Respiratory Muscle Weakness and PPS

 Linda and her husband Terry

Hello from Beautiful South Carolina!

I haven’t written an entirely new Post to this Blog for some time. I guess the reason (excuse) for that is that when you have a Blog about having Post Polio Syndrome, you have Post Polio Syndrome and don’t usually feel like writing a new post for the Blog. I guess another “reason” could be that I have been just plain lazy in neglecting my Blog. For this, I apologize.

I wrote this simple summary explaining Respiratory Muscle Weakness a few months back, because there is so much misunderstanding about how Post Polio can effect someone’s breathing.

Before posting the article to my Post Polio Support Group on Facebook, I had it reviewed by my Physiatrist and my Internist who both said that it was “excellent”. I would welcome any comments about your personal experiences with RMW.

Respiratory Muscle Weakness (RMW) and Bi-Pap and C-Pap use

Written  by Linda Rowan

Have you ever been told that you have Respiratory Muscle Weakness? (due to Polio) You can have this even if you didn’t have a diagnosis of Bulbar Polio or were not in an iron lung. This is what happened to me. I use a Bi-Pap at night and have to sleep almost upright (O2 level drops if you lie flat). The Bi-Pap machine (Bi-level Positive Air Pressure) pushes room air into your lungs on the INhale and then the pressure backs off (or lowers) on the EXhale (Bi-level pressure) so we can get rid of CO2 by exhaling it. (which is what people who are “normal” would do naturally.) Most “polios” who have Respiratory Muscle Weakness have trouble exhaling against the Continuous Positive Air Pressure (C-PAP) of a C-Pap. This happens because of atrophying (weakening) of the diaphragm and other respiratory muscles, (chest muscles and intercostal muscles) which are between the ribs, due to Polio. A Bi-Pap lowers the pressure on the exhale so that we can rid our bodies of excess CO2.

If you have Respiratory Muscle Weakness, and are given Oxygen without mechanical support (a Bi-Pap), the lungs “send a message” to the brain which signals the Respiratory Muscles: “we are getting enough oxygen, so you don’t have to work so hard.” Then if the respiratory muscles aren’t working to push air in and out of the lungs, the CO2 can build up which is very dangerous, and can be life threatening. (it would be helpful to read Dr. Oppenheimer’s article on this subject).

This is very complicated. Insurance companies have tried to put people with Polio Respiratory Muscle Weakness on C-Pap because I have been told they are much cheaper (by my Physiatrist). I tried to use one that my Respiratory Technician brought to me ( just to see what it was like) and had a feeling like I was being smothered.” I could not exhale against the continuous air pressure rushing in. *Every Post Polio does not need a Bi-Pap instead of a C-Pap.  For instance, if you have Sleep Apnea and Don’t have RMW, a C-Pap may work well for you. We had to submit a lot of documentation to Medicare for them to approve a Bi-Pap for me: A Sleep Study (interpreted by a qualified Sleep Technician and/or your Physiatrist or Pulmonologist) A PFT (Pulmonary Function test), the  VC (Vital Capacity) of your lungs, (mine was 31%) were required. And an ABG (Arterial Blood Gas, done in Respiratory at the hospital by a Respiratory Technician) to test if you are retaining CO2, was done, and a prior diagnosis of Post Polio Syndrome. If you have Respiratory Muscle Weakness and are not on Bi-Pap (yet), you may experience some or several of the following symptoms. Talk to your Pulmonologist or Physiatrist ASAP.

• morning headache
• confusion, or other cognitive deficiencies
• excessive daytime fatigue and sleepiness
• shortness of breath, and inability to have a productive cough
• problems speaking without taking breaths between words
• unexplained muscle pain in the chest and trunk muscles
• trouble sleeping lying flat

Some of these symptoms may also be caused by other problems, such as heart trouble, (shortness of breath). The purpose of this article is primarily to explain what Respiratory Muscle Weakness is, and the difference between a Bi-Pap and a C-Pap.  I hope that after reading this you have a better understanding of RMW.

                                                Here’s to hopes of much warmer  days ahead!

Recommended Reading:

Oxygen Not Recommended for Hypoventilization for Patients with Neuromuscular Disease

(Dr Oppenheimer’s article and others):

http://www.lindacrabtree.com/cmt/anesthetics/anesthetics_article3.html

Summary for Anesthesia Issues for the Post Polio Patient:

http://www.post-polio.org/edu/hpros/sum-anes.html

The “411” on “911”

Everyone with a Medical Condition Should Consider This:

I recently talked to the head of our county’s 911 service. (call them on their non-emergency number.)

