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!