by Tyra Phipps, Ed.D. (tyra.phipps@gmail.com)

It was late spring 2011, when I was taken to the Western Maryland Health System Hospital and was later transferred to the WMHS Frostburg Nursing Home and Rehab Center (picture to the right) in Frostburg, Maryland.  This is the story I lived in trying to recover from a setback called an exacerbation with multiple sclerosis that lasted a few months.  While in the hospital, I knew there was something seriously wrong, yet both of the local neurologists said that I was fine.  They ordered an MRI.  The physicians still insisted that nothing was going on with my MS.  One neurologist told me that I had MS so long that all of my nerve endings were burned out.  He also told me he would put me on much stronger IV medicine, as opposed to Copaxone which is a daily injection.  I was not there for that kind of information.  I knew multiple sclerosis was on the move and I was in the middle of an attack somewhere in my system.

I saw a beautiful nurse with blonde hair and a rolling cart that came into my room.  She was kind and let me see the radiology report on her computer monitor.  On the very first page it read that multiple sclerosis-active state at the C levels of the spine.  There it was plain as day.   I knew something was going on with my condition and I needed help.  She told me to take my time reading.  I had read enough on the first page to know that something was taking away the use of my arms and legs.  I called attention to the oversight with the neurologists, and I did get an apology.  The IV had already been removed from my arm and my veins are small, so I had to go through that needle process again in order to get Solu-Medrol intravenously administered.  There was three day dose of a steroid to reduce the inflammation.  During the process, heart rate is monitored.  I had insulin four times a day.  Ankles, feet, and also hands swell.  It is a process of continually checking vitals, but the steroid helped.

While at Western Maryland Hospital, I remember a very tall woman from the dietary area that always helped find more food.  She did everything she could to get what I wanted to eat and I thought the food was pretty good.  She always had ideas about food options and took her time listening to my requests.  There was also a very tall African-American woman who was a CNA and I believe sixty years old at the time.  I did not know that I was also being given morphine for the pain.  I stood up with help to transfer to a bedside commode, only my legs had absolutely no feeling and I collapsed.  She caught me!  I had already broken a hip and pelvis in previous falls.  I am lucky that CNA was so alert.  She frequently came in to help me, when other nurses stayed at the nursing station and would not acknowledge my call bell.  I needed help transferring to and from a bedside commode.  At my worst, it took three people to assist me.  I knew I would need rehabilitation.

Physical therapists were coming to my room.  I met a stout man with some graying in his hair, wearing glasses and a smile.  He jokingly commented that weather does this to multiple sclerosis patients.  He explained that whenever the weather changes, we seem to have more admissions through the emergency room.  I knew he would help me.  He and his assistant got me to stand by the hospital bed using the hand rail, and encouraging words.  I remember asking them to please make sure that my hospital gown was covering me.  The assistant reached around quickly and made sure that my hospital gown wrapped around my backside.  I stood for more than a minute.  It is also important to note that I stood with them!  There was another female physical therapist, young and eager to help.  She commented that I was the kind of motivated patient they were happy to work with in rehab.  When she asked me about trying parallel bars, I immediately said, “Yes!”  Without hesitating, she wheeled me over to the physical therapy room and lined me up in front of the parallel bars.  It was as if she knew that waiting would only cause anxiety, so there was a gait belt and another assistant to help pull the wheelchair behind me.  There was no time to think.  I stood up and I will never forget walking nine steps.  I walked nine steps!  It did not matter that I needed to shower or their help, only that I was at the parallel bars and I walked nine steps!  I had help, but they gave me something bigger.  I had hope of recovery.

I saw the physical therapist, who believed weather changes made a difference in multiple sclerosis patients on another occasion.  I have had MS all of my life.  At the time I was 61 years old.  I am highly educated.  In a former life, I was a playing and teaching tennis professional.  I did not believe that anyone could teach me anything, yet this man was thinking outside the box.  Instead of the usual exercises, he told me to think about my shoulder, or a knee, and have my hand try to find it.  What a brilliant and fun way to try and regain the use of my arms and hands.  His approach helped calm the anxiety of not knowing what this MS attack would take away.  He was good!  I continued the exercises in my room.  There was also academic work to finish the semester.

