F.A.Q.

WHEN I HAD MY STROKE, MY FAMILY HAD 2 SCOUR THE INTERNET 2 LEARN ABOUT MY CONDITION, & I STILL GET QUESTIONS EITHER ABOUT MY DISABILITY, OR ABOUT BEING DISABLED.

HERE I WILL FOCUS ON ANSWERING THESE FREQUENTLY ASKED QUESTIONS, ABOUT ME, &/OR ABOUT MY CONDITION,ONE AT A TIME.

FEEL FREE 2 CONTACT ME (BY MY 2 EMAIL ADDRESS ON THE “CONTACT ME” PAGE) W/ANY & ALL QUESTIONS THAT U WANT 2 KNOW. IN TIME, I WILL DO MY BEST 2 ANSWER U, & I MAY EVEN COPY & PASTE IT 2 THE FAQ SECTION OF MY BLOG.

“What are your thoughts about traveling?  We have heard horror stories about broken wheelchairs, etc. I wanted to ask you because you guys travel.”

“Traveling is my way of not letting a disability control our lives. Overcoming obstacles feels like an improvement in health- even if nothing actually changes with physical health. It is a mental win.” 

–Mark

Traveling is mentally, physically, & emotionally draining, yet it can also feel like a huge win because YOU “won,” not the disability!

My #1 advice: DO NOT take the heavy wheelchair u use at home.  Get a lightweight, collapsible one that has a removable lithium battery. Don’t underestimate how important your travel chair is: it has the power to increase/decrease anxiety & change your perspective on your trip!

I know this from experience.  I dreaded my old travel wheelchair, & traveling has been tough for me. In the past, travel has meant a severe downgrade in my lifestyle.  Not only did I lose much of the independence I had worked so hard for, but I also had to find ways to still do a little bit of therapy & my chair (which is a part of me now) wasn’t very comfortable, it didn’t have many of the features I enjoy, was wobbly, & harder to drive. 

At first, I was in a manual wheelchair – that was a nightmare since I only have 1 working arm, so I could only move in circles!  I upgraded to these collapsible chairs that can be either power or manual.  It is frustrating to be left in manual mode somewhere (since these chairs have little wheels), but I was so happy that I could move that I tolerated that how wobbly it was, how difficult it was to drive, how it had manual recline, etc. 

But I just got a new travel wheelchair: Majestic IQ-9000 from Comfy-Go Mobility.  I can’t tell u yet how future trips will go, but I can tell u that for the first time, I’m excited to use my chair, & I felt my anxiety decrease when my new travel w/c arrived: It isn’t wobbly, drives smoother than any other chair I have used (it starts/stops smoothly – if Mark is driving me with power on & suddenly stops, I don’t get knocked around), & it has a remote (which may not be a big deal, & may mean something else to Mark, but to me, the remote means that after 20 years, Mark & I can finally hold hands as we “walk”!)  I cried (with happiness) when I realized this!    My chair also has a lock feature that every wheelchair needs (so kids can turn it on & off, & play with the joystick, but can’t move the chair). This wheelchair has power recline, a “real” horn, & it makes a beeping noise as I back up. (Kinda a cool safety feature cuz people are warned, but we figured out how to turn it off – thank u, YouTube – so I could use it in a quiet place, like a church!) 

I have a bag I like my chair to be put into (then they put it below with strollers & luggage), though there is a closet by the airplane door, & they are required by law to put a wheelchair in the closet, if a wheelchair is not there already.

At our destination:

– I’m fortunate because my husband can lift me, so we don’t need a w/c van or lift, but those can be rented. 

-We always ask for an accessible room with a roll-in shower, though it’s never guaranteed (even when u book one).  They usually have shower chairs or something u can sit on.

-The big thing is to be creative in finding solutions for whatever doesn’t work out – another way I’m fortunate is because my husband has had creative solutions, like a black sock stretched over a ripping armrest, & a wood ball from a craft store in place of a missing joystick!  As Mark puts it, “There are always possible problems. We have had repairable damage to chairs, but most has been fixed after a quick trip to a hardware store or by using tools or emergency parts kits that I have started bringing after a few minor incidents (the kit has things like an Alan Wrench, industrial strength Velcro).”

“The unknown is scary, but it becomes comfortable with practice.“ (Mark)  For more support, u can join something like “Accessible Travel Club” on Facebook.

