Finding Joy in Spite of Our Circumstances

Finding joy

Finding joy in life is not always easy regardless of your circumstances.  I believe every person struggles to feel joy at some point in their lives.  Joy seems the least attainable when we or someone we love are suffering, which is why finding joy when your loved one is suffering daily can be extremely challenging.

So how do you find joy? It is such a great question. My sincere belief is that joy can’t be found in a place, a person or a thing, it has to be chosen.  I know the word “feel” is used a lot when talking about joy but if there is one thing I have learned over the years, it is that you can’t trust how you feel.  Feelings inevitably change. One day I might “feel” like having Mexican food for dinner but the next day I might “feel” like having pizza. One day I may wake up and “feel” like I never do anything right, discouraged and beaten down by life.  But later that same day I might get some really great news and all of the sudden I “feel” like I am on top of the world and I can accomplish anything. I hope you are starting to understand what I mean about trusting our “feelings”. Don’t get me wrong, feelings are important and totally valid because they express how we are seeing life at any given moment in time.  However, I think it is very important for us to realize that our feelings are constantly ebbing and flowing with our changing emotions and circumstances. 

We choose our behaviors, whether consciously or unconsciously each day and those choices may even change throughout our day.  For instance, if Bob wakes up in the morning and he is mad at his wife, Bob is likely to be grumpy towards her until the issues between them are worked out.  Bob could then arrive at work with a cheerful smile and chipper attitude towards his co-workers. Bob can choose to be kind to them since his co-workers did not upset him.  These behavior choices are directly affected by how we “feel” in the moment.

There are some days I wake up and I am feeling good mentally, physically and emotionally.  Those are amazing days and choosing joy is super easy. But there are those days when I wake up and I am not feeling good, maybe I have a headache or a cold.  I might wake up with sore muscles and I may just feel a little down. Those days are very difficult to choose joy and while I may not always choose to find it, I do know ways to help myself feel joy in spite of how I am feeling. Here are some of my go-to’s when joy seems unattainable:

Three things that may help you in finding joy

1. Count my blessings- it may sound old and cliché but it’s true, I start speaking out loud all the things I am thankful for in my life and I am intentional about not letting any negatives creep in. Some people might like to do a written gratitude flood- writing down every blessing, and hanging it somewhere that they can see it through out the day to help remind them of the good in their lives.

2. I put on music- for me it is always praise and worship music but it could be any upbeat music with a positive message that gets your spirits up and may even make you sing along…for an added dose of joy…dance!!  Not only is dancing fun, but getting your heart rate up naturally helps to fight off the “blues”.

3. Find a way to bless someone else- one of the best ways for me to get out of a grumpy funk is to find someone else I can help. It might be bringing someone a meal, sending a handwritten note or even picking up the phone to call someone just to let them know you were thinking of them.  Brightening someone else’s day never fails to bring me joy.

“We are the only person in charge of the choices we make” is something I tell my children often.  I can’t make choices for them and they can’t make choices for anyone else, we all have to make our own choices.  When we realize that we can choose our behavior and we can choose joy, I think it really empowers us to stop letting our emotions and feelings control the way we act.  I wish I could say that I am an expert at living out these truths everyday in my own life, but I am human and I fail often. However, knowing these truths allows me to reign myself in when I am in a funk for a day or two.  I believe we are all going to feel down sometimes, but I also believe we can choose to pull ourselves out of the mire and find joy even in the most difficult of life’s situations.

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Disabled Parking Do’s and Don’ts

What are the different kinds of disabled parking and how are they marked?

There are two different types of disabled parking spots that you might see in public or private parking lots.  Disabled parking places must always be marked with the international symbol of accessibility which is a blue sign with a picture of a person using a wheelchair in white. If the sign appears by itself, that is a standard car accessible parking space which may have an access isle of 60” between two accessible parking spaces, but not always.

 The other type of disabled parking spot will have the same sign but in addition you will see the words “van accessible” under the picture.  This space is specifically for disabled persons driving a van that has a side loading ramp which requires more space. These parking spaces have a larger access isle (96” wide) which is the area with slanted lines (usually blue or white) directly next to the van accessible parking space. 

If you are a disabled person, does it matter which spot you park in?

ADA law requires at least one disabled parking spot per every 25 spaces in a lot.  If there is only one spot it is required to be van accessible (according to the current law).  So, if you are parking in a lot with only one accessible spot it is open to the first person who has a placard or plates that allows them to park in that spot.  However, if you are in a larger parking lot with several accessible parking spaces, there is definitely some common courtesy that should be considered. Persons not requiring extra loading space for a wheelchair or walker should always park in the accessible spots that are provided that offer no loading space but are simply close to the building.  Only if those are full or not provided should that person park in a space with a loading zone. Even more, no one should park in a van accessible zone unless they have a van with a ramp for unloading unless there is absolutely no other accessible spot available. I have witnessed a person parking in a van accessible spot when there were literally 10 open accessible spots and half of them did not have loading zones.  That person did not take into consideration that a person with a van ramp cannot even get out of their vehicle if there is not a space for their ramp to drop and for them to roll down and past to safely exit their vehicle. 

Who can use disabled person parking?

Disabled parking spaces should be used ONLY by persons with the disability.  If you “borrow” someone’s placard so you can get a “good parking spot”, well there is nothing else to say but shame on you!  Please consider that when you do that, you are keeping someone with a true disability from having the parking space they need, and in my husband’s case, preventing them from even getting out of their car. Each state has its own forms and criteria for handicapped parking permits. Typically, the state’s DMV runs the program.  Usually, the DMV will need your doctor to verify your medical condition. If you’re visibly disabled and appear at a DMV office, the requirement of a physician’s certification might be waived in some state

My Biggest Pet Peeve about disabled parking

My all-time biggest pet peeve is when people don’t honor the lines of accessible parking!!! Just last week my husband and I were attending a gala for our local pregnancy health center when we pulled into the only available “van accessible” spot to see the very rude parking of the person in the space next to the loading zone between us.  Sometimes when this happens my husband has to hope he can stop or turn in time when coming down the ramp and sometimes he runs into the car with his foot plate or the blue side bar of his wheelchair as he turns. I never feel bad for that person if their car gets a mark on it because honestly, if you park like this you are just asking for a dent in your car in my opinion. It just doesn’t take that long to back up and park between the lines to be sure you are allowing the full loading zone for someone with a ramp.

