Blog Posts

MS: Benefits of Engaging a Physiatrist

9/19/2016

What is a Physiatrist?

Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.

PM&R physicians are medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury Medicine, MS, Spinal Cord Injury, Pain Management or any other number of neurological related conditions.

Currently, I see a whole host of medical professionals including a Primary Care Doctor, a Urologist, a Neurologist, a Pulmonologist and several other doctors but for the last six months I have been seeing a Physiatrist every 6 to 8 weeks and much to my surprise, it has proven invaluable. Many medical specialists I have seen in the past, focus primarily on one particular medical field and so there isn't always a lot of crossover between specialties. The role of a Physiatrist is to intersect between all the specialists related to your condition.

I met my Physiatrist at a local rehabilitation hospital in Boston. She makes recommendations on areas such as neurology, urology, pain management, rehabilitation and so many more areas. I see her for 30 minutes every 6 to 8 weeks and update her on all of my appointments. She can easily identify areas that I might want to focus on and has a bevy of excellent medical professionals to refer me to. I always leave with a short to do list of goals for our next meeting. Moreover, she makes herself available within a week or two should I need an impromptu appointment.

Many of my specialists book out several weeks if not months in advance. She is not only an incredibly well rounded MS doctor, she has made life changing recommendations on how to manage my pain. After being seen at a pain clinic for over several years, her advice was incredibly and affective. At first I was skeptical as to how effective she could be and was reluctant to add yet one more appointment to my calendar but now I feel as though she is perhaps the cornerstone to my health care. Primarily concerned with overall well-being, she examines my healthcare from a 360° angle.

If you find yourself frustrated that your specialists are too compartmentalized, you may want to consider enlisting a Phystriast. Just reach out to your local rehabilitation hospital and they will most certainly be able to direct you to a specialist in MS.

Here's to a healthy lifestyle!

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.

Me want to exercise? It is a miracle...

8/15/2016

Well, I can't believe we are half way through August already. Why is it summer flies by here in New England and winters seem never ending? I'm not complaining mind you. I wouldn't live any other place. Unless of course I could live on the beach somewhere. All kidding aside, I had every intention of taking the pilot exercise classes by Draryl Kucera that were offered by this amazing site. Unfortunately, due to blood pressure issues, I haven't been able to participate.

I must confess, I was a little apprehensive about doing it. Also I had my doubts about it actually be beneficial to all levels of patients with M S. This past week, I decided to join the group just to observe and find out what it was all about. Much to my surprise, I was very impressed. Not only was I impressed as a patient but as a registered nurse. First, it was extremely easy to view the instructor, and seamless technically. The group helping Daryl responded to my emails.

Quickly, and although I am sometimes technically challenged, they had me up and running within minutes.

My first thoughts when I was approached to taking this class were not positive at all. I always felt out of place at the gym. Much to my surprise that isn't the case with this group. Daryl is the main instructor. He has MS and does all the exercises himself from a wheelchair. I was amazed. He utilizes other clients in the gym along with staff and physical therapy students. Each staff member or student represents each level of disability one does the exercise standing, one sitting in a chair, one standing but holding on for balance and even one sitting on an exercise ball. It doesn't matter what your limitations, they adjust the exercise for all capabilities. You are able to participate in any way you can. You can see all of the other participants. Daryl is able to see you and make sure that you are correctly doing the exercise so as not to hurt yourself in any way. If your camera shy, once you are exercising correctly, you can even turn your camera away. It's easy to ask questions and very very inspiring.

I was more than pleasantly surprised. Please check this pilot out. This class is a great opportunity. I only hope they can bring it to many many more fellow patients. I myself can't wait for the medical clearance to actually participate. For me to be excited about exercise, well now that's just a miracle in itself.

Susan

Courage

7/27/2016

cour·age
ˈkərij/
noun

the ability to do something that frightens one.
"she called on all her courage to face the ordeal"

strength in the face of pain or grief.
"he fought his illness with great courage"

synonyms:

bravery, courageousness, pluck, pluckiness, valor, fearlessness, intrepidity, nerve,daring, audacity, boldness, grit, true grit

Courage is a big word, an important word, and a characteristic that to some degree we all share. It takes courage to free climb up the side of a mountain for an experienced climber just as it takes courage to walk up the stairs for a person managing MS. Courage isn’t only needed to complete an extreme activity...often times it takes courage just to get out of bed and face another day of feeling sick or being in pain.