He assisted me in getting my Emergency Medical Information connected to my phone number in the case I called 911 and couldn’t tell them what was wrong. He also put information in the system that told the EMT”s how to get into my home if I was locked in and unable to get to the door. (where to find a hidden key). This has happened to me before!

They said that most people don’t know that you can add Medical Information on individuals in your home to your telephone number that shows up when you call 911. Some people’s houses (street and house #) don’t even show up on the new computerized systems. If you have a newer home, your street may not be on the 911 map!

He had me make several practice calls to 911. My street did NOT show up on their computer! They had to call Verizon (who is responsible for getting the streets and house numbers entered into the 911 system in our area) and get my street added to the system. Then we made another phone call to 911 to see if it worked.

After THAT was in place, he took the Medical Information, Doctor’s name and Emergency Contact information. The amount of information is limited to a certain number of characters. I simply told them where my list of diagnoses, drugs, doctors, and vital information was located on my frig.

Now they know NOT to give me O2 without Mechanical Support (Bi-Pap) and not to give me Morphine, Vicodin, Oxycontin, or any other pain medication that lowers your respiration unless I am on a Bi-Pap.

I would strongly recommend that everyone who is handicapped or is prone to fall or might need an ambulance for any reason, to call 911 and set up this information with your county 911…I don’t know if this service is available everywhere….

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

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!

 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!

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!

PPS Pain and Fatigue

 

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.  

Scotland and Ireland, June 2004, part 1

 

I was SO excited when I found out that my husband had qualified for an Award Trip to Scotland and Ireland!  There were about 30 or so people who were planning on making the trip.  We had an organizational meeting….

An upsetting meeting…

When the Tour Guide saw me in my recline/tilt wheelchair, she said (out loud so everyone could hear) “Nobody told me we had someone who was in a WHEELCHAIR!  You can’t go!  Scotland and Ireland are NOT wheelchair accessible!”  I went home crying and after feeling sorry for myself for a while, I posted my story on-line to Post Polio Support group (I think it was SJU) and went to bed. The next morning, I had about 100 e-mails from other PPSers who told me that our Tour Guide didn’t know what she was talking about.  They encouraged me and gave me tips that helped me to get ready for the trip. 

I had been told, first of all, by my Medical Supplier as well as seasoned travelers on the Support Group, to NOT  fly with my Recline/Tilt wheelchair. (the Airlines don’t know how to handle them very well and they have been known to do thousands of $$$ of damage trying to move them.)  So, we rented a high backed manual wheelchair with a head rest that also reclined.  I don’t like to be pushed, but my husband  is a good pusher…he listens to me when I want to go somewhere and he does not park me by the garbage cans like my ex-husband used to do.  He is very solicitous of my needs!

Dealing with the Airlines when you have your own wheelchair 

If you are traveling with your own wheelchair or scooter, always notify the airline ahead of time.  You will be allowed to drive your own chair to the doorway of the plane, where they will either put you in an “aisle chair” or escort you to your seat, boarding you first, before all of the other passengers.  They will take your scooter/wheelchair and stow it away in the luggage compartment.  Make sure that you fold your seat down (and your handlebars and controller if it is a scooter) and put the scooter in “free wheel” so they can push it.  TAKE YOUR KEYS and any backpacks, etc. 

Remind your Flight Attendant before landing that YOUR personal wheelchair is to be brought up to you when you land.  Never take it for granted.  When you arrive at your destination or your connecting airport, remind again, if possible..be assertive but polite of course……you will be the LAST person off of the plane, but your chair will be waiting for you at the doorway of the plane.  You will have the use of  it to change planes or to use if you have a long lay-over.  If you are traveling alone and have to make a quick plane change and need assistance, ask the Flight Attendant to call for a cart and put you AND your wheelchair and your traveling companion on it and take you to your next destination.  Or they will push you…you do not have to tip this person…it it part of their job!   

As soon as you arrive at the next gate and there are Flight Attendants, alert them of your presence and park yourself near the Jetway if you are leaving soon.  Again, you will be boarded early and they will take your chair.  You will have to stow your walker or cane or crutches in the overhead bins, but the Flight Attendant will get them for you if you have to make a trip to the restroom. (I always try touse the airport restrooms before boarding because they  are so accessible). 