Let me share some ridiculous stories with you of a people who actually defended their foolish parking that prevented my husband from getting back into his van once it was parked in a public parking lot.  The first story I will share took place at our church, but it was for a non-church related event. Each year in the city our church is located in, there is a wonderful firework display on July 3rd for the city’s birthday.  Our church parking lot just happens to be the perfect location to view the fireworks display so naturally many of our church members along with people from the community gather to watch the show.  The parking lot fills up closer to 9pm when the fireworks go off, but we get there hours ahead and have a meal and hang out with friends. This particular night it was pretty chilly outside so as soon as the fireworks were done my hubby headed for his van to get out of the cool air even though he knew it would be quite some time before he could actually get out of the parking lot.  A friend of ours walked with my husband over to his van only to find that someone had parked their car in the loading zone making it completely impossible for my husband to drop his ramp and get out of the cool night air. My hubby had a much better attitude about all of it than I did when I heard about it later. Eventually a guy comes up to get into the car parked in the loading zone and my husband very calmly said “hey man, your car is the loading zone and I can’t drop my ramp and get into my van”.  Then the guy actually had the nerve to say to my husband “yeah, I HAD to park her, you know?” My husband said he just shook his head at the guy. It is a good thing for that guy that I had no clue that was happening, I most certainly would not have been so nice. I was so angry when I heard this story. No apology or taking responsibility for what he had done, just a lame statement that was in no way true. He did NOT NEED to park there. I guess the part that bothers me is how inconsiderate people are about the needs of others, thinking only of themselves in the moment. 

Another great story took place last December when we were leaving from our company Christmas party.  Here is how the car was parked:

Here is what I posted on Facebook that night along with these two pictures:

{I love it when people park over the loading zone and see Bill trying to get in his van and act like it’s no big deal. Why are people so inconsiderate???

Apparently, the older woman driving had been drinking because the passenger in her car asked her if she was okay to drive!!!  She couldn’t park right sober so I would be very concerned about her ability to drive after having some drinks.

I told them they were parked in the loading zone to which they both didn’t seem bothered. The passenger told me “yeah yeah it’s okay”. I told her it was NOT okay because we would be stuck waiting for them if they hadn’t come out. I told her loading zones are for people in wheelchairs to get in and out. She then told me to go have a whiskey and shut up!!!}

I mean really? You can’t make this stuff up.  Some people seem to feel the need to defend their foolishness and not accept responsibility for their actions.  How can we ever expect the next generation to be kind and courteous and accept responsibility when some of the older generation is not modeling it for them?

I hope after reading this you will think more about respecting disabled parking spaces.  Think about the person that might be affected by the way you choose to park. Please take an extra 20 seconds to back up and adjust your parking position if you are over, on, or even very close to the lines for an accessible parking spot or loading zone.  I encourage you all, able bodied as well as disabled, to be considerate and demonstrate kindness by being courteous of the parking lines. 

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Handicap Accessible Is NOT Wheelchair Accessible

Wheelchair Accessible?

I will be honest and say that before my husband suffered from an injury that resulted in his paralysis and dependence on a wheelchair, I had no idea about the lack of accessibility for wheelchairs that existed in the United States alone.  However, since my husband’s injury, I have learned first hand more times than I can even recall that the world around us was not designed with wheelchair users in mind. What blows my mind is the very loose use of the terms “handicap accessible” and “wheelchair accessible”. 

Handicap Accessible vs Wheelchair Accessible?

Let me start by clarifying the difference between “handicap accessible” and “wheelchair accessible” according to our personal experience. 

While they may have some qualifications that cross over, we have learned over the years that they are very different things. I believe that when an establishment says they are “handicap accessible” most often that means they are meeting the minimum ADA requirements, and that may very well be true. It generally means there are no stairs or if there are stairs there is also a ramp available, wide doorway, grab bars near toilets and in showers or tubs, and in the case of parking it means the parking spot is near the front of the building and the parking space surface is flat. 

Handicap implies there is some type of mobility impairment but most often is used to refer to people who are upright and mobile but need assistance to walk with a cane or walker or at the very least a railway on a ramp. However, all “handicap accessible” locations are NOT necessarily wheelchair accessible.

Accessibility for a wheelchair doesn’t just mean a wheelchair can roll through any given area (we have seen rentals ads online with the wheelchair symbol checked and, in the photos, they show steps to get into the front door!). Wheelchair accessible means there are ramps, wide door openings and better yet doors that open with a push-button, tables that can fit a wheelchair under them with no crossbar for a base*, bathroom doors that can easily be pushed/pulled open by someone in a wheelchair, bathroom stalls wide enough for a wheelchair user, sinks that a wheelchair user can get under while also reaching the soap and paper towel holders in reach. 

Wheelchair Accessible Tables

*The photo on the left is labeled with a wheelchair sign and says accessible but it is NOT accessible for someone in a wheelchair. The photo on the right is my husband trying to have dinner with me at a restaurant with this type of table.  I hope you can all see why is it NOT accessible. He has to sit with about a 12” gap between him and his plate which is just not right. 

Handicap accessible

Here is a picture of a table that is actually perfect for any wheelchair user.  The bases run perpendicular to the table length on each end allowing plenty of room for a wheelchair user to roll completely underneath. I have also included the link to where you can buy this table in case you are a restaurant owner or are just interested in having a table like this.  It could also work as a desk for a wheelchair user.

Wheelchair accessible

Photo courtesy of Webstaurantstore.Com

Wheelchair Accessible Hotel Rooms

In a hotel room, wheelchair accessible should mean there is no solid base around the bed. So wheelchairs can get right next to the mattress to transfer.  Many hotels have a solid wood frame around the base of the bed which forces wheelchairs to be about 2 to 3 inches away from the mattress. This added distance makes more strain on the person transferring and can make a fall more likely. A wheelchair-accessible hotel room should mean that the bathroom is accessible with grab bars around the toilet and space on each side of the toilet for a caregiver to assist if necessary. 

Wheelchair accessible bathrooms must have a shower that can be rolled into without a step and certainly not a tub. The shower should be equipped with grab bars for balance and help to transfer into a shower chair. It should also have an adjustable height handheld shower head with a nozzle that is accessible. The shower curtain should come nearly to the ground with no space for water to spray and flood the bathroom floor. There should be a sink that a wheelchair user can get under to wash their hands and brush their teeth. 

The placement of the door is important as well. Laminate or tile floor is also ideal because it makes moving around the room easier in a wheelchair. We have unfortunately experienced many hotel rooms claiming to be “wheelchair accessible” that failed in one or several of these areas.

Wheelchair Accessible Travel

Airplane travel is by far the least accessible means of travel we have experienced.  We have successfully traveled on trains, buses, and shuttles that have great wheelchair accessibility and allow the wheelchair user to remain in their own wheelchair while traveling.  However, air travel requires the person in a wheelchair to transfer into a seat on the airplane. Some wheelchair users are able to do this relatively easily with no assistance, however, for people like my husband, it is quite a process. 

The Dreaded Aisle Chair

First, we have to transfer him from his wheelchair to a tiny aisle chair. This takes two airline employees to each get under one arm to lift and me to move his legs. Once he is in the aisle chair the airline employees use Velcro straps to secure his legs and arms.  Then they wheel him onto the plane and line him up to the aisle seat in the second row.

The first row would be more ideal as it has better legroom. But there are no lap trays on some planes in the first row and others have trays that fold out from the armrest. Those won’t work for him because he has to sit on his Roho cushion in order to keep his skin safe during the flight (which is one of the most concerning factors for people with paralysis or extreme immobility while flying). The Roho cushion causes him to sit about 3 inches higher making the fold-out tray impossible. 

The Roho Pictured here can be purchased by clicking here

He then has to transfer from the aisle chair into the seat with his Roho cushion already in place.  Then I get his legs placed in comfortable places and he is literally stuck there for hours. That can be a lot of time sitting in one place with no freedom to move around.