Recently I was asked “what was going through your mind as you began to share your diagnosis?” I was sick of hiding it from everyone, I felt like I had a better handle on things? The more I think about it really I was scared, I was running low on courage. The thought of being disabled was a huge blow to my life plan, how was I going to teach my son how to play basketball while riding in a scooter? So many negative thoughts coursed through me all driven by fear of the unknown.

Once I began to get a grasp on my new life with MS things began to become more clear to me. I realized that I could help myself by making simple life changes and dedicating myself to being the best that I could be and I gained a little courage. In my life I have seen friends fight courageously against Multiple Sclerosis, Cancer, Depression, and they all fought with everything they had. Recently I was introduced to a gentleman that has his own special brand of courage.

Nathan Denofre was born with Amniotic Band Syndrome, which left him without legs below the knee. After years of wear and tear on his body and multiple surgeries, he was left with degenerative spine narrowing in his back, which will eventually leave him with limited mobility.

In December 2014, former classmates Erik Conradson and Jamie Maki found out about his condition, and they began a fundraising effort to help Denofre pull off one last great outdoor excursion before he lost mobility – or “Nate’s Last Stand,” as it was referred to.

In six months time, over $4,200 had been raised in honor of Denofre – so he decided to pay it forward. Denofre founded Courage Incorporated to aid others with disabilities and help them see what they are capable of. (Courage Incorporated)

During our last correspondence I asked Nate about his courage and why he decided to pay it forward by starting up Courage Incorporated?

“I decided to pay it forward because I honestly believe a good deed can snowball into something great. Bob Marley said it best "bad never takes a day off, neither should good". I always was active. High school football jv and varsity (nose tackle). I was in swimming, wrestling etc. But when adulthood came I quickly realized the challenges that existed in society. I grew a hatred for many things including myself. I blamed society and others for my disability.

When friends got together for Nate's last stand I realized that I wasn't born the unluckiest man but maybe the most lucky of all. I have what society calls a handicap but here I am working 40 hours a week, climbing cliffs with no ropes and spending hundreds of days in the woods! Im lucky because I can do all these things and prove not to just the world but especially myself that most people choose to be "disabled". Only disability is in the mind and soul. And Courage is indeed the key, sometimes we may only have courage..and sometimes that's enough!. I just don't want other disabled people or veterans to feel useless or fill their heart with hate like I did for a long time. Hating others is like drinking poison and expecting others to die, only hurts yourself.”

I’ve decided to take Nate up on his offer and I will be joining him and the Courage Incorporated crew deep in the forest of Michigan’s beautiful Upper Peninsula the week of August 22nd. We will spend our time in the Huron Mountains near the Yellow Dog River...a quick 8.5 hour drive North from Detroit. Nashville is where you would end up if you drove that far South just for some perspective. Our group will include some Veterans and some disabled people, we’ll spend our time fishing, navigating the forest, taking in scenic views and building up some courage.

I will check in as our trip gets closer, I’m excited beyond belief and cannot wait to get out into the woods, the only wildlife I have seen lately is currently jumping on the couch.

Would you like to spend some time with Nate and the Courage Incorporated team? Comment or email me and we will make it happen.

Be a warrior today,

Donn

https://www.facebook.com/groups/615324288596810/

My first online exercise class for multiple sclerosis

6/13/2016

Have you ever thought about how working out more might be a great way to fight Multiple Sclerosis, gain strength, and connect with new friends all around the country? What if the drive there, the work out, and then getting back home safely was a concern and too much at times to manage?

Being challenged recently to do a beta testing of the MS Forward Tele-Fitness program offered in partner with Health Care Journey’s… I figured this was a challenge I would love to try!

