Catching Up Again!

Kim asked me this week why I hadn't written anything for a while.  It has been a busy few weeks, but the primary reason is that I have been waiting to get a copy of our Colorado Bucket List video from Chuck so that I can finish the vacation posts and pics and post the video here.

Still don't have a copy of the video that I can post here, but it is available to the public (I think) on Chuck's Facebook page at: https://www.facebook.com/video.php?v=10204489086408343&set=vb.1267866520&type=2&theater.  Some day I will be able to post it on my blog.

Before I catch you up on the last 3 busy weeks, let me tell you that yesterday and today were fantastic days!  Yesterday Kim and I celebrated our 27th anniversary after work with dinner at Carrabba's.  It was a very nice evening!  We were married on the patio at the Elk's Club in State College on a beautiful fall day surrounded by family and great friends, and man did we party!

Today was a beautiful fall day outside, and I got a lot done.  Fall has always been my favorite time of the year. 

Three boxes of financial papers that have been lurking around the house for several years went to the Goodwill Community Shred day.  I took another load of stuff from the basement to the Salvation Army.  This afternoon I worked outside trimming bushes and cleaning up around the house and put the patio chairs in the basement.  Not quite done outside but great progress!

The weather was amazing for the end of October - in the 70's!  It was a joy to be outside and felt good to make the yard and house look better.  I had great energy all afternoon, but am tired tonight - a good tired! :)  Tonight, Kim made a wonderful salad to go with our Carrabba's leftovers (salmon, scallops, and garlic mashed for me) for dinner.  I've been having difficulty eating salads due to weak jaw muscles and swallowing/choking issues, but Kim bought a chopped salad kit, and now she can grind mine up into small enough pieces for me to be able to eat it.

Now to catch you up. 

About Me

My speech continues to go south, but I talked to Wendy from Schanzenbach and Nancy from OVR two weeks ago and they indicated they had recommended a MS Surface Pro with text/pic to speech software to enable me to continue working and be able to communicate verbally.  Not sure when it will happen or how much we will have to pay, but it makes me feel better knowing that we are making progress.

I continue to go to acupuncture Monday, Wednesday, and Fridays at lunchtime and continue taking the Chinese herbs that Doctor Williams grows and processes for me each week.  It is sometimes painful, and some days I wish I didn't have to go back to work, but I always do.  I must be getting used to the taste and smell of the herbs as I don't think of it as trying to eat vomit anymore.  The last batch was processed very fine, so she asked me to stop chopping it up in my NutriBullet and just mix it with OJ.  The current batch is a little more coarse, so swallowing chunks is a little harder, but getting through it.  She increased from 1 heaping tablespoon twice a day to 2 heaping tablespoons twice a day last week and increased it to 2.5 on Friday.  She indicated my tongue wasn't spasming as much, which she thinks is progress.  It was spasming pretty severely the previous week.

I joined the ALS Inspire website about a month ago and started talking to other PALS recently diagnosed with Bulbar in the past 6 months, and made a good connection in Pittsburgh and another one in the UK.  Both were recently diagnosed, one younger then me and one older.  The website has a lot of excellent information and I learned a lot from talking to my PALS friends and finally got up to speed with the Deanna Protocol (DP).  I ordered a 30-day supply of DP supplements and started on them this week.  Also ordered some Rich Life X Lunasin pills, which my friend in Pittsburgh indicated really helped him regain almost normal speech and swallowing.  He takes 10 pills a day in addition to all of the DP supplements.

I have modified my diet and am avoiding gluten, have increased my fat intake, as well as trying to work coconut oil into my daily nutritional intake.  The coconut oil is very hard on the stomach, at least it is for me at the start.  In addition to ingesting it, you are also supposed to massage your weak areas with it as it can build/rebuild muscle mass, which atrophies with ALS.  I ordered a case of Fuel for Thought (F2T), a new nutritional drink that contains as much MGT as 15 Tablespoons of Coconut Oil.  The DP calls for ingestion of 12 Tbsp/day of coconut oil to gain the maximum benefit.

F2T was developed primarily for people with Alzheimer's, and they are currently studying its use as an Alzheimer's treatment at the Byrd Research Institute.  Each 2.5 fl oz bottle of F2T contains 2 doses, and helps fuel the brain for the entire day.  Several people indicated they had problems ingesting coconut oil/caprylic acid, but had no problem ingesting the F2T drink and were getting all the benefits of the MGT's from the coconut oil as indicated in the DP.

