One of the biggest challenges for the nearly one million individuals living with multiple sclerosis (MS) in this country is the unpredictable nature of the disorder. Nearly 85 percent of sufferers have a relapsing-remitting form of MS. They struggle with uncertainty in daily living because problems with mobility and vision often times wax and wane.
As MS progresses, affected individuals often need additional adaptations to their living space. While some people with MS need added features for stability while walking, others require modifications that assure wheelchair accessibility. Consulting a contractor prior to planning a major renovation is often wise move, since major renovations typically require teamwork.
The good news is that patients and their families can undertake a number of simple home improvements that will boost home safety and comfort. Consider these eight easy fixes:
Excess items in a home translate into navigation hazards. In addition to removing items not used often, this is the perfect time to find easy-access spots for objects used frequently. It's also important to maximize the number of clear surfaces that help an individual balance.
The easiest navigation occurs on thinner flooring such as hardwood, tile, or relatively thin carpeting. If it’s impossible to part with a rug, adding non-slip padding plus tape is helpful.
Put Furniture to Work
This is a great opportunity to give rooms an updated look by rearranging furniture. Pieces such as sofas, dining tables, and dressers can assume double duty by offering walking assistance, provided they won’t move.
Solve Door Dilemmas
It’s hard to enter and exit rooms with round doorknobs. Updating doors with handles that are levers or substituting touch controls for knobs can improve access.
Create Visual Contrast
MS creates vision problems that sometimes make it difficult to move around with confidence. Using contrasting light and dark colors throughout a home can aid navigation. One example is using a dark-colored switch plate on a wall painted a light color.
Move Up a Level
Raising beds and chairs makes it much easier to rise from them. Many stores sell high-top chairs and dining tables. Blocks can serve as bed risers. It’s even possible to buy an elevated toiletseat.
Remote controls turn a residence into a smart home. It’s possible to manage room temperature, turn appliances on and off, and control a number of other functions with devices that eliminate the need to walk from one area to another.
Revamp to Unwind
Now is the time to eliminate features that foster stress. It might be wise to say goodbye to that annoying mattress or uncomfortable sofa and create a living space where it’s easy to unwind.
Major home modifications are necessary to make life much safer and more accessible for some individuals with MS. Many projects require professional expertise and take a significant amount of time to complete.
These areas of a residence often undergo significant renovations to accommodate MS symptoms:
The most common modifications include covered entrances, ramps or other step-free access, and widened hallways and doorways.
A raised toilet, a low or no-threshold shower, and a shower chair all help with navigation. Faucets operated with levers and grab bars outside the tub and shower also make life easier.
A number of kitchen modifications are wheelchair-friendly: lowered counters, added space under counter tops, raised dishwashers, and ranges that feature front controls. Side-by-size refrigerators and front-loading appliances are also particularly helpful for those with MS.
Consider installing light switches and thermostats at levels lower than normal and raising electrical sockets throughout the home. This is also a good time to consider moving to rocker-style light switches.
Do you think you could profit from professional advice on how to make a home safer and more convenient for someone with MS? Be sure to contact a Multiple Sclerosis specialist and ask for recommendations that can improve the lives of individuals suffering from this life altering disease.
Gary Ashton is the CEO and owner of The Ashton Real Estate Group of RE/MAX Advantage. His real estate team is #1 in Tennessee, Nashville and now #4 in the world.
I wrote a blog post recently for the Society of Participatory Medicine about Service Agreements among Friends and Colleagues. My point was that service agreements set boundaries and expectations, which can be especially important for someone who’s managing a chronic condition. What if we had service agreements with members of our health team, professional and non-professional? And ourselves. Could we think of care plans as service agreements? Person-centered care planning focuses on the goals of the person on the health journey. Who’s going to do what to get there? When? How will these goals and activities be tracked and shared across time and settings? The service agreement is the who's doing what to get there and when are they going to do it?
One of my personal health goals is to progress as slowly as possible with my Multiple Sclerosis.
My part of the service agreement:
Now I better share this with them. I think they'll get a kick out of it and say we're already doing it.
