Journey to Health

Video update - New chair

2011-01-14T09:08:00.005-08:00

Here's my new chair, and a bit of an update. More can be found on my Facebook profile.

Enjoy, thanks for watching! http://www.youtube.com/watch?v=wfACNdu6wiI

2011-01-14T09:08:00.003-08:00

2011-01-14T09:08:00.001-08:00

Calf Measurements

2010-12-22T13:53:00.000-08:00

Wed 12-22-10 Right 13 3/4" Left 12 1/4"

Constipated & weaker

2010-12-20T11:45:00.000-08:00

I was quite constipated this morning, but finally was able to do my duty. Debbie boiled up some prunes for me, and gave me a stool softener.

I've been noticeably weaker for the last week or so, specifically in drinking with my right hand, and getting up out of my Jazzy. I've mostly needed help out of my chair as of late, and needed to use a straw for drinking, because I can't hold up a cup, even a plastic cup to rinse my mouth out. Also, I have had to get help shaving over the last week.

Personally, I believe that satan is taking his last opportunity to try to discourage myself and Debbie. I'm not about to give into discouragement, I'm staying in faith and building up more faith as I await my full healing.

Simple Love - by Daniel Silva

2010-12-16T11:18:00.000-08:00

Simple Love - by Daniel Silva

The Key to Divine Health

2010-12-14T06:06:00.000-08:00

I haven't posted in a while because I've been working on my faith in God. My faith is getting stronger, as I've been listening to a servant of God by the name of Curry Blake, who teaches the Divine Healing Technician course all over the world. Through this system of teachings, they are seeing 30,000 divine healings a month.

Debbie and I also attended a Healing Room in University Place, WA to receive prayer for our marriage and my physical healing, on Dec 8th, nearly a week ago.

I am starting to see small increases in strength, after seeing a rapid loss of strength over the last year. The initial healing, physically, began on Sept 1, what I consider my D-day.

God spoke to my heart several times this year, to assure me that with His help, He would see me through this health crisis. On January 14th, I received a preliminary diagnosis of ALS. One of the VA attending medical people, I believe a medical student at the U of WA, was teared up when the preliminary diagnosis was given. I sensed in her a deep sorrow for me, for my bleak future from her perspective. However, as I stood there, I had a perfect peace from God the Holy Spirit. Again, in early August while I was in CA on vacation, during a very intimate time of worship, God spoke to my heart that this illness would not lead to my premature death, but would be for the Glory of God.

Here are several links that I have used over the months to build up my faith. God also spoke to my heart recently that I would not be needing my leg brace by Christmas of this year. I'm looking forward to working my strength out over the next weeks, and witnessing His miraculous strength through the Holy Spirit. To God alone be the Glory!

http://www.jglm.org/

http://www.revivalorriots.org/jglm-dht

Video series on Divine Healing: http://jglm.blip.tv/file/1634408/ and here

http://healingrooms.com/

12-24-2010 added a local Healing Ministry, Gene Wilkerson's Flames of Fire

http://www.biblegateway.com/

http://www.facebook.com/profile.php?id=100000589081098&ref=ts

Prophetic Message for the NW: https://healingrooms.com/index.php?src=region&l=us6

VA Telenurse conversation on leg issues

2010-11-21T07:04:00.000-08:00

Calling 800 329-8387, option 4, then option 3, option 3 again

7:17 am told nurse symptoms, her "program" says I should be seen in the next 2 to 8 hours. VA Emergency in Seattle. I will insist on tests found in this post: http://www.alsforums.com/forum/do-i-have-als-als/8176-deep-vein-thrombosis.html

doplar ultrasound

angiogram

8:10am holding off on ER, see previous post.

Continuous problems with left foot

2010-11-21T06:04:00.000-08:00

I'm listing here stuff I find to alleviate pain I'm having with my left foot. Currently using booties issued by VA on Friday, Nov 19th 2010

11-21-10 Found this compression boot at this site: http://www.c-boot.com/index.php?langId=11

Technology behind this is http://www.c-boot.com/index.php?categoryId=34984

This is Drugs.com page on DVT, Deep Venous Thrombosis: http://www.drugs.com/cg/deep-venous-thrombosis.html

Another link on DVT: http://www.vdf.org/diseaseinfo/dvt/index.php

Symptoms of DVT: http://www.vdf.org/diseaseinfo/dvt/symptoms.php

I need to call the Nurse Line @ the VA today!! This is getting ridiculous.

ALS forum post on ALS patient with DVT: http://www.alsforums.com/forum/do-i-have-als-als/8176-deep-vein-thrombosis.html

7:41 am Debbie just reminded me to contact Judy Ozuna Certified Neuroscience RN (CNRN) @ 206-277-6614 the Nurse Practitioner we saw on Tuesday @ my Neurology appointment if the booties the VA issued on Friday did not help.

7:55 am left voicemail with Judy Ozuna. Will wait to hear back from her (Monday) before heading to ER or Urgent Care, since this has been going on for months.

Getting back to Restless Leg Syndrome (RLS), found this link: http://helpguide.org/life/restless_leg_syndrome_rls.htm It could be this, but the coldness and purple skin indicate to me it could be something more, definitely a lack of circulation.

9:00 am found this home remedy for RLS, Lori Strand suggested this on Deb's FB.

Did a google... fresh bar of Ivory works fine....

http://www.peoplespharmacy.com/2005/12/07/soap-under-the/

Healing of a lame man

2010-11-19T02:39:00.001-08:00

Refer to teaching by Curry Blake

5 So the man gave them his attention, expecting to get something from them.
6 Then Peter said, “Silver or gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, walk.”7 Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. 8 He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. 9 When all the people saw him walking and praising God, 10 they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him.

Peter Speaks to the Onlookers

11 While the man held on to Peter and John, all the people were astonished and came running to them in the place called Solomon’s Colonnade. 12 When Peter saw this, he said to them: “Fellow Israelites, why does this surprise you? Why do you stare at us as if by our own power or godliness we had made this man walk? 13 The God of Abraham, Isaac and Jacob, the God of our fathers, has glorified his servant Jesus. You handed him over to be killed, and you disowned him before Pilate, though he had decided to let him go. 14 You disowned the Holy and Righteous One and asked that a murderer be released to you. 15 You killed the author of life, but God raised him from the dead. We are witnesses of this. 16 By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus’ name and the faith that comes through him that has completely healed him, as you can all see.
17 “Now, fellow Israelites, I know that you acted in ignorance, as did your leaders. 18 But this is how God fulfilled what he had foretold through all the prophets, saying that his Messiah would suffer. 19 Repent, then, and turn to God, so that your sins may be wiped out, that times of refreshing may come from the Lord,20 and that he may send the Messiah, who has been appointed for you—even Jesus. 21 Heaven must receive him until the time comes for God to restore everything, as he promised long ago through his holy prophets. 22 For Moses said, ‘The Lord your God will raise up for you a prophet like me from among your own people; you must listen to everything he tells you. 23Anyone who does not listen to him will be completely cut off from their people.’

24 “Indeed, beginning with Samuel, all the prophets who have spoken have foretold these days. 25 And you are heirs of the prophets and of the covenant God made with your fathers. He said to Abraham, ‘Through your offspring all peoples on earth will be blessed.’ 26 When God raised up his servant, he sent him first to you to bless you by turning each of you from your wicked ways.”

Luke 11 The Lamp of the Body

2010-10-28T04:33:00.000-07:00

33 "No one lights a lamp and puts it in a place where it will be hidden, or under a bowl. Instead he puts it on its stand, so that those who come in may see the light. 34 Your eye is the lamp of your body. When your eyes are good, your whole body also is full of light. But when they are bad, your body also is full of darkness. 35 See to it, then, that the light within you is not darkness. 36 Therefore, if your whole body is full of light, and no part of it dark, it will be completely lighted, as when the light of a lamp shines on you."

Healing Declaration

2010-10-28T04:08:00.000-07:00

The word of God has become a part of me. It flows in my bloodstream to every cell of my body, restoring and
transforming my body. The word has become flesh, for You sent Your word and healed me. (Ps. 107:20; John 1:4)

Since Jesus is Lord over my life, I forbid sin, sickness and disease to have any power over me. I am forgiven and free from sin and guilt. I am dead to sin and alive unto the righteousness of God. (Col. 1:21-22)

Jesus Christ bore my sins in His own body on the tree; therefore, I am dead to sin and alive unto the righteousness of God, in Christ Jesus, and by His stripes I am healed and made whole. (1 Pet. 2:24; Rom. 6:11; 2 or. 5:21)

Father, You have forgiven all my iniquities; You have healed all my diseases; You have redeemed my life from destruction. You satisfy my mouth with good things so that my youth is renewed as the eagles. (Ps. 103: 2-5)

Why We Walk

2010-09-14T08:44:00.000-07:00

http://www.youtube.com/watch?v=lsFQDIxcp40

Received call from Sue Duncan

2010-09-02T12:45:00.000-07:00

Prayed with her.

She wants to come over & meet Debbie

MAD AS HELL AND I'M NOT GOING TO TAKE IT ANYMORE!!

