MS Tips

MS Tip of the Week

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Hi, I noticed you put tips on your website and I would like to make a suggestion of a tip to help with medication management. There are two apps that I have been using for 4 months now, one is MediSafe and the other is Mango Health. MediSafe has a few more options to keep track of doctor information and appointments, but the basic function of both is to remind me to take my meds.

I found a wonderful online exercise site. There is a variety of plans and levels, they are mostly free, and one can create a personal diary to follow progress - very motivating. Everyone can find something according to their shape and fitness level. I was too lazy to go to the gym, and worked on bunch of those exercises all winter and spring, and I am in a great shape! Good luck everyone, stay active!

https://www.fitnessblender.com/

Ana

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. For further information check out: http://www.perkins.org/library

TIP: I am always looking for ways to make navigating my iPhone easier. The new iPhone 6 series promises to do just that. My finger strength starts off strong in the morning but gets weaker throughout the day. I currently have an iPhone 4 and it requires me to press hard on the home button to unlock it and make phone calls. I just ordered the new iPhone 6. Apple claims that the iPhone 6 can do the following:

"With just a touch of the Home button, the Touch ID sensor reads your fingerprint and unlocks your iPhone or iPad. You can also use it to authorize purchases from the iTunes Store, App Store, and iBooks Store. Touch ID is capable of 360-degree readability, which means no matter what its orientation, your device reads your fingerprint and knows who you are. Learn more about Touch ID security."

TIP: David Mohr's book, The Stress and Mood Management Program for Individuals With Multiple Sclerosis: Workbook (Treatments That Work) is a GREAT tool for stress management. You can read it yourself and bring it to your therapist if they don't have much experience with multiple sclerosis.

Power Assist Wheels: They fit on your manual wheelchair so your chair is still collapsible which is nice if you are traveling in a car. Also, they offer considerable power while still giving you an opportunity to get some exercise by pushing your wheelchair. You just plug them in overnight and they are charged for the next day. The drawback is that they are heavy and cost around $7000. Most insurance companies do approve them with a physician's recommendation.If you need a little more than a regular manual chair offers but are not ready for a power chair you may want to consider looking into power assist wheels. If you are interested, check out the following link (http://www.frankmobility.com/docs/EMOTION%2520Brochure.pdf). These are the wheels that I have and I really like them.

Check out this app...
http://www.axsmap.com/ Use the app or web site to find accessible places in your area. Browse for restaurants, or whatever. Let others know how accessible places are by rating them with a few clicks. Share places that are accessible or let friends know what places aren’t accessible through Facebook or Twitter.

The Multiple Sclerosis Foundation (MSF) has launched a new online radio station, MSFocus Radio. Found on the web at www.MSFocusRadio.org or on mobile devices via a free app. Featuring original content produced by the MSF in conjunction with our panel of healthcare experts, MSFocus Radio provides motivation, education, and empowerment to people affected by multiple sclerosis, 24 hours a day, seven days a week. MSFocus Radio is the MS resource that travels anywhere, thanks to free apps for both iOS and Android devices (available through iTunes and Google Play) provided by the MSF. Noting the station’s worldwide availability and round-the-clock scheduling, MSF Co-Executive Director Jules Kuperberg commented, “MSFocus Radio has dramatically broadened the scope of MSF's outreach both nationally and worldwide.” To listen to MSFocusRadio or download the apps, visit www.msfocusradio.org now.

If you are in a wheelchair or have issues with mobility making mammograms difficult, here is a tip for you...
Speak with your physician about getting an annual breast screening MRI instead of a mammogram. Read more in this blog...CLICK HERE

In regard to a scooter I would recommend to people with MS, I like the ease of disassembly of the Pride GoGo Traveller Elite http://www.pridemobility.com/gogo/gogoelitetraveller.asp and/or the Golden Technologies Buzzaround http://www.goldentech.com/products/buzzaround-lite/. When choosing a travel scooter also keep in mind the weight capacity of the unit and distance capability, as these vary - Tom Mellor, Assistive Technology Professional (ATP). To read more about Tom, Click Here