If you are on an overseas flight or a long flight that serves a meal, notify your airline of any dietary restrictions when you make your reservations.  Usually the “special” meals are better than the “regular” meals! 

Quick tips……

For the last few years (since a 5 hour lay-over in Newark airport) I now pack 2 pool floats, purchased at a local Beach Store for about $1 to $2 each, and pack them in an outside compartment of my carry-on luggage.  If I need to lie down in the airport, My husband blows the float up and I simply lie on the float in the floor of the airport!  I also take a very light blanket and a microfiber blindfold….right before it is time for them to call our flight, he punctures the pool float with a ink pen and puts it in the garbage.  I have another float in my luggage for the return trip.  If I don’t use the one on the trip TO my destination, I will have a  float to use in the pool at our hotel!  When we get back home, I immediately replace the floats for my next trip.

*****One of my friends who travels back and forth to Ireland quite a lot told me about something she uses called a “First Class Sleeper” that you blow up around you like a beanbag using the air conditioning vents….it is heaven..It folds up to the size of an umbrella when you aren’t using it…I find it works best for me with a Bulkhead Seat, using my carry-on in front of me like a footstool.  You can check this out at this link:

http://www.activeforever.com/p-1904-the-first-class-sleeper-pillow.aspx?gclid=CPPb89myjKQCFQXs7QodkQ5uHw

Buy bottled water in the airport after you have gone through the check-in….and make sure you have some high energy (protein bars or whatever is good for you).  The snacks will probably not be offered on-board…not at a decent price if they are offered at all.

I also travel with my I-Pod with a couple of Audio Books loaded on it and all of my music.

OK, you have successfully boarded the airplane, changed planes, gotten a quick nap at the airport and arrive well rested at your destination.

Now it is time to board a bus or a cab or retrieve your rental car to go to your hotel.

Hotels…..Bed and Breakfasts

Keep in mind that they don’t have the ADA Law in Europe or other foreign countries.  You need to check and re-check your hotel accommodations before you leave home!  You can talk directly to a Concierge at the hotel either by e-mail or by phone.  Don’t simply ask for a handicapped accessible room.  Be SPECIFIC about your needs!  What they consider accessible isn’t necessarily what we consider accessible!   For instance:   My favorite hotel in Cabo San Lucas has ground floor rooms and suites but the rooms don’t have handicapped accessible bathrooms!  The PUBLIC bathrooms in that hotel have raised toilets and grab bars…but not in the hotel rooms!  My solution to that particular problem turned out to be (don’t laugh) 2 baby swim rings… first one taped in 4 places to the toilet (seat raised) with double sided carpet tape, and another identical baby swim ring taped to the first one with more double sided carpet tape.  It is a little wobbly, but there is a sink near by that I can put a hand on to steady myself.  I put a towel in the floor of the shower before I get in to make sure the footing is not slippery.  I NEVER shower in the room alone!  They say they are building handicapped equipped rooms there….we’ll see. 

BACK TO SCOTLAND………..

The Balmoral not only had a handicapped equipped bathroom like I was used to, but they also have a sling that can be used to put a quadriplegic into the bath tub!  I didn’t try this, but kind of wanted to…they offered instructions…..From what I understood, this was the ONLY handicapped accessible room in that huge hotel!  What a beautiful place! 

The Balmoral, Edinburgh, Scotland

 This was our “home for 5 nights. 

We found Edinburgh to be such a delightful city!  The double decker buses took my manual wheelchair on board with no problem and my husband hoisted me up into the bus.  Our group traveled by bus when we went to pre-arranged tours and places of interest.  When he and I were on our own, we found the city to be 100% wheelchair friendly.  It is a college town and the atmosphere was so friendly and cafes and shops were bustling.  At that time of year (June) it didn’t get “dark” until about mid-night…the sky turned a beautiful color of turquoise….so you could stay out on the streets with all of the college kids until late and you always felt safe.  It was an expensive city.  Scotland is on the Euro and the exchange rate was not good for us Americans.  So we bought just a few keepsakes there. 

The “Old City” is visible from the “new city” below.  The sight of Edinburgh Castle from the New part of the city (especially at night) was breath taking!   

I am in the upper right in this photograph....

 

You can see the  clock tower of the Balmoral in the background, in this picture to the left.  Notice the color of the sky.  This was taken around midnight. 

Street Artist performing for me in Edinburgh. 

