Living an active life with multiple sclerosis

by Sharon Malinowski, occupational therapist, and Jenny Maurer, speech and language pathologist

Credit: Adam Taylor/ABC

Credit: Adam Taylor/ABC

If you’re watching this season of Dancing with the Stars, you’ll be seeing Jack Osbourne dancing the rumba or Paso doble. Jack went public with his diagnosis of multiple sclerosis (MS) last year, which left many fans wondering how he will be able to participate in such a physically demanding show while coping with his condition. In actuality, it has been proven that concentrated rehabilitation and physical activity can promote increased and sustained function in MS patients. 

Multiple sclerosis is a chronic disease of the central nervous system and is an unpredictable condition that can be relatively benign or entirely disabling. Symptom experiences are the result of communication between the brain and other parts of the body becoming disrupted due to multiple areas of inflammation and scarring (sclerosis) in the central nervous system.

The symptoms of MS are erratic meaning they can be mild or severe, long duration or short and appear in various combinations depending on the area of the nervous system affected.  It is also common to have an attack followed by a period of recovery, also known as exacerbations and remissions, which can sometimes make MS a very unpredictable condition to live with.  An exacerbation of MS can include any number of symptoms and side effects including:

  • pain
  • loss of vision
  • difficulty walking
  • muscle weakness in the arms and legs
  • difficulty with coordination, walking, standing

Although there is no cure for MS yet, there are numerous strategies to modify the disease course, treat exacerbations, manage symptoms and improve function and mobility. Most often, a rehabilitation program for people with MS is designed to meet the needs of the individual patient based on the specific symptoms experienced. The goal of MS rehabilitation is to help the patient return to the highest level of function and independence possible, while improving the overall physical, emotional and social quality of life.

Occupational and physical therapy are vital components for individuals with MS over the course of their lifespan to improve their quality of life.

Occupational therapy – helps assist people with learning how to use equipment for basic activities of daily living, energy conservation techniques to pace their day and recommending home and work modifications to allow for independence.

Physical therapy – assists the individual with custom exercise plans for muscle imbalance, weakness, fatigue, pain, frequent falls and walking deficits.

Speech therapy – Individuals with MS can also experience swallowing difficulties and/or cognitive deficits, which may worsen when tired. Patients with MS benefit from therapy strategies that focus on treating symptoms and rehab to increase function through a personalized home program. Dysarthria and swallowing techniques include energy conservation and loudness regulation, appropriate speaking rate and breathing patterns, changes in diet and supervision during meals.

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9 thoughts on “Living an active life with multiple sclerosis

  1. Ann Serafin says:

    Hi Sharon Malinowski! It’s Ann Serafin, Facebook friend of Jackie montano parr. She posted this on FB. Hope you are well!

  2. Catherine says:

    Great post! I completely agree with the importance of adding OT / PT to strengthen and develop stamina to manage each and every day. Thank you for making the difference for your patients. My PT recently suggested BalanceWear Weighted Vest to help with my balance issues. She was so right. Not sure if you have this in your neck of the woods. A new tool for neuro deficits. Have a great day!

  3. Vita Palazzolo says:

    Thank you for finally addressing M.S. in this blog!. I was diagnosed four years ago and work at sola Life & Fitness. I have my days but most of the time I am able to work without difficulty & just love that I have access to the pool & fitness center right on site.
    Please keep Multiple Sclerosis in the spotlight as other chronic diseases are so that we may educate the community as a whole. Thank you again!!!

  4. Diane Sheldon says:

    Interested in how long it took you to get your diagnosis and how they discovered it. I feel I have an onset of MS but it has not been diagnosed.

    • Hi Diane – You can learn more about the symptoms and diagnosis of MS here: http://neurosciences.beaumont.edu/multiple-sclerosis

    • Vita Palazzolo says:

      I’m so sorry Diane, and i will be praying for you. First, do you have a good, trustworthy neurologist? If not, let’s talk. I was in a car accident in 2008 & six weeks after, the left side of my face went numb…my first exaerbation. Next, I started to experience tingling & numbness so we did bloodwork, MRI, & finally a spinal Tap that pointed right to M.S.. Please fell free to look me up if you need a referal for a neurologist & don’t hesitate to begin treatment soon. I wish you the best.

