ALS Ice Bucket Challenge

I know there is some controversy surround the ALS Ice Bucket Challenge.  Some people don't think we should waste the water, others don't think it is healthy, others think it is a silly fad.

As a Person living with ALS (PALS), I understand the criticisms and skepticism.  But the good that this initiative is doing in raising awareness of ALS, raising funding for ALS research, and raising the spirits of PALS and their families is quite simply amazing.  ALS is not a well-known disease.  Only 5600 people are diagnosed in the U.S. each year, and only 12,000 people in the U.S. die from it each year.  Compared to the number of people stricken with cancer, heart disease, and Alzheimer's, the numbers are small, but the disease is devastating.  To date, the donations have been small also.  This social media campaign is significantly changing that and has raised more awareness and money in a few short weeks than have been raised in several years for ALS research!

Many of my friends and co-workers didn't know what ALS was.  Most people that knew about the disease were either family members of a PALS or their friends.

I want to take a minute and thank all of the people who have taken the Ice Bucket Challenge or donated to the ALS Association as a result of it on my behalf:

• Amy Burgett (my sister)
• Andrea Marsters
• Matt DiBerardino
• Paul Torchia
• Roger and Tara Petrilli
• Jamie Legenos
• Drew Waggener
• Matt Tharp
• Dan and Jen Szekeres
• Scott Pezanowski
• Dave, Julie, and Olivia Spokane
• Sara Busse
• Susan Madgwick
• Linda Vose
• Andy Welcomer
• Lisa Clark
• Client Solution Architects - Mechanicsburg Office (Kim's company) - Kim, Steve,  Celeste, Jeff, Greg, Brenda, Elizabeth, Yvette, and Tina
• Client Solution Architects - Philadelphia and Tom's River Offices
• Paul Yatabe

If there are any I missed, I apologize (and please let me know so that I can add you to the list).   I love you all for your support, participation, and donations and for raising awareness of ALS!

I was challenged by Amy Burgett but haven't yet fulfilled my obligation.  I will rectify that this weekend, and Kim and I will also make another large donation to ALSA.

Colorado Trip Planning

Well, we're 8 days away from leaving on our Colorado trip!  We've been busy getting our lodging accommodations in order this week, and I have started organizing some of my clothes and gear.  My dad lives in Florida, so I will need to bring some cold weather gear for him too.

I've been working with ArcGIS Online at work as several of my customers are starting to implement it and I put together a quick "Story Map" to highlight our planned stops across the state.  It works best in a Chrome or Firefox browser.  I plan to fill in with more details and pictures when I return.  We'll drive more than 1000 miles in the 8 days we are traveling across Colorado.  We're celebrating my brother Forest's birthday on Monday 9/8 while we're in Crested Butte.

Trying to plan horseback rides in Crested Butte and Estes Park.  Also trying to line up some ziplines, something I have not done before.  Need to get some adrenaline flowing!  Plan to ride the Crested Butte chairlift to the top of the mountain and hopefully hike/ascend to the peak if the weather is good and we aren't bothered by elevation sickness.  Hopefully spending a day in Denver at 5280' elevation, then driving across the high mountains to Grand Junction at 4500' will give us a chance to acclimate to the altitude before we explore Crested Butte at 9375'.  When we ascend to the peak of Mount Crested Butte, we'll be at 12,162'!

Rocky Mountain National Park has the highest paved roads in any National Park in the United States. Trail Ridge Road crests at 12,183 feet. Due to the high elevations and exposure, park roads are subject to strong winds and rapid weather changes. Road conditions in and around the park can change quickly, particularly in the spring and fall.  We're hoping to be able to drive from the Western Side entrance of the park along Trail Ridge Road to Estes Park, where we will explore for 2 days before heading back to Denver and reality.  The road is currently open, but it can change at any point and could be closed for the season before we get there.  We'll have to check before we leave Crested Butte to determine whether to follow our main plan and drive to Granby to head up Trail Ridge Road or drive the main roads into Estes Park.  If you've never driven it, you don't know what you are missing. 

I last drove it in 1986 after I graduated from WVU, and made a trip to see Grandpa Knudson in Denver before heading south to see Don in New Orleans, my friend Lynn Epps in Birmingham, then returning home to Charleston, WV.  Two weeks after my trip I moved to State College and started my career.  Can't wait to see it again - hope that it is open when we attempt the drive!

Excerpt from the Trail Ridge Road Website:

Covering the 48 miles between Estes Park on the park's east side and Grand Lake on the west, Trail Ridge Road more than lives up to its advanced billing. Eleven miles of this high highway travel above treeline, the elevation near 11,500 feet where the park's evergreen forests come to a halt. As it winds across the tundra's vastness to its high point at 12,183 feet elevation, Trail Ridge Road (U.S. 34) offers visitors thrilling views, wildlife sightings and spectacular alpine wildflower exhibitions, all from the comfort of their car.

Whether they begin their journey at Estes Park or Grand Lake, Trail Ridge Road travelers climb some 4,000 feet in a matter of minutes. The changes that occur en route are fascinating to observe. A drive that may begin in montane forests of aspen and ponderosa pine soon enters thick subalpine forests of fir and spruce. At treeline, the last stunted, wind-battered trees yield to the alpine tundra.

Up on that windswept alpine world, conditions resemble those found in the Canadian or Alaskan Arctic. It's normally windy and 20 to 30 degrees colder than Estes Park or Grand Lake. The sun beats down with high- ultraviolet intensity. The vistas, best enjoyed from one of several marked road pullovers, are extravagant, sweeping north to Wyoming, east across the Front Range cities and Great Plains, south and west into the heart of the Rockies.

