Category: Uncategorized

Tiring

My speech pathologist messaged me a list of words to read off of. It was very similar to the lists of words are used to give my students to read to me. The purpose of me doing this was to see what they were able to read. For me, the purpose of Meira giving me these lists is to see whether or not I am able to say them. I still need to read the third list tonight but I am looking forward to it.

I talked to my best friend today and told her that I need to talk on the phone. She has heard me sound drunk before when we spoke on the phone so she is completely all right with me talking with her. I have spoke to Sean on the phone a couple times today and I asked him how I sounded and he told me that he can tell that I am working on it! But, Meira says if I practice a lot, I may NOT lose my speech. I will hope for that because so much is so difficult for me now! Now, chewing food and speaking is difficult.

The most recent difficulties I have been experiencing startle me and I wonder what else is there to become more difficult if not no longer able to complete. This really scares me. But I have to read my third list and I am tired! I can’t believe talking is tiring for me!!!

Mind-Blown!!!

I had my first successful virtual visit with my speech pathologist today. I was scheduled last week but I couldn’t logon so she just ended up calling me and we spoke about what we were going to work on. I was able to logon today after calling tech-support this morning. She was having difficulty logging on so it took a moment but we spoke via video chat.

I really like her and I’m comfortable with her. Today, we worked on annunciation of words and she gave me an acronym to remember. She told me that in my level of dysarthria and having multiple sclerosis that my, “Normal” is, “Slurred.” That statement blew my mind tremendously!!! I actually started to cry as I let that sunk in. We only talked for about a half hour but I was thoroughly tired! The fact that my, “Normal” sounds, “Slurred” to people without MS difficult is ato get my mind around! She told me that I am missing a feedback loop and that’s from having MS.

She gave me homework to do before next week. I have told her that I only text to people and I do not talk on the phone anymore. She said THAT will be my homework. I HAVE TO talk on the phone! I am a little bit nervous because speaking as she says is very, “Effortful.” I have to think about who I will talk to but says that the more I practice, the easier it will be for me to do this. but right now, I am way too tired to talk to anyone!

2-`Device Process OR ‘Splain Ya

Ever since I purchased my iPad, every blog post I write is a “2 device process.” Because my eyes have gotten so bad over the past 20 years, I need to make the screen extremely zoomed out so I can make out the words. But if I want a picture or a video, I embed those using my phone because my phone is small and easier to hold. But then, I need to actually write the blog post. That’s when I go over to my iPad and make the writing super big so I can see it. As I write it, I use voice to text technology to make it easier.

hi I thought I would explain that today because my eyes hurt and because of that, I am just going to speak my blog post into existence because I will not put any pictures or YouTube videos on it. But I wanted to post something, so I thought I would ‘splain ya.

Out of my House

I got out of my house this morning. It was for my monthly haircut and eyebrow wax appointment. I told her to go back to the reverse bob that I got so many years ago for the first time. I was 26. But now, at almost 40, it’s so much easier. I can’t stand the feel of hair on my neck anymore. Having had MS for over 20 years, I have a very extreme sensory disorder now. I had my mom take a picture of my short hair in the back just to make sure. The woman who has been waxing my eyebrows and cutting my hair for 20 years is expecting her second child in January. I made an appointment for December but I told her I will just wait until she gets back from having the baby to get a haircut after that. I waited over a year during the beginning of the pandemic so it’s okay with me.

We didn’t rent a van this time so instead, Sean accompanied us to be the brawn to get me in and out of the car. Over the years, my core strength has diminished but my knee injury has sent me over the edge and saying that now I am in a motorized chair all of the time, my car strength definitely has been affected and is almost gone completely. My mom did not mind sitting in back so Sean decided to go to Cold Stone Cremery that is right by my house. I am definitely not a huge fan of eating ice cream when it is freezing outside but Sean and my Mom were getting a scoop so I told him to get me a scoop as well. As he was getting out of the car, I told him that, “ mint chocolate chip is my jam!” And it made me smile that as he was closing the door he just said, “I know.” As Sean and my Mom were in the store, I started fiddling with the radio.

I have written before that I am old because I enjoy music from my young adulthood but now I am almost 40. Sean has been driving my car for over a year and my radio stations are all messed up but somehow, I got to 80s on eight. And the opening bars of this song had just played. This song reminds me of my Mom!