Storing a Wheelchair on a Plane

The other big concern with airline travel is the storage of a wheelchair under the airplane. The crew doesn’t always know the proper way to handle a wheelchair. Frequently we have landed only to find out they damaged it in transit.  

A Better Option

Airlines would benefit in many ways if they would make the front row of “coach” accessible for wheelchair users to ride in their chairs. If they simply removed the aisle chair and the seat next to it they could create a space large enough to accommodate even a large power chair and still leave the window seat for a caregiver.  While they would give up two physical seats on each side of the aisle, they would really only lose sales for one seat on each side if both of the wheelchair spots were purchased.

Even if they only made one wheelchair spot on every airplane, they would only lose one ticket for one seat. This would make more people in wheelchairs willing and able to fly thus increasing ticket sales. It would also reduce the amount of time spent preboarding people in wheelchairs. And reduce the number of claims made against the airline for damaged wheelchairs.  Honestly, I think it is a no brainer. 

Check out more information about the advocacy group All Wheels Up by clicking here.  

Help Change Accessible Travel

Please sign the petition to push the Federal Aviation Association to require airlines to provide designated wheelchair-accessible spaces on every commercial aircraft, which will allow passengers to remain safely seated in their personal wheelchairs.

My hope in writing this blog post is to bring some awareness to people that are not in wheelchairs. I don’t get angry at people for not knowing. I didn’t know or understand before my husband was injured either. However, I think we need to raise more awareness and be willing to speak up for wheelchair users’ rights. 

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Gifts for a Paralyzed Person

Gifts for a Paralyzed Person

What are gifts for a paralyzed person? A question I get every year when it is close to my husband’s birthday or Christmas is “what should we get for Bill?” This can be a difficult question but there are absolutely some do’s and don’ts when it comes to purchasing an appropriate gift for someone in a wheelchair.  If you are going to take the time to get a gift, it is important to make sure you are getting something that person can actually use.

The last thing you want to do is burden that person with the task of returning an unwanted or non-useful item. Chances are good they won’t be able to return it themselves which means you create another task for their caregiver to do.  This can all be avoided with some consideration before you start shopping.

The first thing you can do of course is ask their wife/husband, close family or their caregiver.  The people who spend the most time with them will have the best insights into the likes and dislikes of the person in a wheelchair for whom you are shopping. These are the people who can also help you eliminate some things based on their knowledge of what would and would not be useful.  For instance, my husband has limited hand function so purchasing him a fishing pole that he is not able to hold would not be a good gift.

Another way of coming up with a gift to think about things you know that person likes.  Are they a sports fan? Getting them a t-shirt or baseball hat with their favorite team’s logo or a sticker for their car or even their wheelchair.  Are they a Disney fan? Maybe a gift with their favorite character would be fun. Are they a fan of superhero movies? A fun gift basket themed to something they like would be a great gift.  Do they like to eat out at certain places?

A gift card to their favorite restaurant might be fun. I know for my husband; he tends to stick to a few restaurants that he really likes and where he knows they have tables that will work for him.  Getting him a gift card to a restaurant where he is unable to get under the table would be a waste of money so it is always great when people ask me first before buying.

Something else to consider when looking for a gift for someone who is in a wheelchair is an experience.  Being in a wheelchair often presents a huge obstacle for that person to experience things that able-bodied people do without even having to think about it.  If you are able to create an experience by making all the necessary arrangements, you just might have yourself a “that was the best gift I ever received” exclamation heading your way.  Here are the things to consider when planning an experience for someone in a wheelchair:

  1. Pick an experience that you know the person will love:  a sporting event, concert, wine tasting, beer tasting, dinner and a movie, bowling, sky-diving, a cruise, theme park visit, etc. 
  2. Make sure to arrange for transportation to and from the event, especially if the person in a wheelchair is not able to drive.  If you are hiring car service and you require a lift for the person to remain in the wheelchair, be sure to state that clearly and confirm your reservation several times.  Every city is different and some have many accessible vehicles and some have none. Sometimes the best option is to rent a wheelchair accessible van if your experience will be several days long.
  3. Confirm with the venue(s) that they have wheelchair accessible parking, seating and restrooms (and please say “wheelchair accessible” and not “handicap accessible” as they are very different.)
  4. Consider the weather and temperature of the venue, especially if it is outside.  Many people in a wheelchair have sensitivities to the hot and cold temperatures. Also, if it were to rain, be sure you are prepared to offer a large umbrella to keep them dry.
  5. Make sure to plan the day with plenty of breaks for restroom use, water and rest.
  6. Do everything you can to make sure the person you have purchased the experience for feels pampered and cared for, this will make the gift even more meaningful.
  7. Have fun!  
Gifts for a paralyzed person

Clothes are another great gift, especially for men who don’t really like to shop for themselves.  I tend to shop online a lot because I can look for exactly what my hubby wants or what I know he would like.  Finding clothes that fit and work well for a person in a wheelchair can be a challenge but once you know a particular size, style or brand you can shop easily online. 

Getting a jersey or something special personalized is also a great idea, just be sure to allow enough time to order and have it delivered. There is nothing worse than having to wrap a paper with a picture of the item you ordered printed on it instead of the item…not that I have ever done that personally, I am just sharing the experience of a friend. 

If you are anything like me, you enjoy finding the perfect gift and seeing the reaction of the person receiving the gift.  I know finding the perfect gift for someone in a wheelchair can be challenging, but there are a lot of great gifts out there if you just take the time to figure out what would work best.  

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Family Caregivers are Extremely Important

What Caregivers do

Many of us who are caregivers for someone with paralysis are also family members.  In my case, I am the caregiver for my husband. As caregivers who are also family, we have a unique opportunity to assist our loved ones in situations where a hired caregiver might not have the privilege to do so.  

If you are a caregiver who is also a family member, chances are pretty good that you were not a caregiver before your loved one was injured.  Most of us learn about caregiving as it directly applies to our loved one which means we become experts in their care. If any of you have ever been with your loved one while they were in the hospital after their initial paralysis event, you know that being with them while they are in the hospital is crucial.  

Doctors and nurses are experts at their job (for the most part) but they are by no means experts at dealing with your loved one’s specific paralysis and/or the great number of issues that come with that diagnosis.  Early on I would trust medical staff 100% with my husband when he was in their care. Starting with inpatient rehab and continuing on to out patient rehab, neurologist, urologists, x-ray lab techs, etc. However, it didn’t take long before I started to realize that I was taking way too much for granted in assuming that all medical staff understood how to care for someone that is paralyzed from the chest down.  

The turning point for me was the day I took my husband for an x-ray of his knee. The x-ray tech that came out to get him assured me that they could handle everything and I could just stay in the waiting room. Big mistake! This well-meaning tech had no idea what “paralyzed” meant. He figured my husband could bear weight and just need help making the turn from wheelchair to x-ray table. He nearly dropped my husband and ending up injuring his injured knee worse than when he got there.  That day was a turning point for me. I will now no longer allow him to go through any medical procedure without me by his side. I get some push back at times but usually more from the “paper pushers” than the actual doctors and nurses.