But for all its harshness, the Trail Ridge tundra is a place of vibrant life and vivid colors. Pikas, marmots, ptarmigans and bighorn sheep are commonly seen. About 200 species of tiny alpine plants hug the ground. Despite a growing season that may last just 40 days, many bloom exuberantly, adorning the green summer tundra with swatches of yellow, red, pink, blue, purple and white. All are seen from the Tundra World Nature Trail, a half-hour walk beginning near the parking area at Rock Cut.

Most Trail Ridge Road travelers drive to treeline with a certain amount of urgency. They are advised not to ignore all that awaits in the verdant country below the alpine tundra. Forested moraines, great heaps of earth and rock debris left behind by melting Ice Age glaciers, rise above lush mountain meadows. The Continental Divide, where streamflows are separated east from west, is crossed at Milner Pass, located at a surprisingly low 10,120 feet elevation. Moose munch greenery in the upper reaches of the Colorado River, which flows through the scenic Kawuneeche Valley. Grazing elk greet sunrise and sunset in many of the forest-rimmed meadows found around the park.

At all elevations, the drive on Trail Ridge Road is a memorable adventure. Put aside at least a half day for the trip. Longer, if possible. The experience, as Horace Albright suggested more than a half century ago, is hard to describe.

Trail Ridge Road is one of ten America's Byways in Colorado and a national designated All American Road.

Another Roger Childs Posting on ALS Research and Extending Life for PALS

Roger Childs Blog Post: More ALS Research

The More ALS Research posting talks about some of the things that Patients with ALS (PALS) can do to prolong their life.  Because the throat is affected and swallowing becomes more difficult over time, a PEG surgically implanted feeding tube may be required at some point in time to ensure that the patient gets enough fluids and nourishment to sustain life and stay strong.

In addition, the diaphragm is eventually affected by muscle spasms and weakened, and therefore the patient may need breathing augmentation through noninvasive ventilation (NIV) or eventually a tracheotomy.  If started at the right time, NIV can add almost a year on average to a PALS life.  Tracheotomies can also add significant time if performed early enough.  Roger indicates a Japanese study from 2003 of 70 ALS patients who received tracheotomies, and 30 of them lived more than 5 years afterward.  There is also a new implantable device that strengthens the diaphragm and keeps it functioning similar to a heart pacemaker.

With all of the focus on new stem cell research and other therapies that may eventually address the mutant SOD1 protein (superoxide dismutase 1) issues identified in this post, the important thing is to stay alive as long as possible so that we are alive when a cure or effective treatment is found.

Sunday, Reading Roger Childs Blog - What Can You Say Posting

Kim and I had a nice, relaxing morning.  Sat in the sun room reading the paper and enjoying the sunshine.  I cut the grass this afternoon and dug up the roots of another of the 5 bushes that Chuck and I cut down in June.  Two are now dug up and I'm close on the third.  Started digging around the fourth today.  The last two I have to be more careful because the gas, electric, phone, and cable all run directly underneath them.

I've been reading through Roger Childs blog.  Roger is a long term survivor of ALS - diagnosed in 2005 and still kicking today.  For the first five years he was pretty mobile, and he worked with Jeff Probst on a TV show about living with ALS in 2010, which was in my previous link.  After five years the disease started affecting his arms, but his legs and speech were still pretty good for a while longer. 

I think that the posting is very beneficial for everyone to read.  If you are were newly diagnosed with ALS, it is a MUST READ. 

From Roger Childs Blog: What Can You Say

In many ways Roger's posting sums up my approach to dealing with this terrible disease.  Make every day count, find your courage, don't give up, be strong, have faith, be hopeful, make a difference, share your love, get involved, and help others every chance you get.  None of us know how many days we have to live, so live your life to the fullest and encourage those around you to do the same.

No Joy in Skydivingville and Pills, Acupuncture, and Doctoring

A disappointing start to the day as Maytown called around 7:00AM and told us they were cancelling the jumps for the day again due to the weather - deja vu from three weeks ago.  Hopefully the third try will be successful.

I take a lot more pills these days than I used to.  I have been on high blood pressure meds for 15 years.  I have a prescription for omeprazole for when my acid reflux kicks up.  I take one loratadine tablet in the morning for my allergies and a baby aspirin for my blood pressure.

ALS added a lot more pills to my daily regimen.  I take a Riluzole tablet in the morning and the evening.  I have started taking half of a Glycopyrrolate tablet morning and evenings for my excess saliva.  In addition, the ALS Clinic suggested antioxidants Vitamin E, Vitamin C, CoQ10, and Beta Carotene that may help to slow the progress of the disease.  I made the mistake of buying some large 300 mg CoQ10 capsules, which I am having trouble swallowing, and I have started breaking the Vitamin C tablets in half to make them easier to swallow also.  I also have a prescription for Lorazepam, which they instructed me to take in the morning if my jaw spasms/tremors are bad or at night to help with muscle spasms if they keep me awake.

I had my third acupuncture treatment on Tuesday this week.  This week Dr. Williams didn't do the three needles in both of my hands between  my four fingers and the three in both thighs this week (yes, they hurt), and after I started working out again on Wednesday my spasms got worse again.  I go again Tuesday and will ask her to make sure our primary focus is on reducing the spasms.  My chronic sinusitis and TMJ are secondary concerns.

With the goldenrod now in full bloom my right sinus is completely blocked most of the time, so sleeping is more challenging.  Dr. Williams also wanted me to ask my ALS doctor (Dr. Simmons) about the possibility of taking some Chinese herbs to help my sinus condition, so I took a picture of the back of the box and emailed it to my primary nurse contact at Hershey, Maureen R.  I go back to my next acupuncture appointment on Tuesday afternoon and hope to get some more control over my spasms even though I am continuing to walk on the treadmill.  She should also have the results of my bloodwork from this past Monday.