I listened to the entire song and smiled to myself. Sean and my Mom got back into the car and I ate my scoop of ice cream. It was totally of season but I really enjoyed it! I spoke with my Mom as I am drafting my blog post and I started to laugh. I was remembering back when I was p music club and got a new CD that I was listening to for the first time in my car. It was The Incredible Journey. I showed of my Momt the CD case as we drove to wherever we were going. Once we got back and I put my car in park in front of my Parents’ house, my Mom just ejected the CD and told me that, “I’ll have this.” She got out of my car and walked toward the porch. I looked completely aghast and shook my hand. I just decided to let her have it! It’s like the Diet Coke commercial, she IS the reason I like them!

Part of THIS Club

I have had a lot of stuff in my head since Tuesday and it translates to me having more MS-y days. because I have not been feeling well all week! But today, Sean came over and my Mom went shopping. When she came home, she had me listen to a song and she told me that it was, “For you.” I was familiar with the song but I never listened to the words because I do not have a daughter. But hearing my Mom tell me that it was for me, make me cry as this song played and my Mom reminded me of a time that she saw it was, “So tender.”

It was right after my Abuela died and before my aunt died. Her mother and her sister. When we would drive around doing errands or something, I was only seven when my Abuela died and had just turned eight four days before my aunt Rita died. I was allowed to sit in the front seat back then (because I am so old) and I would ask my Mom as we got into the car, “Are you going to cry again?” And as we fastened in, she would start to cry.

I would just sit next to her silently and put my left hand in the crook of her right arm at her elbow. she would continue to cry and she would put her left hand on top of mine. I can clearly remember doing this more then we’re just gonna go to the 30 years ago. I think it’s sad that I am not part of the club because I do you not have a daughter but I really liked being part of the club here because I AM my mother’s daughter:

Banking my Voice

I first thought of this the moment I heard Meira say it. She told me that we were going to, “Bank my voice.” I was very familiar with what that is and why it is done. I just couldn’t believe that it’s really gotten that far for me! She told me that it may not be necessary but we should do it, “Just in case.”

That kind of struck me. Is it really like that for me?! I remember watching A Football Life about Steve Gleason. It was talking about when he was going to scale Machu Picchu with his wife, friend, and another person newly diagnosed with ALS. I think that Steve Gleason had already gotten the voice control apparatus on his wheelchair because he could no longer speak. I remember seeing the other guy who was going on the trip who was newly diagnosed and he could still speak but it sounded odd; it was the beginning of not being able to speak.

I also thought of Stephen Hawking and I remember seeing The Theory of Everything. The thing I think about most whenever I think of that movie is when he was addressing a college class. A girl in the front row dropped her pen. In the movie he sees the pen, gets up out of his wheelchair, and gets it. I think about doing that all of the time, especially now because I drop everything now.

I was thinking about both of these men as Meira handed me the list of things for me to read. I was completely reminded of myself with her organized white binders. I used to do that when I taught. I did give her a tip for future patients. I told her to print them larger because some of the difficulty I was having was because the print was too small for me to see.

I guess I have been thinking about this appointment since Tuesday and it is a little startling. That’s how it is now?! I can only handle thinking about these big changes in little bits. I thought about reading children’s books for my future grandkids on audio but I think the time for that seems to have passed. Some days I speak normally but it seems there is just a hint of, “NOT normal.” When my voice is, “NOT normal,” there are only a few people who I speak to. It is a very short list and only consists of three people. My Mom, Sean, and my best friend, Ami. All of them are patient as I struggle to form the words in and get them out of my mouth. It was gradual and I haven’t really thought about it. It’s been a long time that Sean would order takeout for us and my Mom would speak to doctor’s offices for me. I start my virtual appointments with Meira for speech pathology on December 7th and I wonder how that will go? I have 10 hour long appointments scheduled.

Handsome Plumbers

I had some plumbing done at my house today. A team of two handsome plumbers did it. I haveALWAYS have had handsome plumbers do work in my house though! A while ago, another plumber was also handsome but today the first handsome plumber I had in my house to do work on my shower when I first bought my house came back and he had a helper. I think the helper was kind of good looking! In fact, I know he is! I know because he is my son and he has the same genes as me and The other two plumbers (two of my brothers!)

My oldest brother had talked with my Mom to do the work in my house and they came by today! I will say that it was really cool to watch my son work and speak a different language (plumbing) with my brother the whole time they were here! I think my maternal pride kicked in or something! My house was their final job for the day so Sean stayed back and visited with me and my Mom for a while!

The work he did was in the kitchen sink so I really haven’t been affected by that. And the other odds and ends fix was the vent to my dryer. My Mom and I have been old-school rocking it for the entire pandemic like pioneers and hanging our clothes to dry. There are clothes in the dryer now that will not be need to be hung to dry and my Mom washed the dishes really quickly today! So I guess it feels like everything is coming up (Jenny Rios) right now!