My Electronic Voice and new treatment therapies

After struggling for months to be understood, Kim and I decided that I should buy a new iPad tablet and software to allow me to communicate.  It was becoming very frustrating for both of us to not be able to understand my unintelligible speech.  I tried to find something that would work on my old iPad 1, but since it wouldn't upgrade to iOS 7, it doesn't download new programs and many of my old programs crash regularly.  At this point it is really only useful for emails and storing music and photos.

I was able to find an iPad Air on sale and researched available Augmentative and Alternative Communication (AAC) software.  Schanzenbach had originally recommended Proloquo2Go, which uses symbol grids to communicate, but I felt it was targeted more at children and people without the ability to type.  I looked at Proloquo4Text, and decided to try it.  It allows me to configure and "bank" different shortcuts for commonly used words, phrases, etc. and has a pretty good word/phrase prediction engine.  Now I just need to become a better and faster typist!

I also bought a protective case with a Bluetooth keyboard and an external Bluetooth speaker to boost the volume and clarity of the AAC device, which will work up to 30' away.  I am still getting used to my new AAC capabilities and having some difficulty with the small Bluetooth keyboard and being able to type quickly enough to carry on a conversation. 

I tried a couple of phone calls this week using the speakerphone and my external speaker with limited success - I need more experience.  When I called Kim the first time and didn't hit the Play button quickly enough, she hung up on me.  When I redialed and she picked up and heard an electronic voice asking her questions, she asked "WHO IS THIS!?".  She figured it out when I started laughing.

I have a few presentations and meetings in the next few weeks, so I am hopeful to see some improvements this week as I gain familiarity and get things set up in the software to be more efficient.  I forgot my iPad on Friday and tried to use my iPad 4s phone in my afternoon meeting, but quickly got frustrated with the tiny iPhone keyboard.

I finally asked for a disability accommodation at work and they put me in touch with a CIGNA assistive technology and ergonomics specialist who is now working to try to find a good solution for me to use at work that may be more portable than my larger iPad Air.  She also indicated she could do an ergonomics evaluation of my office to determine if there is anything they can do to help me be more comfortable.  Since I started having some shoulder and neck pain in the afternoons and evenings this week, I plan to ask her to perform the ergonomics study.

It has been a week since my last acupuncture treatment.  I still have some deep bruises on my legs from the last treatment I received.  I am not missing the painful treatments or Chinese herbs!

My muscle spasms are still pretty bad.  I started taking Baclofen a week ago to see if that would help but haven't noticed any improvement yet.  I am taking half a tablet 2-3 times a day and can go up to a maximum of 3 tablets a day.  It can cause drowsiness, so I am cautious about increasing too much right away.

I saw my internal medicine doctor for the last time last week.  He is leaving the practice at the end of the year after 21 years as he is tired of the daily grind of seeing 25 patients every day and the ever increasing workload that has to be taken care of outside the office on evenings and weekends.  One thing he did was prescribe a nasal steroid, Flonase, to get me off Afrin to see if it will help me breathe better at night.  I can't sleep on one side all night long like I used to and usually end up sleeping propped up in bed in a sitting position for an hour or more every night until my sinuses clear up enough to be able to lie flatter again.  I'm not sure if that is the cause of my neck and muscle pain or if it is an ALS symptom.

I ordered some magnesium chloride from Amazon last week as well as some books, including "Eric is Winning" and "The ALS Diet".  It had been on my list of ALS treatments to research since several PALS on the Inspire website indicate it has helped them.  It can be ingested as well as applied to the skin, both of which may help with symptoms. 

Kim and I are in State College this weekend visiting Jean and Kelly.  I went to Wegman's on Saturday to get some sushi and do some grocery shopping for Jean since her car is at the garage.  I ran into my friend Patty B. who works there and she was very kind and gave me lots of hugs as we met each other different places throughout the store.  She reminded me that I haven't updated my blog much recently, so thank Patty for this blog posting.  I hope to see Patty and Eric over the Christmas holidays while we are in State College.  I also got Ellen and Bob's email from Jean so that I can thank them for sending me so many wonderful and uplifting cards.

