Things have changed drastically for me in the past six weeks. After contracting some sort of mono-like virus my life has begun to take on a new look. Gone are the days of zipping around the grocery store or taking the spot at the far reaches of the parking lot because “it’s only 15 seconds farther away.” I’m now walking so slowly with my cane that the World War II vets are asking me “Do you need help?”
It has been more than six weeks since my run in with the virus and my return to “normal” is taking much longer than it has in the past, so I’m now asking myself “is this my new normal?” If so it is going to take some getting used to. At my last neuro appointment my doc filled out the paperwork for a handicap parking pass and recommended that I not work until the New Year. After doing the timed walk that took a grand total of 30 seconds I needed to sit in a chair to catch my breath before heading into the exam room.
All of this is coming pretty fast and is all very overwhelming to me, so I’m asking you my fellow MSers “What do I need to do to keep from getting down on myself and remain positive?” “How do I end my current streak of bad news?”
Question of the Week:
I have had MS for 26 years and I haven't ever had problems breathing until this past April. In April, I had a very bad MS flare. Since that time, I have been short of breath and had to see a Pulmonologist who put me on ProAir and Advair. The problem with the Advair is that I cannot really inhale due to muscle weakness and I am wondering if there is another type of medication that I could be put on for maintenance therapy?
This type of problem is common and caused by respiratory muscle weakness. While the Proair and Advair may be of benefit they do not solve the underlying problem. The MS society bulletin from 2008 (see link below) clearly summarizes the issues involved. Seeing a pulmonologist in a sleep clinic for a full evaluation and beginning inspiratory and expiratory muscle training using something like the Powerbreathe from Gaiam Ltd. http://www.gaiam.com/powerbreathe-plus/95-1453.html and Threshold IMT from Respironics http://thresholdimt.respironics.com/ should be considered. The first is an expiratory muscle trainer and the second is an inspiratory muscle trainer. Both work well and have CPT codes that may allow for insurance coverage. There are many respiratory muscle trainers available and you should discuss these with a pulmonologist who is experience with the kind of problems that either MS or ALS patients experience. You may also benefit from a sleep study to determine if the respiratory muscle weakness is interfering with sleep and increasing daytime fatigue and diminishing daytime performance. If this is the case you might benefit from BiPap (bilevel positive airway pressure).
I hate the fact that it is 2:19pm and I’m exhausted. In fact, I hated it even more at 9am this morning when I was exhausted just from getting showered and dressed. I remember when the adrenaline from working in sales would keep me going non-stop. Now, I feel like I need a nap every few hours. It isn’t even hot outside, which usually triggers my fatigue. In fact it’s a perfect, crisp Fall afternoon. Yet here I am back in my apartment, swigging caffeine and trying to ignore the couch that is beckoning me to lie down. I can feel myself fading, but I have to fight it. If I fall asleep now, I’ll only hate myself later. See, I have this really obnoxious, loud voice in my head that loves to tear me down, loves to tell me that I am only imagining my symptoms, and that I use Multiple Sclerosis as an excuse. I look fine, so I should be fine. Falling asleep sounds like heaven, but waking up to that voice in my head will be nothing but hell. I think I’ll make another cup of coffee….
To find an adaptive yoga teacher/class in your area (like the one Donn mentioned in his blog below), click on this link:
Over the past month my health care journey has taken a detour that I did not see coming. Somewhere along the way I contracted a virus of some sort that completely floored me. My body totally shut down as a result of a 103 degree temperature, I was unable to walk and the rest of my body felt like one big cramp, I couldn’t think, I was hot, I was cold. After endless tests and a few days in the hospital I was released with the instructions to “drink a lot of water and hopefully it will pass soon.” After taking gallons of blood, urine, and spinal fluid that was it?
As a result of the unknown virus and my leaky spinal cord I was put on bed rest by my doctors until my spinal headaches went away, which ended up being a little over two weeks. As someone that has had a job since I was 13 years old I thought lying in bed doing nothing for a few weeks would be a lot more fun than it was! Lying around for a few weeks actually took a serious toll on my body as I was unable to walk around, stretch out, or exercise. So I am back to very slowly walking with a cane and going to PT a few times a week to get back to my “normal”.
Some good things have come from all of the down time; I have had a lot of time to think about my mind and body. First of all I was able to attend a great MS focused yoga class (www.yogaspiritwellness.com). While attending class I met many wonderful people that are on similar journeys as all of us. It was nice to share stories and MS information as well as having my spirits lifted by the care free group in the class. Also I have decided to start eating following the Paleo diet (http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min), with all of the research pointing to high sodium diets having a negative impact on MS I figure it is time to start eating healthier.
So let’s talk, have any of you ever experienced a virus that has put you in the hospital or made you change your life in any way? Do any of you attend yoga classes? Finally, how have you adapted your diet to MS?