My husband with his "dresser"

We went on a tour of Edinburgh Castle and there was one night where all of the guys dressed “formally”, which in Scotland means that the men wear kilts.  We were able to find his family’s (clan?) Plaid.  Our doorman came up to help him dress, and as he added each piece of the kilt outfit, he told of the significance and meaning of each item.  Priceless!  Here is Terry being dressed and another picture of all of our handsome men in their kilts.

I’ll write more about our trip to Scotland later…and then it is on to Ireland…..

Breathing Problems and PPS

Me caught asleep by my Husband. Notice the Walkman earphones

When I was first diagnosed with PPS in 1986, I got one bit of “good news”.  I would not have breathing problems with Post Polio Syndrome because I had did not require an Iron Lung when I had Polio as a child, and I did not have “Bulbar” Polio.  WRONG!

  We all know today, that ALL of our muscles were involved with Polio.  Some of us came out with no discernible residual effects, some were left with braces, crutches and wheelchairs for a few years, and some have even been using wheelchairs, crutches and braces all of our lives. After re-training my muscles to be able to crawl, sit up, stand and walk,  I “only” had an “S” curvature of my spine, and an underdeveloped right leg.  I was fitted with a back brace, which helped to almost eliminate the scoliosis, and after several years of Physical Therapy, I walked without assistance. This happened right before I started first grade at 7, a year late because of my physical limitations.

PART 1 of the “Nightmare”

The downward spiral….

OK, as I am prone to say:  Fast-Forward to 1986…..In spite of the fact that I was diagnosed because of Shortness of Breath  (SOB) by my Allergist, who referred me to a Neurologist for evaluation for PPS…they told me that my breathing would not be a problem…for the reasons I stated before: no Bulbar Polio and no use of an Iron Lung.  

In about 2002, I started to have a great deal of pain in my trunk muscles and across my chest.  I thought this was simply from sitting up for too long.  A new recline/tilt wheelchair helped this pain a lot!  But it persisted.  I would take NSAIDS to get through my day. The pain became excruciating at times.   My Medical Supplier loaned me  a  Bi-Pap  ….Medicare had said that I did not qualify for one because I didn’t have “Sleep Apnea.”  Post Polio Muscle Respiratory Weakness was not recognized by Medicare as diagnosis to qualify for a Bi-Pap machine from Medicare  at that time.  I simply “fell through the cracks”!  

That helped for a while,….Later, my pain increased….. I was taking 3200 mgs. of  Ibuprofen a day!….the limit according to everything I had read….  My condition deteriorated.  I became weaker and weaker.  I would not be able to finish a sentence when talking without stopping for breath.  I could not walk across a room.  I could only take about 6 steps with my walker without having to stop and sit down on it. For some reason, talking on the phone was even harder than talking in person. 

A personal aside:  My wonderful friends at church organized a group of ladies and their husbands…some of whom I didn’t even know,  (they sat on the “other” side of the church!) and they started bringing my husband and me dinners every day.  These ANGELS from my church fed us for about 6 months!  They said they were willing to do it for years, if the need still existed! 

Anyway, back to my story:  I went to my Primary Care Physician (my brain was too fuzzy from lack of Oxygen to think to see HIM while my Physiatrist was trying to get me on Bi-Pap). He drew blood and sent me home to wait for Oxygen to arrive to use with my Bi-Pap. Before the Oxygen got there, they called me and told me to get to the hospital STAT and to NOT drive myself! 

My Potassium was down to about 3 (I forget, some levels were 2 and some 4) Mg was super low and he said that my Hemoglobin  was so low that my red  blood cells couldn’t carry enough oxygen to keep me alive!  He put me in the hospital and started me on Oxygen (with Bi-Pap as mechanical support), gave me about 3 units of whole blood, Magnesium and  FIVE BAGS of Potassium IV!  It takes about 2 hours per bag of Potassium, so that was 10 hours of that.  It was one of the most painful things that I have ever been through!  Potassium IV burns like fire!  I had 3 nurses all of the time and they kept my arm iced down.  The next day I felt reborn! 

PART 2

The “why“

Now that they had me stabilized, we needed to find out “why” this had happened.  As it turns out, My borrowed Bi-Pap machine had stopped working.  It was making all of the right noises, but not pushing air.  So, my breathing muscles were being overworked (causing the pain, just like walking too far) and the NSAIDS had caused bleeding ulcers!  My Dr. told me that the Ibuprofen was such a good pain killer that it killed the pan that IT caused! 

