Multiple Sclerosis Holiday Gift Guide – 2014

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This annual Multiple Sclerosis Holiday Gift Guide is a hit every year.  I’ve updated it this year with new products that either I’ve come across or have been suggested by others in the FUMS Nation.  I hope you find this helpful – and, if you have other suggestions that I’ve missed, please share them in the comments section below this post so everyone can benefit from your thoughtfulness.

 

I can’t believe it’s that time already – time to make that list and check it twice . . .   To help alleviate some of the guess work – and to help those who are receiving the gifts get what they can really use and enjoy – I asked the FUMS community to send in their best and most useful products that help in everyday living.  As always, they came through with an overwhelming response.  If you are an MS warrior – forward this list onto your friends and family.  Make it easy for them.  Or – print it out and leave it “laying around” – maybe highlight a product or 2!!  People will appreciate the help.

If, instead, you are a gift-giver, start with this:  know thy audience.  Some MS’ers would not look at the “MS specific” gifts as gifts – but rather as reminders of their disease.  Gauge the attitude of the intended recipient and give accordingly.

I’ve tried to provide helpful suggestions and “hot-link” to several products.  Hot-links are those words that appear in blue that you can actually click on and you’ll be brought directly to the page where you can purchase or learn more about that product.  Some of these hot-linked items are affiliate links for me where, if you make a purchase, I will receive a small commission.  There is no additional cost to you and please know – I would never recommend or suggest something that I didn’t believe in or use myself.

1. Cooling Gear – if you’re not aware of it, a great majority of MS patients cannot tolerate the heat – and in fact, find themselves thrown into a flare or a full-blown exacerbation when unable to cool down.  As such, several companies have come up with helpful products designed to lower the temperature for those who need it.  Here are some of the best:  Cooling Vests – for an all-over quick cooling affect, choose one of these cooling vests.  It is almost instantaneous cooling and last for hours.  Read the descriptions carefully:  some can be worn underneath clothing more easily than others.  Neck Wraps –  this is my personal favorite item from this category.  There are several different styles to choose from.  I like those that can be either frozen or heated.  I have spasticity in my upper back and neck so the heat helps me at times.  When it’s 90+ degrees with equal humidity in the hot southern Virginia summers, a cold neck wrap brings my temperature down fast and keeps it down.  It’s imperative for me if I’m going to be able to function in the heat.  The kind that have lavender in them are my favorites.  You get aromatherapy as well!!  BONUS!!  This one was suggested by fellow-FUMS’er Kit Minden: Carex Health Brands Bed Buddy Fresh Aromatherapy Hot/cold Pack.

2. Help Around the House –  there are numerous national home cleaning companies that are happy to work with you on gift certificates or long- or short-term contracts. Molly MaidMerry Maids and Maid Brigade , just to name a few.  Want to keep it local?  Go to Craigslist or just Google “Maid Service” for your local area.   **Don’t forget the low-cost opportunity to provide cleaning services yourself.  Just design a “gift certificate” yourself with however many service dates you’d like to provide.  Don’t forget the outside of the house as well.  It’s often not possible for MS’ers to get out and mow the lawn, rake the leaves or put up holiday decorations.  A friend offering to provide those services would be a wonderful gift (see “gift certificate” template provided previously).  Don’t have the time to do it yourself?  Again, check Craigslist, Google or Angie’s List for local lawn services or handyman services.  What a relief it would be to look out my window and have all of these blasted leaves gone!!

3. Gift Cards – massages (especially reflexology), yoga classes, facials, mani/pedis, iTunes, movie theater, restaurants, and VISA or Mastercard gift cards – so people can choose their own gifts.

4. Home Entertainment – NetFlixHuluAmazon Prime (One Year Membership), warm socks, sweatshirts, blankets, fluffy pillows, audiobooks (see Audible), puzzles, Lumosity, books – anything that you’ve enjoyed or that your intended recipient is interested in.  Here is a link of suggested MS specific books.  Some of my very favorites are:  Yoga and Multiple Sclerosis: A Journey to Health and HealingMultiple Sclerosis For DummiesRecovering from Multiple Sclerosis,The Multiple Sclerosis Diet BookFacing the Cognitive Challenges of Multiple SclerosisMinding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair, and Awkward Bitch:My Life with MS – submitted by fellow FUMSer Karen Rotert who said “this [book] gives people without MS a real look as what we go through and makes MS’ers feel normal with their feelings.”

