La Quinta Inn & Suites by Wyndham Palestine, Texas

 We stayed at the La Quinta Inn & Suites by Wyndham in Palestine, Texas at the end of September when we went to Palestine as part of a vacation trip.  We went to Palestine for the purpose to ride the train there.  I will review the train in another post.  As always, we reserved an accessible room.  We checked into the room and I stayed in the room while my husband went down to the van to get the rest of our things.  I went to the bathroom where I discovered the first major problem with this room.  The bathroom door was located right by the room door.  It opened out into the hall of the room.  Because it is an accessible room, which requires a wider doorway/door,  the door took up most of the room in the hall.  My wheelchair didn't fit between the wall and the door.  If I did a lot of maneuvering, I could manage to get past the door eventually, but I did damage the wall with my chair.  It might have been possible for a smaller chair to get past, but my chair is an average size, so it would have had to be a really small chair.  Getting out of the bathroom was even more difficult than getting into the bathroom.  

My husband went downstairs to complain to the clerk about the room.  He came up to the room to see the door.  He commented, and I quote "other people have complained, but I didn't know what they were talking about".  There had been other complaints about this door!!.  Nothing had been done!!.  There were no other rooms available as all the accessible rooms were just like this one.  We asked about taking the door off, but he said there was no on sight maintenance.  My husband said he would do it himself.  The clerk said we could do what we needed to.  There was no manager on sight now, so we would have to speak with her tomorrow.

Bathroom: the rest of the bathroom was barely accessible.  There was a toilet with bars around it.  There was a regular tub, although it did have bars inside it.  There was no shower bench in the tub.  We had to ask for one.  The shower had a regular shower head in it, not a hose at all.  There was no way to direct the water onto my body except to move the shower chair, but each time you move the shower chair, the legs that are inside the shower have to be adjusted to keep the chair level.  My husband was with me, so he was able to adjust it for me.  

The room: The bed was too high.  This seems to be a common problem with hotel rooms.  I was able to stand on this trip, so not as big of an issue for me this time, but if you cannot stand, this may be an issue.  I am never fond of the height of hotel beds in general though because even when I can stand, I am only 5' tall, so they can be challenging for me.  The rest of the room was spacious.  There was a table, a couch, and 2 TVs.  From an accessible point of view,  the table was a problem.  There was a power strip between the table and the couch that was ideal for plugging in a laptop while using it at the table, but it was unreachable from my chair.  The  only plugs I could reach from my chair were the ones on the night stands, and on the left side of the bed (as you lay in the bed)

Parking: There were 3 accessible parking spots, with 2 of them being van accessible.  There weren't a lot of people using them so we never had too much competition for them.

Pool:  They had an outdoor pool.  We noticed there was a chair lift from the parking lot, so we inquired at the front desk to see how to use it.  We were told the battery was in place and it should be working.  We went down to the pool only to find out the lift didn't work at all.  There was no controller at all.  We reported it to the front desk, but she didn't know anything about it.

Now, back to the issue about the door.  After my  husband and I returned from our train trip, I asked to speak with the manager.  I reported to her the problem I had with the bathroom door, along with the issue of the shower not having a hose.  The manager told me the hotel was like that when the owners bought it and there was nothing they could do about it.  She was not apologitic at all.  She was actually rather rude about it.  She did say she would report to the owners about the shower head and see about getting it replaced.  I told her I thought it was pretty disgraceful that a hotel that had had many different complaints about an accessible room had done nothing to try to fix it.  At this point she sort of gave me an apology, but it came with an eye roll.

I would not recommend this hotel for someone in a wheelchair due to the problem with the bathroom door alone.  Add in the problem with the tub/shower, and this makes this hotel's accessible rooms not accessible at all as far as I'm concerned.  They definitely are not accessible for someone in a wheelchair who is by themselves.  Our stay would have been a nightmare had my husband not removed the bathroom door.

A Quilter's Folly

 My husband calls A Quilter's Folly my second home, especially prior to the pandemic when I would spend hours and hours there.  I have been a customer there for many, many years, pre-wheelchair.  The staff all know me well. This makes A Quilter's Folly one of the most accessible fabric stores I have ever been in.

