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,
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@example.com 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!
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 firstname.lastname@example.org and let them know.
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.
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,
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.
WARNING: MIGHT BE TOO GRAPHIC FOR THE FAINT AT HEART...
I knew I was in for a very interesting test when I entered a hallway in the hospital marked "Nuclear Med"... thought, wow haven't seen this before!
Until last week I had never heard of a "Gastro Emptying Nuclear Testing"...if that little embedded word "nuclear" doesn't jump out at you as if watching a 3D horror movie nothing will, right?
Upon arrival, tech says to me you need to at least eat the part of the egg sandwich on this tray that he will prepare with a nuclear solution.
He proceeds to open a metal military looking box with red warning stickers on the outside of the container (similar to cross bone warning symbols.) Next, removing a syringe filled with the “mystery” contents he injects the liquid into a portion of the sandwich in front of me.
Then asking, "do you want to feed yourself, or do you want me to do it for you? Are you kidding me! Of course I want to feed myself... who doesn't? So I'm told if I'm going to feed myself I need to wear protective gloves and covering. Hum, so it's ok to eat the "nuclear liquid'.... swallow it into my body, and oh don't worry you won't absorb it, so no fear...
But, if you want to feed yourself, you need to wear protective gloves? Seriously? What is wrong with this picture?
It was explained to me there is no fear of danger from the injection because:
1. You are ingesting a very small amount...And who determines what small means?
2. The chemical isn't "absorbed into your body, you excrete it out in bowels"...gross right?
Note to self: Go home and consume extra dose of laxatives to get this removal process going ASAP! Of course, this isn’t recommended… but can’t blame a girl for the thought right? As a good patient, I eat the injected portion of my egg sandwich, a bit of canned peaches and drink some of the milk provided.
Next on today’s fun filled agenda I’m instructed to lie still for 2 straight hours on the usual x-ray table. Imagine a camera the size of a car tire being pointed directly at your stomach. This huge device will be taking photos of how you’re your tummy is pushing food into small intestine.
That brings up another entire horror, 2 hrs without a break! Of course about an hour into the test my kidneys said " Yes, I know you took me to the bathroom an hour ago" but WE need to go NOW!
So when the little guy came by next and said " how are you doing?" I replied, I REALLY need to pee! He said, yes that’s the hardest part...Are you kidding me? Tick tock tick tock
I am miserable at this point needing to pee. I'm thinking why have I been so stubborn to not wear the new "fancy panties" ...sorry, I have this hatred for the word "adult diapers"...
So I'm now thinking at least I wore a pad today, but it isn't positioned for lying down. I pear around and don't see the evil tech around and reach to try and tug the pad backwards a little. Hoping the camera isn't capturing this! I give the pad a tug, and feel the darn thing rip because for once the adhesive is holding on as if it's super glue!
At this point I'm beyond needing to pee in agony and thinking ok do whatever you got to do kidneys. Just go for it! And nothing! No matter how hard I try to tell my bladder let it rain, I cant despite the roaring agony I feel! Tick tock tick tock ... Tech says 38 min
Now not only my kidneys are raging but my foot spasms decide to start dancing. Have you ever tried to stop your toes from "twirking" with a tire on your stomach and your bladder is locked up in a protest against you?
Tick tock tick tock
8 minutes the tech announces ...
The longest 8 minutes I have ever been in!
Tick tock tick tock!
Finally, he cheerfully lifts the tire!
I blare at him BATHROOM NOW!
So, guess where I drove after leaving hospital...Straight to Rite aid for the purchase of my first package of "fancy panties"! l hope you all get a laugh out of this horror!
Ok, to the point of my question: Have any of you encountered "Gastro Paresis"? If so, can you tell me how you deal with it, and how you manage your diet?
I understand it has to do with how long it takes your stomach to propel food into the small intestine, and that MS is a known culprit to have abnormal function of the muscles in the stomach to process food properly...
Apparently, the normal range is between 60-120 minutes or as my Dr. stated normal is 90 minutes.... (Identifying the time it takes your stomach to move/empty food into the small intestine.) My reading was 836 minutes (approx. 14 hours... hum, guessing that's a little slow.. haha)
Here are the details of "what" it is:
Gastro paresis is a condition in which your stomach cannot empty itself of food in a normal fashion. It is caused by damage to the vagus nerve, which regulates the digestive system. A damaged vagus nerve prevents the muscles in the stomach and intestine from functioning, preventing food from moving through the digestive system properly. Often, the cause of gastro paresis is unknown. However, the causes of gastro paresis can include:
Gastric surgery with injury to the vagus nerve
Medications such as narcotics and some antidepressants
Rare conditions such as: Amyloidosis (deposits of protein fibers in tissues and organs) and scleroderma (a connective tissue disorder that affects the skin, blood vessels, skeletal muscles, and internal organs)
My Gastro Dr. had ordered the emptying test among other tests to understand what is going on in my system. I had a bout approx. 16 yrs. ago where I was choking on everything I ate and a blockage in the esophagus was cleared with a scope and small balloon. This has flared back again, but this time the esophagus isn't blocked when the upper GI testing was done a few weeks ago.
I have many bouts during the year where I am vomiting many times a day for weeks on end, and choking while eating. Recently I went through a session every AM and was to the point of coughing up blood due to the irritation and damage being caused to the esophagus. Having been on Reflux meds all this time now starts to present a problem, as there aren't many choices and your body builds up immunities over time to the first level of those meds.
I need to either be able to get it under control better through eating very small and easy to digest foods, or the next phase will be a more advanced sort of medications including Reglan, which are very harsh and difficult side effects.
There is no cure for Gastro Paresis and the long term problem if not controlled can lead to temporary or long term feeding tube placement, which I will fight with all I have to not advance if possible.
Each suffering person has to find the balance of eating the proper amount and types of food to keep your system allowing food to digest at a more normal rate. There are 3 levels of diet you move between given your current status to try and alleviate the severity of this disease.
Gastro Paresis, among other problems can be a door that Multiple Sclerosis opens just when we think we have things under control. We just have to take it one day at a time, and educated ourselves to handle each hurdle.
Thank you for laughing with me, through the path. Sharing information, helping others and telling our stories… seems to me to be the best way to be the strong Community we are!
Since my last check in I have begun a new drug to treat my MS, Gilenya. After a few happy years on Tysabri my neurologist decided that my risk of PML was to great considering that I am JC positive. While I was ecstatic that I would no longer need to be infused for hours each month I was hesitant to leave the protection I believe Tysabri gave to me.
When I was in the middle of an exacerbation a few summers back it became obvious that Copaxone was not performing as expected and Avonex had already failed Tysabri aggressively stepped in and stopped the bleeding. 3 years later and I can’t complain, short of a Mono virus attack Tysabri was bullet proof. Don’t get me wrong when it came down to PML or a new drug the choice was pretty simple. But I do miss Tysabri?
How can you miss a treatment or have feelings for that matter? I will not miss getting jabbed or answering the questionnaire but I will miss meeting the people. Over the years I think I sat through about 40 treatments, some longer some shorter, but all were interesting in their own way. When I first started infusions I would check into the hospital and get admitted, my own room with a TV and bathroom, meals delivered and nurses that thought I was a local celebrity due to a paperwork error.
I met many people just starting their MS health care journey and I met people that had been on their journey for decades. We shared stories and knowledge, I taught and I learned.
You have a lot to live up to Gilenya.
Be a warrior today,
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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.