I needed a new Bi-Pap machine.  They rented for about $750/month!    I had to get one through Medicare! If they approve you, they also provide service, parts and repair.

My Physiatrist ordered a Pulmonary Function Test to be done in the hospital.  It showed that I was at 31% of “normal”.  The report that my Physiatrist got from the PFT said that the opinion of the Respiratory Therapist was that I wasn’t trying. They must have discussed the results,  because when I went for my ABG (Arterial Blood Gas…blood drawn out of an artery to get your CO2 level) it was the same Respiratory Tech….no problems. 

Needless to say, with these numbers, even though Post Polio Respiratory Muscle Weakness wasn’t a diagnosis to 

 qualify me  for a Bi-Pap machine, I got my new Bi-Pap. 

I was told later by one of my Doctors, that if I had not gotten  the new Bi-Pap machine, that I might have been dead in 6 weeks!

I think that now Medicare does recognize PPS and Breathing problems and you can get a Bi-Pap with this diagnosis.

 

SOME Warning signs that you might have PPS Breathing problems:

SOB, WEAKNESS, HEADACHE, MUSCLE PAIN IN CHEST AND TRUNK AREA, TROUBLE TALKING WITHOUT TAKING A BREATH, PROBLEMS BREATHING WHILE LYING DOWN (like someone is sitting on your chest, or you can’t get enough air…in or out..) COGNITIVE DEFICIENCIES..like trouble thinking, remembering, word finding, etc.  Some of these are general PPS symptoms, but get worse if you are retaining CO2. 

When your breathing muscles are not strong enough to expel Co2 you can get CO2 build-up, which can lead to coma and death.  Simply giving the person O2, without Mechanical Support (Bi-Pap) will make this WORSE, sending a message to the brain that says, “We are getting enough Oxygen, so the muscles don’t have to work so hard.”  This causes more CO2 to build up….My Pulmonologist told me today that using a Bi-Pap was like a SAFTEY NET for Post Polio Sundrome, especially if we need Oxygen Support!

   

What IS a Bi-Pap?

My Bi-Pap Machine

You may have heard of a C-Pap.  Some people wear a C-Pap at night for sleep apnea or snoring.

Bipap on top of Humidifier and storage drawer...hidden in day time by tablecloth

C-Pap stands for “Continuous Positive Air Pressure”.  A Bi-Pap is “Bi-Leval Positive Air Pressure”  A C-Pap will not work as well in Post Polio Respiratory Muscle Weakness because our muscles are not strong enough to breath out (exhale) against the C-Pap blowing the air IN!  A Bi-Pap stops blowing in for a set period to allow the natural exhale of CO2!  Once you get used to wearing a Bi-Pap, it actually breathes for you, just like the Iron Lung did long ago!  The Iron Lung did it externally, while the Bi-Pap does it internally, by blowing air INTO your lungs (room air, usually is sufficient).  After 8 hours or so of sleeping with your Bi-Pap, your breathing muscles have had a good rest!  It’s just like putting your legs up and not walking so that the muscles can rest!

 

I store my machines under a bedside table…notice the bed side rail.  I attached the hose friom my Bi-Pap to it so that it won’t “pull” out of position while I sleep.

It comes with a handy carrying case so you can take it with you when you travel…just tuck in an extension cord along with the rest of the equipment.

Of course you have to get used to wearing the mask and head gear, but that is nothing compared to living with constant pain and shortness of breath, or worse.  They make many different masks and headgear.  After a while you can find one that you like more than the others.  Your Bi-Pap Air Pressure INHALE and EXHALE are set by your Respiratory Therapist and your Doctor.  Just keep your filters clean and hold your breath every week or so to make sure it is still pushing air….if I had known to do THAT, I wouldn’t have had my near death experience.

VANS and LIFTS

I LOST MY INDEPENDANCE……..     

 

  

   

 

 

 

 

When I was living in Fresno, not long after being diagnosed with Post Polio Syndrome, I owned a Ford Aerostar Van. It was great…the back seats laid down perfectly flat, forming a “bed” where I lay with my Great Dane, Duchess, on trips that were over a couple of  hours long, with my husband doing all of the driving.  The Van was primarily my vehicle.  It became harder and harder for me to drive.  I had always driven with my right foot on the accelerator and my left foot was used for the brake.  I didn’t have  good enough reaction time to move my right foot over to the brake.  I started having to hold my knee down with my hand at stop lights to keep the brake on…my leg was just too weak to do it alone anymore. 

