Welcome to ‘ I Wonder Wednesday ‘! An opportunity for my followers to ask me questions. Below are the answers to these questions.
How many states and countries follow your journey?
This is a wonderful question. I have shared a link where you can comment where you are located. Facebook has a great feature that shows what city and county each participant is from. I downloaded the country list to share. Unfortunately it does not break it down by state but it still looks pretty cool to see the countries. Thank you for asking such a wonderful question.
|United Arab Emirates||1|
I wonder how your eye movements choose the letters, input the words and then prompt it to speak? Is it the length of time you gaze at each letter etc?
To select there is a camera on the bottom of the screen to track my eyes.
I have to stare at an area for two seconds to select. Then if I am speaking I just stare at the speaking bubble.
Was it difficult to learn how to use your communication devices? Did you do any voice banking?
What do you find to be one of your best tools or tricks that you wish you knew about earlier?
Learning the eye gaze is fairly easy. I struggled using it when I first got it because I still had hand movement and could talk. The first instinct was to touch the screen because it is very slow typing with your eyes at first.
I recommend practicing a little each day even if you are fully capable. It was not until last year, two years after receiving the device, three days after my tracheostomy surgery when I struggled with communication that I used the device. I didn’t practice like I should have. I used it like I practiced every day. So yes it is user friendly.
I did voice banking and started two weeks after I was diagnosed. I went to Boston and chose the option called double dipping. Part one you record a minimum of 800 phrases. Then part two they take the inflection and tone to create a synthetic voice. Then finally I install the voice and all the phrases onto my device.
As far as best tools and tricks I have none. I can say, please don’t jump on the first device you are shown. I did. It’s hard choosing what is right for you. I recommend trying multiple. Insurance only approves one device every five years. I recommend seeing when the software was created. How to drag and drop. If a feature is not there you may struggle. Check to see what browsers and programs it is compatible with. How long is battery life? Is there an extra battery? My battery lasts two hours, I’m not able to plug in my chair. Now if I don’t have my device my anxiety level is high.
“What sparked you to launch this (again) despite your challenges? And what brings you bits of joy on difficult days?”
I decided to bring back I wonder Wednesday, because I was running out of things to talk about. I figured I would take some topic ideas from my followers. I know everyone has those questions in their mind and I thought this would give them an opportunity to ask and give me something to write about.
I get joy by remaining positive even on the hard days. I find that having positive energy makes me feel so much better. Negative energy is easy to absorb so I work very hard to keep negativity away from me. I pray a lot in the late night hours when I can not sleep. I also find joy and peace blogging.
What do you wish companies designing clinical trials for ALS therapies would do differently to improve patient experience?
This is a great question that I wish I could answer, however, I have not participated in the clinical trials. One reason is because of location, we must travel to participate and this is a very difficult option for us. We have to save David’s time off for emergency purposes. Asking that clinical trials have a location in every state is unrealistic and collecting the data for these trials is very difficult. This is why location is minimal.
Are you in pain?
Yes, I am in lots of pain. I have been working palliative to come up with a plan to control the pain. I’m on more pain medication than I was in December. My body doesn’t respond to pain medication well so it’s been difficult to control.
How long did it take you to be diagnosed with ALS?
This is a difficult question because I am not sure exactly when the symptoms started. I can also say I ignored symptoms for years because I am stubborn.
When I finally gave in it took a week. My doctor set everything to urgent because I was falling more than 20 times in a week. I had finally given up when I was getting hurt from the falls and went to the doctor.
I did get a second opinion and that was two weeks later.
Can you eat regular food by mouth?
I can not, I have dysphasia, due to loss of the muscles that control my tongue and in the throat. I can however swallow thickened broth (with no herbs ), water and juice. I can also have yogurt (oui brand only because of perfect consistency ), I also found I can have linden truffle chocolates, as long as I let it melt in my mouth. I have to have bland broth because my taste is heightened. I’m going to try cream of wheat some time.
So yes I can eat just a little differently. I get 100% of my nutrition through my feeding tube.
How do you afford nurses and cnas?
We can’t afford them. I’m limited on the amount of care hours I receive. My insurance pays for my care.
Can you describe one of your happiest memories growing up? Are you the oldest, youngest, or only in your family?
I’m the only child so I was very lonely growing up. I spent a lot of time in my alone because tv was limited. I had to entertain myself. I would look forward to visiting my grandparents on my dad’s side of the family because I got to hang out with all of my cousins. This was only a few times a year because my dad was in the military.
It was not until seventh grade i started making close friends and getting more involved in school. I still had times I got myself in trouble for lying and seeking attention but the more activities I did the better it got.