DP can also cause some stomach distress, and I experienced that on Wednesday and Thursday.  I was at work all day Wednesday but in the bathroom every 30 minutes.  I took a sick day on Thursday and starting eating yogurt again every day to counteract the GI issues.  Some people on the Inspire website indicate the symptoms usually get better at around 3 weeks.  The DP has a challenging pace throughout the entire day, and it is a struggle.  There are a lot of nutrients/supplements in the DP that you have to take.  Fortunately, Simplesa makes and sells a complete DP protocol in packaged powder (or liquid) portions that make it a little easier, although you still have to take something every hour. 

I have noticed more spasms at night, and I had some leg cramps this week.  Kim called Rite Aid and had them fill my Baclofen prescription, which the doctor had called in during my clinic day in early September.  I will probably start taking Baclofen to decrease the spasms and cramps.  I have to be careful when adding something new since I am already taking so many medications and supplements as well as the Chinese herbs, so will start with a half tablet.  This is one of those drugs that you have to wean off of and not stop cold turkey, so I have some trepidation about starting it.

Mom

Two months ago mom decided it would be best for her to leave the apartment in Charleston where she has lived the last 20+ years and move to Charlotte to live with Chuck, Leigh, Elijah, Benjamin, Amelia, and Ginny in their newly purchased house.  This was a big decision for her and one that she has fought against for several years. 

Chuck drove up to Charleston about 5 weeks ago and helped her pack some boxes that he took back to Charlotte in his car.  He emailed me and asked if I could go down to help mom pack up more of her apartment to get ready for the move.  At that time, he couldn't give her a date for the move as their lives and weekends are very busy.  Chuck and Leigh own their own optometry business in Charlotte, and just moved into a new house in August and still haven't had time to unpack everything.

Two weekends ago I went down to help mom pack.  During the week I stopped at the local UHaul store and bought a 25-pack of small boxes and some packing tape.  Took a half day vacation on Friday and drove down after acupuncture through heavy rain that obscured the beautiful fall mountains, but finally arrived safely around 7PM.  I hadn't been down since we picked her up in August for our NC Mountain family reunion.  Mom was struggling and frustrated, not sure how to get started, what to do first, how to pack, etc.  We went out for a late dinner at Red Lobster and had a nice visit, although she couldn't understand much of my speech.  I brought my old sleeping bag and slept on the floor.

By late Saturday morning we had gotten past the frustration and immobility and were making good progress, packing up her large front room closet and her storage area in the hallway.  We packed all afternoon then went to Joe Fazio's for a nice lasagna dinner to celebrate.  Packed some more when we got back to the apartment, then turned off the lights and crashed.

Sunday we got up and I went to church with her.  We attended her Sunday school class, which was very nice.  Thought about staying for church, but the weather was rainy, and I wanted to get started up the road to home.  Before I left, I asked her if she would be interested in moving the next weekend instead of waiting until 11/8.  Leigh and I had discussed when mom might be able to move on Saturday morning, and those were the only two possibilities.  It didn't seem feasible to do the following weekend when Leigh and I talked, because we hadn't started packing yet.  But because we had made such good progress, it was a possibility.  I could see she was struggling, wasn't eating or sleeping well, and it was taking its toll, so I felt that sooner would be better than later.

I left her with that thought and headed back up the road.  Mom said she would sleep on it and pray about it and let me know.  It rained half of the way, so again I didn't get to enjoy the beautiful hills and trees at their peak.  I called mom when I got home to let her know I was safe and she indicated she thought it would be best to get 'r done.

I emailed Chuck and Leigh that night and we started putting plans in place to make it happen.  We started out thinking that Chuck and I would finish packing and load a rental truck that Chuck and mom would drive back to Charlotte.  But that would require Chuck to trailer his car and leave mom's car behind.  We ended with Chuck hiring the moving company that moved them into their new house, which was a much better plan.  We'll use some of mom's funds to pay the costs.  I stopped at the local UHaul store again and bought several boxes of plastic bubble wrap to wrap mom's artwork and fragile items.

So, last weekend, Kim and I left work at noon (after acupuncture for me), and made the 5-hour drive to Charleston.  The trees were still colorful but clearly past their peak.  Still some vibrant reds, oranges and yellows in a few shady spots, but a lot of dead brown leaves in a lot of places.  Kim split the driving, which was a nice treat for me!

Mom was in better shape physically and mentally and more optimistic when we arrived.  We unloaded our packing supplies then took mom to dinner at Olive Garden.  Dropped mom off and checked into our hotel - Four Points Sheraton on Kanawha Boulevard, formerly the Charleston House hotel, directly across from the Levee.  I must say I was pleasantly surprised - the property was much nicer than when it was the Charleston House, and the rooms were very comfortable.  Chuck got in very late.