 I did that a while and then I found that I was having a very hard time steering the van.  A simple trip to the Grocery store, using their in-store “scooters” exhausted me.  So I DID NOT DRIVE AT ALL FOR ABOUT 2 YEARS!  I had completely lost my independence! I was pushed everywhere by my husband.  

   

DIVORCE..one of the best things that happened to me!   

Now, I know that sounds strange….but I have spent a life time turning negatives into positives.  After my husband left me, I was given a scooter lift to attach to the back of a used Dodge Sedan that I purchased when I sold my Van.  I took lessons and learned how to drive with hand controls. It was very scary at first!  My instructor had me on a busy California freeway 30 minutes after teaching me the basics of hand controls! After not driving at all for about 2 years this was so frightening!      

 

 

 

 

 

My "Easy Lock is mounted behind the driver's seat. You can mount them so that you can drive from your wheelchair.

 My electric wheelchair backed into an “Easy Lock” where the middle seats would have been, and it still had the rear bench seat for passengers. I had found out by this time, that I could get my steering and brakes reduced by 1/2 effort.  I have absolutely no idea how they do this…but it is a life saver!  They CAN do reduced effort up to 100% but then a non-handicapped person would probably get you killed trying to drive with normal strength!  The Town and Country was plush, but one problem with it was that it bottomed out over every speed bump!  When I started having mechanical problems with it I decided to trade it in.  This van had a 6 way (up/down, forward/back and 180 degree swiveling) seat on the driver’s side.  I had the Easy Lock installed later when it became clear to me that I could not tie my wheelchair down safely with a seat belt!

 

MY  IMS RAMPVAN

I love my IMS RampVan!  I was finally able to trade up and get all of the

 “bells and whistles”  

  

 

 

 

 

Driver's seat turned toward where my wheelchair is locked down

 I wanted in a wheelchair van that I could drive and could also be driven by an able-bodied person.  Mypresent  van is also a “Kneeling” van…but the ramp comes out from under my car when the van is kneeling while the door is opening.  All of this is controlled by buttons that you push from inside your vehicle.   

 

 

 

 

I have Reduced Effort (50%) on my steering and brakes. I have an Easy Lock installed behind the driver’s seat for my wheelchair. I have to back my chair up the ramp and into the “Easy Lock.”  It’s not as “Easy” as it looks….going backwards up the ramp!  It took practice!

 

$$$$$$  MONEY  $$$$$$  

None of these modifications comes cheaply!  A lot of people (non-handicapped) think that the government pays for  vans!  I WISH!  The cost of all of my handicapped equipment alone on my present van was about $23,000…that is added to the basic cost of the van that you want.  Just the Kneeling option adds about $15,000 to your cost of the van.    

My husband, waiting for me to drive into my van

 

Me exiting my present van with my recline/tilt wheelchair

 

FINANCING 

Because of the huge expense for these specialized vans, some Banks will stretch the loan out longer.  My Town and Country had an 8 year loan on it. It cost me $39,000.   

 

The Bank (in Georgia) that financed  my first van offered a 10 year loan to those who needed that option. This was 1999.

I financed my new van “normally” for 5 years and it is now MINE!   

DEDUCT YOUR EXPENSES!

You can DEDUCT as a MEDICAL EXPENSE, any equipment that you add to your vehicle to accommodate your wheelchair. So make sure that if you are buying a used one, you get the cost of the handicapped modifications itemized so you can put it on your income tax return.   

 

??????????      QUESTIONS     ??????????

If you have a question about any of  my equipment or about something thatI haven’t made clear, I’ll be

glad to try to answer it or to refer you to my “expert”. 

There are many Kneeling Vans on the market.  Mine just happen to be IMS.  Braun (used to make them) may still make them. Rollex and VMI are other choices.  If you Google “kneeling Vans” you can find many new and used vans.  Just make sure that wherever you purchase it, that they also can service…it requires special training and licenses to work on kneeling vans.

 

  

 

 

 

 

"Suicide knob " for steering on the R. of steering wheel, and hand control to the left of the steering column. Toyota Van

Hand controls can be different according to your need and who makes them.  Mine are mounted on the left of the steering column.  You push towards the dash for Brakes and pull down towards the floor for the gas.  You steer with 1 hand using a “suicide knob” that is on the steering wheel.  I drove this car with the lift for about a year.  It had power steering, but I found that after I moved to SC, I needed a better system than a lift on the rear of my car.   

