Tag Archives: Multiple Sclerosis information

The Ultimate Doctor

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“Are You Happy with Yours?”

September 24, 2012

Two days before leaving on an out-of-state vacation recently, I started having the classic symptoms of a urinary tract infection (UTI). Increased spasticity, cloudy urine, frequent urination, burning. Within a day, the symptoms intensified and worsened; my bladder medication wasn’t working and I was leaking urine uncontrollably. The heat I felt from a slight fever contributed to the mayhem of it all.

Now bladder infections are nothing to mess around with, especially if you have MS. An infection like this not only is bothersome, but more importantly, it is painful and can quickly lead to trouble like a relapse and/or kidney problems. It needs to be addressed quickly.

Having dealt with bladder problems for over two decades and having to use self cathing to void, I know what to look for and what to do. But of course, I need my doctor to get me on an antibiotic ASAP.

It was a Sunday, and I was to leave on Monday. I called the office’s answering service, explained my situation, and requested the on-call doctor to contact me. I received a call within a half of an hour from the doctor. After a brief discussion, a prescription was called into my pharmacy immediately and I had the antibiotic in my hands soon after.

Now THAT’s a good doctor. To me, anyway!

Of course I had been a patient at the office for years, but nevertheless, he addressed my problem with no hassle or waiting. But, even if I wasn’t leaving on a trip the next day, the office has worked with me on this issue before. With past UTI’s, the office helps me on the same day that I call. I know how to take a “clean-catch” urine sample at home, take it to the office for a “squeezed-in” appointment that lasts no longer than five or ten minutes, and once verified that there is a bacteria, I get a script.

Having excellent physicians when living with a chronic illness is essential. It’s a lifetime relationship that requires frequent and unexpected visits, not a once-a-year annual checkup. I have doctors that I know rank in the top 10%. And I have doctors that treat many other MS patients and understand MS.

Now when it comes finding a physician, it is an individual and personal decision. By that I mean that one has to decide what he/she wants from their doctor and what the relationship needs to be. Find doctors and professionals that treat others with MS and fit your personality.

I’ll use myself as an example. I don’t want a hand holder; I want someone I can consult with. I am not a whiner and when I call, that means I need help ASAP. I want called back that day, action within a day. I don’t want to be dragged into the office when I’m too sick to get out of bed. When I go into the office, I don’t want to wait an hour. I’ve got a fatigue problem. I want to talk to my doctor, not the receptionist. I want my doctor to be connected with the latest studies and research.

Are you happy with your physician(s)? If not, it’s time to move on and find another one. You are in charge, not the doctor. You hired the doctor, and if you are not getting satisfaction, fire him/her and get another one.

Ask yourself what you want/need from the doctor and the office, such as good bedside manners; prompt responses; office visits; follow ups; experience; reviews. Interview the office/doctor before you make the first appointment.

So how do you find a good doctor? Get referrals from: a doctor you currently have that you do like, your local MS Society Chapter, family, people you know in the health field, and other MSers. Check their background and credentials on the internet. Two websites I use are www.vitals.com and www.healthgrades.com, but there are others; you can do a Google search using a phrase like “doctor reviews and credentials” to get other websites.

Finally, a couple of other tips:

• Go to the office or call on the phone prepared. Have your questions written down, have your problems written down with specifics. You will only have fifteen minutes with your doctor, if that. Don’t expect to be educated by the doctor. Expect answers to your questions. If you have a lot to talk about, schedule a longer appointment.

• If you have MS: Realistically, the most your doctor will do for you is to prescribe medications for symptoms, encourage disease modifying agents and make recommendations to other professionals (urologists, therapists…). Don’t allow yourself to feel pressured into anything you don’t want to take or do.

• You need to feel that you trust your doctor.

www.DebbieMS.com

Orange Ribbon Campaign

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“It stands for Multiple Sclerosis”

September 17, 2012

Both awareness and understanding of Multiple Sclerosis (MS) need to be increased EVERYWHERE.

How? You can help by being an educator and advocator simply by wearing an orange ribbon every day. Everywhere you go, people will see it. Some people will ask what it represents, and this is the opportunity to explain MS. You can ask questions like “Did you ever hear of it?”, “Do you know anyone that has MS?”, “Do you know what it is?” Others will begin to think “Huh—there is another orange ribbon…”

We can’t just sit back and wait for a celebrity or well-known person to mention it on TV. It doesn’t happen often enough and so many times MS is misconstrued. Or wait for an MS event like the Walk, or the Bike to come around before we wear our orange that primarily targets our friends and family that deal with MS already.

EVERYBODY dealing with MS should wear an orange ribbon EVERYDAY. This includes not only MSers and their friends and family, but also celebrities and people involved with MS such as MS Associations/MS clinics from the CEO/ Board members all the way down to their employees and volunteers. There is strength in numbers!!

People need to understand that because there is no cure for MS, and millions of persons deal with this chronic, often progressive, disabling neurological disorder throughout decades of a lifetime. It affects nearly every citizen of the country in one way or another.

