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To Be or Not to Be

Posted By Suzanne Mintz, Monday, April 11, 2016
Updated: Monday, April 11, 2016


This piece is a reprint from March 2015. Click here for original post. 

In the past few months my husband Steven has added two more doctors to his alphabet soup of medical professionals, a pulmonologist and a rheumatologist. He now has eight physicians in charge of various parts of his body.

We share a family doc, but Steven also has a neurologist for his MS, an orthopedist for his osteoporosis, a physiatrist who focuses on his functioning, an ophthalmologistwho keeps a watch on his optic nerve since MS can affect eyesight, a urologist to deal with his neurogenic bladder and accompanying bladder stones, a physical therapist who comes to the house twice a week, an occasional visit to a podiatrist to deal with cracking between his toes, and of course the usual bi-annual visit to the dentist.

The recent addition of the pulmonologist and the rheumatologist has really scared us because their specialties deal with hidden problems that are caused by the pernicious degradation of his body. Everyone focuses so intently on the visible aspects of his disability, the fact that he is in a wheelchair, his increasing inability to feed himself and to push the computer keys, but it is the hidden degeneration of his body that is most worrisome to us. Sometimes it really gets us down, but then we remember how lucky we are to have each other, live near our daughter, have the funds to purchase the items and services we need and overall a good quality of life.

Steven’s neck has been stiff for a long time, and a MRI, the first he’s had since early on in the course of his disease, has shown the existence of osteoarthritis. It explains the intense neck pain he feels, its poor range of motion, and the dull ache in the lower back of his head. Apparently there isn’t all that much that can be done about it; "Take ibuprophen” the rheumatologist said. "It will reduce some of the inflammation and the associated pain, but it might also cause stomach problems. If so you’ll need to add an antacid to your medication regimen”. He also suggested that Steven get a soft collar for his neck to help relieve the pressure that accompanies each movement.

In the past few months, Steven has added two more doctors to his alphabet soup of medical professionals



Steven went to the pulmonologist at the suggestion of our primary care doc who said he thought Steven’s voice had been getting softer. With pneumonia often being the cause of death for people with MS, he wanted to make sure Steven’s lungs were functioning properly. It turns out they aren’t. The breathing tests Steven underwent showed how abnormal his lung function actually is. One of the biggest problems is his inability to expel all of the carbon dioxide from his lungs. The pulmonologist scheduled a sleep study. He thought it would show sleep apnea and therefore point to the need for Steven to get a continuous pulmonary air pressure machine, generally referred to by its initials, CPAP. Because the machine forces constant air into your lungs through a tube connected to nose "pillows”, soft rubbery nasal inserts, it ensures the proper flow of gases in and gases out.


Steven was diagnosed with MS in 1974 when he was 31. He turned 71 this past summer so we’ve been dealing with MS for 40 years now. The heavy duty caregiving began about 20 years ago when he got his first wheelchair, and it’s been downhill ever since.


The neurologist surprised us recently when he said Steven may not actually have MS, that there is some thought in the medical community that primary progressive MS, which is Steven’s diagnosis, may not be MS at all because the only things it seems to have in common with classic MS is that it attacks the body early in one’s adulthood and causes the breakdown of myelin and the consequent scar tissue. Steven’s disease, whatever it is, only attacks the nerves in the spinal cord, not those in the brain and it isn’t characterized by relapses and remissions, but is rather a slow but steady degeneration. Fortunately it doesn’t show any cognitive impact: Three cheers for that!

What matters is that he is losing more and more function

In the long run, whether Steven has MS or something that looks like MS doesn’t really matter. What matters is that he is losing more and more function, inside and out, and there isn’t much we can do about it. Coupled with the normal changes that come with aging, our abnormal life is continually becoming more so.


 Despite the difficulty we refuse to let all-of-this stop us from living as full a life as possible. Steven has been retired for three and a half years and I for one year, so we have more time and flexibility regarding what things we can do and when we can do them. Why battle weekend crowds at the movies when we can go on a weekday afternoon? We recently got back from a vacation to Newport RI. It’s a short flight to Providence from where we live and we were able to rent an accessible minivan for the 40 minute drive down to Newport. Once there we "walked” to as many places as we could and had a grand time. The concierge at our hotel found out about a boat that could handle Steven’s wheelchair and we took a lovely tour around the harbor. We went to visit the extraordinarily ostentatious Vanderbilt summer "cottage” and walked along the cliff. We ate lobster and saw fabulous sunsets. We were always back in our room by 9:30 completely worn out from the day’s activities. We slept in taking our time to get started the next day, doing everything at our own pace.

To be fully involved in living or to let MS control our lives, that is the question. For us the answer is simple: Do as much as you can with what you’ve got and enjoy life as much as possible. This summer we hope to go to Santa Fe, one of our favorite places.

Social entrepreneur, family caregiver thought leader, author, speaker, advocate - 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now run her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own. Quote: "Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.

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