2010-09-01T06:44:00.000-07:00

Ephesians 6:10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God so that you can take your stand against the devil's schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God. 18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.

I list my religion on Facebook as liberal to conservative. That may confuse some people, especially people in the church. I'm switching over right now at this moment to my conservative hat.

This post is going to be long and winding I suspect. So if you don't have the patience to read it, then move on, but I've got to say it.

I've had maybe 12 hours of sleep in the last three or four days. There are promises in God's Word addressing sleep.

Psalm 4:8

I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety.

Proverbs 3:24

when you lie down, you will not be afraid; when you lie down, your sleep will be sweet.

Why is it that sleep evades me? Why is it that my body is afflicted with this disease? Is this disease from God? God's Word says to me this:

John 10:10 The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.

God has spoken to me in the recent past, specifically when I was on vacation in California. I had nights in the condo in California where he would wake me up in the middle of the night, I would listen to and meditate on music that was speaking specifically to my spirit. After a couple nights of this, He specifically spoke to my heart that this disease was not unto death, but for His glory!

I was having a mountaintop experience with my maker! Not only is He my maker, He is THE lover of my soul, my all in all, my healer, my Lord, my provider, my everything!!!

I believe that the physical issues that I am experiencing are something that satan has afflicted me with, but the purpose of it in the long view is to expose him for who he is, and to reveal not only to the church, but to the unchurched, the glory and power of God.

I started off this post with a quote from God's Word, that I really don't understand at least experientially. The Lord has also spoken to me that the physical issues that I'm experiencing are a manifestation of the spiritual battle that I am in.

I'm going to end this post with a prayer. I am mad as hell!!! And it's not at God!!

I believe his Word is true!! The original text of his Word is inspired by God, it is not merely man's thoughts written down.

2 Peter 1:21

For prophecy never had its origin in the will of man, but men spoke from God as they were carried along by the Holy Spirit.

Father, please forgive me. I have wandered from your Word. I have let the world, and the cares of this world, dilute your Word in my mind and soul. Your Word says that the spirit of God dwells in me.

Romans 8:9 You, however, are controlled not by the sinful nature but by the Spirit, if the Spirit of God lives in you. And if anyone does not have the Spirit of Christ, he does not belong to Christ. 10 But if Christ is in you, your body is dead because of sin, yet your spirit is alive because of righteousness. 11 And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies through his Spirit, who lives in you.

Let this revival that everyone has been waiting for start in me. satan, Take your hands off of my family. Take your hands off of my church. Take your hands off of those who do not know God, and God has called.

Father God, Open the eyes of those you have called into your kingdom. Remove the darkness and the veil that keeps us from knowing you intimately.

Ephesians 1:18 I pray also that the eyes of [my and] your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, 19 and his incomparably great power for us who believe. That power is like the working of his mighty strength, 20 which he exerted in Christ when he raised him from the dead and seated him at his right hand in the heavenly realms, 21 far above all rule and authority, power and dominion, and every title that can be given, not only in the present age but also in the one to come. 22 And God placed all things under his feet and appointed him to be head over everything for the church, 23 which is his body, the fullness of him who fills everything in every way.

Let it be so. Amen and Amen!!!

Come Lord Jesus!

It's Time

2010-09-01T00:20:00.001-07:00

Audio is here

IT'S TIME LINDELL COOLEY LYRICS

It's time for the dead and gone

Time for the broken ones to live again

It's time time for the dead to rise

Time for the wings to fly to live again

I can hear the calling

I can hear the sound of rain

Over the mountains and over the valleys

I hear the calling it's time

It's time for the dead to sing

Time for the walls to ring

With the songs of freedom

It's time for the numb to feel

Time for the wounds to heal

With the songs of freedom

It's time time for the tide to turn

Time for our hearts to burn with a desperation

It's time it's time for a sacrifice

It's time that we paid the price for our generation

Over the mountains and over the valleys

I hear the calling it's time

It's time for the dead to rise

It's time for the wings to fly

I hear the calling it's time

It's time for the numb to feel

It's time for the wounds to heal

I hear the calling it's time

It's time that we paid a price

It's time for a sacrifice

I hear the calling it's time

Over the cities and all through the nations

I hear the calling it's time

It's time for the dead to rise

It's time for the wings to fly

I hear the calling it's time

It's time for children to return home

It's time for the prodigals to come back

I hear the calling it's time

It's time to break down the walls

It's time to see them all fall down

I hear the calling it's time

Over the cities and all through the nations

I hear the calling it's time

Killing me softly...

2010-08-31T01:50:00.000-07:00

with toxic chemicals. There was a new air freshener in our hallway, it's been bothering me all week. It was Fabreeze Home Collection Green Tea. It's gone now, but it aches my heart to see Debbie have to go through yet another nice thing tossed out for my health.

Here is some information on toxicity of these types of products.

Swollen foot issue

2010-08-30T18:01:00.000-07:00

Karen Sorensen, sent me a message in Facebook earlier today in regard to my picture of my foot that posted yesterday on Facebook. She was concerned I might be a blood clot.

I called the nurse practitioner at the VA hospital, and she advised me to go into Urgent Care. Debbie took me in and we got it checked out this afternoon.

Long story short: no blood clot but I need to keep my foot elevated as much as possible. I got a prescription for some sort of a pressure sock that diabetics wear, but I won't be able to get that for three weeks. I may run into the drugstore before that time to get my own.

My new friend, Will Bandes, advised me earlier on Facebook about it being related to ALS, and we need to elevate it. He said the swelling would return once the foot is back down for a period of time.

So... I guess I'll have to get a laptop on the ceiling or something. So I can dictate these messages and updates. That will be interesting. I wonder if Lydia would loan me her laptop to do that?

She said no, oh well.

Health Report Update

2010-08-30T09:33:00.000-07:00

What can I say?

I'm getting hit on three sides to take into consideration natural remedies to address my health. My initial sense going into this disease (currently ALS, but also with a third bout of cancer cropping up), was to approach this with a natural healing point of view.

In my spirit, I know this is the right approach. Actually, I said I'm getting hit on three sides, but it's more than that. My sister Kathy is discovering the harmful nature of drugs, my sister Mary, has been saying this all along.

I've been drinking the juice called Nopalea based on the Sonoran Desert cactus, on and off for a little less than two months. Initially, it helped me in my left hand, to reduce the inflammation caused by the dying of motor neurons in my hand and arm. We went on vacation to California for 10 days at the beginning of August, and didn't take any with us. This is another one of those MLM's, so I don't like the idea of getting all the garbage e-mail, along with drinking the product.

Long story short: my health has continued to deteriorate, even though I've been drinking this juice again for a little over a week. The MLM people have all these great testimonies about inflammation reduction, but it doesn't seem to really address the root issues with ALS. I am on auto ship with this product currently to see if 90 days of drinking this makes any difference in the world at all.

I think my sister Kathy has a right. If I could get to the place where I'm just eating the right foods, I could reverse the effects of this disease or least stop in his tracks.

The dream I had the other night, actually confirm some direction for me. Just not for the body of Christ. If my wife and I could get on the same page and agree on some health direction that is not controlled by the American Medical Association, I may be able to make progress.

Right now I'm real tired and I'm tired of talking. And I just offended my wife. I am going to leave this video for your viewing pleasure. Here is the introduction for my sister Kathy put on her Facebook post.

Kathy Mangan Allen Check this woman out, she is very courageous to go against the pharmaceutical industry. This is information we all need, or at the very least we know and love somebody who needs this information. Please watch and listen and share. Thanks!

Pharma Rep Confession

www.youtube.com

Another ugly Nerological disease

2010-08-06T22:09:00.000-07:00

I found out today that one of my sisters had a sister-in-law that died of Huntington's Disease in her early 40's. God, deliver us from these afflictions!

Wells Fargo Donation account

2010-07-28T21:01:00.000-07:00

Account # 204 3532 866

Any Wells Fargo branch will accept donations. This account has been set up by Trinity Church of Pierce County for expenses above and beyond living expenses, such as roof work that we need to do. Please reference Trinity Church of Pierce County and Barry Mangan when making donations.

Thank you, and God Bless!

Tacoma Walk, September 25, 2010

2010-07-28T19:18:00.000-07:00

Time: September 25 · 9:00am - 1:00pm approximately

Location Lakewood, WA (Steilacoom Park)

Team Members:

Please sign up on the online application. Please confirm the amount you can support for, before you complete the application. This way I can track our total team goal progress periodically.

Key:

If I just get 25 walkers, virtual or on site, who can commit just $70 each in sponsored funds, our team would exceed the $1750 goal to help the Evergreen Chapter with their mission.

