Dear friends, thanks for continuing to read. You make me very happy when you reach out in response to something I have written. It has been a long time since I provided an update so I hope you are ready for a really long one!
The holidays were very quiet for us. We missed Kim's dad Bill at Christmas and this was the first year nobody exchanged any presents. We missed having Mel with us also. Kim actually stayed up through the stroke of midnight this year. Usually I have to wake her up so we can see it together.
My condition continues to gradually worsen. But you have to remember that everyone who reported improvements said that they got worse before they got better!
I've lost strength and coordination in my right hand and my legs are weaker. I've fallen once (fell backward from a squatting position) but have come close a number of other times. My handwriting is very poor and very slow, which makes doing my job difficult. I can still type fairly well, but slower and with more typing mistakes. My biggest complaints are my teeth and my sinuses.
Due to the muscle spasms in my face and jaws, I grit and grind my teeth uncontrollably 24/7 and my teeth are wearing down and my jaws and teeth hurt all of the time also. My dentist tried to take a mold of my teeth several months ago but was unable to take an impression due to my gag reflex. Some nights I can tolerate a mouth guard for several hours but it is rare to be able to keep one in all night. And once I remove it my teeth immediately clench strongly and grind. I wake up some mornings with small pieces of mercury amalgam fillings in my mouth. I am afraid that I will start breaking teeth at some point in the next few months unless I can get some relief.
My sinus challenges make it very difficult to breathe at night. I have one position I can breathe comfortably in at night, lying on my left side, my head elevated in a certain position and angle. It's such a narrow range that if I cross my legs to the other side I can't breathe properly. I often spend a couple of hours a night sitting up in bed trying to sleep so that I can breathe through my nose. As a result, I am not getting enough sleep. With the really cold weather I have started having problems breathing through my nose during the day, also. I make noises now when I am trying to breathe normally - nose whistling, throat noises, etc. But that is nothing compared to the noises I make when I eat or drink.
I'm sure part of the problem is the loss of the seal between my throat and sinuses. That means I will probably never be able to scuba dive again.
I have an appointment with my ENT on Monday to see what they can find out and hopefully get some advice on things that may help.
The past week my excess saliva has been worse also. When I open my mouth to try to say hello to someone at work, I often end up drooling instead. Whether drooling, sneezing, coughing, or choking, I usually end up with something on my shirt and pants and am having to launder my pants more often. Gross! Have to increase my meds during the day to compensate for the increased saliva activity.
My Pseudo Bulbar Affect (PBA) is worse also. Last week I had a major crying jag in the morning as Kim was leaving to go to work. I often laugh inappropriately and smile uncontrollably. I wouldn't do well playing competitive poker! Sometimes when I laugh I spray also, which is awful for me and the person standing in front of me, usually Kim. I will have to ask for some medication to attempt to control these symptoms if they get worse.
I am a little frustrated with Hershey Med. I had a heavy metals blood and urine test in December. They called and left a voice message on the home phone saying that nothing showed up on the test results. However, they did not enter the test results into my electronic file and after repeated emails to try to get a copy they suggested that I call the Holy Spirit Lab where the test was done to get a copy for my records and to see what it really said. I want to see my numbers, dang it!!! Kim called the Holy Spirit lab and they said they will print a copy for me if I stop by. Fortunately it is in the same building as the ENT office so I should finally be able to see my numbers on Monday.
Kim and I have talked about having my amalgam fillings removed to see if that will help with my teeth grinding, sinus condition, and ALS symptoms. I hope to get an initial consult at the very least to see what they say and get an estimate for having them all replaced.
I am adding some new supplements based on recommendations in the ALS Diet book starting tomorrow. I already take a lot of pills for someone who has trouble swallowing, but have to keep experimenting until I get a positive response and slow my progression or hopefully, see some improvements. It may take 3-4 months or longer for any supplements to make a difference. I have been on the Deanna Protocol a little over 2 months and it is difficult to say that I have noticed any differences. But if I wasn't on it, would I be worse than I am today? Who knows...?
The ALS diet book has a lot of food recommendations that I am working on, such as ingesting 15 pounds of apples every 10 days - that's a lot of apples. I bought a juicer to make fresh apple and fresh orange juice and I just bought a 36-pound box of organic apples from a local farm.
