Many of you have read my previous article about how a denied insurance authorization led me to an MS relapse, rendering me nonfunctional on my right side. As it turned out, MRI studies revealed that I had two new active lesions on my brain and one on the right side of my cervical spine that was 4mm in width and 3cm in length stretching from C2 to C4.
The symptoms of this relapse were tragic. They affected my cognition, speech,swallowing, function of my right arm and hand, and drop foot on my right side. From a cognitive standpoint, I was having trouble with my word recollection and memory. The cognitive deficits affected my ability to perform at my usual level at my job and, all of a sudden, it changed conversations about me at the office. I typically travel to meet with clients and go to the home office. Once my disability became apparent, I was asked to stay home. This caused unnecessary fear and anxiety that my MS was going to cost me my full-time employment. The stress and worry of this situation spilled over to my family relationships and my condition was making my wife and my two small boys worry as well.
From a physical standpoint, side effects were even worse. Walking was dangerous. I am well known for my dog story and how when I lost my ability to walk with Transverse Myelitis in 2005, the gift of a puppy helped to get me up on my feet and out walking every day. It had been like that for the past 11 years until this relapse in March. While I was still trying to walk, the drop foot was making it dangerous to do so. I did not have the strength or speed to keep up with my 11 year old dog. Negotiating sidewalk curbs was an adventure that almost caused several falls. My right knee was weak and gave out on me every other step. I was shifting all of my weight to my left side causing friction and stress on those muscles to compensate for my right side deficits. This led to soreness and pain in the left side, while creating risk of injury on my right side that was numb.
Losing the use of my right arm and hand was also severely debilitating. I could not raise or lower my arm without assistance. I could not grab anything with my hand, including eating utensils, keys, phones or any small tool that assists you with the tasks of everyday living. I could not dress or bath myself independently, nor apply deodorant properly. Even using the bathroom became a daunting chore. The lesion on my spine felt as if it was pressing on my cervical fusion causing intense pain in my neck. I couldn’t sleep and was having trouble swallowing. It felt like food was continually stuck in my esophagus.
All apects of my life were spiraling out of control. As I completely lost my independence, I felt embarrassed and ashamed. So, where was I to turn to for help?
The first step is always to reach out to your neurologist. Have your neurologist coordinate MRI studies, treatment and your plan of care for recovery. While at your neurologist, in addition to treatment options, I recommend asking about therapy. There are three therapy disciplines that specialize in rehabbing different aspects of a relapse: physical therapy, occupational therapy and speech language pathologists. The following will address what each discipline specializes in and how they can help in your relapse recovery:
- Physical Therapy – Physical therapists (PT) are highly trained specialists that can work to reduce pain and increase strength and range of motion that may have been effected during the MS relapse. PTs create individualized plans of care that include home exercise plans to encourage continued recovery at home. These include exercises using adaptive equipment to help maximize your success. While PTs use manual manipulation techniques like massage and joint mobilization, the real long-term benefit comes from the strength and conditioning exercises. PTs are educators and if you follow their plan of care and home exercise routine, you will put yourself in a good position for positive outcomes in restoring strength, range of motion and functionality after your relapse.
- Occupational Therapy – Occupational Therapists (OT) are therapists that are concerned with activities of daily living (ADLs). ADLs are common activities that people do every day including eating, dressing, bathing, toileting, and transfers from the shower, toilet or bed. OTs teach you how to use adaptive equipment to make ADL tasks easier and safer around the house. OTs are concerned with sensitive, hard-to-talk-about subjects like going to the bathroom and create a safe place to discuss your deficits without judgement. Once they understand your deficits, they create a custom plan of care to help in your recovery from a relapse, while also helping your to become more independent with the tasks of every day.
