Tuesday, January 8, 2013

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

Saturday, January 5, 2013

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

Friday, January 4, 2013

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..........

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