Team Name: Barry's Bunch

Location: Tacoma Walk

Go to:

http://web.alsa.org/site/TR/Walks/EvergreenWalk?team_id=175400&pg=team&fr_id=6407 and choose Join Team at the top of my roster, or the form can be found directly at https://secure2.convio.net/alsa/site/TRR/Walks/EvergreenWalk/381603682?pg=ptype&fr_id=6407

See http://web.alsa.org/site/TR?sid=4328&type=fr_informational&pg=informational&fr_id=6407 for information on volunteer support roles

Tacoma Walk - September 25, 2010

Walk Check-in: 9:00 AM

Walk Starts: 10:00 AM

Location: Fort Steilacoom Park

Distance: 2.5 Miles

Map: http://web.alsa.org/site/TR?sid=4350&type=fr_informational&pg=informational&fr_id=6407

Potluck Picnic for all the walkers in Barry's Bunch who are onsite after the walk!! Mangan family will be supplying hotdogs, buns & condiments. Please bring a desert, salad, or chips! Fun!!!

Detailed information updated as needed.

Living and surviving ALS

2010-07-28T16:26:00.000-07:00

Something I found on ALS forums, while looking up iPod touch text to voice hardware & software. Living with a tracheostomy and so forth. Will read when I get a moment, still haven't made a decision to go down this road. Most of daily activities I'm now putting on Facebook, will use this blog for things that are more shared in a journal.

http://www.lifewithals.com/

http://www.proloquo2go.com/resources/article/introductory-videos

http://www.proloquo2go.com/

Biting my lip & other symptoms

2010-07-08T12:25:00.000-07:00

I just woke up from a nap. Noticed when I was laying down that I'm starting to bite my lip at random times. It hurts. I'm thinking I may need a mouth piece to protect myself when I lay down.

Also, weakness in right arm, leg and foot are starting to affect daily activities. Just typing this out with right hand, the arm is already tired.

Swimming and stretching

2010-07-07T11:44:00.000-07:00

Nice time swimming @ Eastside pool yesterday afternoon. Lots of exercise & stretching. Range of motion is so much better in water. Would love to live on International Space Station. My wife is such a blessing, she stayed with me & held me up at times in pool. Thank you, sweetheart!

Nasty Fall this morning

2010-07-07T11:43:00.000-07:00

Took a nasty fall this morning. Luckily I landed on the back of my head, on the carpet. I had slippers on, but no leg brace, and still managed to trip over my left foot. Thought I might have concussion, but looks ok. Cane bent, Debbie took me out for new cane & breakfast.

July 3rd Update

2010-07-04T08:43:00.000-07:00

If you consider yourself a "friend", PLEASE take the time to view this and listen. Thank You! Thank you to those that have. Please Share this, if you want to help us on our roof costs, by getting the word out. Thank You!

Wells Fargo Donation account name: Barry Mangan

Click Here for Video

Late June update

2010-06-28T12:56:00.000-07:00

I went swimming twice last week. They have a lift at the pool which was real nice. I can move more freely and stretch better in the water. It was a good experience. My wife needed to stay close in case I lost my footing, she also held me up as I swam on my back.

The VA came through with 80% compensation, which will allow us to keep the house payments going.

I took the 2 younger girls bowling. We took the bus to the Proctor neighborhood. I didn't bowl. The bowling alley had stairs, which were a bit difficult.

Covering All the Bases

2010-06-16T12:54:00.000-07:00

On June 19, 1939, on his 36th birthday, doctors at the Mayo Clinic diagnosed Lou Gehrig with amyotrophic lateral sclerosis (ALS). Although his baseball career was cut short by ALS, Lou Gehrig is remembered as one of the greatest and most inspiring sports figures ever. Lou’s baseball career and his life, shortened by the disease that would ultimately bear his name, was filled with awe-inspiring courage, unselfishness and gratitude in everything he did.
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Lou’s legacy of courage and determination helps to inspire thousands of people who are diagnosed with ALS each year. Honor Lou’s legacy by supporting the work of The ALS Association. Participate in the Covering All the Bases^®Hitting Challenge as part of 4♦ALS, Major League Baseball’s initiative honoring Lou’s memorable and touching “Luckiest Man” speech made on July 4th, 1939.
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If you have already participated, thank you! You have provided tremendous hope to those living with ALS by supporting our critical patient service programs, cutting-edge ALS research, and advocacy efforts on Capitol Hill.
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Commemorative thank you gifts are offered to donors based on their level of giving.

Honesty with Life and feelings

2010-06-15T05:36:00.000-07:00

First off, I apologize for the heavy nature of this note.

I checked my Facebook yesterday to find I had a niece and a wife of a nephew concerned about me, and wanting to know how I was doing. The interesting thing is, both of these women are wives of active duty service members, one who's husband is currently deployed in a state in Southwest Asia. What is very ironic, is that both these women, who only know me me through my brother or sister, are able to reach out to me over the miles, to love me and my family, despite their own circumstances. I love you both!

Anyway, yes, I've been a bit on the depressed side. 2 Sundays ago, I stayed in bed to get some extra sleep rather than go to church. My energy level and strength has been at an all time low. My left hand is quite swollen, as nerves continue to die. I finally took off my wedding ring 2 days ago before my ring finger swelled too much to remove it. My wife Debbie now wears my wedding ring and hers. I had some fleeting thoughts and words about using the Physician aided suicide law a couple of days ago also. Debbie quickly cut in and rebuked me thinking that way.

Before you judge me as complaining, please know that David, Job and Jeremiah have plenty of examples in the Bible. These men were honest with their feelings. In David's case, he always followed up complaining sessions with praise. I hope I can come to that place with my own emotions soon.

I witnessed my daughter Lydia's ceremony celebrating 3 years of hard work at her middle school yesterday afternoon. I was so proud of her standing up on stage giving a short speech. It was obvious that her delivery of the speech was done very conscientiously. Some thoughts briefly entered my mind during the day "Will I be alive to see her graduate High School in 4 years?"

I want to leave this message on an upbeat note. Our church has opened an account at Wells Fargo bank, in my name, Barry Mangan. Funds from this donation account will go toward home accessibility, home repairs such as a roof replacement, and medical treatments not covered by VA or Medicare. Any amount can be given at any Wells Fargo, and is very appreciated. Part of my depression is a natural result of my role as breadwinner being removed, and unfortunately I'm depending on my larger "family" for help now.

Also, the VA will be compensating me at 80% to start, which is good news. This will supplement my Social Security, and be able to meet our current mortgage and bills without further raids on my depleted IRA account.

So, in the end, I do praise God for His provision, and love. That He would bring me a glad heart continuously, and you as well. Thanks for reading :-)

Kickoff Meeting for ALSA Walk Tonight

2010-06-02T15:57:00.001-07:00

http://www.youtube.com/watch?v=RBi8wvsvz_s

Here's the link to my event on Facebook, open to the Facebook public. Click Here.

Details if you're not on Facebook - please contact me @ bsm8286@gmail.com

Time/Date

7:30pm Pacific

Church Meeting on opening Donation Account

2010-06-02T15:27:00.000-07:00

Please view video. Thank you.

New benefit flyer completed

2010-05-16T23:51:00.000-07:00

Deb just finished a new COMBINED flyer. Click Here to access it.

Thanks, sweetheart. Goodnight. Facebookers can access it from my Links.

May 15th, 2010 Weekend Update

2010-05-15T13:26:00.000-07:00

Some information on acupuncture, and mobility status. Speakers or headphones/earbuds required.

Intamacy and Forgiveness

2010-05-14T08:25:00.000-07:00

Intimacy. Fear. Rejection and acceptance. Musing about my resistance to Facebook. It's such an open forum. Rejection, misunderstanding, come easily. I desire intimacy with my family, my wife, children, extended family. Yet, I am afraid of hurt. My hurt. Or hurting someone I love, or have yet gotten to know.

In the larger perspective, intimacy with God and each other is not possible without vulnerability. I need to accept rejection. I need to also be honest, and not be offended by others rejection of me. Misunderstandings are so easily come by, especially in such a large, diverse community.

I know I've heard this in a sermon or read it in the past.

The challenge is this:

Can I live in unconditional love?

Forgiving those who misunderstand me, or who don't relate to my view of the world. Accepting those same people for who God made them to be, His special, unique creation, loved by Him so much.

********** posted on my notes in Facebook as well **********

Quick Update

2010-05-14T01:42:00.000-07:00

Saw an acupuncturist for a consultation today in University Place. I have 3 VA paid sessions, 1st on Monday. If they improve L hand mobility, I will press VA for more.

Got back on Facebook very reluctantly today. I've come to see that if I want real friends, that I need to use it also as a tool. Turned off silly game apps, those annoy me to no end. Guess i'm old school. Made some nice contacts on FB today n tonight.

May is ALS Awareness Month (2nd notice)

2010-05-13T09:05:00.000-07:00

Please watch this video. It helps raise $ for ALS research. Let's do something THIS MONTH!!!

Thank You!! http://www.palmharbor.com/extremephn/video/

The show airs THIS COMING SUNDAY, May 16th. If you miss it, it will be available next week on either hulu.com or abc.com

http://blogs.ajc.com/georgia-high-school-sports/2010/05/10/greenville-high-football-coach-jeremy-williams-to-be-star-of-sundays-extreme-makeover-abc-tv-show/?cxntfid=blogs_georgia_high_school_sports

ALS, MND, it's the same. SPREAD AWARENESS

2010-05-13T04:06:00.000-07:00

http://www.mndasa.com.au/assets/MNDASA_Newsletter_Mar2010.pdf

My webcam if on is at http://mangans.myphotos.cc/

New Encouragement & Video

2010-05-13T02:56:00.000-07:00

Just when I was starting to get hooked on the lie that depression leads to (no hope, etc).... I chatted with a wonderful lady of 71 from Australia who gave me some great encouragement.

http://client1.sigmachat.com/sc.php?id=144320 is the chat page. Also met a young man from Montana, and another lady from UK.

