Living with A.L.S - part 1

Living with A.L.S - part 2

iving with A.L.S - part 2

Living With ALS – Sandy Stuban

Living With ALS – Sandy Stuban

Living with A.L.S Peggy; since 2008

SOLUTIONS TO ALS CHALLENGES 2010

SOLUTIONS TO ALS CHALLENGES

The purpose of my blog is to be of some help to others who have the same or a similar disease.

It is already more than four years ago that I was diagnosed with ALS.

But first, let me tell you how the Lord has blessed me with a flood of blessings, most of which I did not expect to be able to witness. In the past years, we could experience the joys that four  healthy grandchildren were born, our youngest daughter was married, we celebrated our 40th wedding anniversary, and that the Lord continues to provide new blessings every day.

The Lord has given me peace and contentment in my illness, trusting in His finished work on the cross, done for me! He also gives me joy and happiness each day.

The Lord is my source of strength, and if you too have ALS or some other terminal disease, you will be happy to know that there is a Saviour who can save you from your sins, pay your debt of sin for you, at no charge to you. His name is Jesus.

Can you live, and die in peace and face Him then, if you reject Him now?

Where can you find out how you can be saved and find happiness and peace, even now, during your illness, and after your death?

click here

The ALS journey is usually one of a rapid physical deterioration, leading to total paralysis and death. How wonderful it is not to have to make this journey alone, but to be cheered and sustained by my dear Lord and Saviour!

“Christ alone is our salvation—
Christ the rock on which we stand;
Other than this sure foundation,
Will be found but sinking sand.
Christ, His Cross and resurrection,
Is alone the sinner’s plea;
At the throne of God’s perfection,
Nothing else can set him free.
“We have all things, Christ possessing;
Life eternal, second birth;
Present pardon, peace, and blessing,
While we tarry here on earth;
And by faith’s anticipation,
Foretastes of the joy above,
Freely given us with salvation,
By the Father in His love.
“When we perfect joy shall enter,
‘Tis in Him our bliss will rise;
He’s the essence, soul, and centre,
Of the glory in the skies:
In redemption’s wondrous story,
From the Cross unto the Glory,
Jesus Christ is all in all.”

poem taken from article:
Peace with God through the blood of Jesus.
William Reid; London England, 1860
see link above

Obviously there is a difference in development of the disease for each person. Let me briefly outline my progression. My first problems were backpain and weakness in my arms followed by shortness of breath. Use of the BiPap started very soon after diagnosis, and rapidly increased to full time use within about 2 years. My BiPap settings are currently 16/6 with 14 breaths per minute minimum.

Today I can no longer stand or walk or sit in a regular chair. Basically I have reached a state of total paralysis with the following exceptions: I am able to eat and drink normally and chew my food. My speech has weakened substantially but is still quite audible. My neckmuscles have weakened so I need support to hold up my head. I can lift my arms a little bit and am still able to use my right hand enough to control the joystick on my wheelchair.


I am in my wheelchair all my waking hours. My wheelchair has adjustable power legrests, backrest and seat. Having these options allows me to adjust the chair many different ways so that I do not tire because I am not confined to one position.

On the wheelchair an extra battery has been mounted to supply independent power to my BiPap machine which hangs in a net off the back of my chair. This means that during the daytime I am never connected to an electrical outlet, and can take my wheelchair for a ride to the park or go shopping with my wife. Because we have a wheelchair accessible van we can basically go anywhere. My wife drives the van. My travel is limited by the fact that I need a lift to use the washroom facilities.

Since I need breathing support 24 hours a day I have a second BiPap machine beside my bed that is plugged into a regular outlet. For me the key factor in being able to use the machine all day and night is that I have several masks:

For daytime use I have a nasal mask that consists of two slender tubes going into my nose, providing air. This is not claustrophobic and allows me to speak, drink and eat without taking my mask off. (I can do no longer than approx. 1 minute without breathing support).
Here is a link to this mask: http://www.directhomemedical.com/masks-cpap-bipap/nasalaireii-nasal-cannula-mask-cpap-bipap.html

For nighttime use I have a Resmed Mirage Liberty mask: http://www.cpap.com/productpage/2513

and for the last week or so I have been trying out a new full face mask at night (Respironics Fit Life):
http://www.directhomemedical.com/masks-cpap-bipap/fitlife-fullface-cpap-mask-respironics-mylife.html

This mask takes a little bit of getting used to since it covers my whole face. The reason for considering this one is that the Resmed mask above often leaked at night and would set off my alarm on the BiPap. I did try other full face masks but the skin on the bridge of my nose would always break down.

