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!
Saturday, October 25, 2014
Wednesday, October 8, 2014
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
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!
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
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!
Sunday, October 5, 2014
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.
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.
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!
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!
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!
Tuesday, September 30, 2014
Intense Acupuncture, Week 3
On Friday, I lay on my back and we punctured my toes, the inside of my cheek, and under my tongue to bleed me with a large bore hypodermic needle. Then we focused on my neck area.
She also gave me the formulated Chinese herbs I had been waiting for in a pickle jar with the instructions to take twice a day after eating, morning and evening. They are coarsely ground and look kind of like sea oats. To be sure that I wasn't allergic, she asked me to start with a teaspoon Friday night, and then a heaping tablespoon for each subsequent dose if I wasn't allergic.
She warned me it wouldn't taste good, and it was okay if I mixed it with orange juice. It smelled horrible, and tasted significantly worse!!! I didn't have any OJ Friday night so tried adding to cranberry juice. It was lumpy, smelled terrible, and I had a terrible time swallowing it. It took me about 15 minutes to work up the courage to try it. I ended up with whole pieces of bitter and pungent herbs in my mouth and I actually vomited part of it back up it was so terrible.
Saturday morning I took two loads of stuff from the basement to the Salvation Army and got some OJ on the way back. It was better when I mixed it with OJ as she suggested and ground it up in my NutriBullet, but I still didn't have the liquid/herbs mix correct, so there were chunks left at the bottom of the glass that I couldn't swallow and stayed in my mouth and almost made me throw up again.
Fortunately, in a few days I have gotten better at the consistency and quantity of juice that is required to grind it up in my NutriBullet and get it down quickly and in a single breath. If I have to come up for air and then swallow the rest of it, the taste is horrendous. I told Kim on Saturday that it was like trying to eat vomit! I now have a glass of water and some mouthwash standing by to get the taste out of my mouth as quickly as possible. The smell when I open the jar doesn't make me gag anymore, so I guess I am adjusting. I will finish the last of what she gave me tomorrow morning and she will have more for me when I see her tomorrow.
On Monday, I lay on my stomach and we did the "mosquite bites" procedure on my upper back, where she jabs me very quickly many times with a regular hypodermic needle to get my back to bleed. I could feel the rivulets of blood on my back and some ran down the side of my neck.
She followed this up with heavy duty suction devices and left 3 large "pepperoni" marks on my back, two on the right side of my spine and one on my neck. They hurt a lot worse today than they did yesterday. Then she had me flip me over on my back again, worked on my neck to try to affect my speech, swallowing, and jaw muscles, then pricked my fingers, and vigorously massaged my ears to affect all of the acupressure points.
No noticeable differences yet, although my swallowing seems slightly better. It is still taking me longer and longer to get through a meal. Hopefully after a few weeks of being on the herbs and the intense acupuncture we will start to see a difference! Keep those prayers coming!
She also gave me the formulated Chinese herbs I had been waiting for in a pickle jar with the instructions to take twice a day after eating, morning and evening. They are coarsely ground and look kind of like sea oats. To be sure that I wasn't allergic, she asked me to start with a teaspoon Friday night, and then a heaping tablespoon for each subsequent dose if I wasn't allergic.
She warned me it wouldn't taste good, and it was okay if I mixed it with orange juice. It smelled horrible, and tasted significantly worse!!! I didn't have any OJ Friday night so tried adding to cranberry juice. It was lumpy, smelled terrible, and I had a terrible time swallowing it. It took me about 15 minutes to work up the courage to try it. I ended up with whole pieces of bitter and pungent herbs in my mouth and I actually vomited part of it back up it was so terrible.
Saturday morning I took two loads of stuff from the basement to the Salvation Army and got some OJ on the way back. It was better when I mixed it with OJ as she suggested and ground it up in my NutriBullet, but I still didn't have the liquid/herbs mix correct, so there were chunks left at the bottom of the glass that I couldn't swallow and stayed in my mouth and almost made me throw up again.
Fortunately, in a few days I have gotten better at the consistency and quantity of juice that is required to grind it up in my NutriBullet and get it down quickly and in a single breath. If I have to come up for air and then swallow the rest of it, the taste is horrendous. I told Kim on Saturday that it was like trying to eat vomit! I now have a glass of water and some mouthwash standing by to get the taste out of my mouth as quickly as possible. The smell when I open the jar doesn't make me gag anymore, so I guess I am adjusting. I will finish the last of what she gave me tomorrow morning and she will have more for me when I see her tomorrow.
On Monday, I lay on my stomach and we did the "mosquite bites" procedure on my upper back, where she jabs me very quickly many times with a regular hypodermic needle to get my back to bleed. I could feel the rivulets of blood on my back and some ran down the side of my neck.
