photo courtesy of medpagetoday.com
Our new friend Cherie C. Binns, a registered, MS-certified nurse with a Master of Science in Nursing, has written a wonderful article on how MS prognoses and treatments have changed and improved since she was diagnosed in the 1970s. Thankfully things are really looking up! We’ve shared her article below.
MS: Then and Now
By Cherie C. Binns, RN, BS, MSCN
I have been a nurse since the early 1970s. In one of my medical/surgical nursing courses, I vaguely remember hearing about neuromuscular diseases such as multiple sclerosis (MS), muscular dystrophy (MD), and amyotrophic lateral sclerosis (ALS) and the special nursing-care needs these patients presented. I even saw a few of them in clinical settings prior to graduation. However, it was not until 1992 when I became a home care case manager, that I really began to understand the implications of untreated MS that had run its course.
Of my 30-patient caseload, there were three patients who were receiving regular care as a result of complications of MS. One needed a monthly catheter change and had huge bed sores that were larger than my fist. He was 41 years old and had uncontrollable tremors and spasticity. What time he was not in bed was spent in a motorized wheelchair in a ground-floor apartment, essentially alone except when the aide came in the morning and at night to bathe, dress, and transfer him from bed to wheelchair or back, or when I came in to do wound or catheter care. His wife had left him because his care needs were too great and the resources too small.
The next patient was a retired registered nurse (RN) in her early 60s who was in a hospital bed and never got out of it. Again, monthly catheter changes were required and there was depression. This depression seemed to have no rhyme or reason and was not responding to any treatment offered by her physicians. I started bringing her printed nursing continuing-education programs and her days brightened. Ultimately, she would have post tests completed when I walked in, and, as I was doing her care, we talked about the complexities of caring for the cardiac patient (her field of expertise), and the depression began to lift.
The third patient was a morbidly obese woman. It took three of us just to change her soiled linens, cleanse, and reposition her. She was angry, hostile, and had one of the most difficult personalities I had encountered in all of my career. And yet, she had a sense of humor. I would walk in the door with a joke and the whole tenor of the atmosphere would change as we bantered back and forth while care was administered.
During the time I was providing care for these three individuals and an additional 27 others in their homes, I was having symptoms for more than 15 years that included fatigue, heat intolerance, left foot drop, falls, visual impairment, and bladder emptying problems. My doctors stated that I was working too hard and needed to prioritize and slow down. They even recommended that I stop my participation in a chamber choral group and choir and give up rehearsal times so I could have more energy to devote to work (as if that was the most important part of who they saw me to be).
My long-term symptoms were diagnosed as MS in 1994. Each of the physicians who had cared for me during the prior 15 years all said they had thought it might be MS, but since there was nothing but steroids to treat it and I was a young, active professional, why even introduce the idea of this condition and have me become depressed and less productive?
Because I had a highly specialized skill set as a visiting nurse, my “territory” expanded as patients with pumps and significant wounds and ostomies came on board. I was often driving 60 to 80 miles a day to see five to seven patients. (We had a little over 400 patients on our service at any given time.) I often provided care for patients that might be in “territories” covered by three or four other nurses geographically. This compounded the fatigue, cognitive symptoms, heat-related symptoms, and falls that I had been experiencing. Once the diagnosis was in place, I met with my supervisor and an HR representative to try and get “accommodations” in place to minimize my fatigue. This was the year after ADA went into effect and, as such, the limits were still being tested and we truly did not have good guidelines to help us set those limits.
My supervisor, over the course of the next month, gave me nine additional MS patients that were well out of the geographic territory I was covering because, having MS myself, I would understand them better than the other nurses. That meant that I became the “MS Nurse,” and of the 25 of us who were case managing 30 patients each, I was the only one to care for the MS patients. The MS patients I inherited had bowel- and bladder-management problems, bed sores, contractures, catheters, and a couple even had colostomies since their bowels could not be easily managed any other way. This change in caseload increased my driving distance and the length of my work day and my fatigue and MS symptoms ramped up. Ultimately, I had to stop doing a job that I loved because I just did not have the energy to do it safely.
I tell you this because today, that same group of nurses only has about a half dozen patients with MS. Most of those patients are recovering from a surgery or injury and are not expected to remain in a nurse’s care for the rest of their lives. MS nursing in the 1990s was vastly different from what it is today. There are medications to modify the course of the illness and treat the accompanying symptoms and, as a result, most patients can manage their own care and never become bedridden or homebound.
I encourage each of you reading this, if you have a diagnosis of multiple sclerosis, to get on and stay on some kind of therapy to slow the neurological damage that can come with untreated illness. Exercise, eat well, have outside interests, and keep active. Thirty years ago, you might have been homebound, bedridden, or confined to a wheelchair. Now, with the therapies available to us, you can be vital, active, and a productive member of your community and family for years — even decades after a diagnosis. You can do things that fulfill you, that make you happy, and that help you to feel like you are making a difference.
If you have not already, have a serious discussion with your doctor about ways you can manage your MS in order to be able to do the things you love and that help define who you are. There are currently 9 FDA-approved therapies available that were not available when I was diagnosed and started on this journey. You do not have to end up like those I was treating during my case-management years.
– Cherie C. Binns, RN, MSCN
“In addition to being a practicing nurse who has been in healthcare for 40 years, Binns is an independent multiple sclerosis (MS) certified nurse. She is a member of the Consortium of Multiple Sclerosis Centers, and a member of the International Organization of Multiple Sclerosis Nurses. Binns serves on the medical advisory board for ‘Multiple Sclerosis Views and News.’ She is based in Wakefield, R.I.” (Bio courtesy of medpagetoday.com)
Tags: ADA, ALS, bed sores, catheters, MD, medical pumps, MS, MS certified nurses, ms therapies, ostomies, RN, visiting nurses
I have MS,and was a consulting dietitian working in nursing homes, hospitals and other places a full time RD was not needed. I came into contact with MS patients who were I a nursing home. When I was diagnosed, I first thought I would end up like the patients I saw in nursing homes.
Well, I am no longer working, but at home in LTD. I wish I could work again, but couldn’t due to pain, fatigue and cognitive issues. I suspected I had MS 20 years before my diagnosis. My doctors missed it, until I finally went to see a neurologist on my own. Her specialty was MS, so I was dx. Pretty quickly. It sucks to have MS, but atleast there are DMD today.
Funny to see this as my husband with MS was in the hospital this week, came home last night. As we were catching up he told me his nurse for two of the days was a young woman (27) who had had MS for 11 years.
She was, I gather, symtom free. I thought it ironic that he, my husband, has close to the absolute worst form of the disease. And that is how MS is – a wide spectrum of symptoms and unpredictability.
Your account was interesting to read. We have many visiting nurses and I could really picture your day – amazing and commendable that you carried on for so long. Here our biggest problem is getting competent help. In a way I’ve become a nurse and with the internet I am assured of what is going on ie. he was prescribed an anti-fungal – I knew in advance any contraindications he would have with the drugs he was already on. I guess that’s my personality – but it keeps me sane and
not so depressed and bored with our circumstances. He is in bed 21 of the 24 hours.
Oh, and I’m so proud of this – he had a potential bed sore that began ?? years ago – we the aide and I have brought it to the point when the skin specialist in the hospital came by she said, “oh that’s nothing” – meantime they didn’t have a fluctuating air mattress on the floor and he came home a little sore. ! This is a top shelf hospital in Newport Beach.
I’d prefer other things to be proud of and am almost afraid to jinx things by saying this ( :