stroke

Accessibility

Recently, we drove to Dallas & I used my portable external catheter (from Purewick – I’m sharing this so other stroke survivors know about this, because it has been a game changer for me).  Sitting on it, initially, is not the most comfortable thing, but IT’S SO WORTH IT because I gain so much freedom & lose so much anxiety!  There’s a lot I put up with now that I never thought I would, because it makes my life better.  Happier.

Last month my grandson invited Mark & I to his swim lesson. When my DIL told James she’d ask if we were busy, he said “Grandma is not busy for me. She’s alright”. I was surprised by his answer. Usually if Mark can’t drive me, I can’t go.  But when I do go, Mark does well finding places I can go (thank u also to ADA).

Then I realized there are times at home when Mark’s working, but I can still play. At home, I can always be there for him. I hope he feels the same way when he grows up & I can’t go to everything…case in point:

A while ago my friend/helper Angie invited me to watch her son play soccer. I hesitated to say yes, because I needed a ride, & I needed to consider my schedule (I can’t usually use the bathroom when I’m out, so I have to factor in if to see my schedule allows me to use the potty at home before I leave,)

I forgot everything else I need to do though (if I what to go somewhere new) because Mark usually takes care of it  – & I’m so grateful he does,  because sometimes I’d rather stay home than figure it all out (things like checking out the parking situation, see if i can even get in, see if a stadium has cement I can roll on to an accessible seating area, or if it’s a home, I need to contact the family to find out I need a ramp & if I can even access a door…). I’ve always been a homebody, but the longer I’m disabled the more I’ve become even more of a homebody because going anywhere unfamiliar is exhausting! I can’t just go!  I hate it & usually avoid going to unfamiliar homes because it’s just too much work!

It wasn’t until I talked to Angie the next day that I was reminded how I missed many of my kids’ games & activities just because it was too risky to take me to an unfamiliar stadium or building. I grew up in a family where we supported each other in everything, & it broke my heart to hear my kids ask, “is mom coming?” as they walked out the door, because I wanted to go, but it wasn’t feasible!  How I miss the days when I could leave the house without a second thought of if I could get in & if I could use a bathroom (personal note: I am SO grateful to those who take care of this – like my SIL & daughter who recently opened a business in Utah, “Sunny’s Luxury Suites: dog boarding & daycare” – click on the words to see their website)

Even if a place is accessible, there’s no guarantee I can use it. People love to occupy the single stall bathroom, the bigger dressing room, the closer parking, etc. I try not to judge, knowing that even disabled people have more than 1 friend (I have a pet peeve that I can usually only sit by 1 person, & I also know not all disabilities are visual). However, many times, even if there IS a bathroom Ì can use, I oftenwait 20 minutes  to see a single, very healthy guy walk out of a stinky bathroom – I have to use it after some guy was  in there alone so he could poop alone, or some able-bodied person just wanted to use the nearest toilet…Arg!

Another “favorite” is particularly popular bad on  cruises: the elevator wiłl open the doors & it’s often filled with healthy able-bodied teens who could easily walk up a flight of stairs but rather the walk a flight of stairs, but even after seeing me & several other wheelchairs waiting, they stay on the elevator & make us keep waiting.

& even though u can ask for an accessible hotel room, there are no guarantees u will get it!  (I don’t know what other people do who don’t have a husband who can carry them! I think the Lord  helps somehow because I have seen Mark do stuff I can only guess the Lord was behind it!)

& my personal “favorite”: Handicap parking.  Handicap parking is THE WORST – & I don’t know who is worse … able-bodied people, or disabled people!  Those hash marks are not decoration, but BOTH able-bodied AND those who can legally park there will park on the hash marks!  & just because u can legally park there doesn’t mean u should!  I can’t tell u how many times we parked in the back of the parking lot so no cars would block my ramp, or I waited in the rain, so my husband could back up enough to let me in!  If u don’t need the curb cuts (like wheelchairs do) & can walk, then don’t fill up the van handicap parking! & if u aren’t disabled NEVER EVER park in ANY handicap parking, even if u think u will “just be a minute” or have a sign from a friend/family member that makes it legal. That minute could be when someone comes & needs it, or if all the van spots are filled up, u could be taking a spot from someone like me who needs access to those nearby curb cuts.

I’ll get off my soapbox now…I can’t say I was perfect (then, or even now) & I can’t say I have never done any of these things. There’s a serious lack of education about this stuff. I was clueless about how my actions affected people in the disabled community until I was in it, & if I ever hurt anyone, I hope they can forgive me. Dear reader, especially if u aren’t disabled, I hope your eyes are opened.

What is Blink Spelling?