She followed this up with heavy duty suction devices and left 3 large "pepperoni" marks on my back, two on the right side of my spine and one on my neck. They hurt a lot worse today than they did yesterday. Then she had me flip me over on my back again, worked on my neck to try to affect my speech, swallowing, and jaw muscles, then pricked my fingers, and vigorously massaged my ears to affect all of the acupressure points.
No noticeable differences yet, although my swallowing seems slightly better. It is still taking me longer and longer to get through a meal. Hopefully after a few weeks of being on the herbs and the intense acupuncture we will start to see a difference! Keep those prayers coming!
Failure to Launch!
This post is a difficult and emotional one for me to write.
Melanie and I rescheduled our tandem skydiving to this past weekend. We were excited! It was beautiful weather, warm, great weather for a jump day! Mike at the Maytown Sport Parachute Club instructed us to show up at noon. We were there on time, and it wasn't very crowded at noon. John took us right into the classroom to watch a video about the risks of skydiving and to sign our lives away - I think there were probably close to 50 paragraphs we had to read and initial indicating we wouldn't sue in case of accident or death, and our heirs wouldn't sue either.
I gave Mel the opportunity to choose whether to jump first or second. She chose first, afraid that if she waited she might chicken out. She put on her jump suit with John and went through the drill of how to get out of the airplane and what the videographer Mike wanted her to do. After about a 30 minute wait for others on the manifest to jump and refueling the plane. Mel, John and Mike boarded and went skyward. About 12 minutes later, we saw them overhead exiting the plane at 10,000 feet, tine specs. Then we saw John's drogue deploy to slow them to 120 mph (instead of 170mph) and Mike circling them taking video. After a little less than a minute, John's chute deployed and Mel and John floated to earth. Mel got to steer the parachute and they did a lot of tight turns that she said were a lot of fun. They landed without incident and Mel was all smiles.
While Mel was in the air, Chuck and I suited up and Chuck walked me through what was expected to get into the tandem rig and exit the airplane. There was one flight manifest between Mel's jump and mine.
When Mike got his chute repacked, he walked over and talked to me about the video and what I should do when we were freefalling. We waited for another manifest in front of us to jump and the plane to refuel, then it was our turn. We had another lady with us in the plane who took a "short jump" at 4,000 feet. She looked like she was in her 60's, and she indicated she had jumped about 6,000 times since she started in 1970.
It was a breath of cool fresh air when they opened the door at 4,000' feet and she jumped. They closed up the door and we started our climb to 10,000 feet. It takes a while. The scenery was beautiful!
I made a mistake when I put on my jumpsuit. Due to ALS, my mouth alternates between too much saliva and being totally dry. I remedy the dryness and stifle the urge to gag by sucking on small sugar free lozenges. I had quite a few with me, and I put one in my mouth before I got my jumpsuit and tandem harness on. However, I neglected to plan ahead, and having waited almost 30 minutes with my jump suit on before boarding the plan, my lozenge was gone shortly after the lady jumped and I had no more at hand - they were buried in my pants pocket and inaccessible. Maybe if I had a drink before I got on board I would have been okay, maybe not.
Normally, this wouldn't be too bad, but with my heightened excitement (okay, I was appropriately scared) about jumping out of a plane, I started feeling like I was going to gag on our climb to 10,000 feet. That happens to me fairly often these days, but the lozenges work well. Unfortunately, I couldn't access them in my pocket with my harness and jumpsuit on. I started gagging around 8,000 feet and thought I might vomit in the back of this small plane.
Chuck was concerned and told me if I had to vomit to do so in my helmet - they don't carry barf bags like a commercial flight and it would be a real mess and ruin everyone else's afternoon if they had to smell it on their ascent after my plane ride. I didn't barf, but it was a near thing. I felt like I was starting to get some control back as we approached 10,000 feet and felt I could exit the plane for the jump, but Chuck and Mike quickly decided that it wasn't worth the risk - for Chuck and for me. The jump masters take their life and their passenger's life in their hands for every tandem jump, and if someone is in distress like I was, it is always safer to abort and retry.
So, after fifteen years of waiting to do the deed and jump out of an airplane, I came very close, but failed to launch. My body let me down this time. Obviously, I was extremely disappointed, but I respect the difficult safety call that Chuck had to make. I was clearly in distress, and I have no doubt that he made the correct decision and credit him for doing so.
I was defeated and morose as we flew back to the ground. Chuck and Mike were very sympathetic, and Chuck told me several times to keep my chin up. We went back into the classroom to talk about what happened. They gave me every chance to convince them I could use the lozenges to control the gagging and was ready to go back up and try again, but I felt that I couldn't face a second disappointment if it happened again and I was concerned that even with a drink ahead of time and several lozenges it could still happen. So, I decided not to wait for a new manifest and try again that afternoon.
