Archive | Living with PPS RSS feed for this section

Wheelchair in the Kitchen…Making your Kitchen more “Wheelchair Friendly”

31 Jan

Our Daughter on her 20th Birthday

  OK, so I don’t bake a special cake for everybody’s Birthday like I used to…..I have found that my local Bakery has  really good cakes and   Costco has an especially good selection of Birthday Cakes!  I used to be known for my desserts.  For many years the cake stand in my kitchen was never empty!

I even wrote my own cookbook…a project inspired by our daughter’s  graduation from college….After I married her Dad, she would come home for weekends and at the end of every meal she would tell me that she wanted the recipe!  So, for her Graduation, I presented her with a cookbook full of ALL of my recipes!  We ended up selling over 500 of them without ever having it “really” published. I always had a few in the backpack on my scooter and my husband had them in his car.   All right, it didn’t hurt that my local newspaper  did a feature on my cooking and PPS the week before Thanksgiving…I had the whole bottom half of the first page of the Food section, complete with a picture of my beautiful Red Velvet Cake. The photographer wanted me to slice it and put 1 slice on a plate!  I was mortified!  You know how the first piece often comes out messy?  Well, it came out perfectly!  WHEW!

Sun News, November 1994 1

 These days, I still cook, and occasionally even bake a cake or pie….but I try to make it as simple as I can.  I have developed a few tricks and short cuts along the way.I will try to share some of these Short Cuts and Kitchen Tips with you today.

BE PREPARED TO MAKE SOME CHANGES!

  Some of the first changes that I made were suggestions from my friend.  We met on-line in the early 2000’s and have been great friends ever since.  She shared with me some of the (so obvious now) things that I should change in my kitchen.  She had been adapting because of the weakness of her arms for a longer time that I had.  The first thing she suggested that I should do was to get rid of my (heavy) glass measuring cups and exchange them for plastic.  On a shopping trip to the local Outlet Mall, she MADE me buy a set of 3 Dansk nesting bowls that were made of heavy-duty (but light) plastic with handles and pour spouts.  They also had rubber on the bottom to keep them from slipping while you stir.

I still have these bowls and use them more than any others that I have. She also suggested that I take advantage of the disposable aluminum casserole dishes, pie pans, etc. that are so available now.  I have to admit, that while that is a GREAT suggestion, that I haven’t fully taken her advice on that because my dear husband cleans up and washes the dishes and puts them away every day!  If I didn’t have his help in this area, I would definitely be buying and using more of the disposable baking dishes!

While visiting my friend for the first time in her home, I noticed that she had this nifty high chair on wheels.  I think its primary purpose is a bar stool, but when you have PPS, you learn to re-purpose a lot of things!  You should see her…she sits down while preparing dinner and rolls all over her kitchen!

Caron’s kitchen chair on wheels

My answer to the kitchen chair was different.  I had an island in the middle of the kitchen in the house that we were building.  I found a very comfortable chair that fits under a bar extension that I designed (pictured)  that I can rotate to attend to what I am cooking on the stove.  I chop vegetables at the bar while sitting and can easily see into pots or sit and stir or fry on the stove while sitting.  If I am in my wheelchair, I can raise my chair to bar height and use the same bar extension.  I haven’t had to cook very often (so far) from my wheelchair, TG!

Quick Tip 

Before I built my new house I learned to improvise.  One of the things I learned to do was to make a cutting surface that I could easily pull up to sit under…Here’s a picture of what I used to do….You can use a cutting board, or any kind of board that will fit across your open drawer…

This is a tray turned upside down on top of an open drawer. It makes a great place to sit and work.

I exchanged my heavy ironstone dishes for Corelle dishes.  We now use decorative plastic glasses instead of heavy glasses. I found a set of very heavy-duty (but light) stirring spoons, scrapers, etc. that do not bend. All of my dishes are on Rubbermaid organizers that make them easy for me to get without help.  They are either stored a single dish per shelf, or in some cases, on their sides on dish organizers.  All of my spices are within reach of my stove on turntables.  My pantry is also organized with everything on turntables, as is my refrigerator. I bought plastic bins that fit inside my freezer and labeled them.  Now, I don’t have to dig for my frozen food. I just pull out the appropriate bin one at a time.  This makes for very easy clean-out of the freezer when needed.

