"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.