I am definitely slower! The reduced strength and coordination in my right arm and hand has affected my ability to get ready to go to work in the morning. As a result, I seem to get into the office a little later each week. Shaving and brushing my teeth take longer. On Friday I tried using my left hand to shave and it didn't go too badly. Showering takes longer because I often drop the soap and drying myself takes longer with my reduced dexterity. I have difficulty with my fine motor coordination in fastening collar and sleeve buttons on my dress shirts and have had difficulty fastening some of my pants with buttons also. My belly bulge hasn't gone down any, although I have lost a little more weight, which is not a good thing. I am also having some difficulty eating with my right hand. I can't rotate my wrist and hand to come straight to my mouth so come in at an angle instead.
I eat breakfast at home every morning to try to keep my weight up and have to take my morning Deanna Protocol supplement drink and get out all of my supplements for the day. Before my new supplements arrived this week I had about 20 bottles to deal with and 30 pills. Once I am taking all of my new supplements the number of bottles will be more like 35!
I am still putting in a full 40 hour week at work but because I get into the office later than I used to I have to work later into the evening to put in my hours. I have asked for an accommodation to allow me to work from home part of the time so I don't have to struggle as much in the morning to get in to work to get started.
I filled out the paperwork for my Handicapped Parking placard and picked it up at the DOT this week, which will make the walk from my car into the building shorter. Some days I can walk fairly normally, other days I am very spastic. Going up and down stairs seems to be a little more difficult and I always hold onto the rail for stability and safety.
Have I depressed you? Maybe, but I hope not. Just keeping it real! Battling ALS is a daily struggle, but I am very much in the fight and I am still expecting a turnaround. It's just not happening as quickly as I would like for it to.
I have apparently been polluting my body with poor diet, bad food, lack of exercise, alcohol, sugar, and toxins for 40+ years now and I can't expect my body to bounce back in 2 months just because I have changed my diet and lifestyle. It is going to take longer than that!
Well you've read this far, thank you for hanging in on a long post. Now for some good news! Kim applied for a job at PSU in State College in early November after some difficult discussions and a lot of persuasion and arm twisting by me. She interviewed the week after Thanksgiving. The Applied Research Lab (ARL) offered Kim the job, and this week she received her official offer and accepted the position.
That means that Kim and I will be moving back to State College, where we first met, fell in love, and lived before moving away due to my career needs. Now we are moving back for Kim's career, which seems right and fair. She will finally have her dream job - working at PSU and living once again in Happy Valley. We last lived there in 1993!
It is a good move for us because it will be helpful to live closer to family who can help us and it will be good for Kim's family to have her close by as well. In addition to family we still have some close friends there, more than we have in Mechanicsburg. Kim will live with her mom and I will probably continue to live in the house until it sells for as long as I am able to work and live here safely. One of us will commute on weekends, maybe alternating between State College and Mechanicsburg. Once we sell our Mechanicsburg house we will live with Jean until we figure out where we are going to live in State College. One of the components of the PSU job offer was a relocation package, which is a major benefit for us and certainly helped make a decision.
I've talked to my supervisor about the possibility of working remotely some of the time now. It would be helpful to me to be able to work some of the time from our house in Mechanicsburg or Jean's home in State College instead of getting ready and driving to the office every day. For now, I am capable of commuting to Harrisburg from State College for meetings at the office or with customers if needed. How long I am able to do that is questionable, but if the time comes that I can't safely commute then we will do what we have to do. I am hopeful that we are able to work this out because it would be much less stressful and I would be much more productive if it didn't take me 3 hours from the time I get out of bed to the time I get into the office.
We met with a realtor friend today and our house will officially be on the market early next week. We have a lot of cleanup to do before we are ready for our first showing, but started working on it today.
Please keep your prayers coming! They make a difference! Please pray for strength, patience, healing, to maintain my weight, and for my supplements and diet/lifestyle changes to slow my progression and to recover my capabilities.
It is an exciting time for Kim and me - more new beginnings. New job, new living arrangement, new geography.
Next time I will talk more about my diet and supplements. Stay tuned!
Showing posts with label Deanna protocol. Show all posts
Showing posts with label Deanna protocol. Show all posts
Saturday, January 10, 2015
Saturday, November 1, 2014
One Year Symptom Anniversary
Kim and I celebrated our 27th wedding anniversary last week.
It was a year ago today that I first noticed speech difficulties a week after getting my annual flu shot at work. A lot has changed in that year!