My freezer storage system

Spice storage

ONE MORE “HELPER”

MY ” 1 STEP” STEP STOOL

While I definitely don’t recommend that anybody with mobility problems EVER climb in the kitchen or ANYWHERE, I do admit that since I have gotten this step-stool with the high-rise hand hold, I do use it to reach  a little higher when my husband is not around.  The old 2 step, step stool is  dangerous for me!  I have fallen quite a lot and am much more careful now!
I also use this step stool in my bedroom closet.
If you are fortunate enough to be building or remodeling a home, I highly suggest that you replace lower cabinets with “Pots and Pans Drawers”.  The cabinet doors don’t get in the way when you are in your wheelchair and EVERYTHING in the drawer is accessible!

Pots and Pans Drawers replace lower cabinets

I almost forgot my most recent Kitchen gadget.  It is for browning hamburger.  I saw it on TV and immediately went to my local Kitchen Store. I have also seen it in catalogs.   It is called the “Chop-Stir”.    I couldn’t live without it now!  What a help! No more sore arms from just browning a pound of hamburger meat!

Chop Stir

Other things that I do differently now when I cook:

  • Double recipes or casseroles…1 for now and another to freeze for later
  • I buy boneless skinless chicken and cook and cut up and freeze in portions to be used for a quick recipe on another day.  I buy only when on sale.
  •  I make multiple salads at one time.  If you could get someone to help you chop vegetables for salad, you can store them separately in containers in your refrigerator for days for quick salads later.
  •  I buy salad in bags and add grape tomatoes and croutons to take to church suppers or covered dish dinners with my Bible Study.
  • Again, double, double, double!  I cook rice 8 cups at a time and freeze in qt. baggies…….
  • Look for cake recipes that start with a mix.  Some you don’t even need a mixer to make!  I will share recipes later on another Blog.
  • Processed foods are not good for us, but we can use some short cuts like ready-made pie crusts…or graham cracker pie crusts ( throw away the plate)
  • If I am planning to cook a “complicated recipe”, I get out all of the non-refrigerated ingredients and dishes, measuring spoons, etc. the night before, or in the morning if it is for supper that night.  Doing some work now, and the rest later is better pacing for us who have PPS.

I would really welcome any comments that any of you have that you have found helpful and would like to share with the rest of us!  If you can’t “comment” here for some reason, e-mail me and I will post it for you!

I hope that some of this has been helpful to you.  It is just a part of how I now have my life organized to try to maintain a little bit of “normalcy” to my life with PPS.

Thanks for all of your wonderful comments and encouragement!

Special Thanks and Much Love to my Husband , who is my best helper!

Advertisements

PPS Pain and Fatigue

5 Oct

 

When I complain to my Doctor about pain or fatigue, he usually tells me that I am not getting enough rest.

  I GET SO TIRED OF HEARING THAT I NEED TO REST!  

BUT I KNOW THAT I MUST!

 A day without pain is rare. 

 I was told when I was first diagnosed not to do anything to cause pain or fatigue because I may cause more damage to my nerves and muscles.  But exercise is encouraged… so you have to find the level of activity that is best for you.  My Physiatrist told me that he loves his PPS patients because  “all I have to do is to say,  “Don’t do that!”   

Let’s see…what causes me pain and fatigue?  Breathing too much…..sitting up too long…..holding my head up…..chewing bubble gum or holding my mouth open at the Dentist….walking, standing, sitting.  Any activity that involves using my arms or hands without rest for short periods of time;  such as: driving my van with my hand controls,  sewing a hem into a skirt or pair of pants, holding up a newspaper or book without it resting on something, drying off after a shower, taking a shower in the first place……  Did I say just breathing makes me hurt and causes fatigue?  I know I did.  That would have been almost unthinkable to me way back when I first heard I had Post Polio Syndrome.  Now I have to use my Bi-Pap at night to do the breathing for me so I can breathe unassisted during the day without pain in my chest.   

I think the worst kind of pain associated with Post Polio Syndrome is what we call the “Polio Flu”.  This is usually brought on by long periods of activity when you  FEEL “OK” while you are doing it (so you just keep on until the task is complete).  I call this “Polio Flu” because the pain is like the worst case of Flu you ever had…all of the muscle aches and pains similar to the “Flu”  but without the respiratory congestion of the real “Flu”.   When you finally lie down, a fatigue that overwhelms your whole body just pins you to the bed.  It feels like your body must weigh 1000 lbs!  You are hurting, but so tired that you can’t move….not even to go get pain medicine  or even to cover yourself if you are cold.  You may be hungry, but the thought of  moving one muscle to get food is just way too much!  The pain is in every muscle: legs, arms, body, even your eyeballs hurt to look around the room.  At times I have been way too tired to even talk.  My Mom used to call our home and sometimes if Terry told her I was resting, she might ask, “Can she TALK?”  And she didn’t mean could I talk TO her, she meant was I ABLE to talk!  