Kim and I had breakfast at Panera's and then drove to mom's apartment to get started with the final packing.  Chuck and I packed up stuff in mom's area of the basement and carried the items upstairs.  A lot of unimportant things we left behind - rocks from family vacations, etc.  We got the artwork and mom's hanging clothes wrapped and put them in the back of Chuck's van.  We then tackled all of the rest of the rooms and items other than the refrigerator.  Mom gave a lot of things away - 6 metal shelving units, file cabinet, some miscellaneous furniture, grandma's plant, etc.  Chuck and I carried them down and left them in the alleyway.  They didn't stay there long - the locals carried them away quickly.  One younger Russian lady took most of it and was very grateful and pleased as she carried it down the street in many trips.

It took all 4 of us all afternoon to get it done, but we finished around 4PM, in time to go back to the hotel and watch the last few minutes of the WVU/Baylor game.  We left some stuff for the landlord to clean up (he wasn't much of a landlord, so we didn't feel bad).  Mom paid a security deposit 20+ years ago, but the property had changed hands twice, and we knew she wouldn't get anything back.  He needs to do a lot of work before he can rent it out again.  With both kitchen faucet handles turned wide open, it takes at least a minute to fill a 16-oz cup - ridiculous!  I don't know how mom put up with it for as long as she did.

Mom was wiped out but took a nap in Chuck's room.  The hotel is connected to an awesome venue on Summers Street called Recovery Sports Bar, and we headed there for dinner since we were all tired.  It was pretty full since the Marshall game was on, and lots of people were wearing green and white.  Highly recommended - the food was excellent, pretty inexpensive, and large portions.  After dinner, Chuck put mom to bed in his room, burned a thumb drive on his Apple MacBook with the Ice Bucket video, then went out to meet his childhood buddy Kelly C. since he wasn't sure when he might get back to Charleston in the near future.  Unfortunately, my Windows PC didn't recognize the Apple-formatted thumb drive.

We met in the lobby Sunday morning and had a great breakfast at First Watch on Summers Street.  I highly recommend it, also!  I noticed that mom wasn't wearing her apartment and car key around her neck as usual, so I asked her about it.  We drove back to the hotel and knocked on their door where the maid was cleaning and she had just found it under the pillow on the bed.  Yeah!  The plan was for mom to follow and drive her car behind Chuck's van 4 hours to Charlotte.  None of us were sure she would be up to the challenge, but fortunately she didn't have to drive the entire way.

Kim and I said our goodbyes in the hotel lobby around 10 and headed back up the road while Chuck and mom went to her apartment to pack the fridge and wait for the movers.  The movers arrived around 1PM, and had the entire apartment packed on the truck within an hour - amazing!  It would have taken us many hours to do it ourselves.  They were on the road around 2:30 headed down the WV Turnpike/I-77 to Charlotte.  The moving truck caught up with them, and Chuck asked the passenger if he would drive mom's car the rest of the way, which he was happy to do.   Mom got to ride with Chuck the rest of the way, to everyone's' relief!

They arrived in Charlotte around 7PM, and the movers unpacked everything and left.  Mom got to sleep in her own bed in her new room, and was happy to do so!  I talked to her earlier this week and she is sleeping better and eating regularly and everyone seemed to be adjusting well.  It will be a big adjustment having Mimi living with them and for Mimi to have lots of noise and activities, but we know this is the best move for her.  At age 84, she needs some help, and she will receive that in Charlotte. 

Traveling two weekends in a row took a lot out of me, but I cut the grass Sunday afternoon after we got home.  It felt good to get a little exercise after driving the entire way home.  It is impossible to cut the grass after work now since it is almost dark now when I get home, and soon we will "Fall Back" and it will be dark before I leave work.

Sorry it has been so long between postings, but we needed to take care of family, which we have done.  I'm happy that we got mom moved right away and she will be with family who will nourish her and help with her needs. 

We're making plans to go to Charlotte for Thanksgiving to check in and see the new house.  Dad said he will come up from Pensacola.  We are debating whether to fly or drive.  I am a little concerned about Ebola in the U.S. and the lackadaisical response the feds have taken with allowing so many people around the Ebola outbreak to travel, so I am thinking about driving.  That would also allow us to take a cooler with all of my meds and herbs and bring some food with us to the family party in Charlotte.

