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.  

• Go out when you are most rested. 
• If you nap as some of us do, go out immediately after.  I wait until the sun is out, and temperatures are at there highest. Noon is a great time. There is less ice, and chances of falling hopefully decrease.  
• Use carriages even in parking lots. They are more stable than a single cane. Even if you don't have balance or walking issues, a carriage can lessen fatigue and let's face it, even individuals without MS can slip and fall.  Accidents happen to everyone.  Sometimes just a short trip to the grocery store or mall can brighten your mood and make you feel less isolated. 
• I also invite friends in for coffee or lunch. Yes, sometimes I have them bring lunch.  They feel needed believe it or not, and feel like they have done you a favor.  Most of all you are able to catch up.  We sometimes feel we don't want to be a burden, but sometimes we are helping our friends in the long run.  Friends and family want to help.  They at times don't know how.  By asking for company, or by just saying can you run and get me a loaf of bread, you have solved their dilemma of how they can help.   It's really quite simple.  You have so many resources out there. Each town also has so many resources if you just make an effort to use them.  A simple phone call and reaching out can make all the difference. 

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.

Susan

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.

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.

--Susan

I have been on aminopyridine for over three years now. As per the advice of my doctor, I obtain this drug monthly from a private pay compounding pharmacy because the FDA approved brand, Ampyra, is not covered unless you are ambulatory. Until recently, I always vacillated back-and-forth on whether or not the drug was actually improving my upper body function.

My doctor increased my dosage from 15 mg daily to 25 mg daily about three months ago and my increased upper body strength and endurance has been surprisingly significant. I am now exercising about three times a week for 60 minutes each session.
 
A brief background on the drug:  4- AP/ 4- aminopyridine is prescribed for people with multiple sclerosis. It is a potassium channel blocker that can improve walking and other motor functions. There is a commercially available FDA approved version of  4-AP known as Ampyra. There are a number of side effects including but not limited to seizures. I have been very fortunate and have not experienced any side effects from this medication since I began taking it.

You are probably asking yourself, how can I be so convinced that the aminopyridine is actually working. What I know is that when I have gone off the medication for short periods of time, my upper body function has suffered. Of all of the medications that I have tried over the years to help control and even improve my MS, this one remains a staple in my arsenal.

Wishing you a Happy Spring,
Limitless Lizzie

P.S.  A bit about me...I have been diagnosed with MS for over 20 years and am currently being treated for secondary progressive MS. I am married with a beautiful little boy and until recently worked full-time using both a manual wheelchair and at times a power chair. I battled stage III breast cancer and consider myself to be a survivor. I am grateful to be a part of this community and share my experiences with you and hope that in some small way they may be useful to you.

After being fitted and properly calibrated I was free! Dianne my Bioness rep gave me a few pointers like “only wear it for 20 minutes at first and gradually increase each day so your muscles can get used to the electricity.” While that sounded like good advice I didn’t listen at all!  After being slowed down for the past few years by a toe off, then a KFO and finally the Mamba (My huge cane) it was very liberating to walk using none of it.

Walking out the door electrified and with the ability to use both hands (since I had ditched the Mamba) I took my first steps as a free man. I walked to the trunk of my car and stuffed in all of my now useless equipment. I felt like I was in a gangster flick as I closed the lid. As I drove home my mind raced with possibilities, “I could go to the zoo…or the game…I could walk around the mall…I hate the mall, never mind.” So when I got home I got out of the car and walked two driveways away from my house and turned around and came back, totally wiped out from the trek.

It took me a few more months of physical therapy with Mary but eventually my strength came back and my left leg muscles grew to match my normal sized right leg. To this day I am still blown away by the fact that I am able to normally walk around considering what I thought was going to be the next stop on my journey through MS.

There is a brand new motorized scooter in my garage, its sweet; it has a basket a headlight and a holder for the Mamba. In the basket is the card for the contractor that measured my house for ramps so I could drive up into my house. When I took delivery of the scooter I was a wreck, it was all I could do to not break down and cry after the delivery guy took off. I sat there in my driveway on a sunny, cold November morning and thought to myself “This is really happening, this is it?”

I took it out for a spin and went around the block once and then I put it in the garage where it still sits. It was somewhere soon after that ride that I made the changes in my life that have lead me to this point in my journey, it was then that I took on a warrior mentality. By changing my diet and getting the crazy leg zapper full of alien technology I am now able to walk around the block with my family, happily kicking MS down the block as we go.

Be a Warrior Today,

Donn

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."

As you can tell from my blogs, I'm a a pretty positive person and try to make lemonade when life throws you a bunch of lemons.  As I sit here in extreme pain from what I can only describe as "Charlie Horses", it's very hard to think of the positive.  I recently returned from what I thought would be a very relaxing vacation in Antigua. My agent who booked it called the resort to ask about walking and stairs and they assured her that there was minimal walking and just a few steps to pool and beach.

Upon arriving at resort,  there were thirty six steps to get down to the pool and beach and the resort restaurants were three football fields away from my room.  I asked for a wheelchair and three days later, it arrived broken and wobbly.  As you can probably imagine, I was furious. I walked as much as I could and just kept telling myself it was great exercise.  Each day, the spasms worsened and the muscle fatigue increased. With two new hips and now the spasms, my back began to have spasms also.  The combination of stairs, walking, new hips and pain had irritated the spinal fusion.  On the bright side, it was 80 degrees every day and beautiful sunshine. I can only say that I thank God for a great family and my dear friends. With their help, I managed to make it home safe and sound. 

Why did I write this blog you may ask?  A few reasons.  First, although we have the ADA in our country, not all countries follow those rules.  Always do research when traveling outside the country.  Do not leave it up to an agent to ask the questions. Dig deep to get real answers.  Second, have a support system in place to help you both physically and mentally.  I normally walk well with a cane and never ever thought I would have the difficulties I had in Antigua. In the future, I will be much more prepared for what can possibly go wrong.  Although this is not a positive story, I hope it can help others who travel.  I will blog again when I have some answers about what is causing these symptoms and possible help for relief.

One last note, one of the "Tips of the Week" on this site was about traveling in wheel chairs or with limited mobility.  Use that link http://wheelchairescapes.com/ as it is a great site.

--Susan RN

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.