Looking for something to do on a cold snowy day? If you are like me and love to read but have a difficult time managing a book, then consider a fantastic program for free books on tape. The Perkins School for the Blind sends you three or so books on tape at a time. They have thousands of titles to choose from. The program services anyone with a disability that makes it difficult to read in print form. Once you fill in the appropriate paperwork and qualify for the program, the school sends you a free reader that you pop the tapes into. When you are done listening to the audiobook, you just send it back in the mail free of charge and then the School will send you your next three books. The following guidelines are for Massachusetts residents but most libraries in other states have similar programs.
Service Eligibility Guidelines
Library services are available for Massachusetts residents who meet one or more of the following eligibility guidelines:
For further information check out:
Trying to stay warm in Boston!
Taking better care of yourself does not have to be a daunting task. It is a game of experimentation. Baby steps of trying out one thing and then the next. There will be setbacks and disappointments when a hoped for treatment or self-care regimen does not work for you, but with experience, this just becomes part of the process. A journey in learning your particular body in a very intimate way.
Since being diagnosed with multiple sclerosis four years ago, I have tried a number of diets to get my body to its optimum functioning. Many started off as promising and then, sometimes suddenly, no longer seemed to work for my body. Recently I was all fired up about the Wahls Protocol. I was not seeing the results I wanted being on the second stage of the diet, so after several months I modeled the diet Dr. Wahls is on herself, Wahls Paleo Plus. And then I felt relapse symptoms coming and I developed this crazy chronic migraine. The migraine has lasted a month now. I experienced some vision disturbance and a loss in sensation on much of the right side of my body. But my vision is back and the rest seems to be clearing. My hunch is that the large amount of coconut prescribed on this diet, a common migraine trigger, may not react well with my body. So I have dropped back down to Wahls Paleo and am experimenting with a possible food sensitivity by cutting out coconut (I tapered off of it over two weeks.)
This has been my biggest disappointment to date. There is so much positive talk about the Wahls Protocol. Dr. Wahls has improved so much herself. And so many other people with MS have too. But, like with everything, and particularly with MS, I have found that one size does not fit all. Where I have found solace in my disappointment is with the acknowledgement that Dr. Wahls crafted her diet by experimenting for years with what her own body responded well to. There is a science to what foods to eat and why but as far as what one body needs that another may reject, that is individual to the person. And I have also found that if there is an exception to the rule, I will be that exception!
I was tempted to go off the diet altogether and binge eat corn chips, rice cookies and grapes but the reality is that I cannot be bitter or resentful towards Dr. Wahls or my own body. My body is telling me something and I may not like what it has to say because it is “ruining” my plans, but it is yet another reminder to honor my body and honor my journey. This diet of eating 9 cups of vegetables a day is bringing me health and vitality I have never experienced before. I wished I felt better currently but I fed my body junk for so many years, I cannot expect that I can revamp it in just a few months. This will be a process just like it all is.
Maybe my body can’t handle coconut right now but will be able to after a year on Wahls Paleo. Maybe it is not coconut at all and was some other undiscovered trigger. Little by little I will chip away at what works best for me. I’d love for your support on my journey and I would love to offer you the same! Please leave comments below if you have experienced anything similar or have advice for others like me.
Written by Susan Sheehan
As I read through all the MS information on the web, I thought I would bring you some interesting tidbits (at least from my perspective as someone living with MS) from my readings:
Service Dogs Part One---Ski Lift Cable Car Outing at Ski Resort
This picture is of me and my 5 year old service dog named Candi. We are riding inside one of the gondola cars traveling back down the mountain from atop the ski area. It was after Labor Day last September and a stunningly gorgeous day with unbelievable views at the top.
OK lets back up to the day before. I had done my research online about the ski resort so I would know what to expect and to bring. At the top of the ski area where the skiers get off it is quite high and much cooler than at the bottom...about a 15 degree difference, which meant dressing in layers. So I picked out a jacket that had an inside zipper for my small wallet and other pockets for other things. I made sure my big camera that I was taking was in its camera bag with its wide strap.
I needed to keep my hands free of carrying anything because my left hand held Candi’s leash and I had to keep firm control of that at all times. So no purse, no cane or anything else in my right hand. The camera then went around my neck. In Candi’s dog vest she carries information on her, poop baggies, some treats, water, etc.
Next morning we were off and it is a bit of drive to get there. When we finally got there it was obvious tons of other people had the same idea and the parking lot which is on an incline was almost full. My heart sank for I can’t walk that far on an incline. But then an attendant came up to us and said we could the handicapped parking, for he had noticed the handicapped license plate on our SUV. Off we went and parked within feet of where we wanted to be, we were so lucky!