Next weekend Kelly and Jean will visit and we'll go see Cirque du Soleil at the Giant Center at Hershey!

Positive Mental Attitude

This can be a good day or a bad day - my choice.
I can be happy or sad - my choice.
I can complain or I can cope - my choice.
Life can be a chore or a challenge - my choice.
I can take from life or give to life - my choice.
If all things are possible,
How I deal with those possibilities is - my choice.
Steve Shackel

"The longer we dwell on our misfortunes,
the greater is their power to harm us".Voltaire

My speech continues to worsen.  Even Kim and my boss Dave have a difficult time understanding what I am trying to communicate.  I emailed OVR last night to see if they had received the report from Schanzenbach from my 9/17 meeting about getting a tablet and text/pictures to speech application and Nancy indicated no.  She said she would follow up with them.  I have had to resort to writing several things this week because people couldn't understand my speech - first time that has happened. I've had a difficult time lying on my stomach the last few times at acupuncture.  My sinus allergies are so bad right now that I feel like I can't breathe after 2 minutes with my head down.  On Friday she had me lie on my side so she could needle my back.  Today I was able to tough it out for about 35 minutes before she flipped me over on my back to work on my neck for speech and swallowing issues.  I drooled saliva the whole time - gross!  Dr. Williams was a little disappointed that my speech and swallowing have gotten worse.

My order of Lunasin (natural soy supplement) should be here on Friday.  I'm anxious to see if the pills will help my speech and swallowing as they have helped other people with Bulbar ALS.

I've been doing lots of research and communicating with other PALS to see what they are doing proactively to extend their lives and slow down the progression of their ALS.  People are recommending a high fat, low carb Ketogenic diet and also a set of nutritional supplements referred to as the Deanna Protocol (DP), developed by a father for his daughter.  The DP ingredients are expensive, but I am going to order a month's worth and see if it helps.  DP also suggests some light exercise such as stretching, range of motion, etc.  I've started doing Tai Chi and Qigong exercises in the morning which do both.

Everyone agrees that a Positive Mental Attitude (PMA) is the most important thing that a PALS can do to help themselves and their loved ones.  Never give up hope, and always look at the bright side.  The cup is half full, not half empty!

Bucket List Alert - Fishing

I am very fortunate to have some compassionate friends who want to help me fulfill my bucket list.  On Thursday evening, my friend Pat G. from Baker invited me to go fishing with him on the Susquehanna River.  He has a nice bass boat, and told me all I had to do was show up and have a valid PA fishing license - he would supply everything else.  We agreed to meet at his house in Marysville at 5:30PM.

The last time I went fishing was in my backyard in Lancaster, which backed up to the Little Conestoga Creek and was stocked with trout by the PFBC.  That was probably at least 14 years ago.  The only fish I ever saw in the creek were some healthy carp.  I tried to catch fish quite a few times during the 7 years we lived on Bob White Lane, but can't remember ever catching anything other than our wet dachshund who slipped into the creek.

I spent quite a bit of time fishing with my buddies in South Charleston in my youth through age 23 when I stopped working for the phone company and dropped back into college, including many weekends on banks of the Kanawha River near the storm sewer outlet in Kanawha City.  I still have many of my fishing rods and lures from 30+ years ago. 

The biggest bass I ever saw was a large mouth that my friend Webster caught on Sherwood Lake in eastern WV.  Dave, Webster, Mike and I spent many a night on the Kanawha River and on various camping/fishing/drinking trips, and we did catch some fish.  Like fishing on the Susquehanna River, fishing on the Kanawha was catch and release because we knew the river was polluted.

Since it had been such a long time since I had been fishing with someone else - easily 30 years - I was very excited to join Pat and fish on the river.  It was a beautiful fall evening, warm when we started, slightly cloudy, and a half moon in the sky.  We drove down to the I-81 bridge in Marysville and put the boat in the water.

Captain Pat
 

Pat motored us up above the bridge several hundred meters, then we stopped the motor and drifted back down.  It was neat to look up under the bridge and Pat had some interesting stories to tell about it.  He pointed out the pins that are supposed to keep the bridge from falling into the river in case of a structure failure, and pointed out where all the piers had cracked and how they had placed the steel turnbuckles around the top of each bridge pier to strengthen them.

It's not easy for me to hold a smile these days due to weak facial muscles, but I had a big smile on my face the whole evening!

 

We were fishing for small mouth bass using plastic worms.  Pat had about 8-10 fishing rods ready to go.  When it gets dark it is difficult to see to tie knots in the boat, so everything was already baited.  They were all spin casting rods - raise the bail, finger the line, and cast.  Work the crank and reel it in, working the tip to try to interest a fish.  Like riding a bike, I figured it out quickly.