From the perspective of a caregiver (with an additional focus on international travel):

There are more options than most people realize. There is an entire travel industry around disability travel. There are people in other countries who do all the planning and work if you need it. Cruises are excellent because it feels like staying in a U.S. hotel with daily visits in foreign countries where you do not need to worry about what accessibility is available.  (While) you can never be guaranteed accessible rooms at hotels, you are guaranteed a specific accessible stateroom on a cruise ship where you can plan on things such as left or right-hand handrails near the toilet or in the shower. You just need to book early for cruises to ensure that a limited quantity of staterooms and excursions are available. 

In many ways, many countries outside of the U.S. are more accommodating than our own country. Foreign countries often fast-track wheelchairs through airports and customs. Some countries often do not charge the caregiver at some venues. There is a guilty pleasure when a foreign guide or venue employee goes crazy on someone who should not be using accessible facilities. It typically requires a bit of planning and a few calls or emails to figure things out. We use Sage Travel in Europe since they have trusted guides who understand accessibility. They also act as resources for finding accessibility supplies if needed. They often arrange accessible cruises and trips where applicable excursions and hotels are arranged. I am jealous of some foreign disability toilets where they can have adult changing tables and lifts installed. 

We do not bring the heavy chair with all the bells and whistles. We have a smaller and collapsible travel chair. It is not as comfortable, but it allows for more travel options. Tropical locations (most islands) are difficult to visit. Even if there are cuts in curbs in the towns, most buildings near a beach are on stilts due to hurricane season precautions. 

It helps that I am strong and pretty handy with fixing things. On a few occasions, I have had to carry my spouse over small steps or on full flights of stairs. I know how to fix things and can solve problems really well. AirBnB’s are notorious for over promising. Be prepared to find a shower stool or some adaption that you need for specific needs. If you can find a good business class flight you can get fully reclining seats on long haul flights. Just because it is a first or business-class flight, it does not mean every leg will have all the perks. You can ensure what you need if you carefully vet an itinerary. Business class flights also give access to lounges, which make distance travel much easier. Of course, not everyone can fly business class every time. If when we have flown business class, airplane bathrooms are tiny. We have made it work but I have friends who use a blanket and cath at their seat. A good support team of family or friends is super handy and required in some situations. 

Overall, international travel can be better than domestic travel. London is a great place to experiment with. We are lucky to have a direct flight from Austin. Prior to the pandemic, it was pretty cheap to fly to London on a direct 9 hour flight. You can take a train to Paris from London in a little over 2 hours. A 3 hour flight from London will put you on most cruises in Europe. 

Life is moving too fast

A quick recap of the last 3 or 4 months:

1. Sophia married Davis Wycherly in October in the Jordan River Temple (though it mostly just meant more travel – my awesome S-I-L, Margot-Mark’s “big” sister–by 1 year, was the most awesome wedding planner!)

2. I had my first primary program in October, & I have now been the primary president for a year. Being the primary president at church is crazy busy from September (when I finish writing the primary program) until January (when I’m finished organizing for the new year).  But I love it! It makes me so happy to feel like I still have something to contribute!

3.  We went on a cruise during thanksgiving. It was great if u are vaccinated & go w/o the kids. They have the non-vaccinated & vaccinated sections, so u can go w/o a mask sometimes. It was also very uncrowded. 

4. Jessie just got engaged & will be married in June in the Timpanogus temple to Kyle Van Roosendaal. All 3 of my kids married within TWO years…crazy!

5. Zach, & his wife, Maddie, had my first grandbaby, James, in December, & they just moved to Texas! (Yes, I’m a grandma!  I’m not a fan of the word “grandma” though … my mom is “grandma” & she’s really old! Haha – love u mom!) 

Prior to my stroke, I was a “Pintrest mom”.  I threw amazing birthday parties (I’d taken a cake decorating class so my cakes would be amazing, & I went all out, like making Superman shirts w/capes, or balloon light sabers), made file folder games (thanks to my Elementary Education background), etc. 

After my stroke, I had a really hard time re-defining the word “mother”. If u know the enneagram, I’m a 3, & I define that word by what I do. All of my “best mom” identity was stripped away with my stroke.  It was so tough for me, but Mark says my stroke made me a better mom…the kids didn’t care about all of that!  they were happier just having me there to cover with stickers, watch a puppet show, or to play our improvised version of hide-&-go-seek! 

I don’t think I learned from it though, cuz I’m facing the same issues as a grandma!   I think I’m facing the “Pintrest grandma”. I seem to define that word by what I do, as well, & my OCD-personality only makes it worse, because I don’t “do” what I “think” I should do. To me, a grandma helps mom, possibly by take care of the kids, & does stuff like bake cookies. I do neither. So, I’m working on re-defining that word now.  In the beginning last time, I felt so useless until I discovered unique ways to still be a mom.  Hopefully I’ll learn faster this time!  I’m sure it will help having him live closer!

