Check out http://www.mssymptoms.me/?p=539 to read a review by MSsymptoms.me of HealthCare Journey! Thanks Melissa!
The mission of MSsymptoms.me is to provide hope and bring joy to others. To inspire, encourage and educate. To expose the humor in living with MS symptoms. To laugh, giggle and grin. To recognize fear and face the darker sides of MS symptoms with strength and determination.
If so, have you read our symptoms page on heat sensitivity? http://www.healthcarejourney.com/heat-sensitivity.html
Let us know what you think about what is on this page and whether we could do anything to make it better.
Please go to http://ticnetwork.org/live-stream/2012-convention-coverage/ and click on the "Mission Possible" show from March 18th and listen to the TIC Network interview Christine Granfield, founder of HealthCare Journey.
TIC is an award winning radio reading service that broadcasts the reading of printed materials. Until now, they have focused on the blind, but since many people with MS having vision problems, this is a great service for MS patients.
Please pass this along to anyone you know that have multiple sclerosis!
All to often we find ourselves disappointed and sometimes angry at family members, caregivers and even providers. I always loved working or being on a team. I hold a particular place in my heart for my old high school team mates and sorority members. We could read each other's minds. We always forgave them when they messed up or missed the pass or sign of what was needed. Nothing stopped us from supporting each other. It's so easy to get angry when someone doesn't meet our expectations or flat out hurts us. But, what we often forget is that we are all on the same team. When someone hurts us,the knee jerk reaction is to hurt back. Just like if they missed the shot in a game, it's tempting not to pass them the ball again...but that only makes things worse. It's simple really. We can't read each other's minds, and caregivers are only as good as our communication skills. Family members sometimes get on each other's nerves. Providers sometimes don't listen well. In life and sports, there is plenty of room for errors. Communication is key. You may not want to pass the ball to someone who misses 80 percent of the shots, but still pass the ball. Because they just might surprise you, and nail the game winning buzzer-beater. We all have needs and all make mistakes. Just remember we are a team. We are all Human.
A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 8 years ago with RRMS and has a daughter who also has MS.
So, as I sit here watching it snow, feeling like vacation is so forgotten and wishing spring was here, I'm contemplating what would be helpful to blog. I realize that we have great doctors blogging answers to questions on this site, however I'll just throw it out there that maybe some of you have more personal questions that you need an opinion or help with. Questions that you don't want open in public. What are your thoughts everyone? I would be happy to give anyone my personal email if they need to discuss something on a more personal level. I do have a disclaimer though, although I am a registered nurse, I will be replying as a patient not a provider and will always defer any medical opinions and comments to our MDs. Would like to hear your comments.
Since I am a yoga instructor who also has MS, I am interested in spreading the word about yoga for MS! I have put together a list of resources…if you know of any others please type them in the box below so we can add them to the site!
A good overall article explaining why yoga is beneficial for MS
http://www.nationalmssociety.org/Living-Well-With-MS/Health-Wellness/Exercise/Yoga This gives a good overview of the styles and lots of quick resources.
I like this whole page. And then if you click on the top link, they have teachers trained in teaching students with MS.
This is from MS Active Source (it gives a breakdown of how yoga helps each symptom and a 3-level DVD set, online videos of poses too)
This is a great book…it is the one I used to start my yoga practice!
The author's website
A chair yoga website where you can locate teachers
Wonderful yoga teacher. My best recommendation for restorative yoga (also known as Yin yoga)
This is a good article about using a chair for yoga
Thanks so much!
Review of the New Wahls Protocol Book: How I Beat Progressive MS Using Paleo Principles and Functional Medicine
The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine
Let me begin by telling you that the latest book by Dr. Terry Wahls The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine is much less of a diet book than it is a field guide filled with the instructions needed to reclaim your life from Multiple Sclerosis.
Dr. Wahls tells the story of her sickness and recovery explaining the route she took to pull herself from the tightening hold of Progressive MS, all the while guiding the reader along the way. Let Dr.Wahls be your Sherpa on the trek up the mountain to better health, the trip will be demanding but the view from the summit will be beautiful.
By breaking the book into three parts Dr.Wahls has mapped the transition to better health for her readers, making each leg of the journey attainable. Beyond diet Dr.Wahls will guide you through exercise and electricity as well as stress management. Once you’ve selected your track you can build your way up to becoming a full-fledged Wahls Warrior.
Suffering from RRMS has been an up and down battle for me since 2010, there has been a progression of symptoms from cognitive function and fatigue to balance and a decrease in my mobility. For my fellow MSers I know your story is different but probably similar. By drastically changing my diet and adopting the paleo lifestyle I am beginning to recover from MS. Fatigue is no longer an issue, I’m building stamina and cog fog has cleared up, so let’s have similar recovery stories.