I had a wonderful teaching assistant at the end of that academic year and we were still able to finish all the classes.  The hospital had Wi-Fi.  There was much to do online and in the classroom with collegial coverage.  Within about five days of hospitalization, I had visions of regaining some normalcy in my life.  Then, all of a sudden I learned that my Blue Cross Blue Shield CareFirst expensive health insurance policy would not pay for rehab in the hospital.  A social worker or someone from WMHS told me that I had to be transferred to a nursing home for rehabilitation, but I knew nothing about what the options were in the area.  There was no one advocating for me.  I was lucky to have the CNA who helped me in my apartment bring medicine to the hospital, because the hospital pharmacy would not purchase the expensive medicine called Copaxone.  Even though I was fearful of alienating anyone, I wanted to get rehab in the hospital where these people were helping me and I was demonstrating a modicum of recovery.  I had corrected the neurologists, tolerated Solu-Medrol and morphine, navigated through a maze of hospitalists and PAs.  I had even asked to get help from Delegate Kevin Kelly, who I knew was very good at navigating the insurance maze.  I was told by a representative from the hospital that there was no reason to call Delegate Kelly, because they did not want to get him involved.

I was assured that something would be done.  I wanted rehab right where I was at Western Maryland Health System Hospital.  By the sixth or seven day, nursing aides prepared me to leave the hospital for some nursing home and rehab.  I was whisked down the hall to an ambulance service that was not covered by my Blue Cross Blue Shield CareFirst policy.  While I was making the trip from Cumberland to Frostburg with the rescue squad, I had no idea that I would later learn the cost was over $500.  I was transported to Western Maryland Health System Frostburg Nursing and Rehab Center.  Despite being told that I would have other rehab patients around me, I landed in a room that was cramped with a large credenza and a huge television.  The channel was set to the NBA playoffs and the volume was loud.  An elderly woman slumped over in a bed occasionally yelling for her deceased husband.  A nursing aide called me, “Babe.”  She was trying to explain how they were going to transfer me.  Another nursing aide was older, calm, and helping in any way she could because she must have sensed the anxiety on my face.  I was in culture shock.  I could not believe my surroundings, but knew that I would not get better in that situation.

I was lucky that the CNA I paid to help me also drove behind the ambulance and met me at the nursing home.  I knew someone.  The manager came in with so much paperwork and started talking about Medicare, my rights, what the nursing home will provide and I could only think about how long it had been since I had any food.  It turned out that I had to be in that facility by 5 p.m. and that was the reason for the late, sudden departure from the hospital.  There were rules I did not understand, but I knew I was in the middle of a bad multiple sclerosis exacerbation and an overweight nursing aide with the smell of tobacco had called me, “Babe.”  I was scared.

I had to go to the bathroom.  The more experienced nursing aide came back to help me.  I told her she had such a pretty smile.  She quickly commented, “These are dentures.”  I tried to reassure her that her smile was still pretty.  She talked about the small doorways.  The building is so old.  The room was so packed with furnishings.  She maneuvered the wheelchair around the obstacles in the room and into the bathroom to the place where I could stand and hold on to the grab bar.  The toilet was low to the floor.  It looked very daunting.  This nice aide found a bedside commode frame and put that over the toilet.  Somehow we would manage.  It was not easy.  The toilet seat was broken in the front.  She had an idea.  She asked me if I would be okay for just a few minutes and I told her that I was stable.  I was sitting in the wheelchair.  After a brief departure, she returned with white adhesive tape and began wrapping it around the crack in the front of the toilet seat.  It held!  The bathroom process was completed.  I was afraid to think about what might happen next.  Needing to eat and wanting sleep from utter exhaustion, I was stuck in a dingy, crowded room with the NBA playoffs to worsening my headache.  I cried and wondered how rehabilitation was defined in this nursing home.

Therapy started the next day in a small triangle shaped room that was very hot.  There were large windows allowing in the sun’s rays.  Heat of any kind is the bane of existence for multiple sclerosis patients.  I wondered how I could possibly exercise or recover.  I had complained about the television noise.  While I was in therapy on the first day, my items were moved to another room where there were no televisions.  I went through the basic physical therapy and occupational therapy evaluations.  I was exhausted.  Then I left for my new surroundings with the therapist pushing my wheelchair.  I was left in my newly assigned room and recognized some of my belongings.  I noticed a woman in a hospital bed sharing the room with me.

She was elderly and sometimes smiled.  She could not talk.  She had a feeding tube.  I tried to pull the curtain so as not to disturb her.  There was a window in the room that faced the wall.  There were rocks on the ground and a small bush.  This room was close to the entrance, and people were constantly yelling to someone down the hallway.  The air conditioner was not working, but maintenance had only been called to make repairs.  The bathroom was larger, so there was room to turn around a wheelchair.  I heard a beeping noise the very first day.  It was the noise of the feeding tube machine alerting a problem.  I pushed the call bell to get help for my roommate.