When someone wears a pink ribbon, everyone knows what it stands for; breast cancer in recent years has received the support and recognition it deserves. We need this to happen for MS! Multiple Sclerosis needs a fundraiser on a national scale like what is done for muscular dystrophy, cancer, or victims of disaster in other countries.

And we can do this! Can you imagine the buzz if all of us wore our orange ribbons all the time? Can you imagine the awareness if celebrities or well-known people like Montel Williams, Sharon Osborn, Ann Romney or Michelle Obama wore orange ribbons and followed our lead? Can you imagine how there would be more support for research, insurance coverage for necessary medical programs, and social security disability? Yes, folks with MS often get declined for SS benefits the first, second and even the third time they apply for approval. 🙁

So, start today and put on your orange ribbon! (I made mine out of orange craft ribbon and a tie tack.) See my video http://youtu.be/TcEjyr2iMHY, share this post on all social media platforms, and spread the word to everyone you know to wear an orange ribbon.
If someone doesn’t know what MS is, hand them a copy of this explanation:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves. That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital. There is no cure; the cause is unknown. It is generally progressive. That means that because there is no cure, the majority of persons afflicted– millions worldwide–will become disabled during the decades of their lifetime with no way to fix the damage. Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take. What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses never stop, the grieving process never ends.

There are new drugs that are trying to slow the progression, and meds to help with relieving symptoms and shortening relapses. But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects. However, there are many things one can do to manage it effectively.

It’s also on the front page on my website:

www.DebbieMS.com

MS: Invisible Symptoms & Fatigue

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“But you look so good!”

September 4, 2012

I was invited to be a guest on a radio talk show to discuss multiple sclerosis and living with it. This was the first time I ever did a radio talk show, so I was a bit nervous. There was no audience to speak to directly, and I had to keep in mind newly learned instructions about cues, minutes, red lights, etc. so at times it was a challenge to stay focused.

As the saying goes, hindsight is 20/20. When the show was over, which flew by quickly, I was dissatisfied with myself that I did not give adequate attention to fatigue and those invisible symptoms during the discussion.

When someone looks at me, I look terrific and normal even though I am sitting in a scooter. A guy in the studio was shocked when I told him I couldn’t walk at all. It got me thinking that when it comes to a person with MS being disabled, the impression is that “you don’t look disabled” which then sometimes implies why are you on disability?

After returning home and thinking about this, I took out my webcam and created a video about how disabling fatigue and other invisible symptoms are. Here is the link: http://www.youtube.com/watch?v=rnd1MrkH0vE&feature=plcp  It shows my true colors at a down moment—quite a contrast from my usual upbeat self.

In an earlier column, (April 30th) I talked about invisible symptoms. It’s worth repeating parts of it again:

On the outside so many of us look good unless we have some kind of walking aid to indicate otherwise. We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses. When we look good, people automatically assume that we are good. I’m in a wheelchair, but I still look good and completely normal. If I would use a store’s scooter instead of my own, I would get dirty looks. I’m misunderstood.

But very often we are not good because so many of the symptoms are invisible. Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless. These symptoms interfere with everything we think, say or do. They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.

Fatigue is the hallmark symptom of MS. It is a universal complaint by over 90% of MS victims. It doesn’t matter if the case is mild or advanced. It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7. Why? Fatigue exists because MS is a disease, a chronic illness that causes other symptoms such is walking problems to intensify. Constant fatigue leads to our moodiness or depression. Often we can combat fatigue by pacing our activities, taking frequent rests, or letting others do things for us. But it doesn’t always work.

MS is an unpredictable neurological disorder. New symptoms can appear and existing symptoms can intensify when we least expect it. We never know how long these disturbances will last, how severe they will become, or if they will go away. A new symptom that doesn’t go away requires an adjustment to accepting it and learning how to live with it.

We live a life of uncertainly.

www.DebbieMS.com

MS: What is Causing What?

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The “Chicken or the Egg” dilemma

July 2, 2012

The numbness and tingling is spreading.  The muscles are more spastic, stiffer and tighter.  Legs are weaker; coordination and balance are worse.  Walking endurance is lessoned and the fatigue is escalating.

Figuring out what is going on and what to do about it is frustrating and confusing.  And there’s always the chicken-and-the-egg question of trying to figure out what is causing what.  Is my depression (fatigue, etc.) causing a bad day or flareup, or is the bad day/flareup causing the depression (or fatigue, etc.)???

The MS acts.  But wait–or is it reacting?

It’s very easy to blame what the symptoms are doing and how we are feeling on the MS itself.  However, more often than not, the MS is actually reacting to something else.

So how do you know, and what do you do about it?

MS is highly sensitive to an endless list of things, and existing symptoms intensify due to things like:

• weather changes and types of weather (barometer, heat, humidity, storms)
• sickness (colds, allergies…)
• lack of food, water, rest, sleep…
• medication
• stress (temporary physical/emotional/mental, not chronic)
• monthly menses

For example, a fever can immobilize a person with MS.  When the body is cooled down and the fever is gone, the symptoms will subside.  Spending two hours on the phone trying to resolve an insurance problem can escalate fatigue enormously; taking a nap afterward or venting in some way will ease that stress and help calm down those symptoms.

