November 11, 2012
My arms, hands, and fingers have weakened to point that I cannot transfer from bed to wheel chair if I have to use my feet to take even the smallest step using a walker.  Therefore we startled using the hoyer lift to transfer in and out of bed.  Also the weakening in my hands is making it difficult to control my wheel chair.  So we are looking at different ways to control my wheelchair other than a joystick.

As care givers, RNs, and others ih the nursing care  industry come into our home, they marvel over how efficient and convenient our remodeling of our dining room and living room into a handicap facility turned out to be.  If we didn’t have this facility and Carole, my darling wife, to run it, I would be in a nursing home and not receiving as good of care.  I can’t do anything by myself.  When you lose control of your hands and fingers you can’t even scratch your nose.  But I can’t complain , God is more than meeting our needs right when we them.  Praise be to our Lord and Savior Jesus Christ who owns it all.

October 20, 2012
My neck muscles are becoming my major problem.   Imagine a heavy ball balanced on a weak vertical stick.    The default position is to drop down with chin on chest which hurts.   And I cannot hold my head up for very long.    I tilt my wheel chair back to use gravity to balance head without taxing my neck  muscles  which is tiring and I cannot breathe as easily without my bi pap.  Or I use a neck brace which tends to weaken my neck even more.  Anything that throws my head off balance will result in my head dropping in sharp pain.  I try to keep  my neck loose by turning my head in all 4 directions and that  does help and I do  it  often.  In bed I try to sleep with my head back more than when I am out of bed so as to keep my neck open to that position. But lately my neck is more painful at night.

I cannot hold my cel phone to use at all so don’t text me, and hands and fingers are so weak I can barely type with 1 finger on my left hand.  My right  hand  and arm is so weak  it is worthless.  I have trouble with moving my finger between the mouse left and right clicks.  In a few weeks I will have my custom power chair with my  Dynavox mounted with a camera to allow me to type with my eyes.

October 14, 2012
There is something I need to explain.  Part of ALS is that your emotions are on the surface, so when I get touched by  something I  can very easily break down in tears which can be misinterpreted as I am sorrowful for myself.  What touches me to tears is what people and God are doing for me to help me.

October 11, 2012
It is with great difficultly and discomfort that I am typing these words because my arms, hands and fingers have weakened to that extent.  We are preparing to have my Dynavox computer equipped with a camera so the pupils of my eyes can sync to allow me to type with my eyes.  I would still have to have someone to type my words into the blog.  We are switching from visiting nurses to hospice so as to get more help for Carole as she has been doing all my care by herself.  Our long term care policy has a 90 day elimination so all this counts towards that.   A  Hoyer Lift has been delivered as the day is fast coming when I will need mechanical help to get me out of bed to the bathroom, shower, etc.  Through all this, God is with us and is supplying all our needs through Medicare,  Insurance, relatives and friends.

September 24, 2012
I have 2 big problems . 1. my neck muscles are weakening so much that I cannot hold my head off my chest for very long.  2. my hands and fingers are weakening by the day which is reducing my ability to communicate.  The power wheel chair helps me keep my head up by tilting me back so to use gravity to keep my chin off my chest and Dave Dangenbring built a custom computer table that helps both problems, at least for the time being.  It is a struggle to do anything.

Life is getting harder.  I cannot do anything by myself which includes getting up from a chair, going to the bathroom, and walking with a walker.  In short, I cannot be left alone as if I fall I cannot get off the floor and it takes a least two people to get me on my feet again. Our handichapped bathroom and our wheel chair ramp are done.  Carole needs help caring for me so we are working on getting her in home skilled care for me.

September 7, 2012

The cough assist machine has helped a great deal t get up normal mucus and I use it daily.
My hands and fingers have been steadily weakening and it is very difficult to do most things if I can do them at all.  I can still 2 finger type but have to rest my wrists on something.  My fingers cannot pick up a pill, button a button or anything that requires precision or strength.  It is slow and hard for me to text and holding up a camera to take a picture is totally out.  My pleasure eating is complicated by my inability to manage a fork or spoon.

August 26, 2012
My body’s ability to handle normal mucus & phlegm is dwindling so we have added another machine called a “cough assist:.  Basically, it blows air into your mouth & then sucks real hard.  ALS patients years ago didn’t have all these devices to make things easier nor the medicare to pay for them, so I am very thankful for them.

August 11, 2012
I cannot feed myself with the feeding tube as my hands and arms are too weak and it requires a steady strong hand to do that task.  I cannot dress myself or get out of bed without help as my upper body strenght is weakenng.  My fingers are weakening also and I am down to two finger typing.
So if I didn’t have a willing Carole, I would have to go to a nursing home or have 24/7 care in my home.  What a blessing she is to me and I am a very fortunate man to have her.  (glad she took the part “for better or for worse – in sickness and in health” seriously 21 years ago)

July 29, 2012My upper body continues to weaken and my fingers do not have enough strenght to open a soda bottle.  But I can still type on a keyboard for which I am thankful because that is my speaking voice.

The feeding tube greatly simplified my life as not being able to chew or drink except in small sips was making mealtime a chore for both Carole and I.  The big thing is that I now get enough water in me on a daily basis which has helped with getting mucus and phlegm managed better.  But I now do what they call in ALS circles “recreational eating” which consents of things I like to eat but require little chewing.  Carole can grind stuff up too.

July 1, 2012

SPEAKING  I cannot talk anymore, so I have two computers that I can type the words & a voice program will speak out loud.  I also have a text to speech app on my smart phone which will also speak out loud that I use when I don’t have one of the computers.  And I carry a small pad and a pen for the old fashion way of writing it down.

EATING & DRINKING  I did finally consent to have the feeding tube put in, but not until after my 52nd High School class reunion on Memorial Day weekend and the Vahsholtz cousins reunion in Colorado Springs on June 21-25.
THE FEEDING TUBE IS A GOOD THING as it was a day long chore to try to get enough food and liquids in me by mouth as I cannot chew anything and I can only drink in small sips.  So now the day goes much smoother and I can indulge in what the ALS chapter calls “recreational eating & drinking”. (which includes a daily glass of beer)

DRIVING  After I drove my Lexus to Colorado Springs and back, I turned the driving over to Carole as I am experiencing increasing weakness in my arms and hands.  I promised Carole that I would not drive when I felt I was unsafe and putting her and others in harms way.  So, it was a very difficult decision to make as I have ridden shotgun in my own car with anyone for 50 years.  Plus I love to drive my Lexus, but I don’t want to wreck it either..

THE ALS IS MOVING ALONG  The up coming problem is that my upper body is being affected by the ALS first & I am rapidly losing strength in my arms, wrists,hands & fingers.  So I have upgraded all of our 5 computers to windows 7 & have networked them all together with wireless internet,  I have also included a wireless printer on the network.  Now any of the computers can be anywhere in our house  preparing for the day when I cannot roam the house at at will.  Several church friends and the local ALS chapter are helping us think through modifications to our house as my dear sweet Carole is determined to care for me here no matter what.  So, we are working on a realistic plan for modifying our home with out tearing it up with modifications that will someday need to redone.