We ordered out a Home Delivery Pizza last night.  I tried my first gluten free pizza crust, and was very disappointed.  It was tasteless and didn't have a nice texture.  No seasonings, which would have made it better.  Couldn't taste the pizza sauce.  Although it can be a lot of work, I think we need to make our own gluten free pizza crust.  I'm not ready to give up on pizza in my diet!  I tried some Udi's gluten free cinnamon raisin bread this morning, and it was pretty good.

I made some decent beef stew late last week and we had that for dinner Friday night.  I only had London Broil in the freezer, so the meat was a little tougher than what I would normally use.  It is a good meal for a cold day, and we'll be eating more of it this week in response to the blast of frigid air coming our way.

I guess the final bit of news I'll leave you with is that an independent writer for a local magazine contacted me about a week ago to ask if I would answer some questions for an article about ALS that the editor wants to include in the December edition.  I sent her my answers to the last of her questions yesterday and am waiting to see if she has any follow up questions this week.  I look forward to reading the completed article!

More Anniversaries Today

Today marked 3 years at Michael Baker.  Time flies when you are having fun!

Today was also the 6 month anniversary of my ALS diagnosis in May at Hershey Medical Center.

This week I dropped to 2 days a week for acupuncture due to the costs of the treatment, and today my doctor told me that we should take a break for a month and see how the Deanna Protocol goes.  I am ready for a break. 

I am just finishing Week 3 of the DP, and I have been taking Fuel for Thought (F2T) for 10 days now to get the full benefits of the DP by maximizing the amount of coconut oil/caprylic acid/multi chain triglycerides (MCTs).  Supposed to get 12 Tbsps/day if possible - not easy to do ingesting coconut oil.  Two doses of F2T is supposed to provide that much.  I am very hopeful that we can slow down the progression of the disease and possibly regain some of the function that I have lost, especially improvements in speech and swallowing.

I started using my PowerLung this week to exercise my lungs and diaphragm and hopefully improve my Forced Vital Capacity score when I go to my third ALS clinic next month. 

If my sinuses and allergies improved, I would sleep a lot better and feel a lot better.  I see my primary doctor on Monday and am going to ask for a referral to an Ear Nose and Throat expert to see if they can figure out what is going on.  I can't lie flat and breathe through my nose.

I decided not to wait any longer on getting some communications software.  I have a big project kickoff meeting in 2.5 weeks, I'm visiting family in Charlotte for Thanksgiving, and I need to be able to communicate with Kim, work, and friends daily.

It has been very frustrating over the last month not being able to communicate verbally with Kim, family, friends, and coworkers.  Only Ty at the PA Turnpike seems to be able to understand anything I say anymore, and he is only getting about 1/3 of it.  I have been reduced to writing notes to communicate.  Kim isn't very happy that we can't communicate better than we do.  I can't wait for OVR or Baker to take care of this for me, I have to do it myself.  It's time.

I need a new iPad to run the communications board software since my ancient iPad 1 isn't upgradeable to iOS 7 which the software requires.  It works about half the time and crashes often.

I ordered a new iPad Air tonight (v1, since the v2 is getting bad ratings for sound vibrations) plus a smart cover and Bluetooth wireless keyboard/stand.  Now that I'm not spending large sums of money for acupuncture any more, it seems like a good decision.  I pick up my new iPad Air at Staples tomorrow morning and will download the Proloquo2go software from the iTunes App Store and start learning how to use it this weekend.

Knudson Brothers Ice Bucket Challenge 9/11/2014 at Estes Park, CO

I've been waiting for brother Chuck to provide the video for a few weeks, and finally have a copy.  Thanks to Chuck, Forest, and Don for an amazing trip and amazing ALS Ice Bucket Challenge.  Thanks to Chuck for a great video edit!  Love you all!

This is difficult to watch.  You can tell how emotional we all were and how much my speech has degraded.  But you can also see what a great time we had together!  It was a huge bucket list trip for me!

We were challenged by my sister, Amy Burgett.

I challenged my friends I worked with from MapQuest and GeoDecisions.  A few people from each organization have completed the ice bucket challenge.  Thanks to all who did so for me!

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!