Parking:  There is 1 accessible parking spot right in front of the entrance to the store.  It is a van-accessible spot, although the striped area is a bit on the small side.  If you only need parking in close proximity, there is a lot of parking spots in close proximity to the entrance.  When the only accessible spot has been occupied, since I do require the room for my ramp to deploy, I am able to parallel park directly across from the entrance, along the curb.  There are rarely any cars parked there, so I can just pull up along the curb.

The store:  Despite this being a store full of fabric, there is always plenty of room down the isles.  When they rearrange the shelves, the owner always does so with my wheelchair in mind.  The first thing she tells me when I come in after a rearrangement is "tell me if there is something you can't get to."  There are things in the notions area that are out of my reach, but there is always a staff member available to get things down for me.  When I am there to shop, the staff will help me get the fabric bolts off the shelves for me too as they can be difficult for me to manage depending upon my upper body strength.

The Classroom:  A Quilter's Folly offers all kinds of classes, both for sewing and embroidery (although not as many as they did prior to the pandemic.  Hopefully they will start to come back soon).  The classroom area is a bit tight, but when I am signed up for a class, they reserved the spot for me that provides the most room for my chair and set up an ironing board that is accessible for me.

Bathroom:  There is a clear, open path back to the bathroom, which is in the storage area of the store.  The bathroom is large enough that my chair can easily fit in there and rotate 360 degrees.  It is a standard accessible bathroom.

I know some of you may be thinking that this store does all of this because I have been such a long-time customer.  That may be true, but I am sure the owner would do this for anyone.  She was a hospice nurse prior to retiring to run her store full time.  She and her staff would go out of their way to help anyone in need in the store, including making the store more accessible if someone with a different chair style than mine was having a hard time getting around.

Fairfield Inn and Suites Fort Worth at Cityview

This is my first post regarding accessibility in the travel industry.  I hope to be adding restaurants and other businesses as I go. I may come up with a rating system down the road sometime, but not yet.   

The first hotel I am reviewing is the Fairfield Inn and Suites Fort Worth at Cityview.  I will be reviewing 2 different experiences at this hotel.  Our first experience occurred the first week of October.  We initially had reservations at another hotel, but because of some confusion in the reservation process, we had reserved a hearing impaired room rather than a wheelchair-accessible room with a roll-in shower.  The hotel called its franchise sister hotel and changed our reservations to this hotel.

Parking: There are a total of 4 accessible parking spots, 2 in the front of the hotel and 2 at the side.  This is a small hotel.  We never had problems with parking.  Being in a wheelchair and having a van with a side ramp, accessible parking is important for me, not just for close proximity, but so I have room for my ramp.  The striped area next to the spots was nice and roomy too.

Bathroom: It was a nice bathroom.  There was plenty of room for my chair to maneuver around.  There were bars around the toilet and it was an elevated toilet.  The shower was a very large roll-in shower.  It had a built-in bench at the end closest to the door with the shower controls easy to reach right next to the bench.  The shower head was on a hose and was removable.  The other end of the shower had a regular shower head with room for a person to stand.  There was a knob close to the shower controls that enabled the water flow to be switched so it went to one end or the other or both.  It was awesome.  I have a basic roll-in shower at home.  Now I want one like this.  The hair dryer was stored on a shelf under the sink so it was easy to reach.  The shelf was a very convenient place to put my make-up and skincare so it wasn't all over the bathroom counter when I wasn't using it.

The room: The room was a bit more of an issue.  It was tiny.  There was only a walking path around the king-sized bed.  My wheelchair fit on the left side (when in the bed) and at the end, but not on the right.  When I say fit, I mean just barely fit.  There was very little room between the wall and the bed on the side, or the bed and the desk at the end.  Since my chair only fit on that one side, this presented a big problem for my husband.  My husband requires CPAP at night, but there was not a plug on his side of the bed for some reason, only on my side.    He had to stretch his CPAP machine across the side of the room so he could plug it in at the end of the bed.  He also couldn't plug his phone in next to him.  He had to plug it in at the end of the bed.  There was a minifridge that was low enough, but it was difficult for me to get into because it opened towards the head of the bed and I could only get to it from the other side (I hope that made sense).  My husband had to get things out of it for me.  The hangers in the closet were down low so I could reach them.  I didn't need the iron, but if I had needed it, it was out of my reach.  The bed was much higher than the seat of my wheelchair.  I could stand at that time, so it wasn't an issue for me, but I can't always stand, so that is a potential problem.  The door was extremely heavy and I couldn't open it by myself (I have upper body weakness).  I know hotel doors have to be heavy for fire safety, but accessible rooms should have a button to open them or something.  This room would have been difficult for me to manage had I been alone.