I caught the first smallmouth after about 10 minutes, a nice sized 12-incher.  It put up a pretty good fight, and Pat took a picture.  I caught one additional 12-incher the rest of the evening and had several on the line but failed to set the hook.  You forget a lot after 30 years absence!  Two of them seemed much larger than the 12-inchers I did land, but since we didn't get them near or into the boat, not sure how big.

Pat caught a very nice 15-inch and a 14-inch and also missed several that swallowed the bait.  We motored upriver a total of 3 times and drifted down past the bridge before heading back up each time.  It was pretty quiet when we were several hundred yards above the bridge but got increasingly louder as we drifted closer.  With the half moon, lights from the bridge, and lights from the Enola train yard it was easy to see even after it turned dark.

We left the river in the dark around 7:30, a successful night!  Thanks, Pat, for helping me with my bucket list and for being my friend!  Now I have my fishing license and hope to go again soon.  I need to check my rods and lures, replace the old and probably rotten fishing line, and figure out my next excursion.

Normal Acupuncture vs. Intense Acupuncture

I've been discussing my extreme acupuncture for the treatment of ALS, and apparently I have made some people who have considered medical acupuncture for the treatment of pain or allergies uncomfortable and reconsider acupuncture as the means to help them with their problem.  Several of you have contacted me saying that after reading my blog you will no longer consider acupuncture. 

Please let me set the record straight.  I am using the terminology "intense acupuncture" to refer to the treatment that my doctor is providing to combat my ALS disease.  99.999% of people who receive treatment from a qualified acupuncture medical doctor will NEVER receive any of the treatments I am blogging about.  This is a life and death procedure I am attempting, NOT standard acupuncture.

My first few sessions with my medical acupuncturist focused on relieving some of my symptoms such as chronic allergies/sinusitis, TMJ pain, muscle spasms, etc.  The doctor used the standard, very thin, solid acupuncture needles for these treatment sessions.  Standard acupuncture needles are very thin and not hollow like a hypodermic needle, that is why they don't hurt when inserted. 

Twirling the needles once inserted or moving them up and down to stimulate the acupressure point can sometimes be a little uncomfortable, but the discomfort is minor.

Most Chinese herbs dispensed by acupuncture medical doctors in the U.S. come packaged in pill form (see previous picture on my blog of the back of one of these boxes).  Because the herbs used to treat ALS are not that commonly dispensed, my doctor is growing them and preparing them especially for me.  As a result, they are not in pill form and must be ingested.  Yes, they taste and smell terrible.  But if there is a 10% chance of slowing my ALS progression, it is worth it,

Millions of people in the U.S. seek acupuncture treatment for a variety of ailments.  The number grows every year as the cost of other medical treatments and drugs continue to increase.  Acupuncture has no side effects unlike most prescription medicines advertised in magazines and on TV with side effects like death, blindness, diabetes, stroke, etc.  Acupuncture is very safe, and has been used in China and other far eastern cultures for thousands of years and people are more likely to see an acupuncturist than a medical doctor for treatment.

So, if you have considered acupuncture but have been dissuaded by reading my blog, give acupuncture a try!  It is a very effective treatment for many medical issues, and especially for chronic pain.  Find a good medical acupuncture doctor.  My wife's coworker recommended Dr. Williams based on her own successful treatment.

The extreme acupuncture I am writing about is for treatment of ALS.  I did some research online about acupuncture and ALS, and nobody reported any ill effects from their acupuncture treatment.  However, only a few PALS felt that it really helped them with their ALS condition. 

I asked my doctor about a medical article regarding acupuncture coupled with injection therapy at the acupuncture sites with a homeopathic substance called Enercel.  Dr. Williams checked them out and indicated she didn't think it was worth trying. 

She did some research on Chinese treatments for ALS by contacting one of her grandfather's acupuncture students in China (now in his 80's), who provided her with a medical treatment article involving a small number of Chinese patients treated with extreme acupuncture over a several month period combined with Chinese herbs.  Most people in the Chinese study were treated on a daily basis, whereas I am being treated three times a week following a similar regimen.  According to the article, more than half of the treated PALS reported improvements in their condition, with several reportedly being completely cured.

I apologize if I confused the issue about normal acupuncture and my extreme acupuncture.  They are entirely different.  If you have considered trying acupuncture for a health condition, I strongly recommend that you try it!

Thanks for reading!