And don’t forget an e-reader, like a Kindle .  Sometimes those big books can be rather heavy.  If an MS’ers hands are numb, tingling, painful, or just tired, a book can be a difficult thing to hold.  An e-reader may be just the ticket.  Downloads are very easy (if there is wifi available) thus offering the recipient a never-ending opportunity for personalized entertainment.  The gift that keeps on giving!

5. Productivity/Adaptive Technology –  The Hip Shot App from iTunes for the iPhone.  Fellow FUMS’er Jinger Burton HIGHLY recommends this app saying “it is user friendly and helps keep me on track with my injections. The developer is awesome to work with should you ever encounter any problems with the app. Best 99 cents I’ve spent.”  Resounding endorsement!  Thanks, Jinger.  Here are some other apps that  could be very helpful:

  • MS Journal — this app, created for MS patients and caregivers, helps keep track of the day-to-day issues that MS’ers need to keep track of – namely – injections, reactions, medication reminders, a place for comments (think: weird symptoms, sleep issues, how tired you are of having MS, etc.) – all of which can be put into a report form and downloaded for your doctor.  It’s FREE and available for iPhone and iPad.
  • MSAA – Multiple Sclerosis Self-Care Manager – this app, backed by the Multiple Sclerosis Association of America (MSAA) won a lot of points with FUMS readers.  It keeps everything in one place:  medications, side effects, lab results, allergies and other conditions.  It’s FREE and available for the iPhone and iPad.
  • MedImage Cases – this one is pretty cool.  It allows you to look at 26 biweekly MRI case presentations, giving you a front row view of a neurologist’s grand-rounds!  It really helps to make sense of disease progression and therapeutic response.  Even more impressive: this app offers audio commentary from MRI experts.  Really helpful if your MS has jacked up your eyesight!  It’s FREE and available for iPhone and iPad.
  • Living with Multiple Sclerosis - You’ve got questions – they’ve got answers.  Everything from symptoms to approved therapies.  There’s even information on how to get a diagnosis and how to improve your quality of life.  It is FREE and available for the Android.
  • Any calendar app.  I use iCalendar that links my desktop and my iPhone.  I put EVERYTHING on that calendar.  And I use alarms.  When to take my meds, when to call my nurse, when my next appointment is scheduled, when to write my blog posts!!  It keeps me straight on everything.  Cog Fog be damned.  I don’t forget if my alarm is reminding me of everything.  It helps reduce the stress – and that’s good for everything – especially MS.

Additionally, Voice Recognition Software has proven very helpful for a lot of us.  I use “Siri” on my iPhone ALOT!  If an MS’er’s hands are bothering them or they’re unable to lift their arms, voice recognition software can mean the difference between staying productive – or not.  Imagine dictating an email or a presentation or a report and watching it be typed out right in front of your eyes!  And – if there’s a need to work from a recliner, a sofa or a bed  – the Laptop Laidback can be the most practical gift of all.  This baby’s incline can change with the user’s, always keeping the arms at the optimal, ergonomically-correct distance for computer usage.  I LOVE mine not only for being uber-productive but for being uber-lazy!!  I like to set my iPad up on it and watch “Downton Abbey” in bed!!  Again, our friend Kit Minden gave a great suggestion:  A reading/book/document stand that can hold all of those things so you don’t have to!  It’s called the Actto Portable Reading Stand/Book stand Document Holder (180 angle adjustable).  Thanks again, Kit!  Isn’t this community great?

6. Meals – a certificate for a meal once a month for a year – or sign up for a service in which people can rotate and bring in a meal.  I really like Meal Train for this purpose.  It’s clear and everyone can choose dates and times that work for them.  This can be something you do for your friend, a group of neighbors can get together to sponsor and share the cooking, or you could find a caterer in the area to schedule meal deliveries.  If your gift-getter (!) is a pizza-lover, schedule to have pizza delivered once a month with a local pizzeria.

7. Mobility - Wheelchairs and scooters and canes, oh my!!   This probably isn’t something that most people could buy someone as a “gift.”  However, if you’re helping someone in their search for mobility assistive devices, here’s a great place to start: Mobility.   Be sure to check with your healthcare provider for help in navigating insurance requirements, etc., to be sure to get the most bang for your buck!!

