Welcome to issue no. 8 of The MS Experience,
our Life in Spite of MS Newsletter. As always, we are pleased to be able to bring you special tips, recipes, and more that will help you in your everyday life.
Each issue will also be archived on the website if you'd like to read it again. Plus you are also welcome to share these archived issues with your friends if you think would benefit from them.
We're are glad to be able to bring this issue to you. Last month we brought you the mini version of the newsletter. This month we're getting back into the full swing of things.
For those of you who received last months newsletter, the home search is ongoing. We switched to a local company and are taking our time looking for something that fits our needs better.
There are so many homes out there that are just not a good fit for Cir's needs. If you've bought a home after being diagnosed with MS, then you know what I mean.
We will continue this months newsletter with the focus on accessibility. We'll share a few of the problems we are running into. Many can be fixed quite easily, some, there's just no way of getting around them without major renovations.
So this month we will give a few more tips on making your home more accessible and for planning your dream accessible home. I think planning is the one of the most fun areas to doing just about anything.
As always, you are welcome to share this newsletter with your friends and family. And if someone shared this newsletter with you, be sure to subscribe now so you won't miss out on a single upcoming issue.
So, grab a cup of your favorite beverage, (hot cocoa or herbal tea, maybe?) Go ahead, we'll wait. Have a seat, get comfortable, relax, and enjoy!
Recipes of the Month
Last month we told you we had finally got the hang of making ice cream in our Vitamix! We're still at it. Our little granddaughter loves it - Who wouldn't love ice cream for breakfast? (Wink, wink - don't tell her dad.)
We made banana, peach, blueberry ice cream this time, yum! It was delicious, as usual. Again, no preservatives or high fructose corn syrup. Just frozen fruit, sugar, vanilla, and milk.
I know the weather's changing, but we're going to stretch out the cold treats as long as we can stand it. We'll be having soup and sandwiches soon enough.
So now for the recipe. My idea of the ideal recipe is one that takes 30 minutes or less to make and requires 5 or less ingredients. Plus it tastes delicious and my family thinks I took 2 hours to make it, and they want to treat me to a...., well you get the idea.
Well, a chill is definitely in the air, so our recipes this month are quick and easy crockpot or slowcooker soups. I love soup and usually put together a soup using leftover ingredients I have on hand.
Every once in awhile, I'll find a recipe that looks good and try it or use it as a jumping off point. I'll give you a few tips on how I might adjust the recipe for our taste.
Our Favorite Lentil Soup
(First stove top cooking method, then directions for crock pot.
1 16oz bag of lentils
1 vidalia or sweet onion chopped
1 15oz can of no or low sodium diced tomatoes
2 or 3 large cloves of garlic, minced
1 large sweet pepper, chopped
1 T onion powder
1 T garlic powder
1 T basil
2 - 3 T brown sugar
4 T chili powder (or to taste)
1 tsp cumin
Pour lentils into a colander. Pick through and remove any stones or other foreign material. Rinse and drain.
Pour lentils into a large stock pot. Cover with water and turn on medium high heat.
Bring to a boil, then turn down to medium low. Cover with lid and cook for about 45 minutes or until lentils are soft.
While lentils are cooking, pour enough olive oil to cover bottom of skillet.
Cook onions, peppers, and garlic in olive oil till tender.
When lentils are done, add tomatoes, veggies, seasonings, and sugar to stock pot.
Simmer about 15 more minutes. Serve over rice or pasta.
: To cook in crockpot or slow cooker, pour prepared lentils into crock. Layer all other ingredients accept chili powder into crock. Cook for 4 hours on high or 8 hours on low. Add tomatoes and chili powder to taste about 30 minutes before the end of cooking time.
And here's another quick soup recipe for you.
