More support

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

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

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)

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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.