Multiple What? Pamphlet Helps Helps Untangle the Perplexities of Multiple Sclerosis
Multiple What? pamphlet is trifold and gives those living with Multiple Sclerosis a venue to help others better understand that MS symptoms are different for everyone and how the limitations of MS are not always obvious from the outside.
As many as 1 in every 1,000 People may have MS says Multiple What? Pamphlet.
It is difficult to know just exactly how many people are affected by MS, because “doctors and hospitals do not have to report numbers to the health department since MS is not a contagious disease like AIDS or tuberculosis” said Kathy Jensen of the National MS Society.
However, in 2001, it was estimated that there were 350,000 people living with MS in the United States; that is about 1 in every 1000 people (NMSS). About 85% of those with MS have relapsing/remitting MS, while around 15% have progressive MS (NMSS).
MS Is Not Always Obvious, says Multiple What? Pamphlet. MS can cause more than 35 Different Symptoms.
About 33% of people living with MS use a wheelchair most of the time. However, 65% percent of people with MS are not working (NMSS). Not everyone living with MS has a disability nor are they disabled. Yet, for those who are debilitated, we need to realize that a disability is not always visible. Notably, the 1994-1995 Survey of Income and Program Participation (SIPP) found that about 54 million people had some level of disability and 26 million persons were considered to have a severe disability. Yet, only 7.0 million persons used a visible device for mobility (McNeil); thus, 19 million people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
In other words, 73% of Americans with severe disabilities do not use such devices. Therefore, a disability cannot be determined solely by whether or not a person uses a cane, walker or wheelchair.
Whether or not a person living with MS uses a cane, walker or wheelchair, one of the biggest complaints is that people assume they are “feeling good,” because they are told they “look good.” Many with MS have difficulty working and performing duties of daily living, because of the “invisible” symptoms such as extreme fatigue, pain, weakness, exhaustion and cognitive impairments.
This can be quite frustrating for someone with MS, because despite the way they look on the outside, they may be greatly hurting on the inside. Their symptoms, limitations, and damage from the disease are not always apparent from the outside. Debbie, a woman from South Carolina wrote, “I have M.S. and I can not make my husband understand he can not see how I feel” (IDA Guestbook).
What most people do not realize is that MS can cause over 35 different symptoms. Many of these can range from mild to debilitating and from occasional to constant. Here are just a few: Exhaustion, stiffness, numbness, tingling, blurred vision, depression, disorientation, dizziness, lack of coordination, acute pain, speech problems, paresthesia, flu-like symptoms, headaches, cognitive difficulties, memory loss, bowel/bladder dysfunction and mild to debilitating fatigue (RMMSC).
Whether or not their limitations seem obvious on the outside, it is vitally important to remember their struggle on the inside. For those who are able to walk, each step to them may be like hiking up a very steep mountain with a severe case of the flu. Moreover, for those who cannot, their wheelchair is not always the only obstacle in which they must contend.
Not All MS Patients Are Alike, Multiple What? Pamphlet Reminds.
One thing that is stressed in seminars and literature about MS is that every patient is different. Each has their own set of symptoms, the degree of symptoms and level of limitations. The fact that your Aunt Gertrude is living with only occasional symptoms or ones that are not debilitating, does not mean this is how another person should be.
People living with MS have to make various adjustments at different levels. Some experience occasional symptoms that are manageable with changes in diet, stress, exercise, and medications. Some struggle with frequent bouts in which they must make adjustments in their work and schedules at home in order to avoid these relapses. Others endure debilitating pain and fatigue that rarely or never goes away.
During relapse for some patients with MS, even simple household tasks that once were never given a thought can be a challenge or virtually impossible. For instance, simply dusting could have to be spread out into a two-day chore. Even preparing a meal is often a goal that these patients struggle to accomplish.
Multiple What? Pamphlet Helps You Answer Others When They Ask, “What Can We Do?”
1) Avoid the temptation to make a visual diagnosis by stating, “Gee, you look like you are feeling good.” We cannot see how they feel on the inside, from the outside.
2) Learn to be aware of their symptoms, despite how chipper they may appear during our visit with them. After all, they smile because they enjoy seeing us. They are also trying to keep a positive outlook, despite the pain, not necessarily because they feel good and are doing well.
3) Do not push for them to tell us they are “having a good day,” if they are not. Some have mostly good days and some bad. Some have mostly bad and some good. We should allow them to be honest.
4) Acknowledge what they are going through. It may mean a few or even a whole lot of changes and losses. They do not require our complete understanding, just our belief in them.
5) Respect their limitations. When a person has MS, they must manage their condition by staying within boundaries. Over-doing oneself only can lead to increase in symptoms. We must allow them to say “no,” even if we do not fully understand.
6) Tell them how much we admire their strength and determination. Many times people living with illness are treated as if they are just being weak or lazy. But, if we examine the evidence, we will find someone who actually has incredible courage, strength, and perseverance.
Multiple What? Pamphlet Helps You Also Answer the Question, “How Can We Help?”
How can we help? We can try offering to pick something up from the store when we go, bringing them a picnic lunch, vacuuming their floors, doing a load of laundry during our visit or sending them a note to say we care. They already feel like a burden, so we should not wait for them to call us for help.
Finally, people living with MS do not want pity, they simply need our love and support. We should not worry that addressing their hurdles will discourage them! After all, ignoring what they are facing and trying to downplay it can leave them feeling as if we do not have any idea how what they are going through.
For that reason, we can validate their feelings by listening and acknowledging their concerns. This will give them strength and hope to know we are standing by them. Most of all, when we let them know that we see them as the courageous, strong, determined people that they are, they will fight even harder!