Amenities: This hotel offered a breakfast buffet.  The things I wanted I could easily reach.  If someone in a wheelchair wanted bagels or muffins, that would have been a problem though.  They were in a stacked holder (I don't know what to call it) that might have been out of reach for someone in a chair.  I didn't go into the gym, but all I saw in there was a treadmill and an exercise bike.  They had a pool along with a lift.  We inquired about how to work the lift and the staff said they just needed to charge it.  The next day, we got the lift battery from the staff and attempted to use it.  The lift still didn't work.  

Staff:  The staff was very kind and tried to be helpful

Our next visit to this hotel was on Black Friday.  We had a fairly good experience at this hotel, despite the room being a bit small and it was close to where we needed to be.  We made reservations for the proper type of room this time and double-checked them several times.  The reservations were made several weeks in advance.  They were for an accessible room with a roll-in shower.  When we arrived, the clerk gave my husband the key cards.  He verified with her that it was a room with a roll-in shower before we went up to the room.  This time I cannot stand, so a roll-in shower is vital.  She told us it wasn't, then checked her computer and told us there wasn't a roll-in shower room available.  This hotel only has 2 and one was being used long-term and the other just checked in 3 days ago but they wouldn't check out until the next day.  We asked why our room wasn't saved for us if we had a reservation.  She said someone made a mistake.  She offered us a room with an accessible bathroom, but it was a tub with a removable shower chair.  She also upgraded our room.  That was an acceptable option for us.  However, when we got up to the room, it wasn't accessible, and there wasn't a tub either.  The bathroom was small.  There was a half wall between the sink and the toilet.  My wheelchair didn't fit past the wall.  It was a glassed-in shower stall with the door opposite the toilet, so I couldn't get to the shower either.  I wouldn't have been able to maneuver my chair in such a way that I could have transferred to a shower bench even if I could.  We went back downstairs and told her that it was not an accessible room.  She told us it was mismarked, then said she didn't have any other rooms for us.  We are 3 hours from home on Thanksgiving weekend.  She called 1 hotel to see if they had an available room but they were booked.  She said that was all she was allowed to do.  We asked her "What do you expect us to do?  We had reservations.  We are 3 hours from home with no place to stay".  She just kept saying there was nothing else she could do.  My husband was able to call around and get another hotel reservation about 20 minutes away.  It also costs us $30 more.  The manager was not available.  I have tried to call her a few times but have had to leave a message.  She has not called me back.  I will be emailing the cooperate office also.

Going Home Thursday

I had intended to post updates while I was in the hospital, but things have been a little crazy.  Plus, I have had a lot more trouble with my hands this time.  It has affected my writing and definitely my typing and many other areas I have yet to discover.  I'm sure it will be an issue with my sewing. 

When I moved over to rehab, I was pretty weak.  After all the evals were in and we got a response from insurance, it was decided I would get to go home on the March 14th.  That would make my full hospitalization 3 weeks long.  Now, I have been in rehab for 11 days and I am doing better than they expected, so now I get to go home on the 12th, after Dr. Latorre refills my baclofen pump.

There has been several things different about this hospitalization.  First of all, the movement to my upper body came back slower than normal.  It took 3 days for me to start being able to move my hands, then once I could wiggle my fingers a little bit, it took more than 24 hours before my arms were strong enough to feed myself. 