8. Jewelry – while this can be a very personal taste-dependent gift, it can also be an opportunity to expand the horizons of someone’s personal tastes!!  Aside from local jewelry stores, don’t forget to check out Etsy.  This is a wonderful site that offers handmade and unique gifts of all kinds – including jewelry.  If it’s MS-inspired jewelry that you’re looking for, here are some suggestions:  MS Jewelry.

9. Warrior Wear –  MS Gets on My Nerves T-Shirt –   Peace Frogs is a full line of clothing, designed to help promote positive and optimistic thinking throughout the world. Their clothing places a premium on comfort, quality, and style, but it also allows you to spread a little bit of a positive feeling every time you wear it. They worked with FUMSnow.com to come up with a GREAT tee shirt that incorporates that FUMS attitude and spreads a little sunshine in the MS world.  It’s comfortable, looks great and promotes MS awareness.  Go ahead – get ‘cha one!  The folks at Race to Erase MS have a whole shop with great products sold specifically to raise money for researching a cure.  You get a great product and contribute to the cure.  Win-win!

10. Miscellaneous Gift Ideas – here are a few more ideas that were submitted by fellow FUMS’ers: Shower Grab Bartoilet grab barsSombra cooling and pain relieving cream, GPS (for those cog fog moments in the car!!), extra large rearview mirror,  aromatherapy, a small refrigerator (to have handy near a recliner), night lights (to make the home a safer place), flameless candles (ambiance without the worry), pill minders, a shower seatfoot bath,body pillow and a charging station.  Want something to remind them of you throughout the year?  How about an “of-the-month club” gift? Flower-of-the-monthbeer-of-the-monthtea-0f-the-month – and my personal favorite:  wine-of-the-month!!  And now – announcing the newest resource to receive a resounding thumbs up from the FUMS testing committee (me):  SQUATTY POTTY!!!  If you’re a fan of the television show “Shark Tank” you’ll recognize this wonderful invention.  It’s a stool that fits around your toilet that will elevate your feet and put you into the “squatting” position that has been found to alleviate a lot of the problems that MS’ers have with bowel and bladder issues.  And it’s fun to say!

Perhaps the best gift you could give someone with MS is something that is one-size-fits-all, comes only in the color orange and is guaranteed to be well-received, and never returned or exchanged:  it’s a donation in their honor.  There are any number of charities that service this community – The National MS Societythe Multiple Sclerosis Foundationthe Multiple Sclerosis Association of America, and my personal choice – the Center Without Walls at the Race to Erase MS.  This really is the gift that keeps on giving – to the one whose name or memory you’ve honored – and to the entire MS community.

**Equally important – some things FUMS community members suggested NOT giving as gifts:

Season tickets to anything – or date specific tickets – this can be a lot of pressure for someone who can’t be sure they’re able to do anything from one minute to the next.  And by the way, pressure and stress are VERY bad for anyone – most especially someone with Multiple Sclerosis.  The physical manifestations of stress are often flares.

Inspirational or religious gifts – what I find inspirational may be very different from what you find inspirational.  And religious gifts – well, unless you’re very well acquainted this can go very wrong very fast!

No surprises and no surprise parties – see the earlier mention about what stress can do to MS’ers.

Finally – I’d like to give you a gift as well – a link to the song “Wash Your Mouth Out With Hope”  written for those of us in the MS community – but could certainly be uplifting for anyone.  Include a copy of the link with your gift and brighten the spirit of those you share it with.

Please add anything else that you think would be a good addition to this list in the comments section of this post.  I hope you find value in this gift guide and it proves to be very helpful to you and yours.  Happy holidays and remember – sometimes it helps the stress, just to say F-U-M-S!!

 

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MS, the Holidays and Depression

Joy to the World – bite me!

 

Depression and the holidays

‘Tis the season – well, almost.  The holidays are right around the corner.  Whether you celebrate Christmas, Hannukah, Kwanzaa or none of the above, the reminders of how happy everyone else seems to be are everywhere.  The ads are all showing happy, smiling people with loads of family and friends surrounding them.  They all seem to be without a care.  No one in those pictures has to worry about money, or doctor bills, or pain, or medications – or depression.  Surely the rest of the entire world is happy and peppy and bursting with love at his wonderful time of the year.  Right?  No – not right.  Don’t buy it.  What your seeing in all those ads is just that – advertising – not reality.  Between the stress of the season and the expectations placed on us all by the marketing machines of the big advertisers, it can be an overwhelming time of year for a lot of people.  Add to that the filter that an MS’er must look through – one that can include an uncertain future, pain, numbness, loss of abilities, loss of independence, loss of employment – and you’ve got one unhappy elf.

