Don's Life PART 1

                                             
                                                


PART ONE: Don a wonderful father of 4, a veteran USN, never had a sick day in his life Until ALS........Don My Dear Husband of 31 years this photo was taken JUST 5 months before he passed..................

"My fingers have been suspended over my laptop keyboard so many times since Don passed away"  tears always falling silently down my cheeks I was unable to actually put my feelings into any semblance of writing, my heart and mind like an impenetrable force field. I have dealt with a roller coaster of emotions since March 2012 and it is only now that I feel I can actually touch my keyboard and type to you all about Don's passing from ALS/MND.
I wanted to express what it was like from a wife and care giver's perspective, caring for your loved one at home from ALS diagnosis till passing. Not everyone can achieve this as an ALS patient has many needs, each person/family with ALS is individual with different circumstances.

7 days out from Don's passing, if I had only known I would have climbed into his bed & hung onto him and held him 24/7  in my arms however I was ignorant to the fact this would be my husband's last week on earth, I had cared for him at home since April 2011 by myself except for the weekly visit from the hospice nurse, I knew he was given a death sentence with no chance of a cure, but you never think your loved one will die always hoping that the "CURE" was just around the corner, I kept the thought of losing Don deep back of my mind as it was to painful to think about.

In the week leading up to Don's death his breathing capacity had become much more difficult, he had a morphine cad pump inserted with a line in his abdomen approx 2 months prior, the doses were low and he would pump the CAD before a shower to help with his breathing ( he hated all the tubes/lines hanging off him, who could blame him !!, just to shower was huge task the cad pump and stomach tube had to travel with him ), the Morphine doses were not large and he could not overdose as it was set by the hospice nurse for certain doses per hour, Don still chirpy as ever we plodded along with our "normal" if not "abnormal"routine's, his hospice nurse checking his lungs each visit but with a more intense  look on her face each time. I had been assisting him with showers and toilet function for a while, he had aggressive Bulbar ALS but was still able to stand for a short time assisted and write in his notebook to communicate.  Last shower March 2nd, his once strong legs now shook  and trembled as he tryed to stand up I would get into the shower with him so he felt safe, he refused to use the shower chair to sit on or the special bar frame for the toilet, a PROUD MAN if not a little stubborn, I got him washed up and settled him into his bed and he wrote me a note " I think from now on I will have bird baths, no more showers", my heart sunk as this was a another twist in his battle with ALS, that "ONE" sentence told me so much, I felt bile crawling up from my stomach as I now knew Don had "turned "THAT" corner" but I still did not realize how fast those corners would come at us, I hugged him and said "ok hun no problem, bird bath's it is".


March 5th late afternoon: Don could still make urgent grunts to grab my attention, besides texting and note writing, as I heard his agitated grunt and went to his side,  he held his note pad tapping the pen madly on the pad letting me know this was important, his note said " please check who is in our driveway, "I see bright lights next to the television" I went and checked and no one was there and told him "there is nothing out there Don", he insisted pointing at the wall in front of him getting more agitated writing on his pad " check the neighbours drives" so off I went to have a good look and came back saying "Don there is nobody out there " he kept pointing at the direction of the wall" and wrote "see them", I could not see anything and told him, I said "perhaps it is your birthday balloons reflecting on the wall" he shook his head no, so to calm him down I moved the balloons to a different part of the room, I could see him still looking where he seemed to see lights I could not see, his beautiful blue eyes intensely staring.

March 5th Late in the evening: Don refused his normal evening peg tube feed saying he felt he could not handle any, he was coughing more and I noticed he looked more worried, he wrote on his notepad "I feel I cannot breath if I have my peg feed", concerned I said OK and gently sat him up and massaged his back to help his lungs and this seem to calm him and he eventually fell asleep he would not allow me to use the cough assist machine on him "he Hated it", he was not due a hospice visit for a few days, however I made a mental note to call them first thing in the morning, I called them a few hours later.

March 6th Early hours of the morning 1.30am: I abruptly awoke and as I did I captured on my ceiling in my bedroom brilliant orbs of light, I jumped up immediately & went to see where these lights were coming from thinking to myself "these must be the lights Don was seeing", however there was nobody out there. I went straight to Don to check him, he was half  awake, I asked if he was OK and if he needed anything, he wrote on his pad "no I am OK", I tucked him back in comfortably and left his side not knowing he must have kept from me what he was feeling physically, "always the gentleman", "always one to protect me from anything that would upset me".  I had this nagging feeling in the pit of my stomach that I should sit in the rocking chair but Don never liked fuss and it annoyed him so I kept thinking what would Don want & so I went to my lonely room exhausted I fell into a semi sleep ( I could not sleep with him anymore due to all the medical equipment  another separation thanks to ALS) ! I placed a call to Hospice to ask them how I could make him comfortable & tell them what changes were happening, they gave me some instructions but to me it was NOT ENOUGH, now feeling helpless. & hopeless I prayed.

March 6th morning time: Don awoke at 5am in fits of coughing and vomiting phlegm, to most this would be SO awful but to be doing this and have a paralyzed throat/tongue/chest it was horrific !!! I immediately called hospice and said "get someone over here STAT",  it seemed like I waited forever, for Don it must have seemed like an eternity. Don had signed a do not resuscitate order so I could not call an ambulance, I was panicking and wanted someone immediately to help with this huge turn in Don's situation. It seemed like forever before the hospice nurse on duty got there, when she did I explained what had been happening in the past few hours and that I felt Don was in a VERY CRITICAL CONDITION, she seemed not to realize how critical until she tried to stabilize him and he continued to choke and vomit phlegm  then I think she knew things were NOT so good. The hospice nurse & MYSELF fought to stabilize Don,  it took well over an hour but eventually he seemed to be better and not to mention exhausted from fighting to stay ALIVE !! The hospice nurse then left and I was there thinking WHAT is going on ? all alone and thinking please Don please be OK & please don't leave me.