Last night with the awesome guidance of Daryl Kucera, Owner and Founder of Fast Forward LLC, MSforward and Powerforward in Omaha, Nebraska the testing of “Tele-Fitness” began by connecting the gym in Omaha, with myself in Carlsbad, CA and another lady on the East Coast.

We worked out for approx. 45 minutes, and as shown in my video, I was certainly challenged. My level of working out recently has been very minimal due to a recent bout of Optic Neuritis, and other MS related health issues. I was skeptical that I could manage, and this would be far too difficult for me to handle.

My first impression was how fun it was to see the trainer, and others working out in Omaha, along with another screen showing me the other people working out remotely. That interaction, along with the positive guidance given to each person by Daryl, leading us through the session made the time fly!

Any apprehension I was feeling before we started: “I’m too out of shape”, “I hate to see myself and my flaws during working out”, and “I won’t be able to keep up with others” were all put at ease immediately. From the very start, no matter where you were located, the feeling of inclusion, and support from all was very apparent!

I was tired, sweating, and breathing very hard at times. Yet, as we all were encouraged, I did what I could, at the level I was able, and surprisingly was able to accomplish the entire session which gave me a huge level of pride in saying: “I DID IT”!

The training is great, and the remote aspect to me not an issue at any point. If you have a laptop, computer, phone or ipad that will allow you to access the website, have a camera and microphone you can be working out too! Barb worked with me a few day prior to ensure I had the “technical aspect” mastered… and if I can do it, anyone can! She was awesome, and walked me through the 3 minutes it took to download the software needed and test that we could connect.

We all have different levels of ability with MS, we all have good and bad days but I would say why not give this a try! When we are remote or isolated at times, this opens a door to meet new people, improve our strength, and laugh as we have fun together! I didn’t have to drive anywhere or secure transport to go to a facility as usual for Physical Therapy.

Check out “snips” of my experience (please don’t laugh too much), and come join us! (you can email us at [email protected] if you are interested) I’m looking forward to next week, and to see how this type of exercising with others, all the while in my own home brings me to a higher level of health and fitness.

MS, Take a HIKE!

Terri Yonemura

Views on Starting Online Exercise Classes

6/6/2016

I was asked to write a blog about the upcoming trial of the online exercise classes that will begin soon. Someone asked me how I felt about taking the class and did I have any concerns. When I began to think about it, my first response was " I don't want to even try it". How can they possibly bring all levels of patients together and develop something fit to every ones needs?

As some of you know, there are many days when we wake up despite our diagnosis, that we just don't want to even move. I hate exercise. However, we know it truly makes us healthier. For some our MS makes it very difficult. As for me, I have horrible balance issues, muscle spasms and severe numbness and tingling. So that said, my activity level has greatly decreased.

So with trepidation, I will give it a shot. I try as hard as it is sometimes to see the glass as half full. Trials help answer questions and concerns. Maybe the program will need separate classes for individuals needs, maybe each level of patients will inspire others with support and guidance. I don't have the answer. I only know it never hurts to try. I'll keep you posted as I begin this journey.

Do I look forward to exercising? Hell no, but I'll keep trying and thinking of it as a way to make new aquaintences and possibly do my body good. Stay tuned. And if any of you want to join us, there is still time to sign up. Just send an email to [email protected] and let them know.

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.

A Year of Transitions with Multiple Sclerosis -- By Donn

3/25/2016

2015 was a year of transitions for me, new MS drug, new daughter plus an increased caseload at work. Most of these changes have been great so far.

I couldn’t love anything more than my daughter (don’t tell my wife or Son). She has been such a blessing! Whenever I stumble into the room she is there with a big smile and recently a “Dada!” to go along with it. She makes me weak in the knees, or is that the MS? Either way she has really been a great addition to our family. Originally I thought having two kids would be twice the work of having one? I couldn’t have been farther off with that prediction. One kid was tough to start but after awhile my wife and I had it down, how much tougher could another baby be? Much tougher! Now it's man to man instead of zone, there is no more “Toss me a diaper would you?” Now if there is a diaper disaster taking place I’m all in as my wife is busily tending to my son.