I had my evaluations at rehab 6 days after the onset of paralysis.  Usually, I don't have too much trouble with the slide board transfers on my eval day.  They are a little challenging due to weakness, but I know the technique well.  This time, I could not transfer on my own.  I needed help to get from the bed to my chair.  I still had the indwelling catheter in, so I didn't have to worry about transferring to the toilet just yet.  Toilet transfers are much more difficult than bed transfers.  The slide board doesn't fit onto a toilet seat very well.  During my 2nd or 3rd admission for ascending paralysis, I discovered it is much easier to just slide directly over to the toilet from my wheelchair rather than trying to use the slide board.  I have been doing it that way ever since until I can do stand-pivot transfers.  However, my catheter was discontinued around 6pm on the 1st day, but I was already done with therapy, so I had to I&O cath from bed.  It didn't take too long before my transfers were much easier.  They still weren't easy though.

The other thing that was different this time is the staff has been more knowledgeable about my diagnosis.  There was a rather extensive medical journal article published recently about Functional Motor Disorder, which is just another name for Functional Neurological Disorder.  Recently, the staff here had a journal review of the article.  This means they have all heard of it and actually have some information about how it is treated.  This time my therapy has been a bit different.  We have tried to do  more movements that are "natural" so my brain will use the proper pathways and not the messed up pathways.  We are going to continue using this PT method in outpatient PT.  I am also going to start cognitive behavior therapy to start trying to eliminate the messed up "software" in my brain so it will only use the proper "software"/pathways.  Hopefully this will decrease the severity of the paralysis episodes and put more time between the paralysis episodes.  Ideally, I would like them to eventually stop, but I know from the blessings I have received that the time for that has not come yet.

The other big news I have is I have a new calling.  I have been serving as the Relief Society secretary in our ward for the last 8 months.  I was supposed to meet with a member of the bishopric the Sunday I was admitted.  When my paralysis started, I called the executive secretary and told him I wasn't going to be at church the next day and asked if they could do the interview over the phone.  I got a call about an hour later from the 2nd counselor in the bishopric releasing me as secretary then calling me as 1st counselor in the Relief Society presidency.  I was a little nervous about a calling with so much responsibility, but I know that the Lord is aware of my situation and the new Relief Society president is aware of it also, since she is my ministering sister.

I found a book on Amazon called Overcoming Functional Neurological Symptoms.  It is suppose to help with reprogramming my brain and helping me access the normal pathways in my brain and eliminating the abnormal pathways the FND has created.  I just started working on it.  It is actually a workbook, not just a self-help book.  I will also be starting cognitive behavior therapy specific to FND that will hopefully help eliminate those abnormal pathways.  I am starting things off by keeping a daily journal on how I feel both emotional and physically as well as documenting the things I do.  We are hoping we can find the trigger for the paralysis episodes. 

It happened at QuiltCon

My friend Delia and I love going to QuiltCon together.  It is a quilt convention that comes to Austin every other year.  I have made a few quilts, but I have to admit that quilting is not my love.  My sewing loves are machine embroidery and bag making.  If I can combine the two, that is even better.  While at QuiltCon, I discovered there is a charity where I can make simple bags, they get mailed to Africa, then a company there will fill them with non-disposable menstrual supplies and hand them out to the girls in the villages so they don't have to miss school.  They even give you the purse pattern.  It is a pretty simple pattern, so I plan on using a lot of my scraps to make purses and send them to Africa.  Here is their website if you want to check it out -https://sewpowerful.org/ .  I'll try to post some of the purses I make on here.  Since the patterns are simple, I plan on using my creativity to have some fun with it, maybe even combining it with embroidery.

After we checked out all the shops, we went through all the display quilts.  There are some really cool ones.  Some were done by hand and others by machine.  They were incredible.  I will never have that kind of talent with quilts, but since it isn't my passion, I'm ok with that.  When we were looking at the last row of display quilts, my feet felt like they had gone to sleep.  They were just resting on the footrest of my chair, so they shouldn't have felt that way.  I knew what was happening.  I tried to wiggle my toes, but they were paralyzed.  We were finished with QuiltCon anyway, so we headed to the car.  I hadn't told Delia anything yet but when I got to the car, my legs were totally paralyzed.  I had some trouble transferring over to the driver's seat.  Delia was a little freaked out.  I was able to drive home though due to my hand controls. 