My husband was recently in the hospital for 4 days undergoing some elective surgeries that make life a little easier for both of us.  I was with him from the moment he checked in. The first stop after that was to get him changed into a gown.

The paper pusher didn’t want to let me go with him because no family was allowed past that point.  I smiled sweetly and told her I would be accompanying my husband every step of the way until surgery for his safety and my peace of mind.  She wasn’t happy with that reasoning but she at least stopped trying to get me to leave him and go to the waiting room.

I was with him for preop and help to get him turned on his side when pre-op was taking too long and his back side needed pressure relief.  My number one goal was to make sure he did not develop a pressure sore during this stay (FYI…my efforts were successful!). I asked every nurse and doctor I spoke with to make sure he was on a pressure changing air mattress as soon as he left surgery (and he was).  

I asked the surgeon to get me before my husband was taken to his recovery room and the doctor made sure that happened.  I slept on the lovely bed provided in the hospital room every night. I was there to turn him on his side and get his pillows positioned just right before bed.  I was there to help him get his teeth brushed while he was in bed. I was also there to make sure he was able to eat all of the “food” he was given post op. There is no way a single nurse in charge of 6 or so other patients could have provided the level of care and attention my husband needed while recovering from his surgery.

The nurses were more than happy to have me there and they were all truly appreciative of all I did to help my husband.  My husband was truly appreciative that he felt as comfortable as possible while recovering in the hospital and my nerves were calm because I didn’t have to worry about anything going wrong.

If you are a caregiver that is also a family member, you are an amazing blessing to your loved one and invaluable to their safety and care on a daily basis.  I hope you feel appreciated and loved for all that you do, and if you don’t, please hear me when I say, “You are an amazing person to selflessly serve your loved one at the sacrifice of your own comfort and preferences most of the time. Keep up the good work and know that what you are doing makes a difference and it is noticed…if not by any man, by God above.”  

 “Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven.” Matthew 5:16

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Staying on top of supplies

Why supplies are important

There is nothing worse than going into your supply closet for a particular item only to discover you have run out.  Even worse is if it late at night, early in the morning or it’s an item that must be ordered online and you must wait for it to be shipped to you.  Unfortunately, I have not always been a good planner and I tend to be a little disorganized. However, after running out of items and scrambling to make something work in the past, I have taught myself to be much better about staying on top of ordering the necessary supplies.  

My husband has an SP tube which requires catheters, insertion trays, bedside and leg bags.  We have a company that handles all of those supplies and they email me every month letting me know my order is about due and do I need to make any changes.  When I get that email, if I am unsure of my current supplies, I check them before responding. I absolutely love that they email me and I don’t have to try to remember to place my order.  If you are working with a medical supply company that doesn’t call or email you a reminder, you might as if they can set that up for you.

My husband also recently had a colostomy surgery and now requires all the supplies for that.  We use a different medical supply company for those supplies and they call me when my order is due.  I simply call them back and use the automated reorder system to place the order. Again, I don’t have to remember to order because they call and remind me.

However, there are some supplies, as I am sure you all know quite well, that insurance doesn’t pay for.  I order those from Allegro Medical which has always provided great products, prices and shipping. I make sure that when I order from them, I get enough to cover our needs for at least 6 months and that also helps me reach the required amount for free shipping.  

When the boxes of supplies arrive, I try to unpack and put them away as soon as I have time.  As I put them on their designated shelfs (I have a small walk in closet with one full section of shelves dedicated to his supplies). As I add new supplies, I make sure to organize what is already there and make note of any other products that might be running low.  If I see an item that I know we will need to reorder soon, I add it to a list on my phone. That way, when I am ready to place an order, I simply open up the Medical Supplies list on my phone and order the necessary items.

I don’t know about your brain, but my 43-year-old brain struggles to remember things.  So, if I don’t write down what I will need to order in the very moment that I notice it, I will most likely forget to order it and that never ends well.  I have created all kinds of lists for my sanity on my iPhone. I use my phone because too many times I have made a written list only to get to a store and realize my list is still sitting on the counter at home.  I use the Notes app and simply create folders, and then create lists that fit with that folder. For example, I have a folder labeled “Shopping Lists”. When I click on that folder, I have a “note” for each store that I regularly shop at or order from.  When I realize I am out of toothpaste for instance, I go to my Walmart list and type in toothpaste. That way, when I place my Walmart pick up order, all I have to do is look at my list and order using the app…everything can be done from my phone!! ***WARNING: RABBIT TRAIL*** If you don’t have Walmart pick up in your area, I am so sorry, but if you do…it is awesome.  I can do all my grocery shopping online, pay and then schedule a time to pick up. There is NO extra charge!! Then when I arrive at the store, they bring my groceries to my car, put them into my bags (we live in CA) and load them into my vehicle while I sit in the comfort of my car!! This amazing shopping option also makes it possible for my husband to grocery shop if I am sick.  He can simply drive up and have them load the groceries into his van, he never has to get out or even take one of our kids with him to push the cart. I know there are grocery delivery options out there and those are great too…but they cost more money and I know many of us are budget conscious so I just wanted to share this awesome Walmart feature if you didn’t already know about it.  Here is a link to save $10 off your first Grocery Pick Up order:

I know some people like to keep actual inventory lists, but I will admit to you that I am just not that organized nor do I have the time or energy to stay on top of that.  However, if you have outside caregivers you might consider keeping an inventory since you may not be the person using certain items and therefore might be unaware when they are low or out of stock.

When placing orders online, I always try to think ahead over the next 6 months to be sure I have ordered enough products.  It is good to think about any trips you might be taking or special circumstances that might require ordering more of certain products.

Be sure you compare prices between different online medical supply companies because some are better than others and some will offer to beat any competitors pricing! I have also found items at times on eBay or amazon, I am always on the look out for a way to save my family money.  

Also, I want to encourage you to check out our Free E-Books by clicking the images below:

Overcoming Grief After Paralysis

Finding ways to live with Grief after paralysis

Grief is a real part of living with paralysis which means as a caregiver it’s a real part of your life as well so, especially if you are a spouse, parent or someone close the person you are caring for.  There was something that happened in each person’s life that resulted in paralysis. That loss might have occurred at birth if a child was born with some type of disease or birth defect that caused paralysis.  This would create a loss of the hopes and dreams a parent has for their child to live a normal and healthy life. Maybe the loss was a result of a car accident, a bicycling accident, medical error or a stroke.    This type of loss shatters the vision and expectation that someone had for their future. It changes just about everything. We must remember that the person we are caring for will always be mourning this loss no matter how it occurred, and we ourselves may be mourning the loss as well.

I am not going to write about the stages of grief and what to expect or how to deal with those stages.  I am not a doctor or therapist, I am a wife who is also a caregiver and I will share with you how we have dealt with grief on our journey in hopes that is might encourage you on your journey.