I go back to the Hershey ALS Clinic on 9/3, the afternoon before I leave for Colorado.  We didn't get to meet the social worker last time, so I hope she is there this visit.  Dr. Simmons will be on vacation, so we'll get to meet the other primary ALS doctor, Dr. Raheja.

When I was in the doctor's office on Monday to sign in before going to the lab, there was a letter indicating that my internal medicine doctor was leaving the practice, so I will have to choose a new primary care doctor.

My boss at work has been very understanding about taking time off and charging sick time for my medical appointments, lab work, and other related meetings that take me away from work.  I am very grateful to Dave and the rest of my colleagues and Harrisburg managers.

My work friend Pat G. has offered to take me fishing some evenings when I get back from Colorado and also invited Kim and me over to shoot some of his guns.  Kim and I have been arguing for years who is the better shot, as both of us receiver our NRA Sharpshooter certificates when we were younger.  We may finally get to find out. :)

Several Interesting ALS Links

Roger Childs with Jeff Probst on Live for the Moment, 2010 (45 minutes)

Roger's Thoughts: Researchers discover how ALS spreads

Beating the odds so far in battle against ALS

ALS may be slowed by a diet rich in calories and carbohydrates

Lunch with Friends

I was blessed to have 3 great lunches with wonderful friends this week. 

I had lunch at Bricco's with my friends Heather R. and Karyn Y. from DEP on Wednesday.  We had wonderful meals, great conversation, and a fun time!  I walked back with them to DEP and visited the 16th floor to say hello to some old friends.

Thursday the Baker crew had lunch at Ho Wah Chinese restaurant in Lemoyne to send off Eric O. whose last day at Baker was today.  Eric had a unique opportunity to join the Pennsylvania Food Bank as an executive director for the Northern Tier and will be based in Williamsport.  Dave F., Tom S., Stephen C., Bob H., Danielle S. joined Eric and I for lunch.  Eric, we will miss you and wish you well in your new career!

Today I had lunch with my friends Jamie L. and Nora C from DEP - none of us work there today.  We hadn't been together for several years so we had a lot of catching up to do.  We lunched, laughed, and had a wonderful time catching up.  We promised to get together soon and hopefully introduce Kim and Jamie's fiancé to the mix.

I didn't remember to take pictures with Heather and Karyn, but we did take some pictures today at Passage to India...

ALS Information and Exercising

I recently discovered an ALS website that has some great information and I learned some things I didn't know, the ALS Therapy Development Institute.  It has all of the latest information on ALS clinical research studies that are going on across the world - I was somewhat surprised at how many there are - there were many I didn't know about.  Hopefully with the new infusion of funding from all of the ALS Ice Bucket Challenges, we can fund more and increase the pace! 

Thank you to everyone that has participated or donated, and please spread the word to raise awareness and to help find a cure.  The other 5599 people and I diagnosed in the U.S. this year need your help!  Twelve thousand people die from ALS in the U.S. each year.

There is also an interesting article on People with ALS (PALS) and exercising regimens.  The article says that previous but limited studies showed that working out for 20 minutes 3 times a week may help with breathing and spinal wellness.  Johns Hopkins started a 6-month research project regarding exercise in January 2014 but hasn't posted any results yet.  For most of the last 3 months, the most amount of exercise I have had is working in the basement moving boxes around and cutting the grass once a week.  The speech pathologist said I should use my voice sparingly during the day so that I can talk to Kim at night, so I figured the same was true of the muscles in the rest of my body - don't use them more than you have to in order to keep from wearing my motor neurons out faster.

Since I will be going to Colorado in a few weeks and need to be able to do some physical activities with my 84-year old dad and two younger brothers at altitude such as hiking and ziplining, I started walking on the treadmill again this week.  It feels good, and my jaw muscle spasms seem to be less severe in the morning when I get up to work out, and my breathing seems to be better.  I noticed this past week that the goldenrod is in bloom, which is why my allergies have increased the past few weeks - this is typically my worst time of the year.

I will be very interested to see what the results from the John Hopkins research shows and whether I should be totally sedentary to keep from wearing out my muscle neurons or whether limited exercise is beneficial over the long term.

Knudson Family Reunion 2014

Shortly after my ALS diagnosis in May, we decided we needed to be together as a family as soon as possible - not an easy thing to coordinate when we live scattered across Pennsylvania, West Virginia, North Carolina, Florida, and Colorado.  After months of planning, all eleven of us (12 if you count Ginny, 14 if you count the geckos) got together in Newland, NC for 5 days of family fun and adventure.  Most of us were together in September 2013 when we gathered at Chuck and Leigh's house in Charlotte to celebrate Forest's 50th birthday, but Kim wasn't able to join us due to her dad's illness.

The Knudson Clan

Left to right: Elijah, Chuck/Charles, Amelia, Forest, Jim, Benjamin, Don, Leigh, Margaret, and Kim.  Taking the photo is Don's wife Helen.  Missing: Ginny.

 

Sweet Ginny: Part Weimaraner, Part Lab

 

We had the great good fortune of having Allyson Cooksey donate her Cooksey Mountain House in Newland, NC for our family reunion.  Newland is in the western NC mountains just around the corner from Grandfather Mountain, close to Boone and Blowing Rock.  We drove just across the Tennessee border at Bristol before turning southeast to get to Newland.  The area is blanketed with Christmas Tree farms.

 

Timing wasn't great for Chuck and Leigh and their family.  They put their house up for sale several months ago and it sold in a few weeks.  Guess when the closing/moving day was - Monday after our reunion!  Imagine the packing frenzy over the past month!  They packed up 5 PODS units, closed Monday last week, and are continuing to unpack this week before school starts for Elijah, Benjamin, and Amelia.

 

Originally, Chuck had planned to pick up Margaret in Charleston to drive her to Newland, but we offered to detour to save him the time so that he could focus on packing and moving.  Forest flew into Charlotte from his home in Denver, CO on Thursday and drove up with the Charlotte Knudsons.  Don and Helen split their 13-hour drive from Pensacola FL over two days.