I was given trays of food in the room.  My insurance policy mandated that I have physical therapy and occupational therapy every day, including weekends.  I met many different nursing aides.  Somehow the word got to the nursing home that I was a three-person assist, yet I knew I could work with just one person.  I began trying to teach nursing aides how to get me from the wheelchair to the bed.  Some were very helpful and attentive.  One scared me.  Although she entered the room with another aide, she refused to listen about what I could do.  Within minutes she grabbed my right arm, pulled me out of the bed and I almost landed on the floor.  The other aide had the wheelchair and somehow I managed to grab the armrest to save myself from falling.  I knew my right forearm hurt.  I knew I had to go to the bathroom.  This heartless nursing aide had already been in my room telling me that I should, “Poop and pee in ten minutes.”  She had previously told me she preferred taking care of the men in the morning because they were easier to shave, and then she would take care of the women.  She had informed me that I would just have to, “Hold it.”  I knew with those previous encounters there was going to be much trouble working with her.  My arm hurt from that transfer.

There were fingerprint and thumbprint bruises on my arm by the next day.  I also heard the same frightening nursing aide tell my roommate, “Don’t you be pissy with me today.”  I was waiting on the other side of the worn curtain trying to listen closely.  I was accompanied by my own privately hired CNA, who was collecting some laundry for me.  We looked at each other in disbelief.  This poor woman who had suffered a stroke and needed to be changed could not even begin to speak in her own defense.  I had to do something.  I showed the bruises to an RN.  Other nurses had to look at my arm.  There was an investigation.  I met with the interim director, and she assured me that they would not tolerate this behavior and that was not how nurses are supposed to help people.  I was lucky that my private CNA had been a witness to corroborate my story of how the elderly woman was treated and I had bruises.  Another nurse manager asked me if I wanted to press criminal charges.  I told her, “No, I am satisfied with the way things were handled internally.”  The nursing aide who had insulted the stroke victim and thrown me across the floor to a wheelchair from the hospital bed had been fired.

There was only one shower a week.  I was doing physical and occupational therapy daily and needed more showers.  The interim director assured me that I could have more showers.  Finding an aide to help me was another matter.  There was one nursing aide who was very slight in frame and had Bell’s palsy.  She tried to help everyone with a pleasant smile.  She was very kind to me and worked in an extra shower.  Another nursing aide refrained from taking vitals during the night because she knew how important my sleep was in the recovery process.  I thanked her over and over again.  I only wanted to rest whenever I could and try to visualize myelin repairing itself on my spine.  So many times it was absolutely impossible to find the quiet I needed to think good healing thoughts.

The clanging of the housekeeping closet door, filling the metal buckets with water, yelling and hollering started as early as 5:30 a.m. in the morning.  I was located close to an entrance.  What happened after the housekeeping closet opened for daily cleanup were the loud greetings of hello and then goodbye during shift change.  I even complained that I would prefer the door to my room closed, yet somehow that was not allowed by law.  There was yelling during the night from other patients.  There were nurses and nursing aides who yelled so loud, that I could hear them although they were more than fifty feet down the hallway.  A very large television had been installed at the entrance waiting area, which only added to the noise of televisions for each person in every room.  It was a cacophony of sounds blaring and none of them had any healing properties.  I asked the nursing aide to request of the woman across the hall to turn down her television.  The patient acquiesced making CMT less audible and that helped.

The only other place for solace was a garden located close to the Alzheimer’s unit.  Even though there were pretty trees and hummingbirds, I heard the Alzheimer’s patients yelling in the background through glass doors that were locked.  I saw another woman holding a doll.  I tried to find other places for meditative moments, but a television had also been installed in the library area.  I was told there was a computer in this nursing home.  It was also located in the library area, but probably more than ten years old.  There was also no Wi-Fi or any means of connecting online to complete the semester.  I relied on my teaching assistant to visit back and forth with progress reports.  She was a godsend.

