Category: <span>MS Support Groups</span>

Have you ever listened to a doctor’s advice and thought, “Quack!”?

It happens.

Perhaps his medical skills were impeccable, but his advice failed to consider you and your non-medical needs.

One of my wife’s neurologists pushed her to consider having a third child. “Pregnancy reduces the symptoms of MS,” he stated.

“It also results in another child!”, my wife countered. “And I know I won’t have the stamina for that when the MS symptoms return!”

I was reminded of the pregnancy and Multiple Sclerosis issue while reading the latest issue of the Multiple Sclerosis Foundation’s Support Group News, a newsletter promoting participation in support groups. (Free subscriptions are available at http://www.msfocus.org).

“Moms with MS Form Online Community” describes an online community founded by Kristin Bennett exclusively for mothers and mothers-to-be who are diagnosed with Multiple Sclerosis. The “Moms with MS” website requires registration – which I didn’t do because I’m not a mom.

However, based on the information in the Support Group News article about MomsWithMS.com, if you’re a mom or “mom to be”, I suggest you explore the MomsWithMS website. This online support group has 450 members and is doing great things to provide support and information for moms with multiple sclerosis.

Resource: MomsWithMS.com

MS Support Groups

MS has a history. I highly recommend you explore it for the “big picture” it provides.

“Multiple Sclerosis: a journey through time” is an audiovisual tour of the history of multiple sclerosis. Available in English and German, the online presentation is offered by the German MS Society, Deutsche Multiple Sklerose Gesellschaft (DMSG) and AMSEL Association, a self-help and advocacy organization for MS patients in Baden-Wuerttemberg.

The History of MS gives viewers an excellent overview of the history of this neurological disease beginning in 1395 AD. It’s a very useful educational tool. For example, I didn’t know lumbar punctures have been used for diagnostic purposes since 1913 or that 1972 brought the use of visually evoked potentials to measure the speed of optic nerve conduction as a diagnostic tool for Multiple Sclerosis.

But even more than an educational tool, The History of MS offers viewers a broad perspective. And broader perspectives are important for caregivers.

First, a broad perspective puts your personal situation into a context. It’s easy for some caregivers to feel alone. Others, overwhelmed by the newness of a diagnosis, are confused and without foundation – especially if all they know about MS is the little that most people who are untouched by it know.

Second, because one hears, “there is no cure for Multiple Sclerosis”, the history of medical research is heartening. There is no cure now. But perhaps a cure will be discovered.

Third, having one’s perspective broadened opens one up to experience hope. I’ve considered many times that even if a cure is discovered, it still will not restore the lost neurological functioning. If my wife has lost the ability to walk or swallow, having a cure for MS will only stop those symptoms from worsening. But The History of MS projects into the future, too. It is not unreasonable to think that medical research will, as the presentation offers for 2020, discover a way to repair myelin.

Will myelin repair happen? No one knows. Could it happen? Again, no one knows, but that scientists are imagining it, gives me significant hope!

Website: The History of Multiple Sclerosis

Etiology of MS MS Research MS Support Groups Reasons for Hope

During the last few weeks, I’ve been asked by caregivers (via this blog’s contact form) for help finding support for themselves in their local communities. I take these requests seriously.

In fact, it would be impossible not to because the caregivers include information about their particular needs. Perhaps it’s empathy, or a sense that we’re in this thing together, that always gives me a little sadness when I read requests for help. I so wish there were a way to eliminate Multiple Sclerosis.

While looking over this week’s emails, I realize that there are a couple of general pointers I can offer to caregivers who are looking for support in their local communities. I’ll summarize them here. They may not work for every MS caregiver, but the principles will hold true for most.

1. Find a religious community you feel comfortable associating with. It’s nearly a universal truth: those who seek relationship with God will have an interest in serving their fellow man. If you have lived in your community for a period of time and have participated in a local faith congregation, you know what I mean. Sunday School classes, Bible study groups, all sorts of small groups seek to minister to others in need. If you become comfortable enough with a local minister to be vulnerable and share your need for support, I think the chances are good that you may find exactly what you need.

2. Don’t limit your search to caregiver support groups related to Multiple Sclerosis. The social services department of many hospitals will offer support groups for caregivers in general, unrelated to a specific disease. Again, in their ministry to the community, many churches will offer caregiver support groups.

Can a non-specific caregiver support group be helpful for you? Will other group members be able to relate to your unique needs as a caregiver for a Multiple Sclerosis patient? Probably, yes. Much of the stress related to being a caregiver is unrelated to the particular disease. Much of it is caused by the emotional issues that arise, the interpersonal struggles that come between you and the person for whom you care, the general issues related to scheduling, managing medical matters, financial difficulties, juggling the parental roles of two when only one parent is able to be active. You get the idea.

3. Use the Internet. The quickest way to find a caregiver support group in your community is to use a search engine and search for: “your town’s name” “multiple sclerosis” “caregiver support group”.

For example, I would search for: Ruston “multiple sclerosis” “caregiver support”.

4. National and international Multiple Sclerosis-related organizations have chapters across the country and around the world. These are good resources for caregivers and patients. Take advantage of the connections they have in your community by visiting the web sites of organizations like National MS Society, Multiple Sclerosis Association of America, and the Multiple Sclerosis Resource Center.

5. Finally, don’t give up in your search for support. I cannot stress strongly enough the fact that if you do not take care of yourself, you will not be able to care for your loved one. Find the support you need, even if the search for help is a frustrating process. Among religious communities, non-specific caregiver support groups, the Internet and MS-related organizations, support for caregivers is available in many communities.

Caring for Yourself MS Caregiving MS Support Groups

My wife’s local MS Support Group held an MS Awareness event at our local library. The event started with a style show of clothing designed for ease of use. This was followed by a discussion about healthy eating which was led by a local Registered Dietitian. Finally, a young family practice physician (who is also an MS patient) answered questions for the participants. It was an excellent morning and is a fine example of the value of participating in a local support group.

As I recall the conversations I overheard during the event, I noticed common themes. In order of frequency, first was the concern about doctors who do not listen, second was a concern over medications, and third was the common concern about the cost of medical care. With good reason, these three themes seem to be common undercurrents when patients gather.

I’ve said it before: every person I’ve met with MS has been tenacious, determined and tough. They make most of us without MS seem like whiners. While they may be slowed physically, I’ve not met anyone who let their MS symptoms or their experience of Multiple Sclerosis stop them.

It’s sadly ironic to me, then, that the most common complaints I heard were about issues that are out of the patients’ direct control and are related to medical care: doctors who will not listen, medications and side effects, and the cost of care.

Assuming the stories of helpful doctors who made housecalls and treated patients like they were extended family are actually true, the medical professional has taken a left turn somewhere along the way. I know that’s a generalization, but it seems to be the experience of many.

When the practice of medicine as a profession is turning into a business for profit it must become bottom-line focused. The doctor can’t listen because she has too little time, medications are a two-edged sword solving one problem but causing others, and costs are structured so shareholders receive the best returns at patients’ expense. That’s the world we live in.

The Value of an MS Support Group

The issues I overheard the group members share are actually one of the many reasons an MS Support Group is a good thing for patients and caregivers. A good support group is an oasis where one can relax in the presence of others who share their experiences, advice, knowledge and (most importantly) their support.

Caregiver Tip: Become involved in an Multiple Sclerosis Support Group. It may be one of the wisest things you and the person for whom you care do.

MS Support Groups