I am very happy that Mel succeeded and that she had such an incredible freefall and canopy experience. She said she would do it again and when I am ready she will go with me again. She should have her video later this week and I look forward to seeing it.
My third attempt wasn't the charm that I hoped it would be, but I know what to expect now and I hope that I have a chance to try again and am successful the next time. It was definitely a life experience and a learning experience, just not the one I expected.
Melanie and I rescheduled our tandem skydiving to this past weekend. We were excited! It was beautiful weather, warm, great weather for a jump day! Mike at the Maytown Sport Parachute Club instructed us to show up at noon. We were there on time, and it wasn't very crowded at noon. John took us right into the classroom to watch a video about the risks of skydiving and to sign our lives away - I think there were probably close to 50 paragraphs we had to read and initial indicating we wouldn't sue in case of accident or death, and our heirs wouldn't sue either.
I gave Mel the opportunity to choose whether to jump first or second. She chose first, afraid that if she waited she might chicken out. She put on her jump suit with John and went through the drill of how to get out of the airplane and what the videographer Mike wanted her to do. After about a 30 minute wait for others on the manifest to jump and refueling the plane. Mel, John and Mike boarded and went skyward. About 12 minutes later, we saw them overhead exiting the plane at 10,000 feet, tine specs. Then we saw John's drogue deploy to slow them to 120 mph (instead of 170mph) and Mike circling them taking video. After a little less than a minute, John's chute deployed and Mel and John floated to earth. Mel got to steer the parachute and they did a lot of tight turns that she said were a lot of fun. They landed without incident and Mel was all smiles.
While Mel was in the air, Chuck and I suited up and Chuck walked me through what was expected to get into the tandem rig and exit the airplane. There was one flight manifest between Mel's jump and mine.
When Mike got his chute repacked, he walked over and talked to me about the video and what I should do when we were freefalling. We waited for another manifest in front of us to jump and the plane to refuel, then it was our turn. We had another lady with us in the plane who took a "short jump" at 4,000 feet. She looked like she was in her 60's, and she indicated she had jumped about 6,000 times since she started in 1970.
It was a breath of cool fresh air when they opened the door at 4,000' feet and she jumped. They closed up the door and we started our climb to 10,000 feet. It takes a while. The scenery was beautiful!
I made a mistake when I put on my jumpsuit. Due to ALS, my mouth alternates between too much saliva and being totally dry. I remedy the dryness and stifle the urge to gag by sucking on small sugar free lozenges. I had quite a few with me, and I put one in my mouth before I got my jumpsuit and tandem harness on. However, I neglected to plan ahead, and having waited almost 30 minutes with my jump suit on before boarding the plan, my lozenge was gone shortly after the lady jumped and I had no more at hand - they were buried in my pants pocket and inaccessible. Maybe if I had a drink before I got on board I would have been okay, maybe not.
Normally, this wouldn't be too bad, but with my heightened excitement (okay, I was appropriately scared) about jumping out of a plane, I started feeling like I was going to gag on our climb to 10,000 feet. That happens to me fairly often these days, but the lozenges work well. Unfortunately, I couldn't access them in my pocket with my harness and jumpsuit on. I started gagging around 8,000 feet and thought I might vomit in the back of this small plane.
Chuck was concerned and told me if I had to vomit to do so in my helmet - they don't carry barf bags like a commercial flight and it would be a real mess and ruin everyone else's afternoon if they had to smell it on their ascent after my plane ride. I didn't barf, but it was a near thing. I felt like I was starting to get some control back as we approached 10,000 feet and felt I could exit the plane for the jump, but Chuck and Mike quickly decided that it wasn't worth the risk - for Chuck and for me. The jump masters take their life and their passenger's life in their hands for every tandem jump, and if someone is in distress like I was, it is always safer to abort and retry.
So, after fifteen years of waiting to do the deed and jump out of an airplane, I came very close, but failed to launch. My body let me down this time. Obviously, I was extremely disappointed, but I respect the difficult safety call that Chuck had to make. I was clearly in distress, and I have no doubt that he made the correct decision and credit him for doing so.
I was defeated and morose as we flew back to the ground. Chuck and Mike were very sympathetic, and Chuck told me several times to keep my chin up. We went back into the classroom to talk about what happened. They gave me every chance to convince them I could use the lozenges to control the gagging and was ready to go back up and try again, but I felt that I couldn't face a second disappointment if it happened again and I was concerned that even with a drink ahead of time and several lozenges it could still happen. So, I decided not to wait for a new manifest and try again that afternoon.