 

Kim and I got up early Friday morning and I started packing the car.  With all of the food we took along (I cooked the entire week before) plus 3 people and luggage in Kim's Infiniti EX, I quickly realized we were going to have to use the cartop carrier.  Unfortunately, it was still in the original box and we had never tried to use it before.  After an hour of frustration and numerous swear words from me, Kim finally helped me figure out how to get in on and secured, and then we packed it full.  We left Mechanicsburg PA a little after 8AM and headed for Charleston.  Had good weather and made pretty good time, considering the less than aerodynamic vehicle.  We arrived at mom's between 1:30 and 2:00 PM. 

 

We were on the road again by 2:30 and had solid rain the rest of the way to our NC destination.  Heavy rain and fog on the WV Turnpike is just like heavy rain and fog on the PA Turnpike - awful driving conditions!  Kim drove most of the way from Charleston to NC and I took over after we got off the Turnpike.  We were VERY happy to make it to the Cooksey Mountain House around 7PM and get out of the car after 11 hours on the road.  Kim's tolerance is usually 6 hours and 3 states, but she was a real trooper for almost twice the time and 6 states all in the same day.  Fortunately, we had several days to recuperate before having to drive home.

 

Kim, Margaret, and I were the last to arrive.  The house was beautiful and undergoing some final renovations, with a beautiful, new front porch, 4 bedrooms, 3 full bathrooms. 

 

There were lots of hugs, kisses, and love shared that first hour.  Nobody had started anything for dinner, so I got out the NC-style (vinegar based) Pulled Pork BBQ I had made and we had some good sandwiches the first night.  Then the Ice Cream gala started - I think we had ice cream every night we were there - YUM!

 

 

It was an early night, since all of us were very tired, but it was a wonderful start to a great week!  Kim and I had the bedroom in the far back corner of the house, which didn't have very good air movement, so we kept the windows open all week and enjoyed the cool nights and fresh mountain air.  I slept very well and enjoyed hearing the birds and other wildlife at night and in the mornings.  One night we thought we heard a coyote howling!

 

Saturday morning we all dribbled into the kitchen over several hours.  I cooked 2 pounds of bacon, which magically disappeared as soon as I cooked it.  I think Amelia ate her weight in bacon. :)  We took the Gator out and tried to make it to the top of the hill, but it was too muddy and we had to back down the hill on the narrow, rocky trail until we could turn around.

 

 

Saturday afternoon we got back in the car - again - and drove into Newland to look for crickets to feed the Knudson kid's geckos, through Boone, and finally into Blowing Rock.  The weather was cool and rainy, and when we got to Blowing Rock, it was pea soup.  Couldn't see much of anything other than crowds of people and lack of parking, so we didn't stay long.  Everyone was tired of being in the car again, so we headed straight back to the house.  We talked, played some games, and rode around in the Cooksey Gator and the Knudson's new golf cart.  Elijah, Benjamin, and Amelia all loved driving the golf cart all week, but of course taking turns driving was sometimes an issue.

 

Saturday night we had some pasta and excellent Gulf Shrimp that Helen and Don brought from Florida and some chocolate chip oatmeal cookies and ice cream for dessert.  Chuck, Forest, Kim and I played Texas Hold Em for an hour and enjoyed the "friendly competition".  Kim was the champion the first night.  We also played a new board game called Say Anything, which was fun for everyone.

 

 

Sunday was a lazy day.  I cooked two pounds of Jimmy Dean sausage (my favorite), which again mysteriously disappeared.  We didn't leave the house - sat on the front porch, read books, played games, rode the vehicles, played in the creek, and sat and talked.  We had hot dogs and Kim's famous hot dog sauce for lunch, and we had Jim's famous Mexican Chicken Burritos, fresh salsa, refried beans, and Kim's Mexican Rice for dinner.

 

 

Monday morning was another bacon morning.  I fixed one pound of Costco bacon and another pound of Snyder's of Pitman double smoked bacon.  The kids liked the Costco brand the best, the adults liked Snyder's.  Kim and I drive 90 minutes each way to Snyder's little butcher shop in Schuylkill County once a year to get 15-20 pounds of this delicacy and keep it in the freezer.  I've never had better!  We decided to drive to Blowing Rock again since the weather was decent.

 

First stop was the Mast General Store in Valle Crucis.  A definite tourist trap, but a fun place to visit and experience.  I bought some hard candies - choke cherry, clove, cinnamon, and lemon.  They carried my favorite ginger beer, Blenheim's Pink Cap - very spicy hot stuff, not for the timid!  Almost like eating a fresh jalapeno - hurts/burns so good!  I shared it with dad, who then talked Charles, Benjamin, and Forest into trying it.  It was fun to watch their faces when the heat hit, we got a good laugh from their reactions and discomfort. 

 

 

Blowing Rock was much slower on Monday than on Saturday and parking was a breeze.  There were still a lot of tourists, but easy to get in and out of the neat little shops.  It was lunch time when we arrived so finding a place to eat was our first priority.  We went into a couple of shops to ask for a recommendation, and the overwhelming response was to get back in the car and drive 3 miles to the Foggy Rock restaurant.  It was a great gourmet experience, and I highly recommend anyone visiting Blowing Rock to stop and enjoy the cuisine.  Several of our group said it was one of the best meals they ever had at a restaurant and nobody went away hungry.

 

 

We enjoyed shopping and walking around Blowing Rock and ended up in the park for a while to talk, take pictures, and watch the kids play on the playground.

 

 

 

Monday night we had leftovers since we had such a big lunch at Foggy Bottom.  Forest won our Texas Hold Em competitions Monday and Tuesday nights.  Beginner's Luck?  Or a card shark?  We'll have to teach dad to play while we're in Colorado next month.