Video is here.

I will go here more often when I feel low.

Acupuncture is helping out the 71 year old. I need to follow up on this.

G'night.

Playing Tennis on Wii

2010-05-03T10:50:00.000-07:00

I recorded this last night.

Just getting used to the new Webcam, thought I'd record how I really look when I'm playing tennis.

It's kind of lengthy though ;-)

Finally Home

2010-04-29T12:52:00.000-07:00

Listening to Pandora Radio, just listened to Finally Home by Mercy Me. I was meditating on playing golf with Jesus in heaven just prior to the song coming on...

Symptoms - very tired after playing a match of Wii tennis, 9 holes of Wii golf, and another match of tennis. Mucus is present pretty much every day. This Lazy-Boy chair that ALSA Evergreen loaned us is a Godsend!

I'm putting out a challenge for anyone that wants to play me in bowling, tennis, or golf on the Wii... cut out some time in your day or evening and come on over.

I wish I could lift both my hands in praise

2010-04-29T10:03:00.000-07:00

The Lord placed this song in my heart as I was waking up. It is one of my old favorites.

Finally found the song....

2010-04-28T03:52:00.000-07:00

The Overcome song that's been sung at church over the last couple months. Some people too busy to help me find this, but I found it this morning.

It is awesome!!!!!!!!!!!!

Watch and listen http://www.youtube.com/watch?v=6sjYWrpNoCs

and be blessed!!!!

Deb and my Walk Pages

2010-04-26T18:05:00.000-07:00

You can either join our walking team, or donate under Debora's or my url:

Debora

Barry

Barry's Bunch (Team page)

We have received a permanent loan of the following items from the Evergreen Chapter:

Lift Chair

Transport Chair

and our three younger girls have received backpacks full of items and books to help them understand this illness. We are very grateful for the short time we have known about the ALSA.

Thank You for your support!

If you would like more information about the Evergreen Chapter's Walk to Defeat ALS^TM, please contact Robin Hartman at The ALS Association Evergreen Chapter:

The ALS Association, Evergreen Chapter
Attn: Walk to Defeat ALS^TM
19110 68th Ave S
Suite H-105 Kent, WA 98032
Phone: 1-866-786-7257 * Fax: 425-656-1649 * robin@alsa-ec.org

Draw Me Close to You

2010-04-24T07:44:00.000-07:00

A couple of audio files below.

Having just watched "Avatar" at home last night, I woke up with a call to come back to my Source.

Part 1

Part 2

The important thing I am trying to convey is that we need each other deeply. Don't let life rob you of relationship. God first, each other second.

Walk to Defeat ALS (Tacoma)

2010-04-23T15:31:00.000-07:00

Here is an opportunity to either walk, virtually walk, or support my walk (even by transport chair if necessary).

Walk to Defeat ALS (9-25-2010) (sign up using that link)

For additional details, please visit the Walk home page

I appreciate all my followers, if you can help at all, that would be most appreciated. The Evergreen Chapter of ALSA has been wonderful to us!

The goal for team "Barry's Bunch" is $1750.

If I can get a team of just 25 walkers, at $70 in fundraising per walker, that would meet the goal.

May is ALS Awareness Month

2010-04-22T10:51:00.000-07:00

I sent out a "spam" of sorts to many people in my email address book a couple weeks ago about this. If you would like to support research for ALS, these are 2 excellent ways:

Evergreen Chapter ALS Association

ALS/TDI (Non-profit research foundation)

Thank you!

Update after a break

2010-04-22T00:15:00.000-07:00

It's really too late to update, my left hand is pretty dead. Deb and I took a break for 3 nights, driving down to Long Beach (WA). My last day for driving was the 14th. VA needs to assess my driving skills before they will give the ok to DOL to renew my license, which expired on my b'day, the 15th.

I've been a bit depressed, nothing too serious. Just some doubts if God wants me healed. I keep hearing "incurable, no one has a testimony of recovering from ALS", that type of thing. I need to get back to hearing from God, not being concerned about myself.

Sorry for not getting back to you all sooner, and giving some folks a scare when we were away. I'll try to status better next time we're away, without giving exact dates.

Good report on CT scan

2010-04-14T08:20:00.000-07:00

I met with the Oncologist in Seattle on Tuesday. There is no sign of growth in the nodules in lungs and liver, so at this point that is excellent news. I have a appointment in July to follow up, but the doctor indicated a re-scan wasn't necessary for that follow-up, he wants to see how I am doing with the ALS at that time.

Speech and Physical Therapy update

2010-04-12T21:11:00.000-07:00

Had both speech and PT today. My swallowing is still pretty good. The dry mouth has improved. The therapist did a baseline on my speech today, ans will be evaluating it in a month. I sound very understandable, just a few issues with sounding out S sounds.

My strength in left leg and arm were noticeably better than the last time at PT. I attribute this to daily communion, also my meatless diet starting April 1st may be a factor.

AA Motorcycle & Classic Car Benefit Flyer

2010-04-12T09:58:00.000-07:00

My sister-in-law has sent me this flyer for a benefit her and her husband are doing in July. The funds will go toward some house repairs that are desperately needed.

Flyer has been updated with donation information (06/16/10).

The flyer can be found here. Please distribute far & wide.

Our God is Greater

2010-04-11T08:15:00.000-07:00

This is another of those songs that every time it comes on the radio, I just start praising Our God. By Chris Tomlin.

Another busy week concludes

2010-04-11T05:03:00.000-07:00

Recap -

Taxes completed (Thursday) - this was latest we ever did our taxes.

Occupational Therapy on Friday - ramp for front of house is on order. Motorized chair needs to be coordinated with my primary Dr. Received a brace for left hand.

Meeting with Wes of ALSA for South Sound. He gave us a lot of good information. He will be loaning us a lift chair and transport chair.

I'm a bit worn out in my left leg and arm muscles. Auction for Grant Elementary was a lot of fun, had a great time, but lots of stairs. Had over 11,000 steps including stairs on Saturday. I need to be sure I don't overextend myself. Still smarting in left hand from 3 games of Wii tennis on Thursday.

I'm still believing for improvements in strength & dexterity, as I apply the blood & body of Christ daily in Communion. My mother reported yesterday morning a miracle she had at her church, a few months ago. Her communion cup was empty, without her drinking the juice. She verified with the server it had juice in the cup just before she was going to drink. She believes this to be a sign of my healing by Communion in the days to follow.

Song list for my funeral

2010-04-08T18:27:00.000-07:00

Hopefully not anytime soon.

Are You Washed in the Blood/I'll Fly Away

Power in the Blood

Nothing But The Blood (added 4-10-2010)

When We All get to Heaven

Standing on the Promises

'Tis So Sweet To Trust in Jesus

What a Friend we have in Jesus

How Great Thou Art

It is well with my Soul

Sweet Holy Spirit

Another Soldier Down

Overcoming sickness by the blood of the Lamb

2010-04-08T02:45:00.000-07:00

A worship song on Easter Sunday from the book of Revelations is what I woke up with on my heart just a little while ago. I had a nice communion supper with Jesus at 2am, nice & quiet, no distractions.

I'm going to be very bold, and declare to satan, that I am Overcoming by the Blood of Jesus, and my testimony, as well as the testimony of God's word, the Holy Bible.

I expect to see more gradual improvement in my physical strength over the weeks & months ahead. I am removing the fundraising icons for alternative treatments, as I do believe I have found it. Eureka!

To God alone be the Glory!

CT scan & slight physical improvements

2010-04-07T21:46:00.000-07:00

Long day today. CT scan in Seattle for cancer, lunch with Cyra & Matt, credit union to deal with an issue, back to Tacoma to pick up SarahLynn for ballet, Forzas to relax, pick up ballerinas and Lillian. Finally got home tonight close to 8 pm.

I'm able to now bend my left hand back slightly. Left leg also feels slightly stronger. Suspect that communion is starting to push back disease as I participate daily.

PTL !!!

Drivers License Renewal

2010-04-06T21:39:00.000-07:00

I went to get it renewed today. I need a Dr's ok before DMV will issue a renewal.

I have CT scan tomorrow in Seattle to see if nodules in lungs & liver have grown. Followup is Apr 13th to read the results. Pretty beat right now, I've done a couple runs for Deb and now need some sleep.

Having thick mucus the last couple days. This is a new symptom.

This is so like God

2010-04-06T18:43:00.001-07:00

This came in an email from my friend, Carol Brewster. Just as God was telling me to just rest in Him, and to trust in Him:

I saw a video today on ABC NEWS about a man whose favorite basketball team is - well I can't remember, but they are in the running for the final four - because I got distracted by his ALS - 10 years and still with his family!