Danny blogs weekly at http://www.health-hats.com
Danny van Leeuwen, Opa, RN, MPH, CPHQ
Danny, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with MS, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. Danny focuses on learning what works for people - patient-centered research, communication at transitions of care, health planning and informed decision-making, and technology supporting solutions created by and for people. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Communication and Dissemination Advisory Panel. Danny is active in the Society for Participatory Medicine. Danny blogs weekly (www.health-hats.com) and was recently published in BMJ.
I have often heard that we should live in the present. This is so very true. Like the saying goes the past is gone and the future has yet to come. Dealing with MS can be so difficult at times, but all we really have is the hear and now. Dealing with emotions and a chronic disease is sometimes so hard that it's necessary to live minute by minute or hour by hour. Remember life can change in a second.
We all know this because it changed the day you got this diagnosis. I remember that day so well. I was devastated. I am a nurse. My mind went to places I never ever want to see. We can't predict the future. So after a few weeks of crying and feeling bad for myself, I picked myself up and decided to live one day at a time. Some days are great and some not so much. Sure I still have a bucket list and think about the future. I just try not to put pressure on myself. If I plan something it's in the back of my mind, this might not happen. If it does, I'm elated and if not, there will be other times. I know this all sounds rosy and yes I still have horrible depressing days. However, that's when I lean on my loved ones, my friends and yes all the amazing people who I've met along this MS road.
There are so many resources out there and wonderful people trying to make a difference and find a cure. So if you can, please live one day at a time, or one minute at a time if that's the kind of day it is. I know it's cliche, but stop and smell the roses.
Well it's been a while since I've written a blog. We all get busy with life and it's ups and downs. This is the time of year that I reflect on the past and look to the future. It's kind of like the Christmas Carol or it's A Wonderful Life. Having MS during the holidays can sometimes be very difficult. The hustle and bustle of shopping, holiday parties to attend and just trying to keep up with every day tasks can be overwhelming.
I've learned that you really have to pace yourself. Putting pressure on yourself only leads to exacerbations and depression. I learned this the hard way. For years I always ran around and scheduled every minute of the day. Don't. For me it just lead to IV steroids. That's definitely not on my Christmas List.
Now that I'm older and wiser, I start my shopping in August. Start it on a month there are five pay checks. Buy one gift a day or one gift a week. It really works. My daughter has MS too. We try to only schedule events every other day. Take a day in between to rest or bake cookies. Just the smell makes it feel like Christmas. Reach out to friends and family. They won't mind helping even though you think your just a burden. Cookies freeze really well. The holidays are not about the presents or food despite what everyone seems to think. It's about family and friends. It's about Love. I know there have been times that I've declined parties because I've needed help getting into friends home due to stairs. However friends don't care,they just want to see you and share a drink or a bite to eat. Don't stay home. If your really not up to getting out; then invite family in. You don't have to entertain. Do a pot luck. Just visit. Seeing others really does boost moral.
2016 has been a crazy turmultuous turn of events both in my life and in our country. I know it is hard sometimes, don't feel alone. Learn from the past, take it one day at a time. Everyone's life is like a roller coaster. The downs become ups eventually. Every single person matters. Watch A Wonderful a Life. Happy Holidays to you all. I'm hoping that 2017 is a great year for everyone and that you try day by day to enjoy your ride.
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 10 years ago with RRMS and has a daughter who also has MS.
As Summer came to a close I had all of the regular stress building up in my body, back to school was quickly approaching, the days were getting shorter and back to reality was going to start setting in any second. Luckily I had one last trip up my sleeve, I was headed North, way North to see Nate Denofre and take part in a Courage Inc. outing in Michigan’s scenic upper peninsula. In an earlier post I explained how I came into contact with Nate and set up the trip.
Joining me on this 1,000 plus mile journey would be my adventure brother Josh, he and I have been to many interesting destinations around North America, so it was a no brainer to invite him along to the deep woods when the opportunity presented itself. “So you’ve never met this guy and it’s 10 hours away, I’m in.” That was basically the content of our conversation, Josh would be flying in from Philly to make the trek with me.