It’s hard to say when grief really started to sink in for me, but I could see it almost immediately for my husband Bill.  One morning he got up, fully able bodied and healthy, ate breakfast and played with the kids for a little bit before getting ready to leave for a monthly mountain biking adventure with his friends.  I think it was around 7:30am when he left that morning. Neither of us could have possible prepared ourselves for the drastic change our lives would take in less than 3 hours. I got the phone call every wife dreads.  He said, “honey, I got hurt but I am okay. I just can’t feel my legs.” All that I could say was “what are you talking about?” over and over again. After I hung up the phone I fell to my knees and called my kiddos to come pray with me.  They were already worried because mommy was crying. There, on the floor of our kitchen, I held my 5 children (3 biological and 2 foster) as closely as I could and prayed…begged really, for God to heal my husband and for him to be able to feel his legs.

When I arrived at the ER where he had been life flighted to about an hour earlier, I was ushered into the room where he was laying on a gurney.  They needed my permission and signature to say it was okay to operate on him, to decompress his spine. I just kept asking him if this was okay and did he really want this surgery?  A little back story…no pun intended. Bill was a practicing chiropractor when he was injured. He had told me countless stories about failed back surgeries and how he would strongly recommend his patients exhaust every natural option before turning to surgery.  So, to hear him say he wanted to have back/neck surgery was a surprise to me. You see, he understood the severity of his injury in a way most people probably don’t because he had studied the human spine for 3 ½ years in chiropractic school. Which is why when they told him he had a burst C7 vertebra that was compressing his spinal cord, he knew surgery was necessary.

I think Bill’s grief started when he woke up from surgery and his first night in the ICU was like a living hell.  He called over and over for a nurse and no one would respond. He couldn’t use his hands, couldn’t move his body from his chest down and he was in a neck brace that wouldn’t allow him to move his neck or head.  He was trapped in a hospital bed with machines all around him beeping and no one coming to help him. Every day he spent in the ICU was harder than the day before it, he was sinking into a deep sadness over his loss of ability and because he didn’t feel well.  He had always been a very healthy person, he didn’t even take Tylenol or Ibuprofen for pain. Having his body pumped full of all kinds of meds was very hard for him. They even tried putting him on anti-depressants for a time but as soon as he was well enough to start asking what drugs they had him on, he started asking for them to be lowered and taken away.

Once Bill finally made it to the rehab hospital there was a different kind of grief and mourning of the loss of his ability that started.  Now he had daily therapy that required him to get out of bed and into a wheelchair. The sheer fact that he couldn’t do any of it on his own was very hard for him.  He was in mourning but trying to do all he could to help his body heal physically. He developed a pressure ulcer in the ICU that opened up the day he was being transferred from the ICU to the rehab hospital.  We later found out the hospital should have had him on a “dolphin bed” that changes pressure every 5 minutes to protect his skin. The ICU hospital of course claims that they met the minimum requirement by providing a standard hospital bed mattress.  Don’t even get me started on that one. But dealing with a pressure sore for the first 10 months after he was injured also created some deep sadness and depression.

The first-year post injury was hands down the hardest for both of us, although year 2 wasn’t amazingly better, it did start to get a little easier.  Once my hubby dealt with his new reality, got his pressure sore to heal and was able to start doing active therapy several times a week, his mental and emotional wellness started to heal.  It was a very slow process but he kept moving forward little by little. He had to come to terms with his injury and the loss of his previous ability. He then had to accept the new life and remaining ability that he had and learn to be thankful for those things.  Only by God’s grace was he able to do any of it. On his own, he would have given up, medicated himself and waited to die. But because he knew God had a purpose for everything and everyone, he knew he couldn’t give up. My husband is an amazing man of God and he fully takes God’s command to provide for his wife and family to heart.  

As I mentioned at the beginning of this blog post, my husband was a practicing chiropractor when he was injured.  He was very passionate about taking care of his patients and helping them to get well. In fact, one of the first things he said when he woke up from surgery late Saturday evening was “I need to get back to the office to take care of my patients on Monday”.  As the first year passed, he realized that he would no longer be able to practice chiropractic and the interim doctor we hired was able to keep the doors open, but his thriving business was barely above the red. We kept the practice going a good year longer than we should have because he just was not ready to let it go.  When we finally shut the doors on Breath of Life Chiropractic it was devastating for my husband. Even though he knew we couldn’t afford to keep it going, it was his dream and closing the doors was just another reminder of all he had lost when he was injured.

My husband grieved the loss of his practice…but he never gave up hope.  He knew he needed to find a new purpose, a new way to make a living but he didn’t know what he could possibly do.  (Here is a blog post he wrote about it.)   A very good friend of his that is also a chiropractor asked my hubby to write some blog posts for him since he didn’t have the time and he knew Bill would be able to write a great article from a doctor’s point of view.  What started from writing blog posts for one friend, over the past 5 years, has become a highly successful online marketing company. Upper Cervical Marketing works with chiropractors and helps them get connected with sick and suffering patients that need help.  My amazing husband taught himself everything he now knows about online marketing through relentless hard work and unbelievable determination.

Overcoming grief is a process that can’t be rushed and can sometimes feel overwhelming.   As my husband’s caregiver I have had many emotional ups and downs over the past 7 ½ years.  There are days when the harsh realities that come with a life of paralysis consume us. God has been gracious to us in that most of the time, one of us is on a mountain when the other is in a valley and we are able to help lift each other up.  There is no harm or shame in having down days, feeling sad, crying and questioning why. However, it is vital that we choose not to stay down for too long. My hubby and I lean heavily on our faith in Jesus to pull us out of the pit of despair.  We trust that God has a purpose for our lives and we know that if we stay in the pit of despair, which is ultimately where the enemy of our souls would like us to stay, then God can’t use us for His plan and purpose. We have chosen joy in the midst of trials and it has made all the difference:

“My brothers and sisters, you will have many kinds of trouble. But this gives you a reason to be very happy.  You know that when your faith is tested, you learn to be patient in suffering.  If you let that patience work in you, the end result will be good. You will be mature and complete. You will be all that God wants you to be.” James 1:2-4

If you or the person you are caring for feels sad and depressed and feel you are unable to pull yourself out, I would encourage you to reach out for help.  Seek help from friends and family, find a local church to connect with where you can receive counsel and encouragement or find a reputable grief counselor that can help you deal with your grief and work through your emotions until you are able to choose joy. Everyone handles it a little differently but there is hope for you to overcome your grief and realize new dreams for your life after paralysis.

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Learn How to Ask for Help

Should a full-time sole caregiver ever ask for help?  The answer to that question is 100% yes. So much yes! I can’t really express enough how important it is to ask for help.  Asking for help when you are the sole caregiver for someone is one of the best ways to preserve your sanity. When you take on the often-unexpected role of taking care of a family member or loved one you are presented with a life changing challenge that usually doesn’t come with much preparation.  Sure, you will usually get training from the therapists and nurses at the rehabilitation hospital before the person you care for comes home. That training is extremely valuable and essential for you to know in order to be a great caregiver. However, what they don’t teach you is how to preserve your own sanity as a full-time sole caregiver, which I believe happens when you learn to ask for and receive help.   