Or, maybe those intensified symptoms are the result of what I refer to as a ‘pay day’.  For example, if I wake up one day feeling great, I might push myself too hard to do extra things.  Then I ‘pay’ for it the next day and can do only half of my normal daily activities.

In situations like these, the worsening of symptoms can last from several hours, to a full day to perhaps several days depending on what the cause is.  Think carefully about things like this relative to recent or that day’s events:  What happened or didn’t happen?  What changed or didn’t change?

When you figure out what the culprit is, it can then be remedied and the symptoms will calm down.  Things go back to their normal state, whatever ‘normal’ is to you. No residual damage.

So when would the MS itself directly cause intensified symptoms or new symptoms that do NOT go away after a few days?  Now we may be talking about an attack, relapse, or flare-up…i.e. when we come out of remission.  It can just happen on its own, but often will be triggered by any major event, such as:

• falls, accidents, sicknesses, infections
• chronic physical, mental or emotional fatigue/stress
• major life occurrences (death, divorce, new baby, abuse…)

In these situations, or in the case when symptoms don’t calm down after a week, when the cold/infection is over, and rest does improve anything, it’s time to put a call into your neurologist to discuss the situation/ask for some help.  The MS may be relapsing and steroids (like Solu-medrol) may be needed to shorten the duration and severity of the relapse.

Over time, being in-tune with your body will help you figure out if it is the chicken or the egg.

www.DebbieMS.com

MS: Reaching Out for Help

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“The Value of a Peer”

June 25, 2012

When I was diagnosed, one of the first things I did was talk to a peer.  Peers are priceless; they help immensely.  There is an instant connection and understanding, bringing both comfort and knowledge.

I could have never survived my MS if I didn’t reach out to peers, and I love it when they reach out to me.  Even as an old veteran of MS, I still find myself reaching out to peers for help and guidance.

Recently, I reached out to a MS peer for a different purpose.  I contacted Sharon Baldacci, author of A SUNDOG MOMENT.  Sharon has lived with MS for thirty-one years like me, and I reached out to her to review my new book, MANAGING MS:  STRAIGHT-TALK FROM A 31-YEAR SURVIVOR.

She responded to my email the very next day and agreed to read it and do a review.  I was shocked at first at the quick and agreeable response but I shouldn’t have been.  There is a camaraderie that exists between MSers.

Over the next few weeks, we emailed little comments back and forth.  Sharon just sent me her review, mentioning that after all these years she learned something new about an MS symptom she deals with from my book.  I, in turn, learned a few things from her; and I found another MS friend I can share with going forward.

Here is Sharon’s review of my book:

June 21, 2012

When I was asked to review Debbie Petrina’s new book, MANAGING MS: STRAIGHT TALK FROM A THIRTY-ONE-ONE YEAR SURVIVOR, I had to chuckle. I too have lived with this illness just as long and didn’t think it was possible to learn anything new.

Boy, was I wrong. This small, easy to read book is a wealth of matter-of- fact information interspersed with her memories that add credibility. I learned more about spasticity here than I knew and also the word `clonus’ that describes exactly what my weaker leg does sometimes. She adds practical tips for dealing with so many of the symptoms, and side effects of medications. The chapters are broken down into advice for the newly diagnosed, symptoms, grieving, heat, and what you can do about the variety of problems that come with MS. There are chapters about dealing with people (and how they deal with us) as well as what she calls the elephant in the closet – suicide.

She also makes it clear that it is the person with MS that is in charge of all decision-making, not the doctors. The doctors are there to give all the information needed for decision-making. She explains clearly why and how she made difficult decisions for her and her family and how it has worked out all for the best. She strongly encourages everyone to do the same. This is an empowering book that doesn’t sugar coat anything but makes the endless details manageable – from her 31-one years of experience. I felt like I was learning from an old friend over a cup of tea.

This should be required reading for doctors, health professionals, MS patients and their families.

Sharon Baldacci, author of A SUNDOG MOMENT

It’s incredible that the internet exists now to offer forums for peers of any situation to connect with each other.

Free.

Everyday when I give thanks in my prayers, I never forget my gratitude to all the MS peers I have interacted with over the years.

www.DebbieMS.com

MS/Chronic Illness: Rest is Critical

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“Recharge those Batteries”

June 24, 2012

This should have been posted last Monday the 18th.  I forgot.  Fatigue will do that to you.  But I will post it anyway, since “later is better than never”………..

I am going to follow my own advice I give to others with MS or chronic illnesses:  Take breaks and rest often to restore mental, emotional and physical stress.

I haven’t been doing that.  I’m exhausted, crabby, in overload and have writer’s block from pushing myself too hard.  With symptoms intensifying, if I don’t slow down I will relapse.

So I am declaring myself on vacation this week and heading for the mountains to camp.  No TV, phone, computer or reading.  Just enjoying nature, sleeping, and visiting other nice campers.

Next week I will be back with another article to post.

www.DebbieMS.com