Life Changes - I met a man......

When no longer able to continue working as a ER physician, I have trickled down the medical totem pole holding various positions, just so I could continue to work in medicine. In 2008, that was as a Registered Nurse. It was one of the last times I would work in this capacity before trickling down to the position of Certified Nursing Assistant - probably the lowest spot on the totem pole - before ending up on Disability.

It is January 2008 and I am employed for an agency that sends you to different medical facilities when they are short-staffed. It was to be a one week assignment and this was my last night. That night, I worked at the hospital on 11PM to 7AM shift. I met a 56 year old man with Multiple Sclerosis who was diagnosed in 1991 with Relapsing Remitting Multiple Sclerosis. In 2003, he tells me it changed to "Secondary Progressive" (SPMS) and he is now paralyzed from the waist down. He has a Foley catheter in place at all times. He has no issues with eating, speaking, thinking, or expressing himself. But he is totally dependent on others for help, to turn him, dress him, cook and set up his food tray, dress his wounds, and administer injectable medications .

And that makes him mad.

Although Thomas was not on my assignment, one of the other nurses asked me to come help her turn him over, so she could dress his wound, which had tunneled to almost 7 centimeters. It was a nasty wound. He was admitted to this hospital from a nursing home for sepsis and for 21 days of IV antibiotics. He told me he is the youngest man in the nursing home and he resents being there. He feels he has no choices left in his life and he is very depressed.

His wife left him two years after his diagnosis because she did not want to "waste her life while he was wasting away." She took their two children with her and moved to Arizona. He tried moving there to give the marriage another try, but the heat was killing him. So he came back to New Jersey, lived in an apartment for a few years, then in 2007 he was admitted to a nursing home.

Thomas is a very nice man, very personable and genuinely glad and thankful for any help that comes his way. He enjoys people who talk to him like he is still an intelligent, viable human being. I think that sometimes we forget that the disease has afflicted the body and, for the most part, the mind is still intact.

As we dressed his wound and administered his medications, I engaged him in as much conversation as possible regarding his life's work, his family, his disease....what drugs he had been taking for MS, what he did for a living, his opinions on MS in general...and I think you can guess what he said about that!

He told me he had started out on Betaseron, then switched to Avonex, then to Copaxone. His doctor switched him from one to another as soon as they became available on the market and advised him that the changes were to his benefit. Although he tells me that he didn't have any problem with Betaseron (injections every other day), he agreed to switch to Avonex because it was given once a week. When the flu symptoms became unbearable (a common side effect) and Copaxone (a daily injection) became available, he was switched again.

In 2003, with his new SPMS diagnosis, the doctor stopped all MS drugs and he is only taking what he needs to manage his diabetes, GERDS, neuropathies, depression, sleeping pill, and something for his nerves. His doctor told him that it was senseless to keep wasting money on the MS drugs when it seemed they weren't doing any good for him. The newest drug, Tysabri, was not offered to him, but he told me he would never take it anyway because of the bad press he had heard and read about it causing brain cancer and some deaths from it.

I do not usually go around telling patients that I have MS. I guess part of the reason is because I try to keep most of my life private from my work life. But another reason is that MS patients look at me, and then they look at themselves, and they compare. They want to know what you are doing that you can still walk, move around, work, etc and they can't. I try not to go into any amount of detail because it comes off as preaching. Also, my co-workers at this hospital did not know I have MS and I had no intention of sharing that with them at that time.

When the nurse I was helping left the room, Thomas became very depressed and told me that his doctor has given up on him. He no longer condones physical therapy for him at the nursing home even though Medicare would pay for it. He said the doctor said it wouldn't do any good because of his degree of paralysis.

I asked.... what about keeping your muscles toned and mobility and strengthening and range of motion? He said the doctor never mentioned it. I asked him what he thought -- did he feel like throwing in the towel or did he want the physical therapy for toning, etc.? He said he did want it, but if the doctor doesn't order it, he can't get it.

Okay, so I broke down and told him I also have MS. I knew his doctor well; I had gone to him many years ago. He is one of the most respected doctors in this area and often does alot of second opinions for other doctors. I don't like him. I met him the second year after my diagnosis as a second opinion. I was in my fourth year of medical school and struggling badly with fatigue and keeping to a rigorous schedule. He told me I would be in a wheelchair within ten years, to forget having children, and just go home and love my husband. As far as medical school was concerned, he said I was chasing rainbows.

I told this to Thomas and he was not surprised. It was standard spiel for this doctor. Thomas continues to go to the doctor because of his great reputation, not because he likes him. He was told a similar story in 1991 and unfortunately for Thomas, it turned out to be true.

I asked him if he had heard of Hyperbaric Oxygen Therapy for his wound and he said no, it was never offered or discussed with him. I told him what I knew about it, that it could take as many as 20 sessions for the size of his wound, but it could be remarkably improved. He told me he has had the wound since January 2007 and it is not getting better, it is getting worse. I could see from the photos in his chart that it was indeed getting worse. Part of the problem was that he was not getting his positions changed at the nursing home so that the area could be relieved of pressure every few hours. The other part of the problem was the nursing home did not offer routine wound care and he was being sent out to a wound care facility twice a week for irrigating and change of dressings. Clearly it was not enough or it would not have progressed to 7 centimeters deep.

He asked what I am doing for my MS and I told him.... but I also said I have had some bad times too, to the point where I was not walking or even able to eat anything that didn't come from the blender. I still have swallowing issues. I told him mobility is paramount and it is sooooo important to keep moving, even if it is just a little while each day - just do something as a matter of routine. Good for mind, body and soul.

When our talk seemed to come to an end, I went to write my nurses notes and I asked his nurse to mention HBO Therapy to his doctor for wound care in her nurse notes. I also asked her to stress that Thomas needs and wants to be in a toning exercise program, so that he doesn't lose what function he has in his upper body.

I don't know if it will do any good or not, but I knew I could not go home that day without at least trying to get the word out to Thomas' doctor via his nurse.

I was not scheduled to work there again until a nurse went on maternity duty for 6 weeks in April. And, by that time Thomas most likely will not be a patient there anymore. He is only being treated with IV antibiotics for 21 days and then sent back to nursing home.

The nicest thing that happened was that Thomas told me that, knowing I have MS and seeing me move around, knowing I have had it since 1976, it gives him some hope that maybe an exercise routine for toning and mobility might be a good thing for him. He hasn't been able to stand for quite a few years now, but he doesn't want to lose his upper body control since he has already lost his lower body control. He tells me he doesn't need to buy new shoes as often as he used to!

And then he told me he was going to "stand up" to his doctor. And we both laughed.

I met a man that night.....and although he tells me I made a difference in his life that night, he has made the difference in mine.

© by Anne DiGeorge