The closing few weekends of Summer are usually banana’s but in a good way, trying to cram in one last bbq or trip to the beach before Labor Day is in the rear view mirror. I might have overdone it. My wife planned a trip for us to Toronto to see Dr. Joe Dispenza speak the weekend before I was to pick up Josh from Detroit Metro Airport to head up North. The trip to Toronto was incredible and Dr. Joe got me dialed in, my meditation game was going to be on point! On our trip we saw Lake Ontario and Lake Erie. We arrived home at 10 PM I dropped my wife off and picked up Josh at the airport at 11:30.
The next morning we packed the car for our week in the woods, we didn’t bring much, just a pack big enough to carry clothes and our hammocks, we we’re roughing it. I kissed my family goodbye and headed North. 4 hours later we were in the U.P eating whitefish overlooking Mackinac Island, looking at Lake Huron and Lake Michigan “That wasn’t so bad” I said to Josh, but we still have 4 more hours to go, more like 5 if you include driving down logging trails. We paid the tab and hit US 2-E with Big Bay in our sights.
The drive was distractingly scenic, on my left was big blue Lake Michigan with it’s whitecaps and massive sand beaches on the right was Josh snoring away or pointing out views to distract me! Finally we turned right and Lake Michigan was behind us, now it was forest and more forest, eventually we made it to the other side and we were treated to Lake Superior, the Real Big Lake.
Finally we we’re closing in on Big Bay, time to call Nate and let him know where we were. He told us we had about 30 minutes to go and gave us a short cut...the gps on my car seriously didn’t have anything on the screen other than my car in a sea of green. Satellite radio was fuzzy at this point. Finally we got lost, dead end! Somehow I kept my cool (Thank’s Dr.Joe) and we somehow came out not far from Nate!
At this point I had only spoken with Nate via email and social media so it was nice to finally meet him and then go into the woods for a week with him! He had us follow his “Woods Truck” for a few miles down the same logging trail we were earlier lost on and parked my car and loaded our gear into the truck bed. Josh, Nate and myself all crammed into the cab of a 1990’s something Pathfinder deep in the woods ready for a crazy week in the wilderness. Josh is 6’4”, I’m 6’6” and with his legs on Nate is 6’3” so room was at a premium to say the least.
As Nate began to navigate the forest around the Huron Mountains we bumped along with branches smacking and scraping all over the truck Nate told us that it wasn’t much farther and that it would be worth the trip and also that the brakes were out on the truck. Mind you at this point we have been heading down a hill for about 10 minutes so this was about to get interesting.
3 guy’s get into a truck, the guy with no legs is driving and by the way there are no brakes, headed downhill towards a river, sound’s like a bad joke or an obituary! Several tense moments later we came to a rest at the bottom of the hill and we we’re greeted by the sound of extremely loud rushing water, our campsite was surrounded by multiple waterfalls. It was worth the trip Nate was right. It was as if we had landed in the Mesozoic Era. There were boulders the size of my 1 car garage all throughout the river, all under the canopy of towering red and white pine trees. I wasn’t sure if I would see a giant dinosaur or bigfoot first.
The scene was set we so split up picked out some spots to unfurl our gear and got to it, it was getting dark, under those massive trees it was always twilight I would find out. Once our spots were set we got the fire going and started cooking I was starving. 12 hours after we left Detroit we were all set up and ready to get our courage on!
Finally talking with Nate was great, here was a guy that has had everything stacked against him since day one but has one of the most positive outlooks on life I have ever encountered. He explained to us that he hasn't always had the most rosy outlook, however has come to accept that you aren’t in charge of everything you’re dealt in life, but when given the chance making the positive decision seems to go farther. “Why hate life, if you’re not living what are you doing?”
Over the next few days we fished in the river, climbed on the rocks and Nate swam in the river. I put my foot in and it was instant cramps, the temperature of the water was a scorching 61 degrees...in late August! The Yellow Dog River was ice cold but I will never forget my time watching it’s waters rush past me and over those giant boulders.