My six month ALS diagnosis anniversary is next week.
I have experienced a continued general degradation in my speech and swallowing during the year. It is very difficult for me to talk and be understood by anyone these days. I am experiencing fairly severe muscle spasms all over my body. I don't sleep very well at night because I have trouble finding a position where I can breathe comfortably with my sinus allergies/ALS symptoms. Some days I feel like my hands and legs are weaker, other days I feel normal.
I met with the Department of Labor and Industry (L&I) Office of Vocational Rehabilitation (OVR) this week to talk about getting a communications board tablet computer and software that has pics/text to speech capabilities to help me with my verbal communications. Also sent an email to Baker HR to request an accommodation to help pay for the device and software.
I started doing morning Tai Chi/Qigong exercises before work to provide stretching, strengthening, energy, and improved breathing. I still do some walking on the treadmill, but not as intense or as long as I used to. I ordered a PowerLung device this week to strengthen my lungs and diaphragm and started doing breath stacking exercises to help also. My Forced Vital Capacity (FVC, measure of lung/breathing health) went down some in my second ALS clinic in September, so I want to do some exercises to keep it from worsening, and hopefully see an improvement at my third clinic in December.
I've been taking Chinese Herbs and doing intense acupuncture therapy for ALS for 6 weeks. I have been on the Deanna Protocol of nutritional supplements for ALS for 2 weeks. The Deanna Protocol suggests ingesting 12 Tbsps of coconut oil every day, but I have had difficulty ingesting 2 Tbsps. I ordered a case of Fuel for Thought (F2T), which provides the equivalent of 15 Tbsps of coconut oil daily in a 2-serving 2.5 oz bottle and I am on day 4. Can't drink it straight, but I am getting it down. F2T is currently being researched for Alzheimer's treatment and has shown benefits for most neurological conditions by providing energy for healthy brain and nerve function.
I hope to see some significant DP benefits by week 4!
Jean, Kelly and Liam are visiting us this weekend and we are going to see Cirque du Soleil Varekai at the Giant Center this afternoon. Should be fun!
NO WHITE FLAGS!
It was a year ago today that I first noticed speech difficulties a week after getting my annual flu shot at work. A lot has changed in that year!
My six month ALS diagnosis anniversary is next week.
I have experienced a continued general degradation in my speech and swallowing during the year. It is very difficult for me to talk and be understood by anyone these days. I am experiencing fairly severe muscle spasms all over my body. I don't sleep very well at night because I have trouble finding a position where I can breathe comfortably with my sinus allergies/ALS symptoms. Some days I feel like my hands and legs are weaker, other days I feel normal.
I met with the Department of Labor and Industry (L&I) Office of Vocational Rehabilitation (OVR) this week to talk about getting a communications board tablet computer and software that has pics/text to speech capabilities to help me with my verbal communications. Also sent an email to Baker HR to request an accommodation to help pay for the device and software.
I started doing morning Tai Chi/Qigong exercises before work to provide stretching, strengthening, energy, and improved breathing. I still do some walking on the treadmill, but not as intense or as long as I used to. I ordered a PowerLung device this week to strengthen my lungs and diaphragm and started doing breath stacking exercises to help also. My Forced Vital Capacity (FVC, measure of lung/breathing health) went down some in my second ALS clinic in September, so I want to do some exercises to keep it from worsening, and hopefully see an improvement at my third clinic in December.
I've been taking Chinese Herbs and doing intense acupuncture therapy for ALS for 6 weeks. I have been on the Deanna Protocol of nutritional supplements for ALS for 2 weeks. The Deanna Protocol suggests ingesting 12 Tbsps of coconut oil every day, but I have had difficulty ingesting 2 Tbsps. I ordered a case of Fuel for Thought (F2T), which provides the equivalent of 15 Tbsps of coconut oil daily in a 2-serving 2.5 oz bottle and I am on day 4. Can't drink it straight, but I am getting it down. F2T is currently being researched for Alzheimer's treatment and has shown benefits for most neurological conditions by providing energy for healthy brain and nerve function.
I hope to see some significant DP benefits by week 4!
Jean, Kelly and Liam are visiting us this weekend and we are going to see Cirque du Soleil Varekai at the Giant Center this afternoon. Should be fun!
NO WHITE FLAGS!
Saturday, October 25, 2014
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!
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!
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!
Subscribe to:
Posts (Atom)