Now that I am in summer mode finally I have gotten back on a more solid exercising schedule. A lot of my program involves keeping up with the very active miniature man that lives with us! He helps keep me moving with a daily stroll around the block and frequent trips to the parks in our neighborhood. In addition to the toddler training regimen I’m looking forward to getting back to Yoga with my friends at Yoga Moves MS in Novi next week.
Something I have struggled with for the past few years is stiffness and spasticity in my legs, it seems no matter how much I stretch or what I do I can’t get around it, until now! Over the winter Mindy my yoga instructor told me about Benjamin at Summit Muscular Therapy in Troy. She said that he had some sort of machine that could successfully stretch out your muscles and help to reduce stiffness, spasticity and muscle pain. Finally last week I was able to go check out the set up and get stretched out. The machine that is used is called a Therbo. After about an hour working on my hip flexors and my calf I was all done. Standing up and walking was strange it felt as if my legs weren’t connected below my hips. Two treatments later and I have pretty much lost my leg hike and in the morning my heel touches the ground before stretching.
How many of you saw the POV movie “When I Walk” on PBS this week? Wondering what your reaction was after watching the struggles of a man with PPMS and his daily life? I found it uplifting that he had such a strong support team around him and used his resources to work positively to help others that struggle getting around in chairs or scooters with axsmap.com.
Keep up the fight and be a warrior today,
It's been awhile since my last blog. I've been dealing with a broken foot, which in turn, irritated my back fusion and overall MS fatigue from traveling.
After advice from Tom Mellor about scooters, I decided to try one on for size during my recent trip to Nashville. I was very nervous about using a scooter and was worried it would be heavy and cumbersome. Overall, I just didn't want to give in to using one. I did some research and found a medical supply store just ten minutes from the Nashville airport.
Although Tom recommended the GoGo scooter, I was not able to find that brand. However for 100 dollars I rented a portable scooter which broke down into five pieces. The store explained everything to me about the easiest ways to break down and the quickest ways to put together. Not really thinking about the scooter, we rented a large SUV and actually only had to take one part off to store in the back of car. It was light enough for my daughter and her friend to lift without difficulty. Let me say, they really need to give driving lessons on scooters. It took me a few days to adjust but boy was it a God send. We were in a Nashville for the CMA Festival and just getting around the football field would of been impossible for me. Overall, I loved it.
As for negatives, it really was not useful trying to get around downtown Nashville. The large number of people, uneven turf and not enough ramps made it very difficult to use under those circumstances. I was also very surprised at how others have no consideration for handicap patrons. I'm sure with time and use, I would become a much better driver and find ways to utilize the scooter efficiently. I know there may come a time when it may be a necessary requirement. I can honestly say, there really wasn't anything to worry about, it's just a necessary step of acceptance. It's hard to ask for help or admit that we need the help. I can also say, after four days, I had my fill of country music. However it won't be the last time I will experience life on a scooter.
Last week was my 6 month MS check up with my Neurologist Dr. Irani at the University of Michigan Multiple Sclerosis Clinic in Ann Arbor. I had never been so excited for an appointment as I was for this one. Since the last time I saw Dr. Irani in December things have changed drastically for me. At that time I had just gotten over mono and was about 2 months into my new paleo diet. Also my electronic stimulation device was only days old.
When I first arrived Karen the nurse at the clinic took me back for weight and blood pressure “177 pounds, down from 223!” Bam! I have always been a thin guy, but apparently I had been lugging around an extra 46 pounds. "Blood pressure is 117 over 78, you’re like an 18 year old” was what Karen replied to me...the diet and discipline was paying off! Next up was the timed walk, just a stroll down the carpeted hallway about 30 feet or so. The last time I did this I was pretty slow with a cane, “improved by just over 2 seconds!” was how I did this visit.