While I was in the woods surrounded by natures beauty... and Nate and Josh I realized I hadn’t had any spasms or tremors, even my balance was pretty good, MS hadn’t even crossed my mind. Swinging in a hammock with the roaring waterfalls immersing you with the giant trees swaying against the blue skies was good for my soul. It was a very mindful experience.My brain needed me to take my foot off of the gas for a second and re-calibrate, it felt great.
While sitting around the campfire with Nate and Josh we shared some epic stories from our lives over the past decades usually ending with roaring laughter, I think I broke a rib, seriously, I had to take a minute to gather myself. We bonded and promised to do it bigger and better next time, which we will, no doubt do.
On our trip we covered 1,111 miles in my car (with brakes) all in Michigan. I was able to see all 5 Great Lakes in less than 24 hours, climbed a massive mossy boulder in the middle of a rushing river and lived in a hammock. I made a new friend and cleared my mind, when can we go again?
If you have a chance next Summer, by all means contact Nate and the Courage Inc crew and get some time on the river. “Pick a date and we’ll accommodate”...said Nate, I had to!
Be a warrior today,
This years annual Muckfest Detroit was another banner year for team Healthcare journey.com.We came in 4th place overall with nearly $6,000 raised. Big thanks to our teams top fundraiser again Eric Rayner who was also the number 2 overall event fundraiser.
This year we raised funds by raffling off many local items from haircuts to massages and of course some booze!Thank you to all of our donors.
MuckFest was a very busy time for me as I was on both the Michigan and National Team Captain Boards not to mention trying to bring in donations and get items donated for the raffle. It was interesting to hear all of the behind the scenes work and planning that goes into making such a massive event go off seamlessly, it’s not easy. While working on promoting I got to work with Kristina and Tammy from the Michigan MS Society Chapter, very nice and hard working ladies, hats off to you!
MuckFest is always a time of reflection for me, I think back to the first year I participated and how scared I was. Everything was still an unknown for me, I was fading fast and could barely catch my breath. MuckFest was my first venture out into the MS community, my first chance to see how others were handling their disease. It wasn’t pretty I left that event pretty shaken and extremely certain that things were headed down the tubes quickly. Now four years later things are different, I have an optimistic outlook and I am still improving everyday.
Eventually I will run a MuckFest but at this point I’m still relying on my electronic walking device and can’t afford to short it out...again. The weather was perfect and our team was high energy, we even recruited a few new team members to join us this year. While my team sludged off into the muck I wandered around the grounds and talked with a few people in the same boat as me just hanging around while their teams ran for them. It was great talking to people with a positive outlook that knew they were appreciated and loved.
One of the bonuses of being on the team captain board was that I was interviewed by Fox 2 Detroit to tell a little bit of my story and share my team's success (click on the link below or my picture below to see it!). Now I can check that off the list! It was funny as the woman that interviewed me had to stand on a bucket to make the shot not look ridiculous, she was maybe 5 feet tall and I’m 6’6”.
With another MuckFest in the books I could finally relax...or drive to Toronto and then relax...or drive to Big Bay Michigan and then relax..or head to New York City and relax, Oh well at least I have a lot to write about!!
Be a warrior today,
Over the years I have visited New York City maybe a dozen times, it has always been a special place to me, there’s nothing quite like it. Once I even took my girlfriend there and proposed to her right on the Brooklyn Bridge, lucky for me that worked out and she has since been promoted to wife!
The last time I was in New York was in the Spring of 2010 right before I was diagnosed. It was NYC that helped me see that I might be dealing with something big.
My trip was all fun and games as any trip to the City should be, I wandered late into the night with my friends aimlessly looking for the next chapter in our adventure. We covered many miles all over Manhattan, it was on the second day that my knee started to hyperextend during our excursion to locate a hidden establishment with a top notch Bloody Mary. When my knee started to hyperextend I was obviously worried but it was strange to me that it didn’t hurt? Here I was trucking all over the place and my knee would just bend at a not so good angle but no pain? I trudged on, we took a few more taxis but I was worried. For April it was unseasonably warm, mid 80’s so I was running hot.