Over the years, I HAVE learned to pace myself…more out of necessity than anything else.  My tolerance for driving my wheelchair van, even with ” 1/2 Effort Assisted” steering and brakes, has lessened.  I can describe it more in miles than anything else.  10 years ago, I could easily drive my Mother to one of her doctors near the hospital, which is about 20 miles from my home.  We could have a nice lunch, and stop and shop at a couple of stores while we were out that day.  Mama walked, and I used my wheelchair.  Every stop requires me to transfer from my van’s driver’s seat to my wheelchair.  Starting about 5 years ago  I couldn’t take her to her appointments near the hospital anymore.  She had to change one of her doctors because we needed one that was closer to us. I can drive to the Library, which is 7 miles.  I can only handle about 2 stops in a day, 1 if it is somewhere like Wal-Mart or a doctor where I have to wait.  On these days when I am going to be out, my husband either takes me out for supper or calls for a pizza or I have “planned” leftovers so I won’t have to cook when I get home.  The next day I almost  always require total rest.  Several years ago I had to stop attending  Women’s  Bible Studies and mid-week services at my old church which is about 9 miles from home.  I now belong to a sister church which is only 2 miles away.  I can attend many more things and am not as shut in because of it’s proximity to my home. But I still have found that it is nearly impossible to get to the morning Women’s Bible Study that starts at 9:15. 

 

When I go to church or to a week day Bible Study, I have to get up at least 2 1/2 hours early.  I often have to rest  after I shower and rest again after I dress.  If I have to rush out of the house an hour after I get up, I am “done in” for the day.  This is my life.  My doctor said that he wishes that more of his patients knew how to pace themselves like I do.  Well, if I am doing it WELL, I’d hate to be one of his patients who don’t know “how to pace themselves.”  I do what I do out of necessity. 

 

Post Polio has caused many other problems with my nerves, muscles and joints and I hurt somewhere all of the time.  My Physiatrist told me that I don’t take enough pain medication.  We have an on-going feud about this.  I feel that pain is an indicator that something is wrong.  More pain than “normal” for me and I know that something I did has caused it.  I usually know what it was and adjust accordingly.  For me, as a general rule of thumb, I need about twice the amount of time to recuperate from something I did to cause pain or fatigue.  For example: 1 week vacation at a resort requires at least 2 weeks total rest when I return.  I “rest up” before I leave home.   I rest every afternoon while “on vacation”, but the preparation for the trip, travel and getting settled again when I get home end up doing me in..  Lunch out, a little shopping and a movie with my husband driving my van will cause me to have to stay in bed most of the next morning.  I will not discuss pain medication here because different things work for different people and no two people are alike.

       

   ?????   QUESTIONS I ASK MYSELF   ?????

I have talked to other PPSers and I find that I am not the only one who is constantly asking myself questions.  “Should I do this?”  “Does it really HAVE to be done now, by me, or can it wait until I get help?”  “If I do this, how much pain is it going to cause?”  “Will the consequences be worth the pain/fatigue?”  These questions are applied to dozens of tasks every day….from washing a load of clothes to reaching for a special pot or dish in the cupboard, to going up 1 step to get to something, watering a plant with a watering can…..you name it, If I do it there will probably be consequences. 

I have long ago given up trying to do my own housekeeping.  It has been about 24 years since I have been able to vacuum a room.  The same year I scrubbed out my bath tub for the last time. I still do the laundry and fold clothes.  This give me a lot of satisfaction to have everything clean and put away!  My dear husband does the ironing and it “magically appears” on my closet door before I wake up in the morning!   I have monthly household help for the heavy cleaning, but the day-to-day things are taken care of by my husband.  He clears the table after supper and empties the dishwasher in the morning.  He pumps my gas and does a thousand little things…he is my angel.  I sometimes get cross at him for scolding me for doing too much or saying “Save your steps!” when I take off to go and get something that he could easily do instead. 

                                                                                           

 It is hard to learn to accept help from others when we have been used to doing it all ourselves.  But I found that one of the ways you can bless other people is by letting them help you.  I often accept help with opening doors, fetching things from grocery store shelves, etc. because it is nice of the person to offer, and they feel good when they get the smile and “Thank you!”  for helping.  We often forget to thank those who help us the most.  I know I don’t thank my husband enough for all the things that he does for me without my asking. 