You may think that communicating with someone who doesn’t talk, move, or have any facial expression is impossible – well, not quite. In the beginning, I couldn’t move at all, so I communicated by blink-spelling:  

I couldn’t control my blinking enough to use blink once for yes and twice for no, so I’d close my eyes (another option is to look up for yes and close his/her eyes for no).   

When I needed to communicate, I’d close my eyes, & someone would say the alphabet.  I’d open my eyes when the letter was said: (4 example, if I wanted to say “go,” then I would close my eyes as someone would say the alphabet, & I would blink when they said the letter “g:”  Then I’d close my eyes again as they’d say the alphabet again,  I’d blink when they said the letter  “o.” I’d repeat this for the word “now.”   There was no way to indicate a space, so the interpreter had to look at the letters “gonow” (either on paper, or in their head) &  figure out what I was saying.   Sometimes, it takes a bit of detective work to try to make words out of a chain of letters, and you have to clarify things by asking yes/no questions, but it works. 

That’s it. Give it a try. 

Many people use a letter board (as pictured & described below) – that way, the entire alphabet isn’t required each time!  Unfortunately, I had severe double vision (my vision is not 100% better now, but much improved), so I couldn’t see well enough to do a letter board. 

But if you make one, use a whiteboard (you can use dry-erase markers on it and you can wipe it clean). Make 6 rows containing the alphabet and numbers. The first row is “a-d,” the second row is “e-h,” the third is “i-n,” the fourth row is “o-t,” the fifth is ”u-z, and” the sixth row is “ 0-9.” In this way, each row of the alphabet began with one of the five vowels. Use stick-on letters and numbers to create the rows. It looked (roughly) like this: 
_____________ 
1 – a b c d 
2 – e f g h   
3 – I j k l m n  
4 – o p q r s t  
5 – u v w x y z  
6 – 0  1 2 3 4 5 6 7 8 9  

—————— 
(I didn’t have this when I tried a letter board, but u may choose to have a 7th row with “@”, “. (dot)” and “?” – try spelling an email address without the first 2! The “?” Is useful because very often one spells a question but the “listener” doesn’t notice it’s a question and the “talker” has to spell “that was a question” !) 

The process of communicating goes like this:  

Hold the board within the stroke survivor’s range of vision and ask him/her to indicate the row the first letter was in by looking up or closing their eyes when they get to that row. Then ask him/her to look up again.  

So if he/she wanted to say “hello”, start by saying “row 1, row 2”  When you say “row 2, he/she would indicate yes. Then point to the letter e, the letter f, the letter g, and the letter h, and he/she would indicate yes for h. Then take a dry-erase marker and write the letter “h” on the bottom half of the board.   

Begin the process of scanning rows and letters again.  

We’ve had some humorous spelling conversations, where letters got jumbled, or the end of a word wasn’t clear. Then there will be times when spelling some words allows for some rather interesting beginnings of the words, that may lead you think of the wrong word. 

It is a very time-consuming process, but it can be used if you can only move one part of your body – be it eyes, mouth, finger, or whatever.  For the stroke survivor, family and friends it can be a really rewarding method of communication. 

Once the stroke survivor regains some movement in a head or arm (not a lot is needed), they can have a stick strapped to them/glasses with a laser beam, etc. and point to the letters, or a laptop with a wide screen and key board with big letters 

There is software where letters and numbers will be read out loud (123 will be read as “one hundred and twenty-three;” 12345 will be read as “twelve thousand, three hundred and forty-five.”) The important thing is to remember to spell words phonetically – and remember that the module ignores capitals and punctuation. 

Talk with a rehabilitation technology department, as well as a speech and language pathologist. They will have all sorts of suggestions for communicative assistance. There are glasses with laser beams, computers that track eye movement or can read the letters that you think, and lots of other helpful tools. 

If you have a loved one who is locked in, he/she needs so much love right now. There is no telling what is going on in his/her head that he/she cannot tell you. There are so many stages to go through before you smile again; it’s hard for all of you. But never give up. If you’re breathing, I believe you have a purpose for your life. 