I have a second machine available as a backup and an extra battery. I don't have any choice whether to use the BiPap or not so that I have resigned myself to having this beautiful thing on my head all hours of the day and night. All my friends and relatives are used to seeing me this way and would be shocked if it was not there.


As you will see below there are lots of problems to address when you have ALS. For the benefit of those who have ALS I provide a solution for each problem, and I am, below, also providing a list of my present equipment and its use.

TRANSPORTATION

WHEELCHAIR*

Some new developments have taken place. Since I can no longer use arms or legs nor independently sit up, I have a new wheelchair with power elevating leg supports as well as a power back and seat. It has been custom fitted, and is quite comfortable. I am in it all my waking hours. This chair allows me to change my position and so prevents my back from hurting and ankles from swelling. I have some remaining motion in my right hand, just enough to control the joystick of my wheelchair.




HANDICAPPED WHEELCHAIR ACCESSIBLE VAN

October 2008

We purchased a used (fully automatic) handicapped accessible van with a power ramp so that I can travel.



RAMP

I have a fold up eight foot metal ramp for use in accessing buildings with one or two steps.

COMMUNICATIONS

PRAYER


The Lord is my hope and comfort every day. He is good and I praise Him for His lovingkindness. He gives me peace and trust in Him because He has paid for my sin through His suffering on the cross for me, so that I may go free! He first loved me so that I love may love Him in return. He caries my burden so that every day is a joyful day, remembering His grace and mercy.



EYE GAZE CONTROLLED COMPUTER

Because I have difficulty typing, I now have a new Eye gaze computer (MyTobii system). In due time I will be able to type and run programs by gazing at a designated spot on the screen. The computer has no mouse or keyboard, and consists of a screen only. There is a learning curve to be able to efficiently use the system. I am training by playing tic-tac-toe and chess. The length of time you gaze at a certain spot determines if the action is performed. This time can be set to your preference. If you set it very short you will have more letters on your screen than you know what to do with, if you set it too long you will be gazing very long before finally the computer decides to react. You can have the computer speak any words you "type" so that you can alert your caregiver to your needs and respond to questions. The system will allow you to read and write e-mails, go on to the internet, look at photographs, read the news, in short, do almost everything I would normally do on my computer. Without a system such as this, in the case of total paralysis, it may be almost impossible to indicate to a caregiver, for instance, when my nose is itching.


SPEECH AMPLIFIER*

My condition continues to slowly deteriorate. I am thankful for the "slowly" part. My speech is also deteriorating, and I now have an amplifier to better project my voice.



HEADSET FOR PHONE

For phone calls I use headphones with a microphone since I can no longer dial calls or hold the phone.


CALL FOR ASSISTANCE AROUND THE HOUSE

I have a wireless doorbell system. I keep the pushbutton at my side in the wheelchair or in bed.  The chime is portable and located in whatever area my wife is working (outside, basement, garage or main floor). This product is usually available at stores like Walmart.



FOR EMERGENCY TEXT COMPUTER VIA MSN TO CELL PHONE
When I need to communicate with Mary  I use text messaging via MSN on my computer to her cellphone.

BREATHING

SUCTION MACHINE*

This machine helps clear my throat when required. It is battery operated.



COUGH ASSIST MACHINE

This is used to help me in coughing since my lungs do not produce enough pressure.



BI-PAP MACHINES

These are provided by the Ontario Ventilator Pool and are the main tool for keeping an ALS patient alive, since lung function usually deteriorates rapidly. I have two RESMED VPAP III ST-A units. Since I need breathing support 24/7, it is essential to have a second unit for back up in case one unit fails. We use one unit attached to my wheelchair and run from a battery so that I can travel anywhere without needing a hydro connection. These RESMED units are very efficient and use very little electricity. My battery will provide power to the unit for over 13 uninterrupted hours of use, which means I can travel virtually anywhere without needing a hydro connection. When I transfer to my bed I start using the second RESMED machine which is plugged into an electrical outlet. The machines have the capability of using either battery or hydro. These machines also come with a humidifier.

OTHER ASSISTIVE TOOLS AND DEVICES

NECK BRACE

My muscles in my neck are starting to fail. I can no longer turn my head to the left, so if you want to speak to me stand on my right. Because my head is dropping on my chest it becomes more difficult for my BIPAP breathing machine to pump air into my lungs and also my swallowing is restricted. Solution: recline my backrest and for eating wear a support collar to support my head. Wearing this, I can also breathe easier, since my chin is not on my chest.



HOSPITAL BED

This bed has movable top, middle and bottom sections controlled by an electrical hand held switch. For a patient who has ALS such a bed is essential to avoid bedsores etc. since it can be moved at will by yourself.




HOYER LIFT*

The lift is used, with a sling to move me out of my chair into bed, etc, since I can no longer stand.