   

 MY FIRST VAN WITH A WHEELCHIAR LIFT

I was able to buy a basic (and I really mean BASIC) van.  It had no windows, floor or headliner!  The dealership had big windows put in it and added carpet and a headliner.  They also assisted me in getting hand controls installed and a Braun lift (at the time, the best in the industry)  for my scooter, out of the BACK of my van.  In 1991, where I live, I needed to go out of the back due to the lack of parking spaces available for a side loading van.  I was always having trouble with the doors opening in sequence….the Braun lift never failed me!  I found that in time, I was getting too weak to drive it because of the lack of power steering.  Our 15 year old daughter got her daytime driver’s license and drove me a lot of places.  She was 92 lbs. and 4′ 11″.  I wish I had a picture of her driving that HUGE van!  We really got some looks when people saw her driving me!  🙂  Eventually, I had to think about upgrading…  

 

 My First  IMS RAMPVAN

When I traded in the big van, I bought a kneeling van, converted by IMS and added handicapped options to the already modified van.  The “kneeling vans” are taken to special factory where they cut the floor out of the van and lower it 13 inches.  Then they put in an automatic ramp, that comes out while the van is kneeling and your side door is sliding open.  (this ramp came DOWN out of the side door).  My front passenger seat was removable, so I could put another wheelchair in that spot. My friend rode up front in her chair when she visited me.  

 

I ordered the 6 way seats on the driver’s side as well as the passenger side.  I can turn the seat completely backward and raise it to enable simple transfer from my wheelchair to either seat.    

Passing along the Blessings……

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!  

Other Wheelchairs… Recline/Tilt and “Jazzy style”

RECLINE/TILT WHEELCHAIR # 1

 MY ” INVACARE”

 

 I got approved early (less than 5 years)  through Medicare for this upgraded wheelchair.  I was in Heaven!  The first time I went to church and reclined during the sermon, I went to sleep.  I asked my husband why he didn’t wake me up and he said that I looked like I was praying!  I started going to movies again.  Our local Cinema allowed people in wheelchairs, along with a friend,  to get in for FREE!  We went to almost every movie that came out. 

This particular wheelchair only reclined (the back) and the chassis tilted, making it like a recliner that would be in your living room at home…with one exception…my legs didn’t elevate.  I didn’t think this was a problem at the time.

While this wheelchair was great to use when I went out of my house, (I had a wheelchair van…I will discuss Vans in a future post)  it was bulky in the house…I had many scratches and dings in my furniture and walls….

 A recline/tilt has several “speed” settings as well as the controls for recline and tilt.  It takes a while to get used to driving it. Now I am a “Pro”.  I can go backwards as easily as I can go forwards!

I can’t find a picture of this first Recline/Tilt chair, but it was RED! 

 There were so many more doors open to me that had closed because I couldn’t sit up long enough!  I was able to complete a 5 year Bible Study at my church that met for 3 hours every Tuesday morning.  I already knew I was blessed, but I was more blessed to be able to attend studies like this.  I could go out to eat and sit at the table and talk with friends and family…if I got tired, I just reclined. .  I had many custom items like my head rest, and a deep recline gel set cushion (a “Jay” cushion”).  This Recline/Tilt Power Chair cost about $35,000.  It was paid for 100% through Medicare and my Medicare Supplement.

 

 

 

 

Pride Indoor Chair

 

LITTLE “JAZZY” STYLE CHAIR (MADE BY PRIDE)

Backpack on Small Wheelchair

I was in the shop one day and my Wheelchair Seating Specialist was working on a “Jazzy” style   

chair….good for indoors, I thought!   

This little chair  was very compact.  I took it for a ride.  It was quick, turned easily in its small space and was pretty comfortable.  It was just a seat on wheels, not at all like my recline/tilt.  I negotiated a deal and was able to purchase it to use inside my house. I got a “deal ” on it and only paid $900 because it was a re-conditioned chair that had been traded in.

 Medicare did NOT pay for this wheelchair because they had paid for the Invacare recline/tilt. 

 The charger cord stores in the backpack so I can re-charge while eating out at a restaurant, or wherever I can just plug it in. 

 

  RECLINE/TILT  WHEELCHAIR #2  MY “PERMOBIL’  

  

The new wheelchair can rise to the occasion!