 

I brought the family tape player and tapes along on the trip.  Monday night we listened to voices from the past - Grandpa Clarence Knudson and the (uncle) James Knudson family from (then) Rhode Island (now Cambridge, MA).  Several of the tapes we tried to listen to were recorded over with music, unfortunately.  One of them had snippets of Grandpa's droll voice interspersed with music at a different speed.  We were all laughing pretty hard and uncontrollably before we turned it off.  I plan to finish listening to the tapes and then take the ones with family voices to have them recorded on CD/DVD to preserve them for posterity and so that everyone in the family has a copy.  We'll send copies to Jim and Esther, Kristin and Hilary also.  Hearing familiar voices on tape from 40 year ago was priceless!

 

Tuesday, our last full day in Newland we talked, played, read our books, played on the golf cart, planned our Colorado trip, sat in the sun, and walked to the top of the hill on the adjacent property where the Christmas Tree farm is.

 

 

Jim and Chuck at the top of the hill!

 

 

Climbing the hill was a test for me for next month in the Rockies.  I didn't have any muscle weakness and didn't feel winded until I scrambled quickly up the 150' hill at the very end.  Not too bad for an old geezer who hasn't worked out for three months because he didn't want to burn up the motor neurons in his legs any faster than necessary.  More about that in my next posting.

 

We had Jim's famous Chicken Parmesan for dinner, baked the rest of the chocolate chip cookies, and finished off the ice cream.

 

Wednesday morning was bittersweet.  Kim, Margaret and I were the first to leave, but we took our Knudson Clan 2014 pictures on the front porch before hitting the road.  It was a much easier drive home, good weather and only 10 hours.  We dropped off mom around noon, and made it home to Mechanicsburg around 5:30PM. 

 

A wonderful family time, good food, sharing and fellowship, fun, love, relaxing, and enjoyment!  Spoiled by having to go back to work for half of us, and a stressful finish to packing, closing, and moving for the Charlotte Knudson's.  Great memories, and plans being made for our next get together, probably at Chuck and Leigh's new house in Charlotte next Spring.

Catching Up!

Wow, time flies when you are having fun!  Sorry it has been so long since I last updated my blog.  It has been a busy 2 weeks...  Here's a summary.

FUN

We had a wonderful time with the Knudson Clan in Newland, NC from 8/8-8/13.  You can see the pictures from our 5 days together on my Facebook Page under the Knudson Family Reunion 2014 Album.  Thanks to Allyson Cooksey for allowing us to use her Cooksey Mountain House!  I'll have a separate post just about the trip.

We did some planning for our September Knudson Men trip while we were together and have a basic itinerary for our road trip across Colorado:

• Thursday 9/4 - Dad and I arrive in Denver around 4:30PM, hope to have dinner with dad's Cousin Charlie and wife Helen.  Chuck gets in around midnight.
• Friday 9/5 - Meet up with Chuck and have breakfast and spend the morning with Charlie and Helen.  May try to visit the family cemetery and have our picture taken in front of Knudson Hall on the Denver University campus, named for Grandpa Clarence.  We'll leave Friday afternoon and drive to Grand Junction.
• Saturday 9/6 - Visit Uncle Frank and Aunt Geneva Cooley and cousin Frank and wife Margie.
• Sunday 9/7 - Visit Uncle Frank and Aunt Geneva Cooley and cousin Frank and wife Margie.  Drive to Crested Butte, CO in the afternoon.
• Monday 9/8 - Explore Crested Butte.
• Tuesday 9/9 - Explore Crested Butte.  Leave in the afternoon to drive to Granby.
• Wednesday 9/10 - Enter Rocky Mountain National Park from the back entrance and drive the Trail Ridge Road to Estes Park for the night.
• Thursday 9/11 - Explore RMNP.
• Friday 9/12 - Drive back to Denver.  Drop Chuck off at the airport.  Visit with Charlie and Helen.
• Saturday 9/13 - Dad and I fly home.

We went to State College this past weekend to see Jean and Kelly.  Didn't do much, relaxed and visited.  We probably won't get back up there until after my Knudson Men vacation. 

Bucket List - We (Mel H and I) rescheduled our tandem skydiving to this coming Saturday morning.  Hope to have better weather than 2 weekends ago when they called and cancelled.  YIPPEE!  Can't wait to freefall and then float down to the ground - a dream come true!  I'll have a video to show that I actually did it. :)

MEDICAL

Went back to work on Thursday.  Friday I had my second acupuncture treatment, and it seems to be helping some.  The muscle spasms in my arms don't seem to be as constant and are of lesser strength.  That is good, because the intense spasming will wear out my motor neurons faster.  I go back again for my third treatment tomorrow (Tuesday) and will continue until I can't derive any more benefit. 

I am seeing a Chinese medical doctor who specializes in acupuncture and has offices on both the east shore and west shore.  She has suggested that I try some Chinese herbs also, but I need to consult with my doctor first.  Some of the needles hurt, most don't.  Dr. Williams figures out the placement, then taps the needle in.  Usually that is the worst, but sometimes they hurt longer.  She put four in my face/nose to try to improve my chronic sinusitis.  It does seem to help someWhen she twirls the needles after 15-30 minutes that occasionally hurts.  Friday I was there for over 90 minutes over my lunch hour and late to my afternoon meeting at the PA Turnpike Commission.

I went to the lab today to have blood drawn for the third time since starting on Rilutek/Riluzole.  I started taking glycopyrrolate medicine last night because my salivation has increased over the past month, one of the ALS symptoms.  Side effects include double vision and dizziness, so I am starting with a low dose to see how my body tolerates it and if I have any issues.