The Lord started teaching me how to ask for help several months before my husband was injured.  We were a foster family through Olive Crest and we had two sweet kiddos in our care starting in August of 2011, just 3 months before my husband had his mountain biking accident.  Those 3 months challenged me like I had never been challenged before. These two precious kiddos had been through some pretty tough stuff.  We had 3 children of our own ages 7 ½, 5, and 3 ½ and our foster kiddos were a (boy) 18 months old and a (girl) just about to turn 5. The toddler was a little behind but the girl was pretty much at the same maturity level as our 3 ½ year old.  I was expected to get them to doctors visits, therapy appointments and visits with their birth father 2 to 3 times per week which sometimes required a 45-minute drive each way. To say I was overwhelmed was an understatement. For the first month I powered through like “Super Mom” determined to do it all on my own.  But as we entered month two, I was starting to feel worn out and it was taking a toll on my sanity. I found myself crying out to God in the quiet of an empty van (on the rare occasion that I actually found myself alone) and even sometimes into my pillow at night. I didn’t want to admit I needed help because I thought it meant I was failing.  But our awesome case worker at Olive Crest encouraged me to reach out to my friends and family and ask for help. So finally, I swallowed my pride and did just that. And guess what? It was like a weight was lifted from my shoulders. I received so many offers to help. Some people offered to watch my 3 kiddos while I took the other two to meet with their birth father.  Some offered meals to take one more thing off my plate a few days a week. Some just sent messages of encouragement and prayers which helped tremendously. I learned that it was okay to ask for help and when I finally did, I was blessed beyond what I imagined.

By the third month we were into a pretty good routine with all 5 kids.  Olive Crest had reached out and asked us if we’d pray about the possibility of adopting the kiddos in our care.  We prayed about it but really didn’t feel God was calling us to adopt them. We loved them dearly but we had peace knowing God had a different plan for them.  That was literally 2 weeks before my husband was injured. God knew.

Life was thrown into chaos for us on November 26, 2011.  Friends and family surrounded me and the kids with all kinds of offers to help, and I was fully prepared and able to accept that help without any hesitation because God had already been preparing me in the previous months as I asked for and accepted help with our foster kiddos. *

I was able to boldly ask for help when Bill pleaded with me to never let him be alone in the ICU after the first night was pretty much a nightmare for him.  I had to ask people to volunteer to sit in a hospital room at all hours of the night so I could go home see our children and get some sleep. I spent most of the day with him in the ICU but with no bed to sleep in there, I had to drive 45 minutes home each night.  It was important for me to be able to see our children who missed both of us, and get some sleep so I could get up the next morning and do it all again. I had to find people to help watch my children during the day while I was at the hospital, get the oldest two back and forth from school, and make sure they got their homeschool work done (we do school through a charter that has 2 school days and 3 home school days each week).  I was amazed at how many people wanted to help and actually did. I still can’t wrap my head around how many people sat up at night with Bill while he was in the ICU for 31 days. Even on Christmas Eve someone was there because I asked.

At the time of his accident, we lived in a rental home.  I needed to figure out a way to get him into our home and into our shower once he was home.  I asked for help and friends came out and built temporary wooden ramps at our front door and out our back door that I was able to get Bill up and down. I got the landlord to approve us making some modifications to the shower and someone who heard our story but didn’t even know us personally offered to do the work free of charge.  I was blown away at how much help we received. I also had to figure out a way to get Bill home in a wheelchair. Someone from our church that heard our story offered her wheelchair accessible van for a few weeks. When a few weeks had passed and she needed the van back because she was planning to sell it, she knew that would leave us without transportation.  She had a Bruno Turny** seat in her other vehicle that she offered to let us have. All we had to do was pay to have it removed from her car and installed in our van. To buy a seat brand new would have been over $7,000 and we paid less than $1,000 for the labor to remove and install the seat. Such an amazing gift at a time when finances were really a huge question for us.

Once Bill got home from the hospital, I needed different kinds of help.    I was so happy to have him back home under our roof again and the kids were over the moon to be able to see Daddy again every day.  But being the sole caregiver for hubby and parenting 3 kids, I was wiped out. I continued to ask for help with meals, childcare for the kids while I took Bill to therapy, and even help stretching his legs.  

We have come a long way in the past 7 years since he came home from the hospital.  I have had to ask for help on and off many times. The greatest sources of help come from my Mom who blesses us weekly with her help and our church family.  I can’t stress enough the role our church family has played in our lives since Bill was injured, actually since we had our foster kiddos. We saw the hands and feet of Christ in action as people from our church, some that didn’t even know us personally, stepped up and answered the call to help.

Now we are in a much different place mentally, emotionally and financially.  We are excited to now be able to extend help to others by bringing meals, helping with financial support and sharing our story to encourage and bring hope to others.  My husband’s spinal cord injury was a life-changing event in our lives, but because we learned the power of asking for help and graciously receiving it, we have been able to persevere and come out stronger on the other side.  

I would like to encourage you not to be afraid to ask for help and when you do, be specific about what you need.  If someone offers to help you, give them something they can do, even if it seems trivial. So many times, when tragedy strikes, people want to help but they literally don’t know what to do.  They will say things like “let me know if I can help” or “if you need anything let me know” but often we don’t give them an answer because…well it’s usually pride. At least that was the case for me.  I didn’t want to admit I needed help and I certainly didn’t want to inconvenience anyone. The truth is people really DO want to help if they are offering, but if they offer several times and you don’t give them a way to help, they will stop asking.  Letting others help is also a way for them to check in with you to see how the injured person is doing. I know for me, I struggle to want to visit someone in the hospital or even when they come home because I am terrified of causing them pain by talking too much or keeping them from resting or just having awkward silence.  I worry that their injuries will be too much for me to look at or that they will act different due to injuries or medication. It just seems uncomfortable to visit just to say hello, but when they ask me to bring a meal it is an easy way for me to show I care and gives me a reason to visit with no pressure.

There are many ways you can ask for help. Start with the people you can remember saying “let me know if you need help with anything”!  It may seem obvious but sometimes we overlook these offers. You can ask a friend or family member to create a meal sign up for you during a particularly difficult season or hospitalization.  There are tons of free websites that make this very easy to set up and manage. These are some that I have used:  and  Once the link is created it can be shared via Facebook, email, or text with anyone that might be able to help.  Send out an SOS message via text, email or Facebook to friends and family asking for help, and when anyone offers, give them a specific way to help like: “I need toothpaste and toilet paper but I can’t get to the store, can you please help me?” Or, “I have a dentist appointment on Tuesday at 10am and I need someone to stay with (insert name of the person you care for) for two hours.  I will show you everything you will need to know. Can you help me?” Obviously not everyone is going to be able to help every time and you certainly don’t want to over ask, but those times when you truly need help, don’t be afraid to ask. And don’t let one person saying no stop you from asking another person. If you belong to a church, I would highly recommend reaching out to them, the church is there to offer support and help.  If you aren’t part of a church body, try to find a church in your area that you can connect with in some way. Many churches will even send a pastor or church member out to visit with you which would be a great way to may a connection and ask if they have any other services that you could benefit from. Join a Bible study or small group to get to know others even better. We have been blessed by friends from both of these kinds of groups that are truly closer to us than some of our own family members.