I thought that my days of heartbreak were over. You know, those oh- so- wonderful days of dating when you are really into a guy, believe he’s “the one” and then one night out of nowhere, he tells you he needs space. For those who are reading this and are new to the dating world, this does NOT mean he actually needs space. As nice as it sounds, what it really means is that he is breaking up with you, dumping you, leaving you in the dust. And you never even saw it coming…
In August of this year, after being happily married for almost three years, I once again found myself being dumped. No, it wasn’t by my husband. It was by my doctor who said he was moving to San Diego! If you ask my husband, he’ll still tell you that I would have been less upset if he left me instead of Dr. Kinkel, but that’s just crazy talk. Kinda J. I can’t explain it in a way that anybody other than a fellow MS patient can understand, hence this blog.
When I first met Doctor Kinkel over 6 years ago, I was prepared to hate him. Having been callously dismissed after spending 3 days in one of Boston’s “top ranked” hospitals with nothing more than a diagnosis of MS, a cane, and a prescription for physical therapy, I was done with all the so-called experts. I just wanted a human being to talk to me, to help me understand what was happening to my body, and maybe, just maybe, look at me like something more than a patient number. Lucky for me, I got a doctor who could do even better than that—I got a doctor who could make me laugh on one of the scariest days of my life. That’s when I knew I had found the doctor who would be my partner on this confusing, frightening, frustrating, and downright obnoxious disease.
Now I am faced with the challenge of finding a new neurologist. Last time around, I had no idea what I was doing or what I needed to look for in a doctor. But six years later, I’m a bit wiser from the journey that led me to Dr. Kinkel and all of the other physicians that I see now. Finding the right doctor is actually a lot like dating. Everybody has their own mental list of what they are looking for in mate, and we should all have a list like that when considering a new doctor (although physical attributes may not be appropriate for this list J). Some people want a doctor who is straightforward, just asks for the facts, and provides the necessary treatment regimen. For me, that could never work. I need somebody with a sense of humor, somebody who gets to know me by asking questions not just about my symptoms, but about my life. See, I know myself. I’m high-strung and always feel that the worst-case scenario is upon me. Having a more reserved and serious doctor would only add to my level of anxiety. After six years, I know what I need and I am not willing to settle for anything less. Neither should you…
Battling MS is a colossal fight that you should not be undertaking alone. Between Neurologists, PM&Rs, PT’s, family and friends your team is there to support you through thick and thin. Since being diagnosed in 2010 I have spent the past few years assembling my team or “Donntourage” (my name is Donn) as they are referred to by my Neuro PT Mary at the University of Michigan Rehabilitation Center. With web resources like Health Care Journey and social networking sites available these days forming your team has been made a less daunting task.
Communicate with other MSers as they will be your strongest allies in assisting you in team building and when you’re in a time of need. If you don’t know any other MSers get onto the National Multiple Sclerosis Society website and go to the next function. The NMSS puts on many events throughout the year from Muckfest and bike rides to walks all of these events draw thousands of people that either suffer from MS or support someone with MS. You can find the NMSS link under the “News and Events” header on Health Care Journeys home page. Some of my best advice comes from networking with other MSers. Talking about what meds you have tried, doctors, diets and exercises that work for you…or don’t is a great way to sift through all of the info out there!
Talk with your neuro, with all of the info you have available to you, you should be able to have an educated discussion about what is happening with your MS. If something is not working for you SPEAK UP! Your neuro will not change anything if you don’t express your concerns. You are the captain of your team, your neuro should be the star player but if you are not open and honest they will only be able to help you so much.
Find a Physical Medicine & Rehabilitation (PM&R) Dr. to be on your squad, luckily for me there is a superstar at my MS clinic (University of Michigan) Dr.Chadd. PM&R is the Doctor that looks at your body function as a whole and how MS is treating you, how is your digestive system working things like that. They also will make recommendations for assistive technology like scooters and ice vests things that can make your life easier. This will also be the doctor that will help you find a physical therapist. Again, be sure to speak up and give them all of your information even if it seems embarrassing they are on your team for a reason…to help you.
My team has many players but none as important as my Neuro Rehab PT’s. Before my PM&R sent me to them I was with physical therapists that treated me like I was trying to recover from a sprained ankle “15 more leg lifts and then switch sides” was the extent of the input I received from them. Now I am standing on foam pads catching balls while looking side to side or getting tortured on the Red Chord apparatus. “Communication is a very important part of what we do; if my patient doesn’t communicate their goals to me I have to work much harder to devise a treatment that fits them. I need to communicate with my patients Doctors and if we’re not all on the same page things can get complicated” says my Neuro Rehab Therapist Mary.
This team took me years to assemble and I am very lucky to have each member but I would not have them if I didn’t communicate my needs to my Dr. in the first place. It has not been easy or fun but my team is stacked with ringers and they are all making my journey easier in their own ways.
How is communicating with your doctor about MS, has it been satisfactory in your eyes? Who is the strongest member on your team, did I miss a player on my team that you might have?
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Important Safety Information
Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:
Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
The most common side effects of Rebif include:
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of Rebif. For more information, ask your healthcare provider or pharmacist.
Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.