While in Newland, NC, I found out about the ALS Ice Bucket mania from my sister Amy.  It is amazing how much money has been raised so quickly, all of it going for ALS research!  Several of my friends have mentioned me (Andrea M.) or done it my name (Amy B., Jon C.).  T HA N K   Y O U! 

Amy challenged me, so I went to Lowes and bought a 5-gallon bucket tonight.  I will make another large donation and will have Kim videotape me when I dump the icy water over my head this week.  My friend Karen M. is participating in a Walk to Defeat ALS in D.C. 

If you are reading this, please accept my challenge to participate in the ALS Ice Bucket Challenge to raise awareness and funding for ALS research to defeat this terrible disease and help find treatments and a cure.

The Department of Labor and Industry Office of Vocational Rehabilitation is providing 5 hours of consulting to help with my speech issues.  It is very challenging to be in the IT Consulting business and be successful as a Project Manager when you can't communicate verbally.  I am meeting with Schanzenbach next Wednesday to start exploring assistive technologies.

WORK

Just two work items.  The City of Charleston asked for a new PM for their stormwater project because they can't understand what I am saying when I talk on the phone.  I don't blame them at all and respect their decision.  I have a bad case of mush mouth.  It has been a difficult project and I will be glad to pass the stress on to another Baker PM. 

Some good news on the proposal I worked on last month, we were selected for negotiations, and I am the designated PM for the 18 month initiative.

Also working on my long term disability claim package for Northwestern Mutual.  They ask for a lot of documentation, and I need to get documents to all of the doctors who I worked with (3) in the past few months.  Paul advised that I would be better off filing the paperwork now whether I accept any disability payments any time soon or not since NMFN may pay my future insurance premiums.

Received a package from Gannett Fleming last week offering a one-time lump sum payout on my pension, so we will consolidate and roll that money over to NMFN.  Will make it easier to have fewer but larger retirement income accounts for Kim and me and we'll have more control over the funding stream instead of the monthly payment from the pension plan.

Friends!

Thank you to all of my friends who have supported me since my diagnosis in May and who continue to show their support and love every day! 

This disease has taught me to never take my life and my friends for granted, and how lucky I am to be married to my wonderful wife Kim and to have my family and such wonderful friends!

My friend Tom B. from DEP and the WVU Alumni Association stopped to see me in the office a few days ago and said some very nice things.  I received a very nice card from Bob and Andrea indicating that they are thinking about us.  My friend Eric O. and I had lunch with Sheri F. at Ho Wah's today.  Eric is leaving Baker this month to join the PA Food Bank and moving to Williamsport.  Tomorrow I am having lunch with my dear friend Mary Ann whom I haven't seen for several months.  Phil T. and I are planning lunch again in a few weeks at Ho Wahs.  My friend Jamie L. from PennDOT reached out to me today to schedule lunch and we're going to meet Nora C.  Today I scheduled lunch with my dear friends Heather R. and Karyn Y. from DEP.  I'm planning a trip to see my friends at DEP and will schedule some additional lunches in the next few weeks. 

My bicep spasms are back today after a slight decrease yesterday following my initial acupuncture treatment yesterday.  I was able to breathe and sleep on my back last night for the first time in months, so that was a definite improvement after only one treatment.  My next appointment is a week from Friday and I hope to keep seeing some definite improvements and hopefully start lessening the intensity of my muscle spasms.

For the most part, yesterday was fairly painless.  I think I had at least 20 needles.  Several did hurt for several minutes or until they were removed.  The one in my right hand between my thumb and forefinger hurt because the muscle spasms in my bicep travel down my arm to that spot so it was being vibrated.  It reminded me of the pain from the EMG I had on 5/8 when I was initially diagnosed with ALS.

The doctor put one in my right hand little finger just behind the fingernail and that one hurt a lot and hurt the whole time until it was removed.  She put one in the outside of my nose and one in my face close by to attempt to open up my right sinuses and they hurt, especially when she wanted me to talk to her and answer questions.

However, the pain overall from being stuck with 20 needles wasn't very severe and I can certainly put up with it if I can gain some continued benefit.

Looks like the weather won't be very good in North Carolina next week - calling for rain and storms most of the time.  Hopefully we will have some decent weather for some outside activities.  I've been looking forward to throwing frisbee with my nephews and niece, and we were hoping to do some tubing and hiking.  Otherwise we'll be playing a lot of indoor games.  My family likes Sequence and Monopoly, and my youngest brother Chuck said he wanted to play Texas Hold 'Em with Kim and me, so I told him to bring a lot of quarters. :)  We'll have lots of good food and good company.  I finished shopping today and have a pork roast in the oven overnight at 200 degrees to make pulled pork for lunches next week, which I will finish tomorrow night.  It's a little more challenging to make meals for 11 thank it is for 2!

The house we're staying in next week doesn't have Internet or a TV, so don't expect many updates until late next week when I will post some pictures and new posts.

Still have a lot of thank you notes to write, so I'll spend some time next week trying to finish those and get them in the mail.

Thanks for caring enough to check in!

Acupuncture Day and NeuralStem and CDC ALS Registry Articles

I had a TMJ appointment on Friday to take some molds for a day guard to help with my teeth grinding during the day and a night guard to help keep my lower jaw forward to improve breathing and reduce clenching and grinding.  Unfortunately, my gag reflex was so bad that we couldn't take the molds.

Therefore, I had my first acupuncture treatment today to see if they can do anything to help with several issues - chronic sinus allergies, TMJ, and my ALS muscle spasms.  Never had acupuncture before, so was interested to see how it would go.  Because I've had chronic allergies for more than 20 years living in Central PA and worsening TMJ for several years, the doctor indicated it will take more than one treatment to see a marked improvement.  I did think that the ALS-induced muscle spasms were a little better.  She wanted me to come back Friday for a second treatment, but we'll be on our way to NC to see the Knudson clan.  Hopefully we can reduce the muscle spasms and get longer life out of the motor neurons in my limbs.