Along with my kids at home I have 12 more at school, and while I might not be changing diapers for those munchkins I am waist deep in paperwork for them. Teaching special education I guess that is par for the course, this year just seems to have a few more meetings than the past few...combined.

Often times I feel as I am juggling the two occupations, dad and teacher and doing ok. Other times I feel like one or the other is consuming all of my time. This is the struggle all working parents have I guess but if I neglect my other occupation as a person with Multiple Sclerosis that's when things really get interesting.

Between dadding, teaching and MSing things have been extremely hectic for me. I’m still cruising on the Paleo diet and that’s all good, I can only imagine how I might feel if I wasn’t eating well? My eyesight has really started to take a turn for the worse. My hands have become really weak and my balance has left the room.

With all the added stress from work and home maybe this wasn't the right time to change medication?

Be a warrior today,

Donn

Reiki and MS

2/19/2016

Modern living can leave us feeling separate. From others. From ourselves. Sometimes from life as a whole. We get so lost that we forget ourselves, our true nature. We lose track of why we are here and why we do the things that we do. But tucked within us is the knowledge, the spark, that there is something more. If we can tune into this whisper, a boundless world opens up. Exactly one year ago, Reiki was this spark for me.

Reiki translates as “universal life-force energy.” That vital force that is life, that allows us to breath and move. That runs through our bodies in meridians and baths every one of our cells. Prana. Chi. Qi. All of it is Reiki. All matter is energy, everything is fluid, nothing in the universe is fixed.

So when we “perform” Reiki, there is nothing to the procedure. We lay our hands on a recipient, or we allow our hands to hover over their body, or we just have the intention of healing and we offer a service to those who are miles away! If Reiki sounds a little hard to pin down, you are trying too hard. As soon as you try to put parameters around Reiki in a way that makes sense to your current brain, the concept wriggles away from you and you are left dumbfounded by another inexplicable Reiki encounter.

So just relax and breathe into what it has to offer you. Open to the unknown possibilities. Entertain the idea that there is no self. That nothing separates you from another. That nothing separates you from the eternal flow of energy that is always running through and around you. Become one with everything so that there is no you and Reiki, no you and the recipient of Reiki. We are all just one, exchanging our good vibes back and forth freely through time and space.

Is this far out? Yes. But is it possible? When we question our perceptions, the universe bursts forth into limitless wonder. Modern science is chiming in with the proven effectiveness of positive thinking and of prayer. The brain, once thought immobile and set by a certain age, is now commonly accepted as ever-changing, if we think the thoughts and believe the believes that make us conducive to change.

The Power of Positive Thinking
http://www.abc.net.au/radionational/programs/allinthemind/the-scientific-evidence-for-positive-thinking/6553614
Reshaping Your Reality with Belief
http://www.npr.org/templates/story/story.php?storyId=104310443

Now this may all seem a too conveniently crafted analysis of the powers of Reiki. Take it or leave it. Or take some and leave the rest. I have always found that it is more dangerous to accept the status quo than it is to accept something that others may deem “too crazy.” The biggest teacher of universal love is Reiki itself. Book an appointment with a reputable practitioner and try it for yourself. Do a little research on Reiki trainings and find a good fit for you to begin your journey learning it. Once you become certified in Reiki I, practice it on yourself every day. Every. Day. Let the flow of this energy become a normal and natural part of your life. Literally get into the flow.

As someone who has tried various healing modalities over the course of decades, I can say that out of all of them, Reiki has made the most consistent positive impact on my life. It is not an exaggeration to say that I am a better person because of Reiki. I love myself more. I give more freely. I am forgiving. I am gentle. I practice Reiki on myself every day. I send distance Reiki to others every day. I volunteer for hands-on Reiki healing once a week at Brigham & Women’s hospital. I offer Reiki to any friends and loved ones who will accept it from me. And I am fortunate to have clients who trust me enough to do this energy work with them.

Reiki is not a cure for all that ails us. It is our entry into the limitless compassion and love that heals us at our very core. Once we acknowledge our right to feel better and our power to be able to provide that relief for ourselves, there is no stopping us.