The Lord brought you to my mind with this: "We are a doing people. We always want to be doing something. Every now and then someone will exclaim, 'Don't just stand there; do something!' In contrast, I think God is crying out to us, 'Don't just do something. Stand there! Enter a love relationship with ME. Get to know Me. Adjust your life to ME. Let Me love you and reveal Myself through you to a watching world; A time will come when doing will be called for, but we cannot skip the relationship. The relationship with God must come first."

- Experiencing God by Henry and Richard Blackaby, Claude King

Here's praying for your weekend together coming up. Carol

The Motorcycle Rally Fundraiser in July

2010-04-06T03:08:00.000-07:00

Proceeds are intended for us to use as we see fit, whether for medical bills or other needs. We have medical (except natural medicine) covered by the VA. One need we have is a roof, and it's underlying structure (fire damaged and jury rigged before we moved here in 1990).

The roof needs to be completely removed, and the roof structure completely replaced, then wood and tiling replaced. I will be getting some estimates for the work over the next few weeks, but anticipate it to be in the $20,000 neighborhood or better. I'd like to use the fundraiser to pay for a huge chunk of this job, as leaking is occurring in one bedroom sometimes making that room uninhabitable.

Final thoughts before I try to get some sleep....

I think I'm going to put some more audio out here. My left hand is just not able to do much typng, and it hurts like hell right now :-)

Bless all of you.... happy dreams, and goodnight. Barry

One of the symptoms of ALS is ...

2010-04-06T02:20:00.000-07:00

INSOMNIA !!

I'm trying to make this time productive. With hunt and peck speed.

I could curse the lack of steady sleep, but I choose to write my thoughts, my heart, inspirations, God whispering to me, so I can bless. Bless YOU, dear readers, for reading my journal, for loving me, for obeying the promptings you have to help where you see a need.

I have failed to mention 3 families that have gone out of their way to be a blessing to me and my family.

1) Christine H - single mom, 2 school age children. She has supported us since I was layed off Feb 2009 from a career in IT of over 25 years. Gifts of grocery cards, hiring me to do yard work to keep me busy and a source of extra cash. Taking my daughter SarahLynn literally into her own family, on weekend outings and play dates with her daughter. Giving Deb and myself dinner tickets to the upcoming school auction, which we had no plans to attend. Now both of us are looking forward with anticipation to this upcoming Saturday dinner and auction.

Thank You, Christine! Bless you

2) Cheryl & Rod, and their kids - This family has had their own health and financial issues, over the last 2 years. Yet, they look beyond their own comfort, their own heartache, to reach out to us Mangan family.

Thank YOU for a wonderful Easter gathering at your place. Thank YOU for organizing and inspiring your friends and relatives on the upcoming fundraiser motorcycle rally in July. I want to post the flyer for this event here on the website when I get a copy, if that's OK.

3) Maria - Thank YOU so much for taking the 2 younger girls over Spring break and allowing them to participate in the Musical Theater camp. They both will not forget the experience.

4) Many others, too many to name. You've watched our girls overnight so Deb and I can make an early VA appointment. You continue to take our girls in so Deb and I can get away for a few days. You've given us food, cash, grocery cards (Trinity Church & family). You've driven from Spokane over the winter, even when you were sick, so you could help wherever was necessary, then offered to house us this summer while we get our roof and underlying structure replaced. I've failed to mention many more, please know you ALSO are loved and appreciated.

Thank YOU all, each and every one of you. Bless you!

3rd Party exam & weight increase

2010-04-05T21:47:00.000-07:00

I've gained a pound and a half in a week. I would call that progress, in the right direction.

I was questioned & examined by a 3rd party MD today, so the VA can assign a disability percentage. It may take 2 to 3 months to start receiving VA compensation. For now, Social Security disability and savings are what we have to live on.

I'm beginning to atrophy on my shoulders, hips, and butt-ox, for probably at least the last 2 weeks, as well as continuing in left arm, hand, and leg. About an inch less muscle mass on left arm & leg compared to the right side. Right side having plenty of tremors & some pain. Lower left back aches quite a bit after walking or standing.

See amazing comments in post on Easter Sunday (just below). Our God is an Awesome GOD!

I'm gaining faith each day for a miracle. :)

Happy Resurrection Day!

2010-04-04T03:26:00.000-07:00

Lydia and I are back in Tacoma now, we had a wonderful time relaxing over in Spokane with my sister Carol. Carol had to work all week, so it gave Lydia and myself time to just relax around the house for the most part.

I was able to do some reading without interruption, some in the middle of the night. I'm reading "Eat My Flesh, Drink My Blood" currently, a book my mom sent me in the mail. There is a Spanish version on Amazon, but no English version there. After getting through the first 5 chapters on this teaching on communion, I want to commit to taking communion as often as once a day. The author has some awesome personal experiences she tells about, and I've only hit on the blood of Christ in the book so far.

My brother-in-law, Arturo, also has loaned me a book to read, which I will get to after the current book. It sounds like it is a good one too.

So far, the fundraising for alternative treatments has only one contributor (Thank you, Steve N).

It may be that God wants me to trust solely in a Divine healing, so He alone gets the glory.

Anyhow, I just wanted to wish everyone a Happy Resurrection Day today. Even though I'm hunting and pecking right now, with my left hand barely mobile, I rejoice in the saving work our heavenly Father has given me, His son Jesus, and thank Jesus for shedding His blood for me, for my healing, and so that I can partake of the Divine nature.

From Spokane

2010-03-31T08:16:00.000-07:00

I have an appointment to go over end-of-life paperwork with a lawyer at my sister Carol's work this afternoon. While this is very necessary, I would also like to pursue treatments to prolong my life. While I'm not in any danger of dying real soon, use of my limbs are becoming much more difficult.

To that end, I have started a fund to initiate natural methods to help detox my body. This fund is separate from household finances, and any treatments are not covered by the VA or insurance. If you can help at all, I would appreciate the support. Please see the right pane on this page for ways to give electronically.

Thank you!

Spring Break next week

2010-03-25T01:05:00.000-07:00

I'm going to go see my sister Carol in Spokane next week. Lydia will be going with me. I was gifted the ticket from a friend of the family, and we had enough miles for Lydia's ticket as well. I'll be doing some legal paperwork, wills and what not. Carol is very good at keeping me on task to get this done.

Thinking of Heaven

2010-03-25T00:43:00.000-07:00

Listening to Jim Brickman's CD on my mp3 player "Grace" that my wife bought me some few months ago when it was apparent I may have ALS.

It is very soothing music. It's been a rough day. This music is helping me to both grieve and praise. The 1st time listening through, I shed some good tears. Grieving for my wife and children mostly, I guess. I will miss them deeply if I should pass in the next few years. I love them all very much.

God gives me visions of gardens during these times as I close my eyes and rest. Gorgeous gardens, with sunshine filtering through. Weeping even now as I listen to "Jesu" from the CD. It's one of those piano pieces that touches the soul deeply.

A new symptom

2010-03-23T22:49:00.000-07:00

I've had a cramp come up on my right side of abdomen tonight. It's happened a couple of other times also.

Deb & I were up at UW Med center with Deb's mom in for more heart procedure today. It's been a long day, and I'm hunting & pecking. Left hand is nearly useless @ this point.

I had my first Pulmonary Function test today at American Lk VA. I need to get the results for this test posted to patientslikeme.com

New Look

2010-03-21T23:26:00.000-07:00

Fiddling with my blog, I found a template that I agree with more. Do you like it?
I also started a "Favorite Links", which you can find on the right column. I'll post links here that I want to refer to.

Busy week coming up. Church was awesome today. Thank you, faithful supporters :-) I love you all.

B

Social Security Disability Approved

2010-03-20T09:58:00.000-07:00

Praise Report!

Social Security called on Thursday, said they had approved my claim for disability. Surprisingly, my left hand is working good (at the moment).

Here's my first audio since fixing my audio links. More to come, now that I have it working.

Thanks for following this blog.

Bless you!

Lots to report

2010-03-20T02:13:00.001-07:00

But not a lot of time right now. I've fixed the links to the audio files in the below posts.

Will have some new posts shortly. Thanks for all your thoughts n prayers.

Barry

Tuesdays with Morrie

2010-03-08T11:35:00.000-08:00

Debbie and I watched this movie last night. It was referred to me by my cousin Su, whose husband David has ALS:

Tuesdays with Morrie

1999TV-PG89 minutes

When Mitch Albom (Hank Azaria) learns his beloved professor, Morrie Schwartz (Jack Lemmon), is dying with Lou Gehrig's Disease, he reconnects with his mentor and learns from him all over again -- but this time, they're studying life. Mitch might be a successful sports columnist and television host, but that doesn't mean he's aced his priorities. This made-for-television movie is based on the real-life Albom's best-selling book.

Here are some good quotes from the movie.

Working on Audio bugs

2010-03-06T14:54:00.000-08:00

I may have a bad audio player on the blog, but also Microsoft is changing the url for where my sound files are hosted. Some sound files may not work in the meantime.