The therapy was not what I would call helpful.  I rested as much as I could by putting my head on the tray table in my room.  I think those respites helped the most.  In the therapy room, young people insisted on using the table mat and doing traditional exercises with many repetitions.  I am beyond repetitions.  I am beyond strength building with my multiple sclerosis.  I was only trying to recover and become functional again on my own.  There was one man who was probably in his 40s and did a good job of taking care of the small therapy short respites room.  He also did some research about my predicament and thought about how he could help me, but I was not assigned to him.  Much as I like the exuberance of young people trying to help elderly people, they were not informed about multiple sclerosis patients.  An active state of multiple sclerosis is not the time for active physical or occupational therapy.  That approach can be quite detrimental.  In the first place, the multiple sclerosis body is already taxed without any exacerbation.  I knew I was in a long relapse and needed slow and steady strength building exercises.  I could only try to be optimistic despite how hot it was in the room and how much spasticity had been aggravated by traditional therapy plans.  When two weeks had lapsed, I was told there would be a home evaluation.

I did not know what to expect, but a van took me to my apartment and I performed my usual chores of transferring into a stair glide, going up the steps, transferring to the power chair and starting to navigate around the apartment.  It felt good to be home if only for a while.  I was bothered by the driver of the van, who left it running the entire time we were in my apartment.  I was distracted by thinking of my neighbors with open windows and the exhaust fumes from idling van.  Even when I mentioned it, the driver said it did not matter.  All of us were in my apartment for more than an hour.  Nonetheless, that part of the home evaluation was completed.  I had passed the test.  I was then taken back to the nursing home for final days of therapy.

I was discharged at the end of three weeks and happy to return home, but knew I would need help.  Two days later I found myself sick.  I called 911 and was taken immediately to the emergency room at the hospital.  I was vomiting.  I had terrible vertigo.  I never had symptoms like that with my multiple sclerosis.  Another week in the hospital and no one knew exactly what I had, but the neurologist agreed that it was not another multiple sclerosis event.  It seemed to me that I picked up something in the nursing home that was viral in nature.  It gave me another glimpse of the hospital problems.  I went back to my apartment again, but prior to leaving the hospital I agreed to home therapy.  This was an even bigger nightmare.

I had another physical therapy evaluation.  I had to work with another physical therapist assistant who was very overweight.  She talked incessantly about her boyfriend and her children.  She had an attitude about everything I suggested that we try.  I even attempted to show her the manual from the multiple sclerosis society with recommendations for passive and active therapy.  She did not even acknowledge the manual I was holding.  I did not improve, but was more determined to get better on my own.  I devised my own exercise plan and worked with my privately hired CNA to help me three or four days a week.  That seemed to be more helpful than the exhaustive approach of therapy at the nursing home, or outpatient home-based therapy.

I have been fortunate to work and hire good home help that I could pay for and I had kind neighbors.  I do not know how I survived the Western Maryland Health System experience.  I still think back to a kind nursing aide that was in the hospital.  She located and blew up an inflatable mattress to help with pressure sores and pain in my back.  I think about the tall African-American nursing aide that caught me before I fell.  I reflect upon a registered nurse who told me more about positioning in the bed to relieve some of the places that hurt so much and said that if a nursing aide did not know what to do, then ring for her.  I also remember the noise of televisions in the hospital and one woman who insisted on playing it all night.  On another occasion in the hospital, two people were snoring on the other side of the curtain and still there was a loud television.  Cell phones were constantly ringing.  Medical people were trying to get assistance of all kinds from all types of people at all levels.  I remember the neurologists who did not even read about the active state of multiple sclerosis on the radiology report. 

I also wonder how I found the strength to make sure a nursing aide was fired from the Western Maryland Health System Frostburg Nursing and Rehab Center.  I think about the fact that there were only two cordless telephones for more than one hundred people in that nursing home.  There were no phones in the rooms.  Yet, my best friend in Indianapolis got through to me somehow on one of those cordless phones and helped me find the humor in the situation.  I also remember the wonderful people who brought me real coffee with caffeine in it from the plush carpeted administrative area.  There was no caffeinated coffee available for patients.  I complained and brought about a change whereby someone had a choice of caffeinated drinks and it took effect the day after I left!  Nonetheless, the manager brought me caffeinated coffee the morning of my departure and it was such a nice gesture.  There were young people from the therapy group who came by to wish me well before I left.

I remember the garden and statues of saints.  The facility was formerly a Catholic sponsored nursing home called St. Vincent de Paul.  Was this a really good nursing home at some earlier point in time?  The spring, 2011, WMHS hospital and Frostburg Nursing and Rehab experience still weigh heavily on my mind. 

In 2020, University of Pittsburgh Medical Center took over ownership of Western Maryland Health Systems.  It is now known as UMPC Western Maryland.



January, 2013

 June, 2020