I have noticed more difficulty speaking clearly.  Kim has been having a harder time understanding me the past 2 weeks, so my speech must be getting worse quickly.  I really need to start investigating the Text to Speech apps for my iPad/iPhone.

Last night I made chicken parm, tonight I am making salsa.  Have a little more shopping to do before we leave Friday and pack Thursday night.

Hilary sent me the following press release on the Neuralstem ALS research project and the ALS Association released the results of the CDC's national ALS registry in the following article.

Final Patient Treated In Neuralstem Phase II ALS Stem Cell Trial

GERMANTOWN, Md., Aug. 4, 2014 /PRNewswire/ -- Neuralstem, Inc. (NYSE MKT: CUR) announced that the final patient was treated in its Phase II trial using NSI-566 spinal cord-derived neural stem cells in the treatment of amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The multicenter Phase II trial treated 15 ambulatory patients in five different dosing cohorts. The first 12 patients received injections in the cervical region of the spinal cord only, where the stem cells could help preserve breathing function, in escalating doses ranging from five injections of 200,000 cells per injection, to 20 injections of 400,000 cells each. The final three patients in the trial received both cervical and lumbar injections, for a total of 40 injections of 400,000 cells each, or a total of 16 million cells transplanted. In contrast, the final three patients in the Phase I trial received the maximum 15 injections of 100,000 cells each, for a total of 1.5 million cells. The trial will continue until six months past the final surgery, at which point the data will be evaluated.

"We are all extremely pleased to have completed the transplantations in this historic Phase II trial," said principal investigator, Dr. Eva Feldman, MD, PhD, Director of the A. Alfred Taubman Medical Research Institute and Director of Research of the ALS Clinic at the University of Michigan Health System. "By early next year, we will have six-month follow up data on the last patients who received what we believe will be the maximum safe tolerated-dose for this therapy. We look forward to seeing what the data tell us about safety and efficacy of this approach. It is also worth noting that we will have completed this Phase II trial within a year, roughly.  I would like to thank Dr. Parag Patil,  and my collaborators at Emory, Drs. John Glass and Nick Boulis, and at Mass General, Drs. Merit Cudkowicz and Larry Borges, for helping us reach this goal." Dr. Feldman is an unpaid consultant to Neuralstem.

"The completion of Phase II of this important clinical research program is a major milestone, demonstrating that patients can tolerate the transplantation of high doses of cells and multiple spinal cord injections," said site principal investigator,  Jonathan D. Glass, MD, Director of the Emory ALS Center. "From both a clinical and scientific perspective, I think we are now ready to move forward toward a true therapeutic trial to test the efficacy of this surgical approach for slowing the course of ALS."

"We would like to express our thanks to all of the doctors and medical staff who made this possible, as well as the patients and their families. Without their bravery, none of this would have happened," said Karl Johe, PhD, Neuralstem's Chairman of the Board and Chief Scientific Officer.  "With this landmark trial, the first to transplant stem cells in this volume and through so many injections along the length of the human spinal cord, we hope to establish the dose that is both safe and which may be optimal for treatment.  We are excited about the collection and analysis of the final data and look forward to advancing to our next trial."

About Neuralstem
Neuralstem's patented technology enables the production of neural stem cells of the brain and spinal cord in commercial quantities, and the ability to control the differentiation of these cells constitutively into mature, physiologically relevant human neurons and glial cells. Neuralstem's NSI-566 spinal cord-derived stem cell therapy Phase II clinical trials for amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease, concluded final surgeries in July 2014. Neuralstem has been awarded orphan status designation by the FDA for its ALS cell therapy.

In addition to ALS, the company is also targeting major central nervous system conditions with its NSI-566 cell therapy platform, including spinal cord injury and ischemic stroke. The company has received approvals from the FDA and the Institutional Review Board of University of California, San Diego, to commence a Phase I safety trial in chronic spinal cord injury.

Neuralstem also maintains the ability to generate stable human neural stem cell lines suitable for systematic screening of large chemical libraries. Through this proprietary screening technology, Neuralstem has discovered and patented compounds that may stimulate the brain's capacity to generate neurons, possibly reversing pathologies associated with certain central nervous system conditions. The company has completed Phase Ia and Ib trials evaluating NSI-189, its first neurogenic small molecule product candidate, for the treatment of major depressive disorder (MDD), and is expecting to launch a Phase II NSI-189/MDD study in 2015. Additional indications might include traumatic brain injury (TBI), Alzheimer's disease, and post-traumatic stress disorder (PTSD).
For more information, please visit www.neuralstem.com or connect with us on Twitter, Facebook and LinkedIn

Cautionary Statement Regarding Forward Looking Information:
This news release may contain forward-looking statements made pursuant to the "safe harbor" provisions of the Private Securities Litigation Reform Act of 1995. Investors are cautioned that such forward-looking statements in this press release regarding potential applications of Neuralstem's technologies constitute forward-looking statements that involve risks and uncertainties, including, without limitation, risks inherent in the development and commercialization of potential products, uncertainty of clinical trial results or regulatory approvals or clearances, need for future capital, dependence upon collaborators and maintenance of our intellectual property rights. Actual results may differ materially from the results anticipated in these forward-looking statements. Additional information on potential factors that could affect our results and other risks and uncertainties are detailed from time to time in Neuralstem's periodic reports, including the annual report on Form 10-K for the year ended December 31, 2013 and Form 10Q, for the period ended March 31, 2014.

Logo - http://photos.prnewswire.com/prnh/20061221/DCTH007LOGO
SOURCE Neuralstem, Inc.