Monday 3-8 - Update, still working on the audio problem. I need to re-host my audio files, will check with comcast when I get time.

Thursday - Filing for Social Security Disability

2010-03-05T01:30:00.000-08:00

I started the process of filing for disability. Also had a good talk with Lydia's ballet teacher. Please listen to this audio for details:

this fixed link is now working correctly as of 3-20-2010.

Audio of Wednesday

2010-03-03T23:20:00.000-08:00

L hand is tight, please play the audio file (link fixed 3-20-2010).

Meeting with Naturopath on Tuesday

2010-03-03T23:14:00.000-08:00

Debbie, Lillian, SarahLynn and myself met with Dr. Gary on Tuesday. Here is an audio of our meeting. (link fixed 3-20-2010)

Dr Gary's philosophy is to treat the cause of disease, which in his opinion is toxicity in the body.

It is very promising to me. The first test he would need would be a stool sample, in order to see what is going on in the gut. There is a good article on msnbc.com on that issue today.

I will need $275 to do the stool test. Deb is skeptical this process will be successful, so doesn't want to use family funds to go down this path yet.

I would like to research German medical studies also, before making decision to do this. Deb n me would need to agree, also, before proceeding.

Meeting with the Social Worker

2010-03-02T06:44:00.000-08:00

Debora and I met with James S, social worker yesterday afternoon. We filled out paperwork yesterday. More information here in this audio (fixed link as of 3-20-2010).

I'm having problems this morn with stiff left hand.

Speech Recognition information

2010-03-01T17:36:00.000-08:00

I found this on Eric Fox's blog that his wife is keeping up. A company called DynaVox is very much into making devices to assist the speech disabled to communicate better.

http://www.dynavoxtech.com/start/veteran/

Going to bed

2010-03-01T02:45:00.000-08:00

Going to bed:

Here is source on setting up audio... I'm becoming a nerd again ;-(

More support

2010-02-28T23:19:00.000-08:00

Great time with my Home group from church support group today. Everyone in the room is having their own struggles. Debbie was able to make it today, along with Patrick and the 3 younger girls.

The group ended the session laying hands on our family, and praying over us. You guys are awesome!! Love ya,

Barry

Verna and Paul Snyder - thanks for the meals coming our way. Please be careful, and take care of yourselves as well.

Paul Morris - a new friend, he will be caring for our yard. You are awesome, brother. We will have you and your family over for dinner as soon as we can get ourselves on solid footing, hopefully in a couple weeks.

Love you all,

Barry

Some tips from relatives

2010-02-27T17:57:00.000-08:00

HiMy cousin Leslie has given me some tips in an email:

***********************************************************************************

Hi again Barry & Debbie and Vivian.

Just called work; don't start until 11am. Delivering flowers isn't an exact schedule...Amen!

http://www.thickitretail.com/

http://www.alsa.org/als/genetics.cfm?CFID=5453306&CFTOKEN=c85cb86888218c9a-0AE0DCAD-188B-2E62-80329FA0D0FA0AAA

http://www.alsa.org/patient/default.cfm?CFID=5453306&CFTOKEN=c85cb86888218c9a-0AE0DCAD-188B-2E62-80329FA0D0FA0AAA

Start looking now for products for personal care especially a wheelchair accessible van. Believe me when I say it'll make the caregiver's life easier. Debbie will appreciate it alot. I just wish that Su could find one since David also has ALS.

Start shopping for a medical supply store now...get to know them and check out their policies and customer service. Ask for a catalog for home use. Being at home as long as possible is best for the patient to keep a positive healthy attitude.

Having the full family involved is important. Barry, I would not have changed a thing while taking care of mom her last 6 months. It brought us closer than I could ever imagined....even with all our personal problems.

See if the county has any services that can be used for home service. You may find that the VA may not cover everything. Our county visiting nurse program was a gift from God. They were there every 1-3 days as needed. More if necessary.

Keep walking as long as possible to keep muscle from quickly atrophying. However, for malls and other family outing that require long distance walking, get a power chair. I wish to God we had one for mom.

As my thoughts come through, I'll send them along. If at anytime ya'll want to talk, CALL ME please. However, if I get to bugging you, feel free to tell me to slow down.

Love to all,

Leslie
CornFlower Blue

I Love you, Baby Girl!
Alison 7/26/83 - 3/19/08

"Experience is a brutal teacher, but you learn. My God, do you learn." — C.S. Lewis

***********************************************************************************

From Su and David (cousin Su and her husband David with ALS)

Barry,

It was nice talking to you & Debora tonight, although sorry that it had to deal with the subject matter at hand.

I know that this next journey is going to be hard for you and your wife and kids, but hope that you can keep your spirits high and that you will be able to live as much that life can offer while you can. I sincerely hope you are able to make that trip to Alaska or Hawaii and take the kids with you. Unfortunately David's ability to do things was already restricted by the other medical issues he had, long before ALS actually took over his life, even though we did do some traveling to New Mexico and El Paso and Kansas to see his family whenever we could.

This was one of the documentaries that David & I watched and then we had our kids & spouses (who are much older than all of your children, with the exception of Cyra) watch the films together with us. The name of it was"So Much, So Fast".

http://www.pbs.org/wgbh/pages/frontline/somuchsofast/

We also watched a documentary on HBO called "Three Sisters: Searching For A Cure" . They also started The ALS Project

I tried to find a link to it, and although I couldn't find one that had an actual clip of it, here is a reference to it...

http://www.rideforlife.com/archives/000982.html

We also all read the book and later also watched the movie "Tuesdays With Morrie"

I couldn't find a website with a clip of it either, although found lots of references to it.

I'll send you a copy of the book, if you like.

I also started reading a book called "Learning To Fall", but I know there also is a film on it

http://www.themanwholearnedtofall.com/home.html

I read an article in one of the MDA/ALS that advised that when a person was diagnosed with ALS, they were given priority getting Social Security Disability and Medicare benefits, instead of having to wait or fight for getting it approved.

(David had already received his benefits a long time ago when he was recovering from the spinal cord cancer surgery) .

Apply for it right away, and once you get approved, hopefully that should help some with the finances you lost not being able to work now.

Our prayers are with you and your loved ones.

Keep in touch. Love, your cousin, Su

David's ALS has been going on since 2000 or 2001. His case is more like Steven Hawking.

Muscle Relaxant - baclosen - Rx

From brother Rohry:

If I have to spend extended time in bed or chair, recommends using calmoseptine ointment for bedsores. Use a big glob. Don't let it get out of hand.

My feelings on Naturopathic

2010-02-27T12:42:00.000-08:00

I rec'd a call from Dr. Keifer, in Lakewood. He has experience treating nueorologic patients, and not just watching them waste away & die. I can hardly use my left hand now.

I need Debbie to go with me to meet with Dr. Keifer. If not, there's not much left for my body to do but waste away.

Dr. Keifer will do a consult @ no charge (short consult). Need blu/grn algae, left hand is very bad right now.

More inspiration (Charlie Wedemeyer)

2010-02-26T13:31:00.000-08:00

Skipping around the Internet today, I found this story on Michigan State's website. Worth reading, if you have the time.

Amazing support is forming

2010-02-25T21:51:00.000-08:00

I've received cards, grocery money, phone calls, email cards, and emails this evening after returning from Seattle. God, please don't let me feel unsupported again (I had a very selfish week, feeling sorry for myself).

Cyra forwarded me this email from Bill Impey this evening:

*************************************************************************************

Got this from Pastor Bill today (my old youth pastor). Thought I'd pass it on.

I love you both!

Sorry to hear this Cyra. I like your dad. Let him know I'll be praying for him. My football coach was diagnosed with ALS in 1978. He is still alive & loves the Lord.

You might find his website helpful - http://www.wedemeyer.org/

The Charlie Wedemeyer Family Outreach is a non profit organization committed to helping ALS patients and their families by offering hope through raising funds for research & patient services, by raising awareness, and by way of example.

*************************************************************************************

Much more encouragement to report, will post as I have time, but need to give up the computer and get some sleep.

Deb has had a rough day, I was expecting the diagnosis (so was she), but so far my emotions are ok. G'night

Diagnosis for ALS

2010-02-25T14:29:00.000-08:00

I was seen today at the Seattle VA by a neurologist, Dr. G. M. , a medical student, and a pre-med student doing observation. The MRI I had last week showed no abnormalities, including no cancer in the brain.

So....

That pretty much left ALS as the diagnosis, based on my physical responses, and the EMG done a couple of Friday's ago.

Next steps are as follows:

A social worker with the VA will be calling me to get the paperwork started to help in a disability claim, and coordinating any other things that need to be worked, like modifications to the house, including a ramp.

I should get an appointment to test my lung capacity.

As far as the mercury theory of toxicity, Dr. M. said that mercury doesn't have a causal affect on ALS. I did have a blood test today, but that was for lead, not mercury. I may want to still follow up to get a test for mercury, as I'm still not comfortable with the amalgam fillings I have.

Inspiration for Today

2010-02-18T13:34:00.000-08:00

I was doing some browsing on the alsa.org website, and found this article about Nick Scandone. The article is a bit dated now, as Nick has since passed. He competed in the 2008 Paralympics in Bejing, getting a Gold Medal.