(Notice my “Candy Cane” hanging on the back.  Our daughter painted it for me.  She has painted several custom canes for me, and people ALWAYS  compliment them!)

 I had used the Invacare chair for 9 years!  It was still in great shape, but I needed the Elevating Legs because of worsening back problems.  I had no problem getting approved by Medicare for the Permobil.  This chair came with the extra benefit of having an Elevating Seat. (Which Medicare did not pay for).   This Permobil is the chair I use today.  I think I will be using it until it falls apart.  Tomorrow I am going to have my batteries checked.  When Medicare buys a wheelchair for you, they also will buy new batteries, make repairs, etc.  But the wheelchair is yours.  The Permobil was also in the neighborhood of $35,000 (excluding the Elevating seat, which was another $1400).  Medicare and my Supplement paid for this chair. 

My life has improved so much since I got the Permobil.  The Invacare was a “Front Wheel drive” chair (big wheels in the front, little wheels in the back)  and it couldn’t turn around in its’ own space.  My Permobil has 6 wheels. The main wheels are more in the middle of the chair, with small front wheels (which also enable me to climb curbs up to 3 inches high) and 2 rear wheels.  The Permobil almost turns in its own space.  I can use it in the house. 

I still own the Manual Chair (in the case of extreme breakdown and for loaning out) and I also still have the little “Jazzy” style chair (Made by Pride) as well as my Travel Scooter. 

Now you should be beginning to see why my Blog is called Lindaonwheels!

I’ll talk about my experience with Vans and Wheelchair Lifts in a future post.

 

 

 

About Linda

Linda, 1992

I am a 64 year old, very happily married lady with a blended family of 3 beautiful grown daughters (with their impressive husbands) who have 2 children each, a son, his ex and their 2 children, and a step-step son and his wife and 2 children.  We have 10 exceptional grandchildren!

I consider myself a Blessed person!  God has been so good to me and I am fortunate to have had a personal relationship with Jesus Christ since I was a young child!

I try to be a positive person and to be an encouragement to others…although I have physical limitations, I try not to allow myself to be defined by what I cannot do, but rather focus on what a good life I have had and how blessed I am to have such a loving, supportive husband and family!

I feel that can still make a difference to help others in spite of my disability.

My Blog is called “Lindaonwheels” because that was the first screen name that I choose way back in the 80’s when I first started using e-mail.

 (No one else has dared to try to take it!)

I have Post Polio Syndrome.  I had Polio at age 2 1/2 in 1952 and was diagnosed with Post Polio Syndrome “officially” in 1986, although I had been experiencing its’ symptoms for about 10 years before …..I now  use a Super-Duper recline/tilt wheelchair part-time.  I also am fortunate to  own an awesome wheelchair accessible van that allows me to have almost complete independence….so my life revolves (pun intended) around my wheels.  I hope that some of what I post will be helpful to those who have just been  diagnosed with PPS…helping to cut through all of the morass of information there is to learn about PPS and still be true to yourself and become an independent handicapped person and live a full, happy life!

 I really feel that by writing this Blog, that I can help others who may have just been diagnosed with PPS or with another similar disability.  Unfortunately, the doctors don’t tell us how to LIVE with the diagnosis that they have just given us.  At first there is a kind of relief…”It” has a NAME!  It was NOT all in my head!  I am NOT “just lazy!”   Then when reality sets in, you start thinking, “What do I do  now?”……In 1986, there wasn’t anyone around to help me…..I had to learn, by trial and error what kind of wheelchairs were out there;  what kind of vehicles; ramps, etc. there were….where do you go to buy them?  

I think I can be of assistance to “newbies”  by sharing my experiences  ….I have been LIVING this since the mid-1980′s.  Instead of sharing one-on-one like I have been doing since the early days of AOL Chat, I think I can reach-and help-many more through the Internet.

There are many subjects to talk about….Some that come to mind right away include:  Are you ready for a motorized Wheelchair?   If so, what kind?;  Buying a Wheelchair accessible van;   Making your home safe and more accessible;  Building a handicapped accessible home;  Pain!;  Guilt because of  not “contributing” like you used to be able to do;  Traveling with a wheelchair;  Breathing problems associated with PPS…….I do not claim to be an expert by any means!  I have no medical degree…….you could think of this site as a sort of  ”users manual”…..These have been my experiences that I will share and you are welcome to come along on my journey of Living with a Disability.