There are great adaptive sailing programs all across the country http://adaptive.ussailing.org/Where_to_Sail.htm. I have attached pictures of Boston Harbor from the day I went sailing with the adaptive sailing program at Pier’s Park Sailing Center in East Boston. This is a great program and has helped many people with disabilities try or get back to sailing. The staff at the sailing center are very friendly and helpful. I highly recommend this program and to see more information please feel free to view their link at: http://piersparksailing.org/adaptive-sailing. The list of programs across the country is continually being updated and improved and we ask that you contact cindywalker@ussailing.org if you know of a program that needs to be added to this list.

If you are considering stem cell treatment, you might want to visit the following site to gather information:
http://www.closerlookatstemcells.org/
This website shows you all the wheelchair vans & lift dealerships in your state:
http://www.braunability.com/wheelchair-van-dealers/
Active Hands Gripping Aids (http://www.activehands.com/us/shop.html) are very helpful for a wide range of tasks - at home, in the gym or out and about. They work by tightening a strap in the upper section, which gently pulls the hand into a fist shape, adjusting to hold items in the palm. The wrist strap is also adjustable and the aid is padded to reduce chafing. These grips can help with things like working out in the gym (e.g. holding free weights, using a rowing machine, playing on the Nintendo Wii, DIY at home (using a saw or hammer), holding a pool or snooker cue, rowing or kayaking, gardening, holding a glass or bottle.

Has reading become challenging? Have you heard of The Talking Information Center? It is an award winning radio reading service that broadcasts the reading of printed material. Access to their service is provided over an extensive network of radio and cable TV outlets as well as streaming online twenty-four hours per day. They also stream audio on their web site, and are now offering podcasts. To get more information, call 1-800-696-9505. or visit http://ticnetwork.org/listen-to-tic/national-service/ If you visit their website, click on the "Listen Live!" icon in the top right hand corner to try it out. It is free!

Did you know that your balance can improve through a series of exercises? Just as a muscle gets stronger through exercise, so will your balance. Consult a physical therapy balance specialist to get optimal results. You want to find someone who understands MS and knows how to challenge balance effectively using various sensory (visual, vestibular, and proprioceptive) challenges.
Want to travel? Here is a company recommended by a person with MS who used them and had a very pleasurable travel experience. Wheelchair Escapes was created by Kristy Lacroix in 2002. Kristy’s husband has multiple sclerosis and cannot walk. After encountering numerous nightmares on their travels together, Kristy decided that there had to be an easier way for the mobility challenged to travel, so she created Wheelchair Escapes. http://wheelchairescapes.com/
"Advocate for yourself! Something so simple that I had not thought of in all of my previous interactions with insurance. I was so used to just answering the questions they had, providing the bare minimum. This time when I was checking to see if the Intestinal Permeability and NutraEval tests were covered, I asked, “Does coverage depend on what the tests are for? I have multiple sclerosis and the conventional therapies have not worked for me and were making my symptoms worse. So now I am working with doctors to try and figure out if there is something else going on.” It took them three weeks to deliberate, and two follow-up phone calls from me, but the same woman I spoke to originally called me back. She said many people had input on it, with emails floating back and forth between insurance and nurses, but that the tests would be covered in full. In full! This has never happened to me."
The rollator (seated walker w/ hand brakes) is a wonderful product which has become increasingly popular as an ambulatory device for many people with MS. However, a rollator is NOT a wheelchair. There is great danger in using a rollator as a wheelchair, as a rollator's frame does not lock and a rollator folds differently than a wheelchair. If you use a rollator in this fashion any transition in terrain is a fall risk. What is the solution? There are rollators that are especially designed for this usage. It is a "hybrid" rollator/transport wheelchair. Contact your local medical supply provider or therapist for details.

"In this cold weather, I find wearing mittens is much better than gloves. Your fingers help keep each other warm. I also know if I am staying outside for a longer period of time, I buy hand and foot warming packs. They work great. Always keep your head covered as I'm sure you are all aware that is where we lose our body heat."