I had a brain injury, & am having a tough time coping with the outcomes. Can you offer any advice?

Since my husband wrote the 1st year on my blog, u mostly hear about the physical changes…occasionally he addresses the emotional, but u don’t really see even a portion of what it was like emotionally!

The 1st year devastated me!  I had many talents, with a bright, promising future & many hopes & dreams–& all were crushed in a few hours!  I could no longer do anything I used to do, & I was baffled at why this happened to me…I was a good girl, who had never smoked, drank, or done drugs. Why me?

The year that followed was the HARDEST year, & I don’t know if I would’ve done as well as I did it w/o my husband reminding me of my faith!  When I started to doubt what I believed, my husband pulled me through & helped me rebuild my Faith in God. That is what makes me strong. Christ will make our weaknesses strong. So, my 1st bit of advice: check out http://www.comeuntochrist.org. I am serious.  The Book of Mormon helped me enormously!  It might give u hope, strength, & new dreams too.  Can’t hurt to see if it does!

At times I felt very alone, but I soon learned that God has never left me, & actually is either “carrying me” (like the poem “Footprints in the Sand”), or is making me stronger so I can face things.  I know God loves me & I believe that I was prepared to deal with the things that I would face, so I could become the person INSIDE that God wants me to be…& I believe u were prepared for things too!  He loved us enough to give this life to us…It’s hard, but u can do it…or God wouldn’t have given u those things to deal with!

2. I’m a big journal writer, & as so happy when I could type entries again in my journal. One of my 1st entries was a list of all the reasons I wanted to die. My husband is a therapist, & I thought he’d show me some sympathy…so it came as no shock when he challenged me to list my blessings instead!  “Yeah, right,” I thought sarcastically…”What blessings???”

Several years went by.  It took a case of head lice to get me started: I was the only member of my family to not get lice, since I didn’t share chairs with my family!  When I started listing the blessings from my stroke, I listed things that seemed silly or things I had heard my husband say over the years.  Then came the “hard stuff”: take, for instance, my medical condition called PBA–how was it a blessing to not have control over my emotions? But somehow I found a reason, & whenever I get frustrated w/my PBA, I think of that reason, & I am able to deal with things better.

So, my 2nd bit of advice: Write down your list of blessings! Here’s how: Think of something you hate. Then find a reason it’s good. Not what you think a parent or God wants to hear, but what YOU really think.  You don’t have to give anyone your list–it’s private, & for you. If u choose to share it, you can, but it’s up to you when you do share it, & with whom you share it.  But do make the list, & actually write the list.

Don’t just think about it…Actually WRITE it down!  Thinking is a start, but writing it down firms it up in your mind. Just thinking it won’t do a thing! Trust me-I know! For years, I just thought about them, but a change occurred when I WROTE THEM DOWN!  One of the greatest ways I have, & continue, to deal with things is by writing down my list of blessings.  I’ve found writing helps me ponder, soften my heart, & open my mind & heart so I can hear the spirit.  It took me years to write my list, & I wish I’d done it sooner because it changed my perspective on what I faced.   Don’t put it off like I did.

3. My 3rd bit of advice: never ever think “I wish…” or “I can’t …” or ask, “Why me?” Don’t dwell on what u have lost, or what was taken away!  Instead, see what u CAN do, & what u are learning to do. Move forward.  It sucks that it happened…Now go make the best of it!

All your memories are all there, & it may hurt u to think about them.  It hurts if u think, “I used to…” So, find a new way to do what u loved…For example, I was a big dancer.  At 1st, I thought that part of my  life was over, as I can’t walk or use my left arm…but I have found ways I can “dance”, & I often attend a Father/Daughter Dance at my church, where I twirl, use my right arm, & lean my chair back in order to limbo!  Yes, if I think of how I “used to” dance, I would get very depressed, but instead I think of the present & future. 

Another example: I also was an All State singer.  It was VERY hard on me for years to hear how I now sound as I “sing”.  I am still shy, but have adjusted: I started out signing songs in “jenny-ese” (my own sign language) as I got used to my new sound, & practiced matching pitches.  My singing has improved over the years, but I definitely am not the singer I was before!  Still, I give myself a pat on the back!  & everytime u complete a small goal, & u should give yourself one, too!

Which therapy has been the most helpful to you?