When I got home, I told Stan what was going on.  We no longer rush into the hospital.  I ate lunch, packed my bag, we watched some TV and did a dressing change on the cat's leg.  I decided it was time to go to the hospital when the paralysis moved up to my torso and I was having trouble transferring in and out of my wheelchair.  I was admitted and got up to my room around 1 am.  By  8 am on Sunday morning, I was totally paralyzed except my head.  It took it a little longer for the paralysis to fully set in.  It has been very slow to resend.  I first got a little bit of wiggle to my fingers yesterday morning.  Usually, by the end of the day, I can raise my arms and feed myself.  I didn't start feeding myself until this morning and I can still only raise my forearm.  I was able to sit on the side of the bed today and was able to hold myself up.  Yesterday, I kept falling over.  I should be going to the rehab hospital tomorrow.  I suspect I will be there longer than last time (only 8 days) since my strength just isn't coming back as quickly as it has in the past.  We will see what happens once I start moving around in rehab.  Hopefully my brain will remember how to send the messages properly once they can get me up and moving. 

I'm trying really hard to stay as much on my diet as possible.  My diet goals are to get as many vegetables as possible and not get any sugary foods while I am here.  It is impossible to avoid carbs, but I will just start right back on keto as soon as I get home.  Part of keeping this weight off is going to be learning how to manage eating on vacation, in the hospital, for holidays and birthdays, then being able to go back to the strict keto diet as soon as those things are over.  I think I am finally getting the hang of it.

Our mini vacation

We were supposed to leave for the Mayo clinic in Arizona on Tuesday.  Since my appointment was cancelled and I couldn't get an appointment in Minnesota, Stan and I decided we needed to get away for a few days.  He already had the time off from work and I had cancelled all of my appointments.  We decided we were going to go to Houston and visit some of the museums.  We hadn't been to any of the museums in Houston since Rachael was competing in dance.  Whenever we had dance competitions in Houston, we would always go to the museums there.  The kids loved the children's museum in Houston.    

Monday morning I had a few appointments.  Jeremy had a dentist appointment with a new dentist at 10, Stan had a chiropractor appointment at 9:40 and Lucky (our cat) had a vet appointment at 10:40.  I took Jeremy to the dentist, leaving Lucky in the van (don't worry, it was a good day for it, overcast with temps in the 60s).  The plan was for Stan to go to his appointment then to come pick up Lucky.  It didn't work out that way.  I left Jeremy there, took Lucky and Stan came to get him.  

Lucky's vet appointment went well.  He has had a rough time lately.  I'll have to tell you the story of how he got his name some time.  Lucky has a tumor on his ankle and the skin has been broken.  When I was in the hospital last, it got very infected with a resistant bacteria called Pseudomonas.  We have been doing daily dressing changes and giving him oral antibiotics for over a month now.  Cats are not easy to give medication to.  You can't hide it in food like you can with dogs, at least not with Lucky.  He his a picky eater.  The vet said to put it in yogurt but he won't eat dairy foods.  I've never seen a cat not like dairy.  His infection is finally cleared up.  We still have to do the dressing changes though.  Now we have to go to the surgeon to find out what the next step is.

Houston was fun.  I'm so glad I don't live there though.  Parking was a nightmare wherever we went and was expensive.  The museum was a lot of fun.  We went to the planetarium show.  Tom Hanks was the narrator for the show.  We had been to this museum before, but the last time was 15 years ago and we had 3 little kids with us then.  This was definitely a calmer visit.  

We also went to the butterfly center there.  It is so cool.  It is a huge greenhouse full of plants and trees with hundreds of butterflies flying around in it. They do all kinds of research on butterflies there too.  They had some cocoons set up for display.  There was a butterfly that had just emerged from  it's cocoon.  It's wings were still wet and limp.  I've never seen that in real life.

We went to a really cool restaurant for dinner.  It was called The Hobbit.  It was an old house converted into a restaurant.  It had mismatched wooden tables and chairs.  There was a very low to the ground chair made from logs with a fur covering on it.  There was art work on the walls from the Hobbit and Lord of the Rings.  It was a cool place.  The Lamb burger was delicious too.  I splurged a little bit and had some sweet potato fries.  We had dinner at the Cheesecake Factory.  I ate in plan for dinner, white fish with an olive oil/basil/sundried tomato topping, asparagus and cauliflower.  It was delicious and 100% keto friendly.  The cheesecake didn't even tempt me.  I haven't weighed since I got back, so I don't know if I gained any weight while we were on vacation.  I felt like I ate more than I usually did and I couldn't eat as many vegetables as usual.  I'm not stressed about it though.  Part of making this weight loss a permanent part of my life is learning how to navigate vacation and how to splurge a little bit when I am on vacation without letting it pack on the pounds and totally derail me.   