The role of sole caregiver is challenging, rewarding, frustrating and exhausting.  Don’t be afraid to reach out and ask for some help. I will caution you to not be “overly needy”.  Ask for help when you really need it, not for every little thing that comes up, or people will get tired of helping and you will end up burning bridges.  You might make a list of the people who have helped and the dates they helped to be sure you leave time in between asking. Be humble when you ask for help and graciously thankful when you receive it, these will go a long way towards making others want to help you again.  

*{Olive Crest knew that our foster kiddos would need an adoptive home so they had already been searching for one.  They moved them to a respite care home (temporary care by a certified foster family) and within two weeks they had found a couple that was a good match for the kiddos.  I am happy to tell you the kiddos were adopted by that couple and we are blessed to keep in touch with them and have even visited them once in Maryland while on vacation.}

**We currently have a Turny seat that we removed from my van and are not planning to use.  It has been well used, but has a lot of life in it still. We’d love to bless someone with the seat.  All we ask is that you arrange to have it picked up from our home. It is extremely heavy, like 200 lbs.  If you live in the San Diego area, please send us a message and let us know you are interested.

If you would like to receive these types of caregiver blogs when they are released each month you can grab it here.

Also, I want to encourage you to check out our Free E-Books by clicking the images below:

Why Routines Are Important

Since my husband’s injury in 2011, one of the ways we have been able to thrive is by establishing and keeping routines.  It is amazing to me how important daily routines are when caring for someone with a spinal cord injury. You are dealing with a body that has lost much of its ability to do “normal” stuff.  Suddenly you are figuring out routines for everyday tasks that you never gave a second thought to before the injury.

One of the best things for your sanity as a caregiver is creating a routine that works for both you and the person you are caring for.  During the initial adjustment stage of figuring out life at home with paralysis, a lot of your day may feel like trial and error and that is perfectly okay.  This role of caregiver is most likely NOT something you would have chosen, rather it has chosen you and now you have to figure out how to make it work. Give yourself and the person you are caring for a lot of grace during this process and every day really.  It takes time to figure out your new normal and even once you have an established routine, life will continue to throw curve balls that force you to make some tweaks and adjustments to your routine. Learn to laugh a lot in the midst of these routines and it will help make them more endurable if not enjoyable even.

I remember when my husband first came home after spending 3 months combined in the ICU and then a rehabilitation hospital.  I was overjoyed to finally have him home again under the same roof with me and our three children. However, that feeling went very quickly from overjoyed to overwhelmed.  It was just so much to take on and figure out. Sure, they train you in the hospital to safely transfer your loved one, get them dressed, and use a catheter. In fact, for many years we have kept some of the same routines we learned in the rehabilitation hospital 7 years ago because it was easier to just keep doing what they taught us rather than trying to figure out something new.  Honestly, at the time I had no confidence in my knowledge to make any major changes from what they taught us.

In the hospital, the nurses, doctors and staff have protocols that they must follow.  However, those protocols don’t take into consideration each patient as an individual. It may be helpful when you first get home to use the routine they help your loved one establish while in the hospital, however it is important to know that you can make changes that make sense for your specific situation.  Within the last year I have recently joined some Facebook support groups for SCI Caregivers. Some are specific to wives that are also caregivers ( ) but some are simply for any caregivers of a loved one with an SCI ( and ).  I have learned so much from these groups even though we were 6 years post injury when I joined.  I wish I had joined these groups years earlier, actually I wish I was part of one of these groups while my hubby was still in the ICU and I could have asked questions from the start but honestly the idea just hadn’t crossed my mind.  If you are new to the SCI caregiving world, please take my advice and join some support groups. These are great places to ask questions that ONLY people living in the reality of the SCI world will get. And not only do they understand these questions, they are happy to offer advice without judgement!  These groups are places you can vent about frustrations, share about victories and build relationships with people who know EXACTLY what you are going through. You will get ideas about how you can change up your routine just by reading posts and engaging in conversations. Trust me when I say, in the SCI world, you never stop learning because just when you think you have it all figured out some crazy symptom or situation will pop-up that will boggle your mind.  The people in these groups will be there to sound off to and they will encourage you beyond what you realized was even possible.

It seems as though it wouldn’t make sense to just write about the importance of routines without giving you a real-life example of what our daily routine looks like.  Because this blog is read by others outside the SCI world, I will not get too specific about some details, however those support groups I was telling you about are the kinds of places where you can get “embarrassingly” personal and you will not feel embarrassed at all by the responses you get.  Here is a basic overview of what our daily routine has looked like over the past several years: (just for an ability reference to anyone new to our story, hubby has a C7 incomplete SCI with patchy sensation but no movement below the nipple line. Hands are affected but his right hand has more function than his left.  He affectionately calls them his claw and a half!)

Weekday: (school day for kids/work day for hubby)

6:30am Rise and Shine (we start our day with hubby praying for us before my feet hit the floor)

6:35am Pull pillows out from all around hubby and get him turned onto his back; he sits his Craftmatic adjustable bed up all the way up

6:45am I head to the kitchen to get his protein smoothie and two pieces of sausage ready (this is the same breakfast hubby has every day…he is big on routine!)

6:50am First kiddo goes into our room to have Bible study/prayer time with Dad.  

7am Second kiddo has Bible study/prayer time with Dad

7:10am Third kiddo has Bible study/prayer time with Dad and I bring his breakfast to him on a lap tray to eat in bed along with his daily supplements (omega 3 fish oils, cranberry, multi-vit, calcium and probiotic)

7:20am Me and the kids head out the door to get everyone to school. Hubby stays in bed eating breakfast, taking supplements and reading his daily Bible devotion and/or preparing for our weekly home fellowship that he teaches

8:15am I am back home to get hubby up and ready for the day.  We start our morning routine which consists of getting in the shower chair, brushing teeth, bowel program (this varies widely for every person living with SCI and you can gain great insight from a support group on this subject), a bidet type experience in the shower, back into bed, dressed and up into the wheelchair for the day.  At our most efficient this process takes 45 minutes total. There have been days that have taken longer and some days that we set records and finished in 35 minutes!!! However, I have read stories from some caregivers that their morning routine can take several hours. The time for each person is greatly impacted by the level of ability of the person you are caring for.  The more they can do on their own, usually, the quicker the process.

9:00am Hubby rolls to his office (we had an office built onto our house and the door is off of our room so it’s a short commute…LOL). I plug his phone in to the charger, fill up his water bottles and he is good to work.  (He was a chiropractor before he got hurt. You can read his blog post about how he figured out a way to work and provide for our family: Here. He used a Foley catheter for 4 years and now has a SP catheter.  He uses a leg bag with a flip-flo valve that he is able to drain on his own so this gives him a lot of independence and freedom once he is up in his wheelchair for the day.  

1:00pm Hubby takes his lunch break.  I make him a healthy lunch often with some raw garlic pressed over the top (this has been the key to no UTI’s for over 1 ½ years now).  He has a nice size tv in his office so he moves away from the computer and watches something that he enjoys during his lunch break. I bring his food to him and he eat on a tv tray in his office.  When he is done, he will slide his empty plate onto his lap and roll on out to the kitchen to put his plate on the counter or in the sink. He has made some pretty loud crashing noises into the sink but to date he has not broken a glass dish!

