Eating without tasting

You got to cry without weeping
Talk without speaking
Scream without raising your voice

Lyrics from U2 Running to Stand Still

I had a follow-up appointment with my local neurologist on July 21, 3 weeks after diagnosis. He gave me a referral to a gastroentetologist for a feeding tube consultation. It took a while and several phone calls before I finally got an appointment for Aug 30.

School started August 8 and things were in full swing from the get go. By the second week of school I had developed a little cough. When I noticed a coworker coughing the same way I decided to go to my family practice nurse practitioner to nip it in the bud. This same week my cough assist machine broke and I couldn’t do the therapy to break up mucous in my lungs. My nurse practitioner is so awesome. She prescribed a liquid z-pack for my cough, she diagnosed thrush (my mouth has been raw and hurting since December but she was the first medical practitioner to look closely at my tongue) and prescribed an antifungal swish to use 4 times a day. She gave me a Prevnar shot for pneumonia. I told her my husband was going to call Digestive Health to try to get me in sooner because I have been aspirating water and eating more slowly and had lost 5 pounds. She asked if I wanted her to call them. I said that would be great. She would call my husband the next day with her results. She couldn’t make any progress with Digestive Health but she lined me up with a general surgeon. I got a call from my husband asking me to meet him for a consultation  appointment at noon. Before we left that appointment we had surgery scheduled for Tuesday 9 am.

At my preoperative appointment on Monday a nurse told me all about g tube surgery and use.

I had had laparoscopic surgery twice before.so I was not very worried about the surgery.


Here’s a post op pic

And the post op belly

It is freaky to me how quickly I was unable to eat or drink enough. I am lucky to have gotten my g tube placed as quickly as I did. The day after surgery I was surprised by the amount of pain I had. This surgery went through my stomach wall. The other two laproscopic surgeries I had were on reproductive parts, and I had little to no pain after.

A dietician from the home infusion company came out to meet with us early Wednesday. She left some samples of Boost Compact, which is complete nutrition in 4 ounces. I am supposed to have 5 bottles a day, with 60 ml of water before and after each bottle.

A home health nurse came over that same morning. She had a lot of paperwork and took my vitals and taught me how to get in and out of bed while minimizing pain. She also redressed my wound and discussed Do Not Resuscitate papers I will carry with me since I do not want to have a tracheotomy.

When I was a teenager I didn’t particularly like eating. I remember discussing food with a lawyer I worked for. He said how much he loved food and he wanted to eat all the time. And I said, “not me, if I could take a pill with complete nutrition I would.”

When I met my husband Stan he introduced me to good food. He is a very good cook and enjoys fine restaurants. I grew to love delicious food too. I am going to miss enjoying meals with family and friends. I hope to still be able to taste food and at least at home, do my tube feedings at the dinner table. I will enjoy a couple breaks a day at work to sit in my car and listen to music.

With a couple days of tube feeding under my belt I realize I will be living with the smell of stomach contents on my hands and clothes until I find a waterproof drip catching system when I open the tube. Barf is the word that comes to mind to describe the smell. I think I will figure out a new system quickly. Editor’s note: I quickly learned to pinch the tube and have a small glass to catch any overflow. I have Wet Wipes in my feeding kit now too.

Life is full of ironies. When Andy was a baby we fought against getting him a g tube because we had met other older preemies who were having major complications from g tube surgery. And almost 16 years later, here I am with a g tube.

I can get used to this. I was able to do a tube feed during family dinner at a restaurant and finished eating at the same time as everyone else . I was able to taste little samples that others shared, of their pasta dishes and fish.

A different home health nurse came by on Friday. He was a great resource on tube feeding and told me some tricks and explained how to put crushed meds through the tube and how to watch for dehydration. We also got a delivery of two weeks of formula for me. My formula is called Jevity 1.2 cal high protein nutrition with fiber. It is not sold over the counter.

Since Thursday I have been having diaphragm spasms causing an annoying cough. The home health nurse Tim said my diaphragm has to get used to the tube being there. I have been using my suction machine this weekend because of excess saliva and pleghm in my throat that I can’t clear on my own.

I will keep on going even if I’m running to stand still.