A related article in Sports Illustrated highlights Nick, and also Marin Morrison. The 2 of them are great examples of courage in the face of illness. It's quite a lengthy article. I had started to read it back in December when I was waiting in a doctors office, and just now read it through completely.

Even though I don't feel competent to be driving school buses at this time, I need to find an activity that I love, and stick to it. I can't just go away without a fight. If it's helping others with their computers, or doing research to find ways to relieve symptoms, or getting involved with other people that are suffering.

I still love to hike and bike... maybe just getting away for a couple hours a day in nature for the exercise.

Why Am I Striving?

2010-02-16T06:44:00.000-08:00

I had a very restful day yesterday, because it was a holiday I didn't go into work, and was able to take a long nap in the middle of the day.

I had my alarm set for 4am this morning so I could get into work by 6am. But when I woke up, I had no energy after my shower. I went straight from my shower to prayer.

The words from "Why are you striving" came to me as I sought God for wisdom about my bus driving job. In this quiet time, God was speaking to me to rest in Him. It's foolish to think that I can get up each morning at 3:30 or 4:00 am and have the strength and focus to drive a school bus full of kids.

I called in and let Robin the scheduler know that I wouldn't be in. My throat has also been getting noticeably constricted, my speech is more halting. I know I have good people praying for a full recovery, but I have to face reality also. It isn't wise to put kids in danger just because I want to work. My pride is no excuse to put other lives in danger.

I'll be asking for a medical leave today or tomorrow. I have appointments in Seattle this afternoon & tomorrow, so will work my LOA around those.

Deb and I had a good cry this morning. She isn't mad at God. I thought she may be. She is just so sad for me. Neither of us thought the symptoms would be progressing this fast.

Veterans Benefits, EMG, Emotions

2010-02-12T23:53:00.000-08:00

I started the day this morning going to the VA in Seattle for an EMG. My wife drove me there, we arrived early and were able to get breakfast in the Canteen.

The technician said I would be turning over several times, joking that it would be like being on a rotisserie. The EMG consisted of 3 different tests; a poke test with a military grade, medically advanced safety pin; electronic shock waves; and finally poking a needle in my muscles to pick up the electrical currents from my brain to my motor neurons. It took approximately 2 hours for the entire battery of tests.

This evening we watched "Pride of the Yankees", which in and of itself was rather boring due to it's age. Afterwards, Debbie and I found a documentary entitled "Indestructible" describing Ben Byers video journey through his ALS. WARNING - Viewer discretion advised - occasional language, depression, open surgery. However, toward the end, the author rediscovers his faith.

Debbie was very emotional through the airing of this documentary. She says the emotions were worse than when she watched "The Notebook". Deb and I then watched some more ALS related videos on YouTube.

I'm feeling a bit torn after watching "Indestructible". I've been very positive that I can beat this thing. But after watching the suffering in the documentary of Ben and others, I may be fooling myself. I still don't want to just roll over and give up..... far from it, I'm a fighter.

I found some news on the alsa.org website concerning VA benefits. It looks like ALS has been given entitlement as a service related condition by Congress, with accompanying benefits. In 2 weeks, I will see my neurologist in Seattle, who will have the MRI and EMG reports, and will be able to give a diagnosis at that time. Deb will be taking the day off again to accompany me.

Suffering in Perspective

2010-02-09T04:49:00.000-08:00

As I was laying down to go to sleep last night, thoughts of my day were still swirling around in my head.

I had been seen by the VA for an intake appointment in the morning, where they had assigned me a Primary Care Provider. The ARNP upon examining me and going over my medical history, assured me that if I felt I was falling through the cracks in my care by the VA, to please give her a call. I sensed a very caring person.

My afternoon bus run again had kids of varying physical, emotional, and mental handicaps. Yet I saw joy on the faces of some of these kids. From High School age to Elementary age. A High School boy in a wheelchair, who had the biggest smile for a stranger (myself). A young Elementary girl who had such joy for her father as we let her down the ramp at her home. Despite their condition, these kids were JOYFUL!

I was told on Sunday morning at church service that my Father God desired for my heart to grow through my own trials. He has put me with people every school day that are helping me to enlarge my heart, for Him and my fellow man. THANK YOU Father for working out all things for Your greater good!

Divine Appointments

2010-02-07T08:26:00.000-08:00

I believe that God brings people into our lives each and every day, for one reason or another, if we are expecting each day to be a new day in the Lord. Most mornings somewhere in the morning I sing out "This is the Day the Lord has Made", just to get me in the frame of mind and spirit to see each day new.

Friday morning, I drove bus for a lady that we had met through the ballet school that all 3 younger girls were in a few years back (Classical Youth Ballet). I knew I had seen her somewhere, but couldn't remember. As I drove her route, we got to talking about our kids, and it clicked. Stacey had given us her guinea pig during a tough time for her. Her daughter Melissa had gone on to dance for Evergreen City Ballet doing Clara for their Nutcracker. We caught up on our kids, and during the course of the morning, I was taken at her compassion for the kids that she cared for and transported to and from school, especially the wheel chair bound kids. At the end of the day, I started to see how this job of driving the Special Needs children was a ministry for the drivers, if their heart was into the kids as well as the driving.

Friday evening, my wife Debbie had a classmate and her boyfriend over to the house. Betty had cancer when she was younger. She had someone walk up to her in as bar, of all places, who gave her some colloidal silver, and told her "God told me to give this to you". She later was able to consolidate the cancer and have it successfully removed. She also told me that cayenne pepper killed cancer cells. I'm going to have to add these 2 to my list of possible ways to help out. Colloidal silver is also listed in the first link on Naturopathic remedies when I started up this blog again in January.

My brother in law, Rodney, changed out my front brake discs and pads on Saturday morning on our Ford Freestyle. I got to talking to Cheryl, my sister-in-law, who has some health challenges as well. She had tried cayenne pepper capsules, but couldn't tolerate the heartburn and burning, so tossed them out. I'm not sure how well I could tolerate them as well, hopefully I can get a small quantity to test it out.

Talking about testing out, that's all doctors (MD's) really do. If you watch the drug company commercials, they always say "Ask your doctor if such and such is right for you". The MD's of this land for the most part, are in the business of experimenting with the pharmaceuticals, on live subjects. No wonder health care costs are so high, this along with all the garbage in our environment and food supply. Don't get me on my soapbox now ;-)

Weigh in and Exercise Log

2010-02-07T08:20:00.000-08:00

I'm going to start tracking my weight here. It's been going down steadily over the last few weeks, from around 170 or 175 (normal). I was around 150 in High School when I played football in the early 1970's.

Date ........................................Weight

Sun Feb 7, 2010 ...............................153

Fri Feb 26, 2010 ...............................155

Sat Feb 27, 2010 ..............................152

Wed Mar 3, 2010 .............................151

Mon Mar 29, 2010 ...........................148

Mon Apr 5, 2010 ...............................149.5

Sun Apr 11, 2010 ..............................149

Exercise Log

Thu Feb 25, 2010 .............................9282 steps (2 days)

Sat Feb 27, 2010 .............................10764 steps (2 days)

............................................3 sets tennis, right handed (wii)

............................................2 sets tennis, left handed (wii)

............................................stretching calves, feet, quads, 3 lb weights

Mon Mar 1, 2010 ..............................11927 steps (2 days)

Wed Mar 3, 2010 ..............................15452 steps (2 days)

...........................................stretch band exercises

Thu Mar 4, 2010 .................................6244 steps

Fri Mar 5, 2010 ...................................7632 steps

Sat Mar 6, 2010 ...................................8033 steps

Tue Mar 9, 2010 ..................................9254 steps (2 days)

Tue Mar 9, 2010 ..................................Snowshoeing - 1.2 miles

Played Tennis on Wii several days, stretch band exercises, etc.

Wed Mar 17, 2010 ...............................Several exercises with stretch bands @ PT VA

Thu Mar 18, 2010 ................................approximately 7000 steps, stretch band on legs

Tue Mar 23, 2010 ................................7166 steps, stretch bands for arms

Thu Mar 25, 2010 ................................6504 steps

Tue Mar 30, 2010 ................................7624 steps (2 days)

Wed Mar 31, 2010 ................................9240 steps

Thu Apr 1, 2010 ....................................5920 steps officially, more in fact. Stretch band and stretching

Fri Apr 2, 2010 ......................................5000 steps approximately

Sat Apr 3, 2010 ......................................5495 steps, 3 matches Wii tennis

Sun Apr 4, 2010 .....................................7 matches Wii tennis

.........................................................4672 steps give or take

Mon Apr 5, 2010 .........................l.........5918 steps

Tue Apr 6, 2010 ....................................4552 steps

Wed Apr 7, 2010 ....................................8819 steps, stretching & stretch bands

Th Apr 8, 2010 .......................................4 matches R handed, 1 match L handed (3/5)

..........................................................5740 steps, stretching

Fri Apr 9, 2010 .......................................2 matches R handed, 1700 & 1600 competition

...........................................................10,358 steps, including stairs

Sat Apr 10, 2010 ............................11,596 steps approx, including stairs

Sun Apr 11, 2010 ............................3511 steps

Mon Apr 12, 2010 ...........................4607 steps

Tue Apr 13, 2010 ............................2917 steps, 5 matches Wii tennis R handed

Thu Apr 15, 2010 ............................14,678 steps (2 days), 30 minutes stationary cycling

My Girls on my heart

2010-02-07T08:07:00.000-08:00

I woke up this morning with the song "Cinderella" by Steven Curtis Chapman on my heart. He lost an adopted daughter in the last 2 years due to a tragic accident. I really don't know how much longer I have left, in the natural body.