- Speech Language Pathology – Speech Language Pathologists (SLP) work to assess, treat, diagnose and prevent problems in the area of speech communication, cognitive communication and swallowing problems. Whether you have deficits pronouncing words correctly or fluently, understanding others or sharing your ideas. Cognitive deficits can affect your ability to organize thoughts, pay attention, remember or problem solve. Once an SLP assesses you, they create a plan of care with compensatory strategies to manage these deficits. SLPs also conduct swallow studies to help manage eating and swallowing function. Working with an SLP can help you manage frustrating cognitive and swallowing deficits associated with a relapse and put you in a better position to manage those deficits.
For me, rehabilitation is an important way to put myself in a better position for positive outcomes after a relapse. My last relapse required the interventions of all three of these rehab disciplines: OT, PT and SLP. Rehab professionals are skilled, nonjudgmental, and provide skills, adaptive equipment and tools for continued success after a relapse.
While these rehab professionals are a part of an overall wellness plan, it is often contingent upon the patient asking for a referral while at the neurologist office. Remember, the neurologist should manage your MS and would be happy to write you a referral for a therapy evaluation. If you are like me, and are experiencing a MS relapse that is affecting your overall quality of life, look into the benefits of working with a therapist that can help you work to regain your independence.
**Originally posted by Matt Cavallo for MS Focus Magazine at: http://msfocusmagazine.org/Exclusive-Content/Article?itemid=275**
About the Author
Matt Cavallo is a patient experience thought leader who has been a keynote speaker for healthcare events across the country. He has been named among the top 10 Social HealthMakers by WCG and his blog was selected as one of Healthline’s top multiple sclerosis picks in 2015. His story of being diagnosed and overcoming the physical and emotional challenges associated with having a chronic disease can be read in his memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. Matt is the VP of Product Development and Innovation for Care Experience.
Did the insurance company accept any responsibility for their actions? I hope so. Thanks for your post. It’s nice to connect, if only through blogs, with others going through life with this disease.
Thank you for your comment and concern. The insurance company did assume responsibility. I am waiting to hear back from them on the matter. Hope all is well with you my friend.
I had the pleasure of hearing you speak at the AOTA Chronic Conditions conference. You were and ARE an incredible speaker. In September our Outpatient Therapy Clinic (a service line of our sub acute and skilled nursing facility) will be hosting the local MS Support group for dinner. While we look forward to share and SHOW the capabilities of our clinic and therapists and how they can support a patient with MS we personally look most forward to creating meaningful relationships to better understand MS through their eyes. I have no doubt this night will be the beginning of a great relationship. I came to your site actually to buy your book as a giveaway to the guests but think this article is also worthy of a read to the group.
Hope life continues to treat you well!
Stephanie (Assistant Administrator, OTR/L-upstate NY)
Hi Matt, my son is 21, has primary progressive MS and has over 50 lesions on his brain and 3 on his spine. He’s walking with a cane, uses wheelchair on extended outings and has tremors, back aches and legally blind. I look back and recall he use to sneeze like crazy during certain seasons. I never sought assistance regarding the sneezing. We just figured it was pollen or a certain tree, etc. Strangely, like turning off a light switch, the sneezing, which had been a daily occurance, disappeared overnight and MS appeared. Diagnosed at 18 with one of worse cases of MS his Dr had ever seen for such a young person. I am convinced there’s some connection to the allergies. Tell me more. kfj232@gmail. Thanks
I used to sneeze a lot, and so did my mother. I have RRMS. I am extremely tired all the time, and oftentimes cannot find words. Sometimes I become dyslexic, and write telephone numbers down wrong. I have blurry vision, and sometimes see double. I was never dyslexic in high school, or college. I saw a website that informed me that MS is actually Lyme disease, and that Big PHARMA wants to keep that under wraps. I can believe that knowing all that I know about Big PHARMA. Diseases are extremely profitable, since the majority of people cram drugs down their throats, and inject them as well. Population control is another key factor. People, especially babies, and young children, are becoming sicker, and sicker, NOT healthier. Our pets are dying from the same diseases that we are. Creating new diseases is what Big PHARMA does best, along with changing the names of drugs which have been exposed, and were once banned, due to deaths, and birth defects. The love of money is the root of ALL evil. God help us.