My 21st stroke-aversary

I figured I should make an appearance, since my 21st stroke-aversary is on March 16.  So much has gone on, though, that I don’t know where to start, & I feel so overwhelmed by just the idea of writing…so I keep procrastinating.   Procrastination usually involves eating, gaining weight, & then a class/challenge/goal to lose weight.  (I’m in that class now!  Haha)  I also procrastinate by watching more TV & YouTube, & distracting myself in numerous ways (like writing about how I can be distracted!  HaHa)

I started to write a blog post last fall, but that time of year would get really busy with my primary calling (so I used to not travel much between September-the first Sunday in January, & I let my husband – who loves to travel – go places with a friend/family member) It was just too much for me to leave during that time, & I stayed home…which allowed me time to write a blog post.  However, I was in my 5th year as primary president & I’d been trying to find a new balance in my life, which meant trying to do more with my family.  & Since my husband loves to travel, that meant I have been traveling more!  So sorry I’ve been MIA for so long!  Since I last wrote I’ve been to Iceland, Utah, Scotland, London, Belgium, & DisneyWorld. “& I’m proud to say that with all these flights I remain “Faceplant free since 2023”- Thanks goes to Red Arena, where I do my horse therapy). 

So here’s a quick re-cap:

-July:Iceland was a fun family reunion, but very inaccessible (I don’t recommend going unless someone strong can carry u, & u can stand while they shower u!)

-October: We went to AMCAP (The Association of Latter-day Saint Counselors and Psychotherapists)in Utah.  It’s really for my husband, but spouses are invited & I like the intellectual Stimulation…

-December: Scotland/London/Belgium-this was an early Christmas/30th wedding anniversary for my husband & I.  It started off rocky because British Airways was totally discriminating against those with disabilities, & they destroyed my beautiful new travel wheelchair!  But I saw my childhood crush, Donny Osmond, perform in “Joseph & the Amazing Technicolor Dreamcoat” in Scotland, & in London (probably the most accessible place) I saw “Harry Potter 1 & 2” & “Phantom of the Opera” (which we saw on our honeymoon, & for my wedding gift, my husband made me a music box that plays “All I Ask of U” — & he made a “more advanced” music box for our 25th anniversary).  We took a train ride from London to Belgium for a day trip.  Europe has some really cool Christmas markets at that time of year!  It’s just really cold, & I don’t do well in the cold!  But I discovered the magic of hand warmers, & I felt invincible as long as I had a hand warmer!

-January: Then came Disney. My husband, daughter Sophie, & SIL, Davis ran a half-marathon.  The flight landing was crap & we bounced, but even with that I remain faceplant free & I even reached up & pulled down the sun visor in the Ivan we rented (1st time in 20 years!  I often try & finally did it – Go me!  Some day I’ll put a visor back up in a car! HaHa) I felt as proud as if I’d finished my own half marathon! 

Back in October, Mark asked me what my perfect day was  & asked if I wanted to go somewhere…I thought about it: Disney & London are probably the most accessible places I’ve been, I enjoy family cruises,  & I love beaches (Destin, FL is pretty & doesn’t require a long flight), but nothing allows me more freedom/independence & less stress/anxiety as staying home.  So I told him I’d stay home if I had a perfect day.  Seems crazy, but nothing appealed to me more than having as much independence as possible & as little anxiety as possible!  (Plus, most of the places I go, I don’t feel very welcome – I think because usually they aren’t accessible – even finding a bathroom is hard & I basically sit alone do much better with one-on-one).

 Mark & I have zero desire to travel right now (during our spring break), &my helper, Angie , is gone all week, so we are trying my “perfect week, where I’m home & can be more independent, feel less stress, & stay warm.  I’m having a “staycation” this week  Hahaha

One more thing.  In January, the church boundaries were re-arranged for my congregation, so I’m no longer the primary president. I now work with the 11-18 year old girls (YW/young women). It’s far less involved, so maybe I can get back to things I have stopped doing.

Speaking of the YW I work with, last week I sent this text on our YW text group, & wanted to share it today on here:

“At the end of class today I had a comment when we discussed “does Christ REALLY know how I feel?” (ie having a period & bleeding all over the place in public) But I talk slow  & am hard to understand, so I rarely share comments in class, but this comment I wanted to take the time to share, & this text group is a great place for me to share! (We missed those who couldn’t be there!)

This question (does Christ REALLY know how I feel) is something I have really struggled with, & I wanted to share what I have learned & know to be true.  On March 16 I will ”celebrate” my  21st stroke-aversary.  I know the atonement isn’t only for our sins, but also for so Christ could “succor (to aid & show relief) His people”. But how does that help him understand the past TWENTY -ONE years of my life ?  It’s not like He has ever had a 21-year-long stroke!  But He has endured the emotions I have felt in those 21 years. So, while He has never physically had a period, He does understand the feelings that come with it  (embarrassment, shame, disappointment, etc)  

The first year after my stroke was insanely hard in every way, as all I could do was blink my eyes. But as I learn to yoke myself with my Savior, my burdens are lighter & as a result I have had some years that weren’t AS hard, even though I have dealt with things that probably have been as hard as that first year, if I tried to do them on my own.”