All of my girls are precious to me, but I think that Lydia steals my heart as I muse about her dancing. She was born to dance, I think, and my sister Carol is sure of it.

I really want to beat this thing that is trying to take me before my girls have a chance to grow up. I'm sure that it is possible. But those thoughts go through my mind every now and then that I may not be able to beat it.

I think of my friend Pat McLaughlin (I hardly knew you, blessed brother). He is my inspiration to go before the Lord each Sunday morning at the front of the congregation. He passed away this past fall from a 5 year battle with prostrate cancer. He fought the good fight every day, never gave up hope, always a smile and the presence of God in his countenance. But in the end his body just could not keep up with the disease. I love you, brother Pat.

Busy Friday and Saturday

2010-02-07T03:17:00.000-08:00

I logged in 8.5 hours at Tacoma School District on Friday, after working over 7 hours on Thursday. I was able to come home for a short nap both days. Getting started early each morning requires that I take a break in between runs. I was able to work with a wheel chair bus on the morning run on Friday. It really touched me the care the drivers give the students who are not physically able to help themselves.

Friday afternoon I was needing to really stay focused, as I had awoken before 3am on Friday. As long as I can get a break between runs, I feel confident that I can still drive fine. I'm not sure how strong I can remain as far as moving wheel chairs, only time will tell. Friday morning, we had 2 motorized and 1 manual wheel chair, the motorized chairs don't need any pushing of course.

My left hand is stiffening up bad right now. Going back to bed.

CT Scan results

2010-02-04T21:07:00.000-08:00

My neurologist up at the VA in Seattle called me today. He's concerned with some nodes that have appeared on my lungs and liver, that could be related to the old two-timing kidney cancer. I'm a bit concerned as well. He scheduled an appointment up in Seattle for the 25th of February, 10am, the same day I have another appointment there at 4pm. I'm going to just hang out at Cyra's apartment in between appointments.

I'm training for the sub bus driver position at Tacoma Schools. The trainer said there will be plenty of work. I just need to be sure that my health starts looking better, to continue to work. Next week is pretty full of appointments, I'll drive around those appointments if I'm able.

I can still play tennis pretty good on the Wii.

Hands are stiff now, I need to take a break & go to bed, I need to be up at 4:30am. I'm also upping my dose of blue green algae, from 18 to 24 a day, will see if this helps energy levels, and I want to see those nodes disappear, in Jesus name.

Relief for stiffness

2010-02-03T12:32:00.000-08:00

I was feeling very stiff in my left hand this morning, and was having problems unbuttoning my pants when I needed to use the restroom.

I was at Marlene's Market in Tacoma, to pick up a few things (probiotics for the kids and I), and decided to look into getting some bulk green tea. They have it, organic gunpower and organic jasmine green tea. I bought 0.18 lbs of organic gunpower, and a couple of small sacks for brewing. Total cost - just over $5.

When I got home, I brewed an entire teapot of tea (the one that the water boils in), using just 3 heaping teapsoons of the tea. I let it brew while I showered and shaved, and after my shower, felt exhausted.

I'm now on my 3rd 12 oz cup of the tea, and after the first cup could really notice not only my hands getting loose, but my head becoming clearer and more alert. My left hand is starting to stiffen up now as I type, but I wouldn't even have been able to type this much without the tea. I'm also listening to some quiet worship music as I relax both mind and body.

Ezekiel 47:2 has a good word of encouragement on the herbs that God has given for medicine. I really believe God has given us everything we need to get healthy, and remain healthy. I for one, do NOT want to get on a drug regimen for this condition. That only produces side effects, and can do more damage than intended, masking the root cause. I need to do more reading from a book I was browsing through before the leaky gut symptoms started rearing their ugly head in 2007.

I just found this article in the News Tribune on a tea ceremony in Fircrest. You may have to login to the web site if it's archived. Some good Eastern culture, and mentions healing from different types of teas.

CT Scan and a job

2010-02-02T18:55:00.000-08:00

I went up to the VA in Seattle to have my CT scan, and it went fairly well. Patrick and I got up there before 9am, with a 9:30 appointment. The tech gave me a large drink with barium to drink, then told me to go down the hall to get an IV setup in my arm so that the contrast could be put in just prior to taking the scan.

I hope to get results for the CT scan pretty soon from Oncology. I have my next follow up for the kidney cancer (in remission) on the 16th at 1pm in Seattle, East Clinic.

I also had my orientation with Tacoma School district for Sub bus driver this afternoon. That went very well. I should be getting a call from the Bus yard to start driving with another driver, this should go on for 2 weeks, but with all my appointments in the next few weeks, it may take a bit longer.

My energy level is pretty good today. I played a couple matches of Wii tennis against the Wii when Patrick & I got back this morning, then took a nap before the job orientation. Left hand and arm are a bit stiff, especially after the CT scan. I still need to drink more water & green tea to flush out all the stuff they put in me for the scan.

Energy level down quite a bit

2010-02-01T14:02:00.000-08:00

I just got up from a nap. I really needed it. I was starting to get frustrated. I have a lot on my plate, and this doesn't even cover the upkeep of the house while Debbie goes to work and school. The printer needs ink again, it's expensive, but I can't do the refills anymore, and the refilled cartridges don't work very well.

I printed off the letter to my dad earlier and mailed it off. I also printed an application for a disabled parking pass, but it came out not very clear. I will try to fill up a cartridge when I get back from Lillian's dentist appointment and print another copy. The neurologists aren't in Seattle tomorrow, so I will bring the form to my primary physician next Monday at Lakewood VA.

I need to refocus, get off of my dwindling energy level and symptoms. I do need to record this, but also need to get the spirit of praise back in my heart, for this spirit of heaviness.

Lord, you are the Strength of my life, You are my Strong Tower, in You I take refuge.

Left arm more like a wet noodle

2010-02-01T11:04:00.000-08:00

Over the last 2 days, my left arm has been more noticeably weak, tired, and just hanging there. I washed up some dishes this morning, the crock pot I can hardly lift now. I'm having the girls do some extra chores that I had been doing, like garbage & recycling. I need to get Patrick to step up also on chores... Deb and I can't do everything.

Sore hands, hunting & pecking now. Keeping this short.

Blessings

I need to watch my eating closer

2010-02-01T06:28:00.000-08:00

I came home last night from shopping and visiting with Debbie, to scrumptious crock pot chicken, and packaged Rice-A-Roni with wild rice. It was delicious. Problem is, it's a bad combination (starch and meat).... so I noticed that I was having some problems with itchiness in both feet later as I went to bed. I've had some of this itchiness during the last week also, so I need to be more diligent with my diet.

I'm assuming that as my body is getting weaker, other areas that I assumed were under control, like my gut issues, will be cropping up again.

I've been really diligent to take my probiotic each morning before having breakfast, but probiotics and enzymes won't do it all. I also need to make wise choices.

Living by the Spirit versus the flesh

2010-01-31T21:26:00.001-08:00

There were a couple times yesterday when I really missed the mark.

I fell out of the Ford Freestyle onto my grass when getting out, and got frustrated for tripping over my cane with my right (good) foot. The only damage was I got a little muddy, and a bruised ego. But I threw my keys across the yard in frustration at being so clumsy.

When I was playing tennis left-handed on the Wii, Lydia stepped up from the couch, and my Wii remote smacked her on a forehand swing. I kept playing the volley without comforting her for a bit, until my wife yelled at me to give her some comfort. I can be a knucklehead sometimes....

Encouragement Links

2010-01-31T21:21:00.000-08:00

I'm going to list links here that I get either from friends, or stumble across myself

Grace Community Church (Auburn, WA) - see sermon series on Desperation (from Carol Brewster)

Exercise yesterday

2010-01-31T09:16:00.000-08:00

I played a couple matches (3 out of 5 sets) of tennis on the Wii against the computer yesterday. I won one or 2 games, but the point is to get my left arm moving, and not let it be idle. Right handed, I'm doing much better. While playing my first match left-handed yesterday, I rolled my big toe on my left foot (again). It hurt like hell. I rolled it the night before also. I had one of my daughters tape my 3 largest toes together on my left foot, to prevent this again.

It's been agreed with my family that I should wear shoes in the house now. Especially when on the Wii ;-). It's ironic, but I can't wait for my orthotic foot brace on Tuesday the 9th of Feb. I think it will help me quite a bit, at least in preventing injury. My cane is great for any walking of any substance, in the meantime.