Let's Talk About Aging and Multiple Sclerosis
I was thrilled when I was invited to be a patient expert for the website LiveWise MS. Along with other experts (mainly nurse practitioners), LiveWise MS offers pertinent content for MS patients. What makes the site particularly unique is that every article is reviewed and approved by the International Organization of Multiple Sclerosis Nurses (IOMSN), a premier international organization serving the needs of nurses focusing on MS care.
What does this mean to the reader? All medical content appearing on the website is both trustworthy and valuable.
One of the incredible experts I met at LiveWise is Marijean Buhse, a Clinical Professor in the School of Nursing at Stony Brook University and the Chair of the Advanced Practice Graduate Nursing Program. She is also a Nurse Practitioner at South Shore Neurologic in Long Island, New York and a member of IOMSN.
After reading Marijean’s bio I knew I wanted to interview her:
“Much of her work focuses on the older person with MS and the effect on quality of life, social issues and impact on caregivers.”
It’s no secret I’m now in my 31st year of living with MS and rounding up toward age sixty. I’ve had aging and MS on my mind for awhile but always felt that subject was largely understudied. What’s generally discussed are issues relevant to a younger population. And for good reason. A large percentage of people are in their twenties and thirties when they receive their initial diagnosis.
According to The National Multiple Sclerosis Society’s webpage:
“We all grow older- including people with MS. MS is often described as a disease of young and middle-aged adults. Yet a significant number of all people living with MS are 65 or older.
Until recently, little attention was paid to the issues or challenges of aging with MS, and very few resources or services specifically designed for older adults with MS were readily available. However, there is a growing interest in aging with MS and recognition that more attention must be paid to this important topic.”
I thought I’d begin to fill in the gaps of information on the subject of aging and MS by interviewing Marijean. She graciously agreed and I was thrilled. The following is our interview. I hope you learn as much as I did.
Marijean, what is your main focus of work regarding aging and MS? How long have you been focusing on this area?
I have been a nurse practitioner in MS since 1998. I have been interested in persons aging with chronic diseases for many years and have cared for people with MS as they got older.
I first received federal funding to teach nurses how to care for older persons with chronic disease who live in their community in 2005. From that grant, I received funding to study caregivers and their quality of life in caring for their loved one with MS. This was my first study which revealed who was caring for older people with MS and what their needs are.
Then I became interested in the older person with MS and their caregivers. In 2010, I received funding to study quality of life of both the person and their caregiver. I concentrated on people who lived in the community, not those who lived in facilities.
I also focused on those people who went to MS Centers. I did not have any participants who went to general neurologists.
Can you provide any article or studies you’ve recently been involved with so we can learn from them?
These are the articles I have had published:
- Buhse, M. (2015). The Elderly Person with MS: Clinical Implications for the Increasing Lifespan. Journal of Neuroscience Nursing. Dec;47(6):333-9.
- Buhse, M., Della Ratta, C., Galiczewski, J., Eckhardt, P. (2015). Caregivers of older persons with MS: determinants of health-related quality of life. Journal of Neuroscience Nursing. 47:2, E2-E12, PMID: 24688350
- Buhse, M, Banker, W. & Clement, L. (2014). Multiple Sclerosis and the Elderly: Perceptions of Health Related Quality of Life, International Journal of MS Care,16(1): 10–19. , PMID: 25700198
- Buhse, M. (2008). Assessment of Caregiver Burden in Families of Persons with Multiple Sclerosis. Journal of Neuroscience Nursing. 40, (1): 25-3. PMID: 18330407
What research would you like to see take place on MS and aging? Why do you think this is particularly important?
There are a few ideas that I would like to see done with older people with MS. First, none of the DMT studies have been done on people over the age of 55 or those with disability (more than 6 on the EDSS scale). However, many people over 55 are on DMT’s and we are not sure how they are truly doing.
As a clinician, you try to measure progression but there are so many variables, especially with the neurological exam on older people. I do understand that clinical trials are done with younger people because older folk may have confounding factors, such as hypertension, arthritis, high cholesterol, and history of other chronic diseases.
This makes a clinical trial very difficult to do. However, if we could study patients on DMT’s from the beginning and follow them longitudinally, we could get a lot of data since patients with MS live an almost normal lifespan.
Secondly, I would like to see what keeps a marriage or relationship together through the difficulties of MS. What do both parties have to have to stay together?
In my study, I had over 100 people for which their caregivers were their spouses and it was very apparent that love had prevailed. So what keeps them together despite physical and mental changes?
What are the physical and mental changes of MS patients over 50?
Some of the changes that occur with older folk with MS are the same as those that occur with aging. The most common cause of disability and pain in older adults is arthritis. This will most likely occur in MS patients also and may add to existing disability.
Sometimes it is difficult to tell the difference between MS pain and other types of pain. Also, more than 50% of the population of the US will have more than 1 chronic disease as they age. The other diseases need to be taken care of by their primary care provider and shared with their MS specialist.
Mental changes in MS may occur much faster than the typical aging adult. I often hear patients state that the reason they forget something is because of their age. I don’t agree with that and suggest that it is most likely their MS.
Rarely do I see persons with MS and any other kind of dementia, such as Alzheimer's. In nineteen years of doing this, I have only seen 2 patients with both.
However, there are some faster cognitive changes in MS and they need to be screened for either using SDMT or computerized testing.
What about age and the progression of MS? Can you discuss the likelihood of this occurring?
There really is no good answer for this. We do know that some women who go through menopause can have faster progression than pre-menopause. We hypothesize that this is because of lack of estrogen and more testosterone. However, this does not occur in all women and there is no evidence on what to do.
Menopausal symptoms such as hot flashes, irritability and sleep disturbance can overlap MS symptoms so it is important to discuss with their health care provider.
As for men, it is well known that their disease course tends to be later and more progressive in nature. There is no certain age about this but DMT’s have shown decreases in disability and should be used.
What is the most common subject you discuss with patients over 50 about their MS? What are their main concerns and what is your advice?
I discuss DMT’s and staying on them. That is very important and although we may not have good evidence in this, it is still a good idea to remain on drugs that change the course of the disease and may decrease progression.
Also, I frequently talk about their primary care needs. Many patients do not see a primary care provider or a gynecologist or other providers. All routine screenings have to be completed to prevent other diseases with their complications.
Many patients do not get a colonoscopy, a pelvic exam, mammogram, etc. Also, routine bloodwork for cholesterol and anemia should be checked yearly.
Patients need skin checks, eye exams (it is not always MS), and non-live vaccinations including the flu shot, pneumonia shot and tetanus as prescribed.
Exercise and diet are always part of my talk. Any form of exercise is important, even if the patient’s legs are disabled, they should try to keep their arms strong.
Obesity adds to disability so people should try to stay within their normal ranges and eating a moderate diet can help. I am a fan of Weight Watchers because it promotes lifestyle changes.
I’d like to thank Marijean for taking the time to shed some light on this important topic. I hope the conversation on aging and MS continues within our community and throughout the medical community.
Does your employer provide workplace accommodations due to your MS?