SHOWER COMMODE

This is an essential piece of equipment and I use it for showering every day.




EMERGENCY POWER SUPPLY*

I have a heavy duty battery on stand by at all times. This battery can be used when there is power failure (thunderstorms). To the battery is connected a power converter to 110 AC so that a very quick switch can be made by moving the power cord from the electrical outlet to the converter. Another back up is the battery attached to my wheelchair. Together they provide 26 hours of power in the event of a hydro failure.



*CHARGERS
Since most tools above are battery operated, all these batteries have to be recharged (mostly) overnight.

3 Blessed be the God and Father of our Lord Jesus Christ, who according to His abundant mercy has begotten us again to a living hope through the resurrection of Jesus Christ from the dead, 4 to an inheritance incorruptible and undefiled and that does not fade away, reserved in heaven for you, 5 who are kept by the power of God through faith for salvation ready to be revealed in the last time. 6 In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, 7 that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, 8 whom having not seen you love. Though now you do not see Him, yet believing, you rejoice with joy inexpressible and full of glory, 9 receiving the end of your faith--the salvation of your souls.

NYT's unfounded leap: Lou Gehrig might not have had Lou Gehrig's disease - Gary Schwitzer's HealthNewsReview Blog

NYT's unfounded leap: Lou Gehrig might not have had Lou Gehrig's disease - Gary Schwitzer's HealthNewsReview Blog:


This was one time when the headline was OK, but the story that followed had our heads spinning. "Study Says Brain Trauma Can Mimic Lou Gehrig's Disease" is a story that was troubling on a number of fronts. It reported on a study which at the time had not yet been published suggesting that some "athletes and soldiers given a diagnosis of amyotrophic lateral sclerosis...might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma."
To be clear - and please don't anyone miss or misconstrue this point - this is an important and fascinating area of research.
But the story did not exhibit the best of health/medical/science journalism.

1. It was based on a study of 3 people. (The ALS Association says there are up to 30,000 people in the US living with ALS.)
2. It stated, "Lou Gehrig might not have had Lou Gehrig's disease." (No evidence for this was provided. He also may not have been a great left-handed hitter. That may have been an optical illusion.)
3. It said this could "perhaps lead toward new pathways for a cure." (After a suggestive finding in just three people?)
4. The story later says, "The finding's relevance to Gehrig is less clear." (Hedging already after a bold earlier statement in the story.)
5. But just a few paragraphs later, the story says, "The new finding...suggests that Gehrig might not have had (ALS)." (Head spinning yet?)
5. The story dropped lots of big names - Gehrig, Stephen Hawking, Michael J. Fox, former NFL players Wally Hilgenberg and Eric Scoggins, Cal Ripken - in a jumble of claims, associations - or was it just plain name-dropping in order to make the story more appealing?
6. The story brought in "recent epidemiological studies" in soccer players and soldiers without one word about the possible limitations of such studies.
7. It went into detail that a historian or sports nut would love about Gehrig's football concussions or baseball beanings or fights with Ty Cobb. But all of this just fed the theory that was not supported by anything but guesswork and innuendo.

The story ends with a quote from a Gehrig biographer:

"Lou Gehrig wanted to know everything possible about his own illness -- he got to know his doctors, talked with scientists with obscure approaches, and volunteered himself as a guinea pig to find any way to combat the disease. He wouldn't stick in the sand and not want to hear about this. If he were around today, he would continue to have that same curiosity, and that burning desire, to help his situation, or to help others."

As we said earlier, this is important and fascinating research. So we don't think anyone should stick their head in the sand over this research either. But the story also didn't require any hype - the kind it received from the NYT.
Additional thoughts from Dr. Steven Atlas of Massachusetts General Hospital, one of our medical editors:

"This represents a small and interesting case series. The lowest rung on the clinical evidence ladder. It is a pretty big stretch to imply that Lou Gehrig may not have had ALS. To imply that one would need to know how common this is. One line of evidence is that NFL players may be more likely to be diagnosed with ALS than the general public. But it is also possible that given their occupational history, one may look for it more carefully. Another way would be to do a case control study. One could take individuals diagnosed with ALS and maybe age and sex matched controls to see if there is a history of prior brain trauma. For pathologists, one method would be to work to do postmortem exams on more patients with ALS to see if they had the pathological changes of ALS or recurrent brain trauma. One could independently get history of prior brain trauma to see if history and pathology line up. The bottom line as you mention is that this is an intriguing study. It is doubtful that such a study may lead to a "cure" unless one means that we seek to decrease brain trauma in the first place. As the article mentions well into it, we won't know whether Gehrig has ALS or not, but one can't help but surmise that he did have ALS until data shows that much of ALS is in fact a side effect of brain trauma. Finally, even if brain trauma is associated, it is possible that genetic factors that would lead to ALS are present in these individuals with brain trauma. Specifically, is it the severity of the brain trauma that predicts this? Or is it the genetics that dominate and the trauma is the straw that broke the camels back?"