March 7th 2012 : Don was still not stable, I sat by his bed and said to him "you know how much I love you", "I could never see me loving someone as much as I love you " he picked up his notebook and wrote :unconditional: I did not know this would be his last loving words to me, Tears formed at the corners of my eyes, as they fell I licked them hoping he could not see them, I was forever hoping he would see a strong woman, a woman that had loved unconditionally for 31 years no matter what. I said "Don I will help you stand so you can pee", no matter how he tried he could not pee, finally he produced a TINY amount of urine, I told him "good job" But I knew this was not right! I told him "don't forget your dad will be here today from NY and our oldest son is flying in from Omaha today, and your mum and sister will be here soon" he looked at me and nodded to let me know he understood. Due to the fact Don had been really ill during the night his regular hospice nurse was coming to visit him, a good friend also an RN for the ALS Assoc called and asked how things were, when I told her about our last 24 hrs she told me " I am coming to see you, tell your family members if they can visit to do it as soon as they are able" even these words did not trigger the reality of what was unfolding before me. Our daughter was home from work and when the RN arrived she asked me "what do you need?" I told her Don no longer wanted showers and I needed to go into the city to buy a large bowl and soft wash cloths and baby wash lotion. Don was awake in bed, I told him I was popping out to the store for a few things and that our daughter would be there & the hospice Nurse & his mum would also be there any time soon, he gave me this very intense stare and wrote "will you be back soon"?  I said yes, this was very strange, I now know Don must of felt things for him were so not right and did not know how to put into a note to me, Tears.

March 7th 2012 1.30pm: We arrived back pulling into the drive there were 4 cars in our driveway and I immediately thought "what the heck" and got up the stairs very fast, his regular hospice nurse was still there, I had mentioned earlier to her that morning by phone that Don was not voiding well, so she proceeded to inform me that Don had been cathed, and because his breathing was also an issue she had vastly upped his morphine CAD pump. I went straight to his beside he was awake and the poor soul had voided a huge amount after being cathed, I am sure he felt totally relieved, then I thought "uh oh another tube/bag for Don to deal with still not realizing the seriousness of this new medical assistantance" Unbeknownst to me while I was sitting with Don, his hospice nurse asked my friend if there was any way she could stay with me because " this will probably be Don's last day & I don't want the family to be alone". I was unaware of this conversation and after all the hospice crew left my friend Chris said she would stay a while I said "oh we will be fine no need for you to do that", but she was very insistent that it was no problem and that she had no other clients that day. Soon after that Don's mum arrived with his sister and they were told by Chris that he was really not well and to spend as much time as possible and to come back the next day as well. I left them alone to be with Don and sat down my head full of all these thoughts I was exhausted and trying to put my finger on why I felt so disjointed in my head, I now know this was my body on hyper drive, "please Lord get my oldest son here soon" I needed to see him and knew it would be better all around for Don to see him........................

March 7th 2012 3.30pm: Don's mum had left and said she would be back the next day, I went into see Don and he was exhausted and pumping madly at his Cad pump till he drifted off to sleep, Chris said perhaps you could get some of Don's favourite music for him to listen too, I immediately went to find his favourite tracks "Led Zeppelin", in the meantime I left him with our daughter alone, Chris said to her  "he can hear you so speak to him and he will hear what you say, tell him anything you want to". To this very day I do not know what she said to her dad but it calmed him even more, they were very close, it will perhaps forever be her very private moment. Soon Anne the hospice pastor arrived and went to Don and prayed with him singing to him and it sounded so beautiful, she held his hand and what she shared with him in prayer I could not hear but I knew it would comfort him as Anne & Don had a bond that developed over the time he battled his ALS. After Anne had spent time with Don she stayed instead of leaving,  my daughter and myself sat with Don holding him and playing his favourite ZEP tunes, then I started to notice his breathing was much more shallow and his breath's seemed to be further apart, I went and asked Chris what is this with Don's breathing? She said "thats ok this is normal" but never said he is near taking his last breaths in this world or I would have gone into sheer panic, I thought it was the morphine doing it, I was still unaware my husband was pulling away from this world, that thought would be unbearable to me, so I did not think of it.

 Now the three of us were with Don and his breathing was now spaced out even more, then in a suspended moment of time and space he stopped breathing then nothing, I said "Chris can you check him as he is taking long gaps between his breathing, Chris leaned over and felt his neck and said "Kim,  Don has gone, he has passed"I remember saying to Chris "that is not possible, please check him, please tell me he is OK  she said "Kim he has passed as she checked his pulse again" I remember letting out this screaming howl that I never knew a human being could make March 7th 2012 5.30pm, my world spun out of control, my husband was gone, instantly in that moment a part of me died with him. ...........
                                                           
Don never got to see his oldest Son who was winging his way from Omaha,  tragically he arrived too late, Don's dad missed seeing his son by 20 minutes, I had to call his other sisters who were driving on their way from VT to us in NH  to tell them Don had just passed. They immediately turned around and headed back to VT to be with Don's mother, she was going to need them, our other two son's never got to see him that week or day either. I feel Don and God made a plan for all to be together that were from afar so when he passed we would all be together.

To be continued..........

Dominic Cumo is one of the youngest people to be diagnosed with ALS ( Amyotrophic lateral sclerosis ) he is just 8 years old. You can read a recent article on Dominic through the posted link, http://www.vvdailypress.com/articles/gehrig-35490-lou-among.html 

Dominic singing "never say never"

                                          PHOTO ROTH & JASON

Please join Jason Becker for his birthday celebration July 22nd, watch the video for details.

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.

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,

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 !!!

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......

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/