This book has the ability to change your path, but you need to initiate the change. The tools for the job are all here.The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine is the opportunity you are looking for, take back your life and kick MS to the curb with functional medicine.
The Wahls Protocol: How I beat Progressive MS Using Paleo Principles and Functional Medicine will be available on March 12th, 2014.
Be a Warrior Today,
Here is a question that has come in from someone with MS. If you have experience with this and can comment, please do so!
“I have secondary progressive MS, walk with a wheeled walker, and continue to work although I feel I am losing these abilities rapidly. I have tried many other treatments for my MS (4 different disease modifying therapies, most recently Tecfidera) but none have altered my MS. My doctor is recommending a trial of Tysabri. I am JC virus antibody negative and trying to decide if I should try this medication. Is there anyone reading this with my level of disability or disease type (secondary progressive) or both who can comment on their experience with Tysabri? Studies have not been completed for this stage of the disease and I am looking to gain insight from those with progressive MS who have tried Tysabri or are still on Tysabri."
Being back in the routine of work has been both great for me and also quite a challenge. I love getting up and getting at it, I know most people hate the grind but I like doing my part. While I was off work I felt like I was aimlessly floating and not doing anything purposeful. I was recovering and taking care of myself but I missed contributing to the well-being of others.
Now that I have been at work for a while I do miss the peace and quiet but I’m having a great time teaching kids how to read and do math. Also I have started a pretty neat writing program that is teaching kids to have a voice as a writer; it’s going pretty well so far. Also I have been spreading the word about MS both to kids and the staff. I’ve learned that I have a parent of a student with MS and some staff members that have family members with the disease. Everyone has been very supportive and interested thus far.
Being back at work I have been more tempted to fall off of my diet as there is the endless supply of birthday treats offered up daily by happy little students! Not to mention bagels and treats in the teachers lounge. I haven’t slipped up yet but I can’t say that I’m not temped.
Packing lunches has been like having a second job at this point, my salads do get many envious glances in the lounge. I can’t blame the gawkers as my creations include nuts, fruit, chicken and bacon lately along with a pile of spinach, arugula and anything else green I can cram in there!
This year’s annual Michigan MS Society meeting was very exciting, my wife was honored along with other top fundraisers in the state! Way to go Jill!! This week is MS awareness week...do you have any plans? Keep up the fight!!
Be a Warrior Today,
A Bit About Donn: Donn is 38 years old and was diagnosed with relapsing remitting MS in 2010. He lives with his wife and son in Plymouth, MI.
MS, Exercise & Fatigue
If you have read any of my previous blogs then you probably know that I have been rowing in an adaptive program for about a year now. At the same time, I started Tecfidera and increased my Ampara. The exercise is hard and the electrical stimulation that they use can often be very uncomfortable. Most of us in the program are paraplegics and so I guess it makes sense that there would be some discomfort when you consider that you are firing otherwise absent quad muscles with stim. Your progress depends heavily on your increased aerobic capacity and your upper body strength. The longer and harder you row over time, the better the workout. I'm really okay with all of the variables so long as I continue to make progress and this is where things have gotten tricky over the past few weeks.
For someone who has had MS over 20 years, I should know that you can't go to bed late, get up early, eat on the run and expect to have a great workout. Did I mention the stress? Here's a bit about myself, I don't like to compromise. I have been engaged in an emotional case that involves bullying on behalf of my son since October. We just settled the case with the school system this past week and I am happy to say that my son will be starting a brand-new school next week. Here's the kicker, everything comes at a cost. Months of high stress and poor sleep have not made my life any easier. Still, I showed up to row three times a week and brought my A game with me each time - only it didn't pay off until today. For the first time, I completed 1700 meters in less than 30 minutes. I rowed further and faster than I have since I started 12 months ago and finally I can see the enormous rewards of unrelenting exercise. It doesn't hurt that my trainer Colleen is an absolutely terrific person or that or that the gym is infused with some rocking tunes from Pandora. For me, this was a big milestone. This has taught me a valuable lesson about MS. While I don't like to compromise, I know that I will need to pick my emotional battles carefully, keep a balanced diet, rest, exercise, and maintain a low stress lifestyle to beat this thing. Today was my reward for all of my hard work these past months and my son was there to see it!
I have never liked being tied to so much structure but in this case, it has been paramount. I have learned some valuable lessons these past months. Go one day at a time and above all, don't ever give up!
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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.