Can Can Slow Cooker Vegetable Soup
* 1 lb beef stew meat
* 1 (15 ounce) can whole kernel corn, undrained
* 1 (15 ounce) can green beans, drained
* 1 (15 ounce) can carrots, undrained
* 1 (15 ounce) can sliced potatoes, undrained
* 1 (28 ounce) can crushed tomatoes
* 1 ounce onion soup mix
* salt and pepper
Set slow cooker on low setting.
Add all ingredients and stir together.
Cover and cook on low at least 6 hours.
Adjust seasoning, add water if necessary.
Quote of the Month
"What's love got to do with it...." A lot, I think. Love is one of the most important things (or maybe the most) about life. When you have love in your life, even things like disability, can be tolerable.
To me, beauty and love go hand in hand. I feel love more intensely when there is beauty around me. This months quote and picture were meant for each other.
Here's the quote. Enjoy it!
"Love is the ability and willingness to allow those that you care for to be what they choose for themselves without any insistence that they satisfy you.".
~ Wayne Dyer ~
Photo courtesy of Pizzodisezo
Tips of the Month
The ideal thing if you have multiple sclerosis is to be able to plan and build your own house that will meet your specific needs. If you are in that position, that's great. You can think through all of the needs you have now and anticipate the needs you may have in the future.
If you are like most people with MS, you didn't anticipate that you would have a condition that could possibly lead to disability. Or one that has already placed limitations on you as far as mobility, cognitive, and other things MSers deal with.
Whether you are adapting your existing home, looking to move into, or purchase a new home that can be built to your needs, here are a few things to consider:
Space to Move Around
If you are already using a wheelchair, this may be one of the first hurdles you have run into if you live in an older home. Most older homes were not built with accessibility in mind. There were no building codes back then that specified how wide to make a doorway for a wheelchair. And if you have stairs, that's another thing you will need to work out.
The cost of adding ramps and widening doorways is something you may need to consider if you have to modify your home, move or build another home. If you can build your ideal dream accessible home, that's one thing. But if not, you will need to look around and evaluate the space you live in now.
Decide which spaces and living areas in your home you need access to. The entry ways of course. The kitchen, bathroom, and bedroom are other areas. If you do your own laundry, an accessible laundry room or area would be good. Your living room or dining room needs to be wide enough to allow you to maneuver whatever type of mobility aide you use.
Think about the turning radius of your wheelchair or scooter. Cir's electric wheelchair; a Jazzy, takes up much less space than the three-wheeled scooter he used to use. (He now just uses it outside).
So, when you are making accommodations for your home, be sure to include lots of space to move around comfortably. Even though our apartment is accessible, it can still be a bit of challenge for Cir to move around in without having to back up several times just to turn around.
If given the choice again, we probably wouldn't choose this particular apartment to live in, especially knowing what we do now.
Doorways and Grab Bars
Doorways need to be wide enough to accommodate your wheelchair comfortably. Cir's electrical wheelchair is a little over 33" wide. The doors in our apartment give him just enough room to make it through with a couple inches to spare.
According to the ADA (American's with Disabilities Act) building code requirements, outside doors need to be 36" wide and inside doors need to be at least 32" wide. We have sliding doors (or pocket doors) to both our bathroom and bedroom. This type of door eliminates the space a hinge door takes up, so the doors are wider.
The standard grab bars were already installed in the bathroom around the toilet and in the roll in shower. We added a few more bars in the bathroom as well as in the bedroom.
These help Cir to get in and out of the shower and bed more easily. They're also helpful when he just needs a little extra support. The landlord was more than willing to do this for him.
Ramps and Thresholds
If your home doesn't have a ramp and you find yourself in need of one, there are ways of getting one. If you live in an apartment, your landlord is required by law to make your apartment accessible. They should be able to provide reasonable accommodations.
We were able to get a ramp installed in our last apartment because of this ADA law. The place we live in now was already accessible. Cir is able to roll right in to the apartment from outside. The threshold into the apartment is smooth and doesn't pose a problem for his wheelchairs or rollator.
When you purchase a home, look for a ranch-style that has a minimum of stairs. These are easier to add ramps to and everything is usually all on one floor, including bedrooms, bathrooms, and laundry rooms.