New Year, New Diagnosis

There is way too much that has happened in the last year to update this blog with the details, but I will try to sum everything up.  Over the last 2 years, I have continued to have ascending paralysis episodes approximately every 3 months.  I have seen multiple neurologist for this as my neurologist was stumped.  It was decided pretty early on that this could not be from MS.  My MRI remained free of lesions still.  After 12 years of aggressive disease, there is no way I wouldn't have lesions.  So now I was without a diagnosis at all.

In June of 2019, I went to a different hospital for my paralysis and saw a different team of neurologist.  I had some of the tests repeated during an acute attack that had previously been done between episodes.  They remained normal.  This neurologist thought that I had Functional Neurological Disorder.  She explained that this disorder is like having a software problem in your brain.  All the computer hardware (you nerves and brain) work just find, but the software is all messed up.  We all know what kind of problems a computer can have when the software is messed up.  She sent me to the website www.neurosymptoms.org to learn all I could about the disorder.   We spend the weekend reading the entire website.  I had a lot of questions.  There were things I felt didn't fit.  One of the most important things we read is that if you don't accept your diagnosis, you cannot ever get better.  The way you get better is to reprogram your brain, but I couldn't find any information about how that is done.

Over the next 6 months, I had all of my questions and concerns answered and finally was able to accept the diagnosis just before Christmas.  My neurologist didn't know much about it, so I started seeking for a provider that could help me with "reprogramming my brain".  I found that had an FND clinic at the Mayo clinic.  I was able to get an appointment at the Arizona clinic, but a few weeks prior to my appointment, they called and cancelled my appointment because they don't treat FND at that location, despite the fact that I asked 3 different times and was told that they did in fact treat it there.  They referred me to the Minnesota location.  I called for an appointment there but my case had to be reviewed by the doctor before I would be given an appointment.  I gave them as much information as I could about my medical history.  I got an email 2 days later than I would not be offered an appointment.

My PT, Irina, has been amazing.  She is certified in neurology, but didn't know anything about FND.  That isn't stopping her.  She has been researching the disorder and trying to find out how to use physical therapy to help me.  In every publication I have read, it states that PT, specific to FND is a vital part of recovering both from the weakness associated with FND and reprogramming the brain.  Irina has asked me to keep a journal of everything I do every day and how I feel both physically, mentally and emotionally.  I plan on using this blog for that purpose.  She is hoping by keeping this journal, we can figure out a trigger for my flare-up.  If we can find a trigger, maybe we can avoid that trigger. 

The other thing I will use this journal for is to help me as I write my book.  I started writing a book about 6 months ago about the trials of my life and how they have helped me build my testimony, understand the Atonement of Jesus Christ and made me the person I am today.  Now that I have this FND diagnosis, I also want to use it as a way to help other people with this disorder.  There is a serious lack of information about this disorder.  Part of the problem is that it is a fairly new disorder.  It is similar to conversion disorder, and some doctors will use the name interchangeable, but conversion disorder has a definite psychiatric cause.  FND does not.  For some people, there is a history of trauma prior to the onset of their disorder, but not for everyone.  Some have a history of other medical problems that trigger the disorder.  They have not found a definite things that triggers the brain to go haywire like this.   They also haven't found a definite way to reprogram it.  The doctor who diagnosed me made it sound like that reprogramming was possible, but the information I have been finding says that most patients only get slightly better at times, but then have relapses, much like MS.  The only difference is there is no permanent damage to the brain like there is in MS, at least that they know of.  There is a lot of research being done on this disorder now.  They have discovered that functional scans of the brain of FND patients do show abnormalities.

So, in the past, I have not done a good job of keeping up with my blog, even when I really wanted to.  I hope I can do better this time since it is important that we try to find a trigger.  My goal is to post about 3 times/week, maybe more.