Dr. Irani came into the room beaming, “let’s get a look at you and see what everyone is talking about?” It’s a much better feeling when the doc comes into the room with a smile rather than a concerned look on his face. Our appointment was short but sweet; I’m sticking with Tysabri and continuing on my diet and physical activity routine.
Hearing all of this great news from my doctor was great and my hard work has been validated scientifically. Now that you know it (diet and discipline) works, will you join me and make the necessary changes to start kicking MS out of your life?
Be a Warrior Today,
After writing my last blog, with the money for Glutathione infusions dried up and the creeping back of relapse symptoms, I decided to do the round of IV steroids that my neurologist had been encouraging me to do for months. I do not know if it was the right decision. I do not know if there is such a thing at all but I decided to do it. It is not clear yet if it did any good, it made me feel lousy during, I feel even more lousy now, and yet I am grateful for the whole experience.
That is what has gotten me through these last two weeks - life just is what it is. Whatever is happening right now is happening, no matter what we think or do about it. And we never know what is going to happen next. We don’t have to assign any of it a good or bad label. It just is.
With this as my mantra, I have felt more empowered to get to know my body in this state, rather than retreating from the pain I am experiencing. I have had a chronic never-ending migraine for the last 18 years. But when the pain level shot from a 7 to a 9 on steroids and then an 11 (yes, I reserve the right to go above a 10 on the pain score) as I dropped off the steroid cliff, I wanted my neurologist to fix it. When the solution was more steroids (and it was now my fourth day being off them), I decided to go a different route- one that feels right for now.
Over the last two days I have been able to bring my migraine and other steroid withdrawal symptoms down. I am managing my pain and mood with an eye on the impermanence of it all. I did my own research online but I was not able to come across much in the way of treatment for corticosteroid side-effects or withdrawal symptoms. So I researched the root- what are these steroids and what are they doing? What I found made me cry out- “Of course!” Corticosteroids affect your cortisol production (your fight or flight hormone the adrenal glands produce), making your heart race, amongst other things. You see, for the last two months I have been working with yoga and meditation to improve the functioning of my adrenal glands, to produce a more even amount of cortisol in the body throughout the day. How odd it was that I would inject my body with a week’s worth of artificial substance and then not know why I was feeling the way I was!
Feeling empowered with this new information, I set out researching how I could keep my cortisol levels more steady and gradually bring them back to a more normal baseline, with the idea that this could be a natural way of tapering off steroids and could reduce my pain. With my cortisol levels already being high, I looked up what lowers it: Magnesium, Vitamin C, Phosphatidylserine, Omega-3 Fatty Acids, Holy Basil, Zinc, dark chocolate, Ashwagandha, Passionflower, and Dong Quai. This is where I started because these were all things that I had on hand. If you look up more herbal ways to bring down your cortisol, there are more herbal ways. I also incorporated more meditation, rest, gentle stretching and slow drinking of herbal tea. Anything that brings your stress level down brings cortisol production down. Rest rejuvenates the system. I had to put even mild yoga on hold. It is too much for my body right now and any exercise leaves my body feeling like it is bruised all over.
The benefit from this inquiry and research is that stress is an ongoing issue for all people with MS. Some of us can remember the stressful episode that spurred on our illness- I remember mine! I will be using what I learned from this steroid treatment to get my adrenals and cortisol levels back in healthy order (as well as submitting a question about this to our experts for this website to learn even more/get their opinion) so that I am better able to handle the stress and suffering that comes with being alive.
Summer has finally started and along with the warm breezes comes the summer state of mind. Everything is more laid back and the long crazy winter is a distant memory. While I have made many drastic changes to my life over the past few years because of Multiple Sclerosis very few have seemed to be positive until I changed my Mind Set and the way that I thought about my life with the disease. Once I decided that it wasn’t good enough to just make it through, great things started happening for me.