If the only home you are able to find has more than one floor, make sure that there is a first floor bedroom and bath. Preferably this will be the master bedroom and bathroom, which is usually larger. If this isn't possible, maybe one of the first floor rooms (a living room or dining room) can be converted to a bedroom by closing it off and adding a closet and bathroom if there is no first floor bathroom.
Comfort and Safety
All in all, your home needs to be comfortable and safe. If you can accomplish these two things, that's half the battle. Comfort can mean anything from temperature and humidity, to the above mentioned points of space to move around in.
If you live in a warm climate, and even during the summer in cooler areas, central air is a definite plus. As an MSer, it can sometimes be hard for your body to regulate temperature like it should. You need to be able to control the temperature so that you are comfortable.
In the cooler months, the same is true with the heat. Cir can sometimes feel hot when we are cool or vice versa. We usual bundle up or pull off layers, in an effort to keep him comfortable.
Safety can be as simple as keeping a clear pathway so that you don't trip over things. You will need the cooperation of everyone in the household for this. And it can and should be done. It's easier for others to keep things picked up and clean than for you to have to heal a bone and do therapy afterward.
Other safety issues that you need to be concerned with are emergencies. This is especially true if you have cognitive, mobility, or vision problems. The ideal situation is to prevent anything from happening in the first place, but sometimes things do happen.
You need access to a phone at all times. You need to to be able to easily open doors and windows if necessary. You need to be able to get hold of use your mobility aides when you are in an emergency situation.
If you have questions about what should be done, you can call your local police or fire department for help. They can conduct a safety inspection of your home and give you advice on exit routes and other procedures you can follow.
At the very least, they will know if they get a call from your address, that someone with a disability or limited mobility lives there.
There are so many more areas that can be addressed in this section on accessibility and your home, that we don't have room to include them all here. We had better save them until the next issue. Hope these tips give you a few things to think about.
Book of the Month
This months book is one I haven't read yet, but it is one that has such a unique perspective on multiple sclerosis, I thought I'd recommend it. Hope you'll check it out and let me know what you think.
by Kym Orsetti Furney, is a book by a doctor who was diagnosed with MS. Here is the editorial review by the publisher.
Kym Orsetti Furney was a 34-year-old physician, specializing in Internal Medicine, busy with her exciting job and enjoying life with her husband and young daughter in 2000, when she suddenly began to experience dizziness repeatedly, which rapidly led to a diagnosis of Multiple Sclerosis.
Her world was rocked for a time, but Furney has recovered from the shock and--empowered by information, acceptance and support--continues working as a doctor, teaching, and taking care of her family, despite the challenges of MS. For all people dealing with a personal or family diagnosis, she offers help, hope, and insights by explaining all the medical perspectives, but also reflecting on her own personal experiences after diagnosis.
Never forgetting the fear and hopelessness she felt at the time she learned of her own MS, she discusses the many challenges, from depression and overcoming fear of injection medications, to how and when to tell others about having MS and understanding the impact MS may have on one's career. Readers will find a strong connection with this talented physician and the thoughts and emotions that she has had facing MS.
Furney's well-researched and compassionate writing will not only empower people newly diagnosed with MS, but will give family members insight into the physical and emotional challenges for their loved one, challenges that she or he may not immediately be able to voice. This work also offers invaluable insights for healthcare professionals, psychologists, psychiatrists, physical and occupational therapists.
This is one book I will definitely read. As I mentioned earlier, it brings a very unique perspective to the table. Hope you think so, and enjoy it as well.
Cartoon of the Month
We're still working on this months cartoon. We'll have it ready shortly. You'll be able to find it in the archives. We didn't want to hold up the newsletter another day while we get it ready.
So, check here in the following week for the September Cartoon of the Month.
Hope you enjoyed this months newsletter, and if someone shared The MS Experience with you, be sure to sign up here for your own subscription.
Until next month, be safe as always.