Please consider contributing to my #whatwouldyougive campaign which runs through 8/31/16. Thanks to my many donors who have helped me raise more money than I imagined possible when I started the campaign for research to end ALS almost a month ago. #whatwouldyougive


Assistive Technology for Loss of Speech

The first assistive technology I tried was a Boogie Board

It is a cool LCD writing board where you write with a stylus and erase with the push of a button, which makes it more convenient than pen and paper. Sometimes other people get a hold of it.

The next assistive technology I used was an Android app on my phone called Speech Assistant. It has a wide variety of downloadable Google voices and customizable categories. I still use this because sometimes all I have with me is my phone.

I thought that was really cool, and then I found something cooler!

I work as an elementary school administrative secretary and school districts are very adept at complying with the Americans with Disabilities Act  (ADA) because of working with disabled students. I had to fill out some paperwork and get a letter from UCSF about my diagnosis. I then met with my principal, the district Risk Manager, and the head of labor relations about what I qualify for under ADA. They arranged for me to meet with an Assistive Technology Specialist for the school district.

Robbin Dunn met me at my office and she was wonderful.

She showed me an iPad program for text to speech that blows away the app on my phone. It’s called ProLoquo4Text and has unlimited phrases and unlimited accounts 

I currently have a loaner iPad from Robbin’s department. I have been able to set up a work account and a home account and even a Spanish speaking account since I have loved speaking Spanish since high school. My only complaint is that the selection of voices is limited. The program was created in the Netherlands and even the so called American voices have an accent.

We had another meeting on Thursday this week with the same group plus Robbin to determine what the District will buy for me. I feel very fortunate to be working at a place where this is available. They are going to buy me an iPad Mini and the ProLoquo4Text program as well as a case and keyboard that I get to choose.

It has been challenging getting used to typing conversations. Often when I am done typing my comment the conversation has moved on to the next subject already. And holding conversation during meals is hard too. I have gotten comments from people such as, “that’s really cool” or “that’s interesting”  I can tell it makes some people very uncomfortable  I am an introvert and usually pretty quiet anyway.

The reflections make it hard to see. It says, “Hi, I’m Meg “.

I had a chance to practice with my iPad last weekend in Las Vegas for my father in law’s 85th birthday – more love and connection even if by artificial voice.

Then I heard about something even cooler. A teacher I work with ran into some guys from a startup in the Bay area called Vocasso. When she heard what they are creating, she put me in touch.

Here is the description from Ryan McVicker:

Vocasso is the human-machine interface that enables seamless integration with the digital world. Our core technology, the Vocasso soundless microphone, not only produces speech for mute Stroke survivors, it enables users to interact with digital devices without making a sound. Simply put on our headset, connect via Bluetooth to a smartphone or PC, and the words you mouth let you soundlessly control all of your digital devices. To find out how this cutting-edge technology will shape the future of communication, visit http://www.vocasso.com.

It will be interesting to see how it will work for ALS patients who have limited use of their mouths to even mouth words. But it sure sounds cool!

Please  consider a donation to my #whatwouldyougive campaign to raise money to end ALS.#whatwouldyougive

Donation accepted through 8/31/16

Thank you to my many many awesome donors!

 

Ales for ALS

The past week was sandwiched between two weekend campouts and it was the week before school starts at my job in an elementary school office, plus all my siblings (4 of them) came to town. I still had to get a blog post done. Luckily there is anorher great ALS fundraiser to tell you about.

My husband Stan loves hoppy beer and was happy to find that he can support ALS research at our favorite local brewery.

Great Basin Brewing Co. is participating in Ales for ALS 2016. Participating brewers get a proprietary hop blend, free of charge, in exchange for participating. Each brewer then brews a special beer with these hops and will donate a portion of sales to ALS TDI for ALS research.

Great Basin brewed Buster #4 which is an American IPA.

Great Basin has hanging chalkboards showing the available beers.

I like that it’s named for Buster Posey of the San Francisco Giants. Go Giants! Stan likes the beer (I had a sip and liked it too).

Find your own local Ales for ALS brewery at alesforals.com and drink a beer to cure a disease!

Please support my #whatwouldyougive campaign, also raising money for ALS TDI here.