Later when we got back to the apartment I took off my shoes to relax and I stumbled a little bit when standing up? Now that I look back on that I should have known something was up. It wasn’t until I woke up the next day that I was really alarmed, I couldn’t wiggle my toes on my left foot! Now I was freaking everyone out, “it’s probably a pinched nerve or something?” I assured. I couldn’t have been farther off, nerve yes but definitely not pinched.
I went to the doctor upon arriving home who sent me to the neurologist, who sent me to the MRI and then diagnosed me with MS two days later. That was a whirlwind, MS? But I was mostly healthy?
Fast forward six years and I was headed back to the big city, this time was more business than Bloody Mary’s but a trip to New York is all good! Since being diagnosed I have ridden a rollercoaster of ups and downs but I am stable now and in a great place mentally. Over the past three years or so I have really taken command of my MS and don’t let it slow me down anymore. Diet has been huge, yoga has been huge and meditation has been incredible. For me keeping a positive attitude has been very important. Before I changed my mindset I was fixed on the negative aspects of the disease potential, things were not looking good.
As I walked and walked I was constantly looking at my fit bit, 1 mile, 2 miles, 5 miles, 10 miles(almost)! There was no way I planned on putting nearly 30 miles on when I was leaving for this trip, but I did it. My daily goal is just under 3 miles, so I met that often by noon. Four years ago there is no way I could have walked ten miles in a day, I would have talked myself out of it, “No way I feel terrible, I’m too tired”, “it’s too hot”,”it’s too far”” every excuse.
As we were ready to board the plane for the ride back to Detroit a woman from our group asked me what I did to my leg, “MS ”I replied, “Oh, I thought it was a prosthetic, you're really lucky to be so mobile with MS!” “No I’m not lucky I have been working very hard to be this mobile”. Thank you New York it was a pleasure, until next time!
Be a warrior today,
(Here is my update to working out with Daryl Kucera, Owner and Founder of Fast Forward LLC, MSforward and Powerforward in Omaha, Nebraska with the testing of “Tele-Fitness”)
Summer of 2016 brought an opportunity to travel with my husband to visit all my family in Oklahoma. Being concerned the heat and traveling by car that long distance had me a little concerned. I was just getting up to speed with my online workout session’s and wasn’t sure how I could keep up my pace while going on such a long trip.
One of the great aspects of working out weekly with everyone in Omaha via teleconference online, was as long as I had wifi access, I was good to go! I improvised with weights using soup cans, and did stepping portion using sofa cushions. I even enlisted my oldest granddaughter’s help in one portion using resistance bands.
I was gone for two weeks, and then had family here for a few weeks immediately following my trip. My energy level, and overall health took a toll after all the fun and exciting memorable times.
Not letting this stand in my way, I have continued working out weekly (only missing 1-2 sessions while running fever) and by adjusting the level of intensity I put myself through. The fabulous part of this exercise concept is built around doing “what you can”, at the “pace you can”. Daryl and staff are always there to give me suggestions on a lighter method if I just can’t go as hard and fast at any given time.
The classes are evolving, with added participants, and new exciting methods of working out together. On the horizon are some interactive sessions with other groups, and new participants joining in.
Tele-Exercise allows anyone to become involved. I feel such a burst of energy after each session. The people are so openly encouraging, and there is never a feeling of being “not good enough” to participate. We laugh, we work hard, and we encourage each other.
There is a sense of “commitment”, knowing they are there waiting for me to log into the session, they are all ready to go…. And I don’t want to miss out! This motivates me to be involved, and allows me to build friendships with other MS’ers from all over the nation. A real sense of community is evolving, as we watch each other tackle the MS Monster each week!
Please share this info with anyone seeking a way to work out from home, no matter where they live. I promise after being involved in even one session, you will feel energy and desire to do more!
Terri was diagnosed with RRMS in 2013
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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.