While I got things ready my husband took Candi for a potty walk in an appropriate area and she was now set. Then we got our tickets and used the nearest restrooms. Candi goes with me and we use the handicapped stall. She is trained to sit and stay where I put her in there and she does fine. If I need help getting up then she is there. When I go to wash my hands she gets a drink of water out of my hands as her front paws rest on the counter. When done I wipe up after us. It’s my responsibility to keep her clean and any area that she uses.
I do walk by myself but I am a bit wobbly but walking with Candi controls that. She walks on a short leash right next to my left thigh and also wears a Gentle Leader which is a strap attached to her leash that goes high around her muzzle. With this on it helps me keep control of her pulling and walks at a safe gait for me.
Anyway we now go to the lines waiting to take a gondola ride up to the top. These cable cars keep moving along when they come into the station platform that is how you get on them. A touch scary for someone like me. So my husband had me get in the car first and then he gave me Candi and then she followed right after me. All went fine and we sat down for the ride to the top, Candi was a bit concerned about this moving and noisy thing we were in so she just sat next to us and we took pictures.
Arriving at the top we had to get out of this moving car but again holding tight to Candi and help from my husband all went fine. The view was breathtaking to say the least!! They had a restaurant, restrooms and a gift shop BUT everything was built on platforms with stairs and no level ground anywhere and sheer drop offs everywhere. Yikes! Well after all this is where the skiers start their skiing from but I just had not anticipated this. However the info I read about the top said getting to the restrooms up there was tricky but I had ignored that as we used the restrooms below. I should have paid more attention to that warning for now I know why.
I don’t do well on stairs and inclines at all. My husband wanted to go everywhere and see everything but I could see I couldn’t do that. So told him to go ahead and Candi I would do our best to take in as much as I could albeit slowly. But I was determined to give it my best shot. I was scared every minute that I would fall down and roll off a cliff or something. My husband reminded me this would not be a good place to have to call 911 so be careful!
So Candi and I just meandered around and took pictures. Without Candi’s help I could not have done it and didn’t want to impose on my husband and he could not have helped me the way Candi was trained to do anyway.
Finally it came time to go back down and all went well again and Candi was so good about it all. When we got back down we took in some other things that were there and sat for a while in the sun. We were tired now and headed on out and then my husband had a rest room stop. While I waited for him a lovely couple came up to me to talk about Service Dogs. You would be surprised at the attention we get this way all the time. One big thing I have learned from this is that the average person knows very little about Service Dogs and we are both more than happy to explain things to them.
This particular blog is just meant to show a glimpse of what a Service Dog can do for someone living with MS for the list of what they can do is extensive.
Next Blog, Getting and Living with a Service Dog and is it right for? Just another great option for people with MS.
Mornings are rough enough, cold winter mornings are even worse. Roll out of bed, flop my legs off the side of the bed and let the shaking begin! If I’m lucky a nice cramp will go ripping through my leg as soon as I try to touch my heel to the ground. When a leg cramp occurs my left leg spasms into a straight pole and will either vault me directly into the wall or shoot me back onto the bed, both are great ways to start the day. Either way I have to somehow try to get my heel on the ground and stretch it out.
It seems no matter how much stretching I do throughout the day my leg aches and never seems to settle down. So I brought this up to my PT and she recommended that I get a brace that would keep my foot at ninety degrees as I slept. When you have foot drop your foot even drops as you sleep and the tendons and muscles in your foot have no weight on them to remain stretched out so when you wake up stretching is a must.
My appointment was made and I headed out to Ann Arbor to the University of Michigan Orthotics and Prosthetics building for a fitting. Really it was quite simple. It went by shoe size and weight so no measuring or molds to be made. I was surprised by the size of the thing...it’s pretty big and bulky to be sleeping in! The doctor showed me how to put it on at night and then showed me the kickstand…really it has a kickstand? It keeps your toes from pointing in or out, I’ve yet to extend the kickstand but it’s a nice feature to have.
For the past two weeks I’ve worn the sleeping boot all but one night and it really seems to make a difference for me. My leg has been less achy and I haven’t had a cramp in the morning since!
Be a warrior today,
Seems like forever since I've had the time to sit down and write a blog. Now that the holidays are over and the snow has settled in, it reminds me of how MS patients sometimes feel isolated at this time of year. Whether you are too tired to navigate the snow or like me; just not sure of myself on the ice and snow, there are ways to navigate these things. With three artificial joints and counting, I know I am very reluctant to venture out. However, sometimes bread and milk do need to be replaced.
If friends and family can't help, here are my strategies.
Reach out, don't be alone. Email me if you just want to chat. I'm here trying to stay warm and keep enough bread and milk in the house. Stay cozy and safe.
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.
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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.