2pm Back to work

5:30pm Standing Frame Time- when he was first home and for several years after he went to therapy 2 to 3 times a week.  It was very expensive and time consuming. 3 ½ years ago we were blessed to buy a home and modify it to work for our needs.  One and a half years after that we built hubby an office to work out of so he didn’t have to work in the corner of our room anymore.  When his office was complete, we decided it would be better to spend the money we were using for therapy and buy a Easy Stand Standing Frame Glider.  He keeps it in his office facing his big tv.  Now he is able to stand up and move his legs everyday for 30 minutes to an hour (depending on his schedule) while watching his favorite sports team(s) (Lakers and Cubs) play or enjoying a show that makes him laugh.  He figured out how to get in and out on his own after he figured out how to get in and out of his modified van and learned to drive with his hands.

6:30pm Dinner with the family (on Monday nights he leaves after dinner to go to Man Up at church and on Wednesday we go to our Home Fellowship together after dinner while the kids go to Wednesday night youth group).

8pm We each pray for each of our children and put them to bed

8:30pm Some nights this is shower time but on non-shower nights he will usually stay up in his wheelchair until 9 or 9:30pm.  On shower nights he gets into bed, undressed, change out leg bag for bedside bag, transfers into shower chair, rolls in to the shower, showers (he does this part on his own after I put a clean wash cloth on the shower rack and drop the hand-held shower head down to where he can reach it), then back into bed, dressed and snuggled in for some couples TV time.  Showers usually take around 45 minutes from start to finish. Sometimes we trim fingernails and toenails after because they are soft and easy deal with after a shower.

9:30pm On non-shower nights this is about the time I help him get into bed.  Once in bed we usually watch a few shows that we enjoy. Hubby usually plays some games on his iPad to challenge his mind like Words With Friends or a digital “Poker tournament”.

11:00pm We start our bedtime routine. I bring his toothbrush, flosser, spit bowl and water cup to his bedside.  Once he’s done brushing and rinsing, he flosses while I rinse out the bowl and cup (I keep these stored in a cupboard in the bathroom.)

11:15pm I fill up his water bottles to be sure he has water during the night in case he wakes up and can’t sleep (he is usually hungry if that happens so he drinks water to curb the hunger.)

11:20pm I put on his boots to prevent foot drop then I get him turned on his side with pillows tucked behind him, in front of him and between his knees.  A few minor pulls and tucks until he is comfy and he is ready for bed.

11:30pm Lights out, hubby prayers for us, good-night kiss and the day is done.

Routines can help you celebrate all that you have accomplished on a great day and they can help you get through the really tough days because after each routine is complete you can say “okay, one more thing done”.  Some days we celebrate how quickly or efficiently a particular routine was accomplished and some days (like when either of us aren’t feeling well) routines help us get through the day knowing there is time to rest and recuperate between the routines.  We try to look back and reflect on how far we have come from the daily routines we had 7 years ago compared to where we are today. It helps us celebrate how far God has brought us and gives us hope for how much farther He will bring us in the years to come.

Also, I want to encourage you to check out our Free E-Books by clicking the images below:

The Effect of Paralysis on Multiple Sclerosis Sufferers

The good news is that multiple sclerosis is not a death sentence. The bad news is that, as the disease progresses, it can gradually affect your quality of life. We’re going to take a closer look at just one of the many debilitating symptoms of MS that crops up as the disease progresses. We will consider the effects that paralysis can have on your quality of life, but also offer comfort and hope that your life hasn’t ended simply because you can’t do everything you once did.

Research Regarding MS, Paralysis, and Quality of Life

Researchers wanted to learn what the most debilitating MS symptoms were according to patients. This is important because it allows researchers to focus the symptoms of the condition that are having the greatest impact on a person’s quality of life. The results of the study were published under the title “The disease burden of Multiple Sclerosis from the individual and population perspective: Which symptoms matter most?” Paralysis ranked number two (behind muscle rigidity), reducing patients’ quality of life by an average of 8.7 points using the EQ-5D index. What does that mean?

In short, it means that you are not the only person with MS who is experiencing the effects of paralysis. Among patients around the world, this is one of the symptoms that cause the greatest effect on how a person lives from day to day. Why is it so important that research like this is being performed?

To begin with, it is nice to realize that you are not alone in what you are coping with. If there are others, hundreds of thousands of others, who know what you are going through, then you can take comfort in knowing that people wake up and are productive every day in a similar situation to you. Plus, it can be a comfort to know that researchers are specifically targeting the primary things that are affecting your quality of life to search for better solutions.

But even with all of these positive things in mind, it can still be a daily struggle when you are in the midst of dealing with the effects of paralysis, so how can you start to get your life back?

Recognizing the Effects of Your Paralysis

The first thing you have to do is recognize the effects that your paralysis has on your life. This is not an exercise in negative thinking, but rather a part of the acceptance that you may not be able to do everything you once did, or at least not in the same way.

Take, for example, the experience of Chelsie Hill. While she became paralyzed due to a poor decision as a teenager rather a debilitating disease, she still had to learn to deal with the effects. She had to accept that she could no longer dance, at least not the way she did before. But seeing her continue to take part in the activity that she loves, despite being confined to a wheelchair, is really inspirational for others.

So I have a question for you. What did you love to do before the paralysis that you can’t do anymore? Maybe it is about finding a creative way to continue doing what you love, rather than giving it up as lost.

Finding New Ways to Express Yourself

Of course, not everyone will be able to continue enjoying the activities they did before dealing with paralysis. Maybe, like Chelsie, you once loved to dance. However, the idea of dancing in a wheelchair may not provide any enjoyment for you. Look at this as an opportunity. There may be a hundred other activities that you can love as much as dancing, but you may never have tried to find them if you could still dance. Depending on the type and degree of your paralysis, there are many different artistic forms of expression or hobbies that you can try. This may even be an opportunity to draw closer to a loved one if you need assistance in order to take part in a new hobby or activity.

The Benefits of Inspirational Stories

Having someone say, “You can do it!” is one thing. Seeing someone in a similar situation who already has done it is another. That is why many people who have become successful despite dealing with paralysis have become public speakers or in other ways reached out to help the community. If you think a person who is successfully dealing with paralysis no longer feels a sense of loss or struggles with depression simply because he or she has now become successful, think again. Loss is loss, no matter how well you cope with it. Paralysis leads to grieving, sadness, and bouts of depression no matter how well you deal with it.

But it can also lead to a greater sense of accomplishment and self-worth as you conquer your ailment and know that you are an inspiration to others by doing so.

You are not alone. Your life has meaning. You can still thrive despite dealing with paralysis. That is what this site is all about. So be sure to check the blog regularly to learn new and exciting ways that you can thrive with paralysis. We will share inspirational stories, provide suggestions for ways to grow within your new circumstances, and even offer spiritual comfort. We look forward to helping you, your family, and your caregivers to succeed.

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