Maybe Someday there will be the miracle cure everyone is dreaming of and you won’t have MS anymore, until then you need to Motivate your Self and start living like you want to. There are many options out there that will vastly improve your life with MS but they are not all easy and nobody can do it for you. In communications with fellow MSers I am often times disappointed to hear them say that they are unable to make a change to their diet because, they can’t kick diet cola or junk food. Changing my diet has completely resurrected my life stop Making excuSes and kick the cola and cupcakes and while you’re at it the "poor me" mentality.
Let’s go, instead of reading about poor me and the circle of suffering every time I check in on one of my MS message boards I would love to read about successes that are happening due to hard work and discipline. Good things can happen for you even if you are sharing your life with the MonSter. Keep the MesS under control by doing your part as you know it will be doing its part to wreak havoc on you.
Be a Warrior Today,
A bit about Donn...Donn had mono last August and wasn't able to go back to work in September because he had such little energy and was having serious issues walking. He had just purchased a scooter because he thought that MS "had him." However, by making major changes to his diet and exercise routine and utilizing products such as an electronic stimulus device, he was able to return to work in January and is now feeling great. You can read through some of his previous blogs, such as this one to learn more about his healthcare journey...http://www.healthcarejourney.com/patient-blog/will-i-ever-be-able-to-work-again-multiple-sclerosis
It has been a year and a half since I have been off of all disease-modifying drugs. Besides keeping myself to a fairly strict diet and coming to accept the daily chronic pain I have, I did not have to face the reality of having MS. And then in April I relapsed and one morning I woke up not being able to pick up my foot or leg. I got the MS hug for the first time and all kinds of strange symptoms that I don’t even know what to put a name on. The world suddenly became much scarier and I was afraid to go outside.
I met with my new neurologist who advised me to take a round of steroids and get back on disease-modifying drugs immediately. He warned me that I could get worse or never recover from this relapse. I left the appointment scared. I got an MRI that confirmed my disease was progressing, much faster than it ever has before. He again advised me to take the round of steroids and resume drug treatment.
The thing is, I have decided my life is too precious to live it every day with the horrible side effects I had on those drugs. The QUALITY of my life matters too much to me now to take something I know is causing adverse effects in my body, just to stay alive and able-bodied longer. Don’t get me wrong, this decision to not make any decisions out of fear was itself a scary decision to make. But how empowering it was to tell my neurologist this. And how empowering it is to tell all of you. I AM TERRIFIED. But I’m going to be okay. I trust my instincts on this one. I knew when I was going to relapse and I was “poo pooed.” Now that I have, I am listening to what my body has to say, not my doctors.
I say doctors because I have more than one. I am seeing a doctor who specializes in holistic medicine. He was advising me to take a different course just as my neurologist was advising me to go the conventional route. Since I have done steroids, this time I decided “what the heck, why not try something else.” If it worked, I would have a new tool in my box. So I took five infusions of glutathione. Within two weeks I was back to walking without a cane. Now I have almost all of my strength and ability back. I cannot say that glutathione is solely responsible for my recovery. I also saw two different physical therapists three times a week. I have kept up daily exercises while resting more and pursuing an even stricter diet. But the holistic doctor advised a round of alpha lipoic acid infusions in an attempt to clear up the torso symptoms I am still having. Unlike the glutathione, I reacted to this infusion with an immediate migraine, which aggravated all of my other symptoms. I wanted to trust this holistic path so I scheduled another two rounds of infusions. A few minutes into the second infusion, when the migraine hit and I was being assured that was unheard of, I wanted to put my trust in the doctors again. And then I realized “Wait, a doctor is a doctor- I am the one who knows what is best for me!” I put an end to the infusion right then and there.
My journey out of this relapse and beyond is still up in the air. I am going to look into the three pill forms of MS modifying treatments. I am reading and researching and resting. I am curious to know how many of you have chosen to try to beat MS without disease-modifying drugs and how many of you have tried the newer forms of treatment in pill form. We hold the most experience in the ups and downs of our bodies. Care to share?
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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:
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The most common side effects of Rebif include:
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Call your doctor for medical advice about side effects.
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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.