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.
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?
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—
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):
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.
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
We purchased a used (fully automatic) handicapped accessible van with a power ramp so that I can travel.
I have a fold up eight foot metal ramp for use in accessing buildings with one or two steps.
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.
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.
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.
These are provided by the Ontario Ventilator Pool and are the main
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.
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.
The lift is used, with a sling to move me out of my chair into bed, etc, since I can no longer stand.
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.
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.