Complexities that, despite the long word count, this story didn't address.

Veterans with Lou Gehrig's to get benefits - CTV News

Veterans with Lou Gehrig's to get benefits - CTV News:


The federal government announced Friday it would speed up support for Canadian veterans suffering from Lou Gehrig's disease, also called amyotrophic lateral sclerosis (ALS).


Veterans Affairs Minister Jean-Pierre Blackburn said in his announcement that "based on the latest medical research, our government has made changes so that veterans affected by ALS obtain the help and support they need and deserve faster than ever before."


He said the government has broadened the criteria to allow the ministry to accept applications for benefits from vets with ALS.


"I will also make the commitment to you in front of me today that these applications will be processed very quickly. Decisions will be rendered immediately," Blackburn said.
Veterans will now be able to receive disability benefits, treatments and home care support for their ALS, so that they can receive such things as adapted wheelchairs, medical resources, and housekeeping services.


Blackburn says it was the story of Gulf War veteran Brian Dyck, who publicly fought with the government for benefits for veterans with ALS, that led to the changes announced Friday.
Dyck died last Friday at age 42 after battling ALS for just over a year.


"Never again do I want to hear of a veteran with ALS who has expended his last ounces of energy fighting for the help he deserves," Blackburn told reporters.


David Cameron, president and CEO of the ALS Society of Canada, applauded Friday's announcement, noting that because of the progressive nature of ALS, some veterans were dying before their applications to Veterans Affairs Canada were processed.
ALS, or Lou Gehrig's disease, is a rapidly progressive and fatal neuromuscular disease that causes the degeneration of nerve cells in the brain and spinal cord; about 80 per cent of those diagnosed die within two to five years.
Some research has suggested that war veterans have higher-than-usual rates of ALS. Three studies released in recent years have shown higher incidences of ALS among veterans of the 1990-91 Gulf War, though other studies have not found such a link.
Some of the authors of those studies called for more research to confirm the cause of any possible link, including chemicals,  brain injuries, or other substances or activities.

Common Webcams Could Be Used to Continuously Monitor Your Vital Signs | Popular Science

By Clay Dillow  

Mirror Mirror on the Wall 

A new technology coming out of the Harvard-MIT Health Sciences and Technology program uses low-res cameras like those used in Web cams to measure vital signs, opening the door to around-the-clock monitoring of a person's most fundamental health indicators.

That first early-morning look in the mirror may soon tell you a lot more about your state of being beyond the simple fact that you look like you could use another hour of sleep. A grad student in the Harvard-MIT Health Sciences and Technology program has figured out how to use low-cost, low-resolution off-the-shelf camera technology to measure a person’s heart rate through imaging alone. The technology, which could soon also be measuring respiration rates and blood-oxygen levels as well as blood pressure, could make basic medical monitoring a continuous process throughout the day.

The system requires nothing but a low-resolution video camera like the one built into most laptop computers. Software identifies a subject’s face in the image and uses variations in brightness resulting from the flow of blood through blood vessels in the face to measure pulse rate. Tested against a physical sensor, the system was found to be accurate to within about three beats per minute. Ming-Zher Poh, the grad student behind the system, is now working on methods to extract other vital data via video image.

The ability to test for vital signs through a Web cam opens the door to all kinds of applications, most obviously in telemedicine. Rather than leaving the house when you’re feeling under the weather, you could simply sit down with a nurse via video chat and he or she could take your vitals and determine the best course of action. The non-invasive nature of the tech also makes it ideal for situations where a patient really shouldn’t be touched more than is absolutely necessary, like to monitor the vitals of a prematurely born infant or a burn victim.

But the more interesting aspect of the technology is it’s ability to be ever-present in our lives. Poh has already created a mirror with a camera embedded into it that displays a person’s pulse on the glass itself. Such a mirror could take a vital snapshot of a person each morning when he or she rises and again in the evening, creating a health profile rich in data that we usually only get when we go into the doctor’s office. Those who need more careful monitoring could use their computers or phones to monitor their vitals continuously throughout the day.
All that data could be continuously piped to health care providers in real time, allowing our doctors to get a far more complete picture of how our bodies are doing on a day-to-day basis. That could lead to better preventative care, fewer trips to the doctor, and reduced man hours spent sitting in waiting rooms. For health care systems the world over that are flat-lining because of uncontrolled rising costs, that’s a favorable prognosis.