I do several varieties of therapy (aqua therapy, yoga therapy, music therapy, equine/horse therapy).  All of the therapies provide something unique, & nothing is necessarily “better” or “more effective.”  Aqua therapy reduces gravity & allows me to walk if I am held right, in the water.  Yoga therapy helps me find “long lost muscles” that can be stretched, strengthened, & “retrained.” But since I have always loved horses & music, I do have my favorites:

Red Arena (horse therapy) uses the big muscle groups, & has provided the most drastic results in the shortest amount of time, & has enormously changed my day-to-day life!  After just a few months of riding, the strength in my core at least doubled what strength I had developed over 10 years of physical therapy at home!  Increased strength in my muscles has helped me to sit unassisted on many “normal” chairs, made it possible for me to participate more in family activities & travel, it has increased my independence in daily tasks around the home, & increased my enjoyment in life, in general.

The thing I have wanted to gain back the most is my speech.  Music therapy got me started, but horse therapy strengthened my diaphragm, & then music therapy is the one that does all the fine motor work & puts the muscles (that I develop in horse therapy) to work so I am able to relearn speech.  All my therapists hold conversations with me, which only strengthens my ability to speak, & helps my music therapist know what things I need to work on to help me be more clear.  All the therapies have provided something that has been essential in my progression, but horse therapy has provided additional, unexpected emotional benefits, as well.

I can’t say that everyone will have the same benefits as I do with music therapy (since I know “musical minds” are “wired” different-so those w/o a musical background may respond better to occupational therapy), but equine/horse therapy seems a bit more universal.

PBA and depression

Friday we were supposed to fly to Idaho at 8:30 am, with a layover in SLC. All seemed well-we were checked in, told it was on time, & there was a plane…but no crew!  We ended up not leaving until around 3 pm, so we ended up driving to Idaho from Utah, & missing our tour of BYU-I. (bummer), but I wrote this post as we waited;

Awhile ago, I watched an hour long presentation on Neurocarelive.com about PBA.  If u forward about 19 minutes in, & watch until about 25 minutes in, it discusses the differences between PBA & depression.  Since PBA (PseudoBulbar Affect  Disorder) is an inability to control your emotions, & often is classified with uncontrollable laughter or crying, it is commonly mistaken for depression. Though it is possible to have both, PBA is a neurological disorder, & is not “sad on the inside,” like depression.  In this blog entry, I will share how I have dealt with both of them. On my recommended sites, I recently added a blog for those suffering w/depression, & I also have shared some websites that offer PBA resources.

One of the most effective ways that I have found to deal with PBA is distraction. At first, I thought this required me to leave the room, & if I can, that is great, but it can also just mean a change of position, a change of eye position, or as simple as scratching something, or thinking of something else. Focusing on my breath, & taking smoother, bigger breaths has also helped me.

I was once asked about the medicine I take for PBA (Nuedexta), but in the above mentioned video, it explains that before medicine was made specifically for PBA, anti-depressants were used.  Here are the Three Main Treatments for PBA (according to Neurocarelive.com)

1)     Tricyclic antidepressants (TCAs) – Examples:  Amitriptyline (Elavil), Nortriptyline (Pamelor)

2)     Selective serotonin reuptake inhibitors (SSRIs) – Examples:  Citalopram (Celexa®), Fluoxetine (Prozac®), Fluvoxamine (Luvox®)

3)     Dextromethorphan/quinidine (DM/Q, Nuedexta®)

A great tool for depression was suggested to me years ago, & though I have  shared this before, I want to share it again: When I was struggling during the 1st year after my stroke, my husband (who is a pshyco-therapist) encouraged that I start writing down all I am grateful for.

At 1st, I thought he was crazy–I couldn’t talk, or even move, & wasn’t even happy to be alive (even though I had requested to live, certain that I’d “get better” fast).  So, what was I supposed to write???  It took me 3 years before I tried making a gratitude list, & I started because my family got lice–but I did not get lice, because we never shared chairs…so, it dawned on me that I was grateful for something–as minuscule as it was!  Ha!  Ha!  It took me a LONG time before I could say/write that I was grateful to be alive, but now, anytime something bothers me, I look for the good (ie. before I could move, I couldn’t get myself a snack, so I wrote about how it was  a great forced “diet”! Ha!  Ha!  I suggest writing the list though–I tried first to just think about them & pray about them, but writing them down firms them up in your mind, & allows the spirit to talk to u & remind u of other things.

Anyway, I still have days I struggle–many of my posts come after those days: the sprit speaks to me as I type, so all the inspiring stuff on my website oftentimes is the Lord strengthening me, too!