I was given advice that when writing about PPS Pain and Fatigue to try and write it as if someone who has never heard of PPS needs to know how it impacts my life.  I have really just scratched the surface.  If any of my readers have anything to add, please let me know and I will add it to the “Comments” section (you can do it yourself if you register).  So long for today…I need to go and rest now.   

 

Till Next Time…..I’m Outta Here!

 

ADDENDUM……

I forgot to mention that the PAIN saps your body of your STRENGTH, thereby also causing severe FATIGUE.  Your body puts out so much effort to try to keep you going when you suffer chronic pain.  There is a so a psychological component.  It is depressing to be tried and hurting all of the time.  It is a struggle to try to stay positive…every now and then, when I am having one of my “Post Polio Flu” episodes, I let my mind wander and I think about the fact that there is no cure for PPS.  I will ALWAYS have it….and it may even get worse!  If you let yourself dwell on this fact, you could become a very depressed person and not very much fun to be around…so I just try to think positive, be grateful for all of the things that I have been able to do in my life…and know that there  still will be some good times ahead. I try to think of things to be Thankful for…..Especially my husband and my wonderful friends and my Church.  And I have very good Doctors who understand and want to help.  I also have gotten more and more PPS “brothers and sisters” who will always know without me having to go into a lot of detail if I am having “one of those days.”  I hope that they, too, know that I am here for them.  

Passing along the Blessings……

28 Aug

In spite of all of the medical problems that I have had, I can still appreciate the Blessings that I have received….I really love to help and encourage others.  God has been very good to me! 

All of these pieces of equipment that I have been talking about are expensive.  If you qualify, and are on Disability or over 65, Medicare will pay for the wheelchairs, braces, crutches, walkers, and even canes, if you have a prescription form your Doctor.  If you are not on Medicare, then regular Health Insurance pays in some instances.  I have had NO experience in this department.  I have been on Social Security Medicare since I was 30. (more about that later)

Not everyone qualifies for these kinds of wheelchairs, even if there is a legitimate medical need for it. All of the forms have to be filled out “just so.”  There is always someone who falls through the cracks. 

Back in the mid-1990’s, when I was waiting for my first Recline/Tilt wheelchair to be made and delivered to me, I was in an AOL PPS Chat Room on the Internet and the subject came up.  Someone asked me what I was going to do with my “old” Invacare Power Chair-which was in “like new” condition?  I had not thought about it at all…….someone else in the Chat Room told me that a mutual “on-line friend” needed a Power Chair but her Supplier was having a hard time getting her approved through Medicare. (Always deal with an experienced Medicare Provider!)  She desperately needed it and while waiting, was confined to her bed or her small house. 

ANOTHER girl who was also in the Chat Room (there were about a dozen of us on-line at the time) got off line, made a telephone call,  and got back on with some wonderful news!  She had recently retired from Bekins Van Lines as the secretary to the President.  She made a phone call to ask for a favor.  Here’s what happened:

Bekins came to my home in SC,  took my “old” wheelchair, crated it up and delivered it to the home of the lady in need, who lived in Cleveland!  FOR FREE!    

It was perfect for her! (we were approximately the same size.) and it suited her needs exactly!  A man from her Church came and built  a ramp to her front door.  She was able to get out and go (on the sidewalk) to the grocery store alone for the first time in YEARS!   I think that God had a hand in working this all out…I don’t believe in coincidences! 

  When she died, her son called me and asked me if I wanted the chair back.  I told him absolutely NOT!  I asked him to pass it along through his Church or a place like the MS Society.  He did. 

I had a similar experience with my Invacare Recline/Tilt Wheelchair.  When I received my Permobil Recline/Tilt chair, I donated the Invacare to The Shriner’s Children’s Hospital (it used to be called The Crippled Children’s Hospital).  I got a beautiful letter from them thanking me for the gift of “The Cadillac of Wheelchairs”.  They told me that it would be going home with a teenager, and that they were going to work on getting him a van.  Now, I know from experience, that this is a life-changing gift.  Once again, I had been given the opportunity to Bless someone else the way that I have been Blessed ! 

I have donated used scooters, walkers, crutches and other equipment over the years.  There is always someone in need of exactly the piece of equipment that you no longer use. 

So, if you have unused equipment sitting in your garage or in a closet, consider donating it to an organization or an individual. You will be blessed by it!  

NO, I DON’T WANT TO RACE! (some of my Pet Peeves)

22 Aug

People who come up to you  and say: “Do you want to race?” 

In Restaurants:  Waitress to my husband or friend: “Does SHE want anything to drink?”