Be love and Be loved,
Preet

MS & How To Borrow Adaptive Equipment

2/17/2016

If you read any of my blogs then you know that I am pretty keen on passing along resources that might be helpful to you or someone you know. Recently, I was being measured for a new wheelchair and got to chatting with the physical therapist about what to do with some adaptive items that I no longer use. It's always nice to see these things being recycled. Especially because adaptive items can be so expensive!

Much to my surprise, there is a website where you can borrow or donate items such as wheelchairs, medical beds, adaptive strollers, and all sorts of other things. If you are in the market for some new adaptive item but aren't sure if you want to make a purchase, you may want to borrow it first to see if you like it.

The link is:
http://dmerequipment.org/search.php

On a closing node, the winter is almost over!

Limitless Lizzie

With MS There Is Always An Issue

2/8/2016

Hello fellow New Englanders. I know this time of years can be a challenge with ice and snow. So far though, we have nothing to complain about. For some, winter is a time that many of us either hanker in until spring or try and travel to warmer climates.

In my case, it's the latter. As a medical professional, I thought I knew the ins and out of how to cut through insurance red tape and vendor issues. However, I couldn't be more wrong. This past year, my mobility and balance have deteriorated and as a nurse, I proactively began the process of obtaining a portable scooter for assistance.

I began the process in July of last year. I made it very clear it needed to break down and be able to fit into my car. I would not be using this every day in my home. First step, I checked out my insurance coverage and talked with my MD. So far so good. I then went for a PT evaluation with a scooter company. They measured me, asked all my specifics and took all pertinent info. They informed me it took three months to order scooter and process all the necessary paperwork for insurance to approve. Ok, so I wasn't planning on traveling till February. Great, I had checked all my I 's and crossed my T's.

Wrong again. Christmas rolls around. Still no scooter. Phone call after phone call. Company says I have no coverage I need to pay 10k dollars. Well to make a long story short, I must pretend I am the provider (a lie of course) to bothe the mobility company and the insurance company. After four hours and fifteen different calls, I finally straighten it out. My last calls were to tell the senior managers about the lying that was necessary to correct all the red tape. So now you think I'm a happy patient right?

My scooter was delivered two weeks ago. Wow, it's the Cadillac version. Yup it breaks down in three pieces. Great, but each piece is so big and heavy there is no way I could lift them. The man who delivered it can bearly do it alone. Oh so that's not all. Can't store it in extreme temperatures. Umm its 20 degrees in my garage. So off to buy a heater for my new Cadillac. Lastly, you should run the battery down weekly. Hmm. Anyone want to snow mobile with me?

What's my point in all of this? As patients we run into so many issues. Don't despair. There is always someone to help. Reach out.

I rented a scooter for vacation, my neighbor will house sit the Cadillac and keep it warm, and as for the battery, I'm hoping it starts when I need it. Stay warm everyone.

Susan

The glass is always half full

12/3/2015

I haven't written a blog lately but not due to illness thank goodness. In previous blogs,I talked about finding the right doctor. Whether it's your first MS visit, whether you or your doctor relocate, or if an incident occurs which makes you want a second opinion or for other reasons you just need a change in provider, don't hesitate. Act.

Doctors and patients don't always "gel". That said, if this happens, don't despair. After waiting for an appt with a new specialist for five months, I saw a new neurologist today. The hardest thing about changing doctors is obtaining copies of all your MRIs and medical records. Now that I have finally obtained them back to 2003, I will use the MRI storage app this website recommends. As for notes, reports and labs, there is a fee to obtain these records. In my case, the hospital wanted 200 dollars. Instead find a laser printer and print records from your individual patient site or portals if you have access. One hour of printing and no 200 dollars fee.

Yes, new doctors appointments may be repetive and long, but sometimes bring new ideas and expertise. I can honestly say, I am happy I took the time and made the effort. Symptoms I have experienced for the past eight months finally addressed and hopefully will be alleviated. Time will tell.

I'll take this time to wish everyone a safe and happy holiday season. I'm getting a scooter for Christmas. Not my first choice. Will keep you posted on how to adjust to one and make the best of it. Remember the glass is always half full.

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