For further information: Planet Communications - Media Relations: Deanne Eagle, 917.837.5866; MDC Group - Investor Relations: Susan Roush, 747.222.7012; David Castaneda, 414.351.9758

- See more at: http://investor.neuralstem.com/2014-08-04-Final-Patient-Treated-In-Neuralstem-Phase-II-ALS-Stem-Cell-Trial#Closed



Also, from the ALS Association...

ATSDR Reports First Data Set from the National ALS Registry

 Washington, D.C. (July 24, 2014) — Today, the Agency for Toxic Substances and Disease Registry (ATSDR), a sister agency to the U.S. Centers for Disease Control and Prevention (CDC), reported the first data set from the National ALS Registry, a nationwide research project established by Congress to identify cases of amyotrophic lateral sclerosis (ALS) from throughout the United States and collect vital information leading to the cause, treatment and cure of this fatal neurodegenerative disease.

The report was published in the CDC’s Morbidity and Mortality Weekly Report and includes information collected through national administrative databases (Medicare, Medicaid, Veterans Administration) and from self-reporting by people with ALS. Among the report’s findings:

• Between October 19, 2010 and December 31, 2011, the ALS Registry identified 12,187 people living with ALS in the United States, which means about 4 people out of every 100,000 live with ALS;
• The disease was more common among males, whites, non-Hispanics, and people aged 60 - 69;
• White men and women are about twice as likely to develop the disease as black men and women; and
• The disease is more common in men than women, with a ratio of men to women of 1.56.
• The report represents the first ever population based estimate of the number of people living with ALS in the United States and included information collected during the ALS Registry’s first year of operation, from 2010 - 2011. 

“This initial report is an important milestone for the National ALS Registry and adds to our knowledge of the disease,” said Barbara Newhouse, President and CEO of The ALS Association. “But this is just the beginning; the first step in what is a long-term research project that not only can tell us how many people have ALS, but more importantly, why they have it.  Further enrollment of people living with ALS is critical.”

In addition to identifying the number of cases of ALS throughout the United States, today’s report included preliminary information about risk factor data collected by the registry, including military service, the occupations of those living with ALS as well as smoking and alcohol consumption.  The ATSDR is expected to report their findings once analysis is complete, and this information may help the scientific community learn more about what causes ALS.

The report also noted enhancements that have been made to the ALS Registry, including the creation of a research notification tool to inform people with ALS about research studies in which they may be eligible to participate as well as a feasibility study investigating the creation of a national ALS biorepository.   

“A national biorepository that collects tissue samples from registry participants and links those samples to data already collected by the registry would provide the scientific community a powerful new resource to advance research,” said Lucie Bruijn, Ph.D., MBA, Chief Scientist for The ALS Association.  “Whether it’s the biorepository, the risk factor surveys, or the research notification tool, the registry holds great promise, and we can realize that promise if people with ALS continue to enroll.”   

The ALS Association is working closely with ATSDR and other ALS organizations to raise awareness of the National ALS Registry in communities across the U.S. and to help people with ALS enroll in the registry. To learn more about the National ALS Registry, including how to enroll, please visit the registry page of The ALS Association’s website, http://registry.alsa.org/ or the ATSDR’s ALS Registry website at www.cdc.gov/als. 

ATSDR’s full report is available here: http://www.cdc.gov/mmwr/pdf/ss/ss6307.pdf

About The ALS Association

The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at www.alsa.org.

Rained Out!

Mel and I were supposed to do a tandem skydive this afternoon at Maytown in Lancaster County  but they called this morning and indicated that both the morning and afternoon jumps were cancelled due to weather.  We'll have to reschedule in a few weekends. 

I went to the store this afternoon and Kim and I started cooking for our NC trip to see the Knudson clan next weekend.  I am making a large batch of chicken burritos and Kim made spaghetti sauce.  I need to buy some parmesan cheese so that I can make my chicken parmesan breading mix and make some chicken parm cutlets to take with us.  I still have to make salsa. 

Don and Helen indicated they were bringing some fresh Gulf shrimp which we can have one night and a pork roast that they will fix with some summer vegetables - corn, butter beans, tomatoes, etc.  As always when the Knudson clan gets together, we will eat well!

 I am enjoying not doing any work on the weekends!  I am currently reading one of the books I bought at the AAUW book sale by one of the science fact/futurist authors I really like, David Brin.  This one is called "Existence" and is set in the future when the Internet and AI are more prevalent, something called "AwfulDay" happened in the past where radioactive dust was spread over many cities worldwide, including Washington, D.C., global warming has melted the ice caps and flooded the coasts,  humankind is struggling to exist, and an alien artifact is found in high earth orbit that proves the existence of extraterrestrials.  It took me about 50 pages to really get into it and get used to the futurist jargon, but now I am having trouble putting it down. The Sunday paper didn't arrive until about 8:30, so I read about 70 pages this morning sitting in the sun room.  :)  I read Kiln People earlier this year by DB and really enjoyed it also.

I worked some more in the basement yesterday cleaning out boxes and have a tremendous pile of papers and notebooks to recycle. In cleaning out my bookshelves and recycling papers I was able to free up enough space to rearrange my book collection yesterday, also.  I collect and read many authors, and each year I take a list of books I need to complete my collections to the annual AAUW sale.  What a wonderful time!  I have enjoyed reading books on my iPad, but nothing beats holding one in your hands or lap and turning the pages!

Now that my project at PennDOT has been completed I have a lot of work to do for the Turnpike this week.  My evenings this week I'll finish getting food ready and try to finish up all of my remaining thank you notes before we leave Friday to pick up mom in Charleston and then drive down to NC to see the rest of the family. 

Below are the professional pictures of Team JFK from the 2014 Hershey Walk for the Cure.  Several people have asked if they can contribute.  The Team JFK page is still accepting donations and can be accessed on the Walk for the Cure website.  Several people have donated in recent weeks, and I thank everyone for their support!