People who ask you why you are in a wheelchair…you explain to them that it is PPS, and they say “But you LOOK so good!”

“What happened to your foot/leg?”  (don’t they notice the $35,000 wheelchair?)  Yes, people who have a sprained ankle use them all the time.

I had a lady actually pat me on the head in Wal Mart and say, “You are too beautiful to be in a wheelchair.”  Should I be drooling and not be able to sit up?  or not  wear make-up and nice clothes?  Grrrrr..!

When you go into a large Public Bathroom, even if there is only one other person in there, they will ALWAYS be in the Handicap stall!  They had to pass several  “normal” stalls to get to it. It is usually a young person.

People who think that the Cross-Hatched areas beside Handicap Parking are for discarded shopping carts. I have had to go back into the store to get help so I can get my ramp down.

Same Cross-Hatched space beside Handicap Parking space:  a CAR parked in the Cross Hatched space!  Even if you have a Handicapped Placard, it is NOT a parking space! I have to go back in and have it announced for the person to come and move their car….while my ice cream is melting…..I usually follow them to their car, explaining that it is not a parking space just to embarrass them……

Said to me in a mall or while grocery shopping: “I wish I had one of those!”

“It’s so good to see that you are OUT.”  We all know that the Disabled are supposed to stay home and be…well…Disabled.

Laundry

19 Aug

Laundry Cart on wheels…..

I was doing my laundry and I realized that I have a tip that might be helpful to those of you who are using wheelchairs or maybe just aren’t as strong as you were before PPS.

First of all, when front loading washers and dryers came out, my husband and I went on a search for a washer/dryer that was completely accessible from my wheelchair. They were very expensive and there were not very many choices.   Just having a front loader was not enough…the controls had to be on the front, within reach for me while I was in my wheelchair.  Now this may sound simple, but when front loaders first came out, most of them had the controls in the back, just like the top loaders.  Someone told us to look at Sears.  Voila!  Front loaders on pedestals with controls on the front of the washer/dryer….and Sears’ Kenmore brand just happened to be more reasonably priced!  My arms and back Thank You, Sears! 

Another helpful aid that I have been using since even before I started using my wheelchair indoors is my laundry cart.  I found that I could not lift a full run-of-the-mill ordinary plastic laundry basket…..I have no idea where I found this cart, but I have been using the same laundry cart on wheels  for almost 20 years!  It is not deep like the commercial laundry baskets that you find so many of on the Internet.  I push it in front of me to the washer/dryer and fold the clean clothes in my lap and put them in it to transport to the bathroom and bedroom.  I must admit, I have moved more than laundry in this basket on wheels! 

I found one on the Internet and here is a link to the site.  They haven’t gone up much in price since I bought mine about 20 years ago! I highly recommend this cart!

http://search.wdrake.com/search?p=Q&ts=custom&w=laundry+cart

Customizing your Wheelchair “Home”

17 Aug

Carry all Bag and the Cane my step daughter Jacquie painted for me

If you are just getting your New Wheelchair or scooter or even if you have had it a while…remember, it is your “home” part of the time and you want to have some things handy. 

I use a huge Vera Bradley bag on the back of my wheelchair, hanging from my head rest.  It has nifty compartments in it. You might be able to use a back pack.   It holds things like:

           An Umbrella and Poncho…mostly to protect the chair rather than me..

           A  Small roll of toilet paper

           Extra medication

           Tools for fixing my wheelchair

           Bandaids, safety pins, a small sewing kit, paper clips, rubber bands, my camera,  batteries

                                                    A notebook and pen

                                                   A sweater

                                                   Sunblock and bug spray

                               USE YOUR IMAGINATION….and lots of Cable Ties!

My Medical Supplier who works on my wheelchair in case anything goes wrong says he wouldn’t dare remove a rubber band, velcro strip or cable tie from my chair!

  •  My house keys, small flashlight and a Swiss Army knife are hanging from a    cable tie under the right arm rest

My cell phone is attached to my left arm rest with a velcro band and a cell phone case that is designed to clip onto a belt.

I have had “S” hooks installed on the back to carry shopping bags.  (more about shopping later.)

I fashioned another “S” hook, hanging by tight cable ties under my R armrest to hold my cup. 

Remember, this is “home” so customize and decorate!   I know that my ideas are not original, but I am hoping that some of my tips will be helpful to “newbies”.

So Now you have had a tour of the outside of my wheelchair.  I will talk next about motorized wheelchairs and the differences in the designs and types.  I have had 4 different Electric Wheelchairs.

 I would love to hear about how some of you have customized your wheelchairs or scooters.