  5. Jacquelyn says:

    I stumbled upon this blog while trying to obtain some information about treatments for multiple sclerosis while on WBH Neuroscience center of excellence site. I am a 32-year-old stay-at-home mom of a beautiful three-year-old son and a wife of a very loving and supportive husband. I have always treated the hard and challenging things in life with a positive attitude. With the strength of the Lord I have always been able to see these troubling times as blessings. After all, their is always a way to climb back up to the top. We can’t always stay at the bottom forever when we get knocked down. It’s just the matter of finding the strength and determination we need to start making that hike back up. Yes, easier said than done at times. This much I do know very well. Today at 32, I can look back at all of my ups and downs and reflect upon all the curve balls I have manage to dodge or hit right out of the park. However, yesterday morning while at my follow up appointment with my neurologist, I felt as though one of these curve balls hit me head on. After talking for some time about my family history again, my doctor had loaded my brain MRI images on his computer and so I thought okay so he’s going to show me my brain MRI results and how good it all looks. After all, I originally came to see him because I was having new symptoms relating to my four herniated discs. So, again I was thinking he was going to show me my two brain MRI’s that I had done a week prior, then the brain MRA and then we would move on to the lumbar and cervical MRIs. Then he turned off the lights so he could show my husband and I these images and i immediately went in mommy protective mode because my 3 year old was a little scared because the lights went off suddenly. Then he said to me, “see these white spots, these are very concerning.” Okay, what are they? I responded. He then backed up a little bit and put his hand gently upon me, in way to try and comfort me before continuing. He then continued by saying that they where lesions followed by a bunch of medical babble that I would have understood better if I was not the patient, but I was. Then I looked at him with extreme confusion and concern. I knew that having lesions in a persons brain was not normal or good for that matter. But it was the two letters in the next sentance he said that stood out. MS………….
    Did he just say MS??? I thought… Naw, he couldn’t have because after all I have no family history of MS that I know of, the only thing neurological in my family was Parkinson’s in which my father had up until he passed away last year. My mother passed away 2 years ago from other stuff not neurologically related. So, there can’t be anyway he said that. I looked at him with a lump in my throat trying to hold back from crying because I had to be strong for my child who was present and I said, “I’m sorry, I think I misunderstood you and got a little lost in your explanation of these lesions, but did you just say MS, ya know, multiple sclerosis?” Then, after I heard, yes, the rest of what he said became a big blurr as though I was having a horrifically bad dream. Later that night once i was able to focus better, my husband explained that he was ordering 3 days of IV steroids to get my current symptoms under control, which has been extremely debilitating the last 2 weeks, entire right side body numbness, loss of muscle function in my hand preventing me to write and among many other symptoms. Then my husband went on to tell me that the doctor suggested that we do research on the disease itself, treatment options and then follow back up with him in 4 weeks. The thoughts going through my head for the last 24 hours have been, Is this really happening??? How am I going to dodge this curve ball??? How will I be able to provide the love and support to my husband and child when I don’t even fully understand what the heck is going on??? Is this one of the many tests that God has given me??? What did I do in my past that could have caused this??? How long have I really had this??? Has all the symptoms I have had over the years been MS and I just over looked them because I always related them to my 4 disc herniations??? or am I just being over aynalitical like I always am? Those are just a few of my many thoughts. However, one thing is for sure, I am truly blessed with all of the other aspects in my life. This diagnosis could be worst, yes. I don’t have cancer, I don’t have MD or ALS. But never the less, it is scary and will be around for the long hull. So I ask myself, what’s the next step. I don’t really know yet but I know I have to figure out where to go for these IV steroid treatments to take the first step. That’s the reason I ended up here, trying to figure out where someone goes to get these treatments as my neurologist is an hour away and I can’t drive that far 3 days back to back. I am a very private person so for me putting this out there for everyone to read just seems weird and out of my character. But some how saying all this to complete strangers seems to be easier then telling my friends and family. I don’t know, maybe I won’t for a while because I am not ready to say this story over and over and be hounded with questions about something I don’t even fully comprehend. If I just keep this news with my household and my brother and his wife than perhaps we can all have a beautiful holiday season that is coming up without having to deal with the millions of questions and the sympathies that I don’t need because after all, this is not a death sentence but just a different path in my blessed life.
    Thank you to anyone who took the time to read this extremely long heartfelt release that I needed to express.
    ~God Bless

  6. Thanks for sharing this information. I have thought about OT/PT but have not brought up the idea with my doctor. I had been very active with yoga, soccer practice, snowshoeing and more. In the past year it has become a struggle just to get in the shower. I have not been given a diagnosis, but it seems like everything else has been ruled out, and the last doctor I was told me that diseases like MS can take YEARS to show up definitively on MRI, depending on the size and location of lesions.

    I may need to redirect my thoughts away from finding a diagnosis and focus more on improving my daily quality of life. That being said, I don’t trust myself to drive far, and am afraid that I’ll loose sight in one eye while on the road.

    The biggest thing I struggle with is feeling like I hold my family back. We can no longer go on half-day hikes, I can’t easily do the National Park tours that we used to do, I am not able to coach soccer and so on. Then, add to that having a neurologist at a world renowned medical facility tell you that you ‘simply don’t handle stress well’ and that is what is causing your symptoms only makes things worse. Thankfully my family doctor is a true advocate for me and knows my medical history and my personal history – if it were stress I would have had issues a LONG time ago…..

    I try to be positive and encouraging and show people how I don’t let my body stop me from being active in my life, but there are times it is downright exhausting.

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