#whatwouldyougive

mural 3_resized

It was SO appropriate to come across that surreal urban mural in San Francisco the night before my diagnosis. There have been several surreal moments since I saw that mural.

One surreal moment came when the respiratory therapist brought my durable medical equipment: bipap machine, suction, and  cough assist. 

Having these machines in my home makes my ALS and the path I am on much more real. I really will need a machine to make me cough when I can’t do it myself. I really will need a suction machine to suction phlegm out of my throat when I can’t clear it myself. And is my breathing already compromised such that I need a bipap?

I watched the ALS Association’s patient DVD about breathing and was surprised to learn that use of bipap for at least 4 hours a day lets the diaphragm relax and it functions longer as a result. So I am happily putting on my bipap mask each night. 

A lot has been learned since my mother was sick with ALS. She didn’t benefit from all the research in the last few years like I might.

ALS is a strange disease. It can be caused by a known gene mutation or can be sporadic (unknown cause). The particular gene mutation that my mother had causes ALS or dementia or ALS and dementia. And even if you have the same gene mutation it can start at any age and it can start in any motor neurons in any part of the body. My mom’s started in her arm when she was 59.She soon lost use of her arms and had to go on disability from her job as a hospital dietitian.Soon after that she was in a wheelchair. Then she lost her speech but she could still swallow liquid nutrition until she died at age 62. I am going to lose my speech and swallow  first, and we don’t know how soon it will spread, but often it doesn’t spread rapidly when it starts in the mouth.

I have a friend from high school whose niece got ALS at age 33. Her name is Sarah Coglianese and she also writes a blog and she is a phenomenal writer.She is also a fundraising champion for ALS research.http://speed4sarah.com

She created the #whatwouldyougive fundraiser last year.  https://als.net/whatwouldyougive The 2nd annual one starts today.

From the #whatwouldyougive website:

CHALLENGES (pick one):

During the week of Aug 1-8, pick a day and…

GIVE UP YOUR ARMS/HANDS

Examples:

  • Have someone wash your face and brush your teeth
  • Have someone feed you meals
  • Have someone dress you

GIVE UP YOUR VOICE

Examples:

  • Type on your phone to communicate
  • Write on paper to communicate

EXTREME CHALLENGE! GIVE UP YOUR LEGS

Examples:

  • Use a wheelchair all day
  • Have someone lift you from a chair to the toilet every time you have to use it
  • Have someone lift you in and out of bed

 

GUIDELINES:

Start Now: Join the team! Create your fundraising page and reach out to your network to start raising money.

During the fundraising period: Post photos/video of you holding your #WhatWouldYouGive poster (provided by ALS TDI) on social media, using text like “I’m giving up my right arm for the day.” “I’m giving up my legs.” “I’m giving up the ability to feed myself on [date].” #whatwouldyougive #letsmakeALShistory

Day of the Challenge: Keep it respectful. You don’t have to be sad and depressed all day! Sometimes when people help me with my basic needs, it can actually be funny. Just keep in mind that the videos and images you post should reflect the purpose of the campaign: to share your experience and educate your social network.

After the Challenge: Feel free to share any thoughts or experiences on social media with hashtag #whatwouldyougive. Continue encouraging your network to donate! The fundraiser is live through August 31.

 …………………………………………………..I am participating in this fundraiser. You can visit my fundraising page here. Reno friends can borrow a #whatwouldyougive poster for photographs of your challenge for social media. 

If you decide to do the challenge you can join my team here. Sorry for the short notice!

My husband and I went to the Ritz Carlton Tahoe on the 4th of July. I decided to practice for my upcoming loss of speech. 

I took this note to the front desk and the guy actually walked all the way outside with me to show me where the trail was. I was rather surprised by how easy it was. I have not run since that day – I find I really need to heed my instructions from UCSF to conserve my energy. They’ve advised me to not lose weight so I am reevaluating my running routin. I can’t imagine what it will be like to lose the use of my arms or legs, and I don’t mean this story to be insensitive to those with ALS who can’t run. My heart goes out to everyone with ALS who is doing the extreme challenge every day, being lifted in and out of bed and on and off the toilet, like my mom was.