Milestones and Miles End

June 29, 2017

One year ago today, I was diagnosed with ALS (my D Day). This photo was taken in Half Moon Bay where we went after the dismal diagnosis.

Based on my mom’s experience, there is no way I expected to still be so active. I feel truly blessed in that respect. I am able to care for myself. So today is an ALS milestone. I have written before about how important milestones are to an ALS patient, for an ALS TDI Mother’s Day email:

On being a mother
by Meg Macdonald

                                                                                

first became a mom in 1999, with a 23-week micro preemie daughter who did not survive.  In 2000, our son Andy was born a micro preemie at 25 weeks 6 days and 1 pound, 13 ounces. He did survive, and we are really blessed that he did.

As a mom, there are milestones you anticipate such as first steps, first words, first day of kindergarten, finding musical interests, sports interests, and other things your child will be interested in. We did not know if our son would survive and the first two years were quite a roller coaster.

Needless to say, all of Andy’s milestones are very meaningful to me as a mom. I am thrilled that he is now a successful high school student, driving, playing viola in several orchestras, running and working on his Eagle rank in Boy Scouts. As a mom, I look forward to his college choice, high school graduation, to his college graduation, success in a career, marriage, grandchildren – all the normal lifetime milestones.

Now, since my diagnosis with ALS nearly a year ago I can only set goals to be present for these milestones. Without more research to find a cure, my goals will not be attainable.

But I need to finish up the story of our Oregon trip. We left David and Linda in Trail, Oregon on Monday morning.We will be back! We love you guys.

Then we drove to Klamath Falls, Oregon to meet my friend Theresa and her husband Jeff. It was a quick lunch visit. I met Theresa when I first came to Reno and stayed with her family. She was a senior in high school when I met her. This was the first time we really got to talk with Jeff. It is uncanny how many similar interests our husbands have. Dirt biking, RC airplanes, sailboarding, airplanes, military, and the list goes on. We will be visiting them again too.Jeff and TheresaOld friends, but don’t we look young?

Then back to Reno for a few days. On Wednesday, Andy and I went to Nevada Magazine’s Focus Group, a photographer mini-symposium. They had 4 presenters, one on gaining and retaining customers, one on photography basics for sharper images, one on the stock photography market, and one on nighttime photography and astrophotography. We also got a tour of the Nevada Magazine production area. As the former editor of my high school newspaper, this was interesting to me.

This photo shows where they lay out the magazine. Andy, who wants to be a graphic designer, got several contacts who can help him down the line. I also made new friends. We went to lunch at Q’s BBQ afterwards and got to chat with even more people.Photo credit: Tanya Musselman 

It was a great group of really nice people, and a great presentation too.

And then D Day, spent paying bills, and being frustrated that I have to depend on Stan and Andy to make phone calls for me, and dealing with very uncomfortable thick saliva. But I am appreciative of every day I am given on this planet.

June 30, 2017

Another milestone for me – yes my birthday (57)! I never used to want to make a big deal about my birthday, but now it means that I made it through another year with ALS. I woke up this morning, before 4 A.M. coughing due to saliva getting in my lungs. So really, things are not all easy even though I can self care.

Today we will drive to Miles End Lodge Bed and Breakfast for the long 4th of July weekend. We have filled the whole place with friends and family. Last year we also went there for 4th of July. I didn’t write about it then. But the other guests were friends of Ann’s, sisters who are doctors and their husbands. They were very understanding of my need to grieve my diagnosis. I have mentioned that Miles End is one of my favorite places on this planet. We have celebrated Stan’s birthday there, and now we can celebrate mine. 

July 1, 2017

Today we had a relaxed morning chatting, and then went up Kingston Canyon to Groves Lake for lunch.

I will include photos in next weeks blog when I will be back on Wi-Fi.

July 2, 2017

Another milestone day – our baby Anna who died at birth would be 18 today. I have a rosebush in her memory in my back yard and because I prune severely in March, it gets its first pale pink roses right around her anniversary every year. And then they get pinker until the bloom is done.We still hold Anna in our hearts, and I am glad to have the roses to remind me of her. The rose bush was a gift from my step mom Anita and my dad.

Today we drove various vehicles around Big Smokey Valley. Two dirt bike riders and two side by side riders rode on a pole line road to a meeting point on a well graded road. Two others rode in the Ridgeline to get gas in Carvers, NV and back to the meeting place. It was planned to be a much longer trip, but after eating lunch we decided to head back to the beautiful, relaxing Miles End. Again I promise photos next week because I am off the grid out here.

Last year I participated in Sarah Coglianese’s #whatwouldyougive campaign. This year I am busy with clinical studies and we are trying to put together a local Reno fundraiser too. But I told Sarah I would share her fundriving page: 

Sarah Coglianese’s #whatwouldyougive 

Please support my amazing young friend and the awesome fundraiser she created to support ALS TDI, the non profit company dedicated to finding a cure for ALS.

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.