This page is intended to provide INFO on some of the things that I’ve learned about MS ~~ while living with Multiple Sclerosis.
What it means to have MS…
Having Multiple Sclerosis means different things to different folks. Each diagnosis is different, each doctor you talk to can offer a different diagnosis, each set of symptoms can differ, and the path of the “disease” differs from person to person … the scariest part is that it is so darn unpredictable!
As I have stated before, and will mention repeatedly on this website, the key to dealing successfully with MS is learning to moderate your energy and activities. This is MY biggest challenge! When I am feeling good, I tend to “sieze the day” because I don’t know what tomorrow will bring. Consequently, this behavior tends to increase my symptoms because I do too much… moderation… that is a TOUGHY!!!
What it does NOT mean to have MS…
Anyone who has read even minimal information about MS, knows that MS is NOT a life-threatening fatal disease!
Re-taking control of YOUR life…
In 1998, while living in Virginia, I attended an MS Education Night, hosted by our local NMSS chapter. The guest speaker was Dr. Kenneth Johnson, of the University of Maryland, MS Center. Here are some of the “Rules to Live By” that he offered as part of his presentation:
# MS is a highly-variable disease – but it will NOT go away!
# Knowledge is essential…
# Employment or Volunteering is important…
# Social activity is critical to eliminate the possibility of isolation…
# Exercise & diet are important…
I really believe that remembering these key points will help me deal with having MS.
Assembling YOUR team…
Having a support “team” is critical to successful management of MS. There are several key players that you need to include on your team (depending on your needs and requirements):
# Physician (primary care);
# Neurologist (who is part of an MS Center!);
# MS Nurse;
# Social Worker;
# Accountant (tax planner);
# Financial planner (retirements, etc);
# Credit counselor;
# Stock Broker;
# Insurance Agent / Broker (life, disability, health, etc);
# Health Insurance Claims Assistant;
# Mental Health Professional;
# Home Care Team (home assisted services);
# Physical Therapists;
# Occupational Therapists…
While living in Virginia, my neurologist (the one who was able to “finally” diagnose the MS), was Dr. James Simsarian, of Fairfax Virginia. Dr. Simsarian was President of the Consortium of Multiple Sclerosis Centers (as of Feb.2003 is Past-President and still serves on the CMSC Board), which is a great resource that has been very helpful for me and others with MS.
The HELPFUL RESOURCES section of this website, lists some links to other websites that can help, or if no internet access is available for a particular resource, I have listed some addresses or telephone numbers (I’ll try to keep them up-to-date) that you can use to contact these groups and/or organizations. Again, if you come across any broken links, or find additional suitable sites that I could add to my list (which is an on-going project), please feel free to email me.
Who to go to for help…
I have found that the best place to start looking for help when I need it is via the staff at my Neurologist office. They are very helpful, and can usually tell me where else to look if they don’t have the answer I need.
Another critical place to access when you need help, is to contact your local NATIONAL MULTIPLE SCLEROSIS SOCIETY.
When to ask for help…
Asking for help can sometimes be a scary thing in itself! Personally, I am so stubborn, I usually always refuse help, even from my family!
Pride is a precarious facet in someone’s life — and, after too many ups and downs on this “MS Roller Coaster Ride” of mine, I’ve learned to swallow my pride and ask for help when I need it…
I’ve learned that having no Health Insurance, other than Medicare, means no medication coverage — BUT, after doing some research, I’ve found that I qualify for a lot of free or really cheap programs that most of the pharmaceutical companies offer for the medications that I take…
This is just one example of “Asking for Help”…
I started out by contacting my local Area Agency on Aging and they pointed me to a local Disability Resource Center… Also, always remember to contact your local NATIONAL MULTIPLE SCLEROSIS SOCIETY. They have staff-members that are trained to help with a variety of areas dealing with MS!
Things that are encouraging…
There is a lot of ongoing and new research being conducted around the world to find the cause & a cure for MS! Support of organizations like the NATIONAL MULTIPLE SCLEROSIS SOCIETY is critical to finding the cause & cure! Even if you can’t contribute financially, you can donate your time when possible, and be sure to talk with your friends and family and co-workers about getting involved!
Spontaneous recovery sometimes occurs. At this time, however, Multiple Sclerosis is incurable. Symptoms can be relieved or controlled, and the condition can remains stable for months or years. Survival of 20 to 30 years is common. Scientific research into causes and treatment continues, so there is hope for increasingly effective treatment and cure. With the continued advancement in methods and technology, new information is being discovered and researched daily!
Things that are discouraging…
One of the biggest discouraging factors that I face is well-meaning family or friends that become overprotective and want me to do nothing but lay in bed and rest! The key to coping with MS is learning how to moderate your energy so that you can accomplish the things you need to do, but not wear yourself out in the process! Most people associate MS with those people who have the more visible form of the disease and are visibly disabled. There are millions of people with MS who have no visible disability at all. And for some, the entire course of their disease may remain in this dormant-like state. As with anything in life, people are generally frightened by the unknown — and MS is FULL of unknowns!
The key motto that I try to live by is
“I realize and accept that I cannot control how my Multiple Sclerosis affects my body and mind, but, I will not allow my Multiple Sclerosis control how I live my life!”
What to tell & what not to tell your kids…
The NATIONAL MULTIPLE SCLEROSIS SOCIETY (1-800-FIGHT-MS or 800.344-4867 National Headquarters) has booklets and pamphlets available on how to teach your kids about MS and how it may affect your lives. Contact them for more information.
As for my children, they were 13, 17, and 20 when I was diagnosed (the last time). I kept the explanation of my MS and how it affects me as simple as possible. As parents, we know our children best: how they can process and accept information based on their age and level of maturity. I also kept my explanations limited in scope so I wouldn’t scare them into thinking that “Mom was dying”. I think that is a very important factor to remember when talking with kids, of any age, about Multiple Sclerosis.
What to tell & what not to tell your family/friends…
Keep in mind that just as the way MS affects each individual in a different way, each of us all have different ways on how to communicate with our family and loved ones.
Because of the history of MS in my family, it was scary for me to let my family know that I had Multiple Sclerosis. My father, who had helped take care of his sister (20+ years ago) was terrified and still excessively worries about me. The best thing that I could do for my parents was to direct them to the NATIONAL MULTIPLE SCLEROSIS SOCIETY so that they could order publications and learn for themselves about all of the advancements in research and treatments that have been developed since the days when my aunt suffered from the disease.
What to tell & what not to tell your co-workers & employer…
Telling your co-workers and employer about your MS is a very personal decision. There are many factors to consider that apply only to your specific situation, and YOU are the best qualified person to make this decision, because YOU are the one who best understands the dynamics within your workplace.
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