I am very happy that Mel succeeded and that she had such an incredible freefall and canopy experience. She said she would do it again and when I am ready she will go with me again. She should have her video later this week and I look forward to seeing it.
My third attempt wasn't the charm that I hoped it would be, but I know what to expect now and I hope that I have a chance to try again and am successful the next time. It was definitely a life experience and a learning experience, just not the one I expected.
Tuesday, September 23, 2014
Intense Acupuncture, Round 2 - No Pain, No Gain
I count myself very fortunate to have found a true Chinese acupuncture medical doctor. Last week we started a 3-day a week regimen. Instead of splitting her time working with 2-3 other patients simultaneously, she works with me for a solid hour. Oh, and she sees me on Wednesdays, which is her day off. Dr. Williams truly cares about her patients, and she is really trying to help me.
We haven't pricked fingers and toes again since my first two sessions, but she does prick under my tongue every visit with a large bore needle to get it to bleed. Today the last two were brutal. There were tears running from my eyes, and I may have grunted once, but I bore it stoically and gratefully. It hurt to eat tonight, and it hurts now. Ice cream helps some. :)
She works all of the needles hard, twirling them as well as bouncing them up and down. They hurt a fair amount, but the pain is worth it. Since the needles are often right on the nerve, twirling them or moving them up and down can cause jolts of sensation. I do bleed some. She asked me to stop taking baby aspirin for my high blood pressure to hopefully cause less bleeding.
On Friday last week, she indicated we were going to work on my swallowing. It involved a lot of needles in my scalp and neck, both front and back. It feels like one of the needles goes in very deep into my neck.
Guess what! My swallowing reflex was better over the weekend! I was able to swallow some of the larger vitamins that I hadn't been able to swallow for several weeks. I was also able to keep my full mouth guard in overnight, which I hadn't been able to do for several weeks.
We did another swallowing treatment again today, so I am anxious to see if I have additional improvement. I told her my speech was worse today, so she said we would work on it. Tonight I thought she was trying to drill them through the side of my skull. I think that was probably working on my verbal center. I'll be very interested to see what happens tomorrow morning.
Dr. Williams indicated the Chinese herbs should be ready on Friday. She indicated I probably wouldn't like the taste, but I will take my medicines with a smile.
She also suggested Tai Chi and Qi Gong exercises in addition to some hand exercises and finger rubs on the head to stimulate all of the acupressure points in the hands and scalp. I started with a Tai Chi DVD this morning and plan to continue every morning before work. The slow movements, coupled with deep breathing, should help me with flexibility, muscle strength, breathing, and stress.
I go back to acupuncture again tomorrow at lunchtime and again Friday. I have high hopes! It truly is a case of No Pain, No Gain! Can't wait to start the Chinese herbs and see what affect they may have.
Thanks for caring, and thanks for reading!
We haven't pricked fingers and toes again since my first two sessions, but she does prick under my tongue every visit with a large bore needle to get it to bleed. Today the last two were brutal. There were tears running from my eyes, and I may have grunted once, but I bore it stoically and gratefully. It hurt to eat tonight, and it hurts now. Ice cream helps some. :)
She works all of the needles hard, twirling them as well as bouncing them up and down. They hurt a fair amount, but the pain is worth it. Since the needles are often right on the nerve, twirling them or moving them up and down can cause jolts of sensation. I do bleed some. She asked me to stop taking baby aspirin for my high blood pressure to hopefully cause less bleeding.
On Friday last week, she indicated we were going to work on my swallowing. It involved a lot of needles in my scalp and neck, both front and back. It feels like one of the needles goes in very deep into my neck.
Guess what! My swallowing reflex was better over the weekend! I was able to swallow some of the larger vitamins that I hadn't been able to swallow for several weeks. I was also able to keep my full mouth guard in overnight, which I hadn't been able to do for several weeks.
We did another swallowing treatment again today, so I am anxious to see if I have additional improvement. I told her my speech was worse today, so she said we would work on it. Tonight I thought she was trying to drill them through the side of my skull. I think that was probably working on my verbal center. I'll be very interested to see what happens tomorrow morning.
Dr. Williams indicated the Chinese herbs should be ready on Friday. She indicated I probably wouldn't like the taste, but I will take my medicines with a smile.
She also suggested Tai Chi and Qi Gong exercises in addition to some hand exercises and finger rubs on the head to stimulate all of the acupressure points in the hands and scalp. I started with a Tai Chi DVD this morning and plan to continue every morning before work. The slow movements, coupled with deep breathing, should help me with flexibility, muscle strength, breathing, and stress.
I go back to acupuncture again tomorrow at lunchtime and again Friday. I have high hopes! It truly is a case of No Pain, No Gain! Can't wait to start the Chinese herbs and see what affect they may have.
Thanks for caring, and thanks for reading!
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