 

Managed Expectations

Sometime, part of the problem is a lack of managed expectations.  Whether we expect of ourselves, or someone else expects of us, MS’ers can feel like we’re letting everyone (ourselves included) down because we can’t be relied up to make it to the party or to cook the big meal or to get the gifts bought.  We really need to give ourselves a gift – the gift of forgiveness and understanding.  Let’s agree to forgive ourselves because we can’t do everything we wish we could – or others want us to.  It seems like such a trite saying but it’s so very true –  “it is what it is.”  That little saying has been my mantra now for a couple of years – and it has saved my sanity on more than one occasion.  We can’t change our situation – we have MS and we’re limited on some level or another.  Accept that to do too much is going to have repercussions and don’t get caught up in “shoulding” all over yourself!

 

Stock Answers

Have some stock answers ready when people ask you to do something you know will be too much for you: “I’d love to, and thanks for thinking of me, but my MS is acting up a bit so I’m sorry, but I won’t be able to _________________” (fill in the blank).  Or “I wish I could, but if I do that, I’ll be knocked out for a couple of days.  I have to manage my MS carefully and doing too much can set me back quite a bit.” Or, my favorite:  ” MS is a jealous disease.  If I give too much attention to anything else – like doing too much or getting stressed – it comes at me with a vengeance.”  Sometimes just explaining what the potential impact to your health will be is enough for people: “if I do too much, get too tired or too stressed, my MS can flare and that can potentially mean permanent disability for me.  This stupid disease doesn’t mess around.  I can be fine one minute and literally, the next minute I can be hit with an MS bitch-slap!”  I’ve heard from some of you that your family and friends are so callous as to not care or to call you lazy or a faker.  I’m so sorry that you have such unfeeling people in your life – but maybe they truly don’t understand MS?  Maybe by explaining just a little bit – like that last suggested statement, would be enough to quiet some of those “doubters.”

 

Happiness Project

happiness during the holidaysThe holiday blues can hit anyone – not just MS’ers.  But – we do have an increase from the general population when it comes to depression.  The holidays can definitely increase the likelihood of it really settling in.  Certainly there are biochemical reasons for that – and those can be addressed with pharmaceuticals or other mood-altering “medications.”  But for some of us – it’s just the stress and the loneliness of the season that can make us feel really lost.  For us – happiness can potentially be found in things we do, choices we make and surrounding ourselves with like-minded people.   Even if the world seems to be crumbling around you, if you have someone to commiserate with that really understands what you’re going through, you can find some relief, some friendship, some hope.  First and foremost:  I’m always here.  Email me at Kathy@FUMSnow.com.  I’ll get back to you asap.  I’d like to put together a group of us that will work toward finding some happiness together in this crazy season.  We’ll go through the book “The Happiness Project” together, discuss it throughout this season, lean on each other, share suggestions on how to find happiness and live better despite this silly disease, and just not fall prey to the holiday blues.  If you’re interested, please email me at the email address listed above, and I’ll give you access to the new, private Facebook group I’m starting TODAY.   Sure hope you’ll join the fun!  But even if joining a Facebook group really isn’t your “thing” – I hope you’ll use some of the tips given above and reduce your stress, honor your limitations and actually find some joy in this season.  Merry Everything!

**Click the link to purchase and download the book or order a physical copy of it here:  The Happiness Project: Or, Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle, and Generally Have More Fun.  By the way – did you know -you don’t need a Kindle to read a Kindle book?  Yep – just download the Kindle app on your computer (or smartphone), get registered and download books!!  Same is true for the Nook.  :)

 

 

Special thanks to FreeDigitalPhotos.net for the cool sad and happy Santa pictures!!

 

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Time – Doesn’t Anybody Really Know What Time It Is?

Occasionally I will post a guest blog – either something someone has sent to me – or something I’ve actively sought out.  This guest blog was one that I solicited from a good friend of FUMSnow.com – Ms. Joy S. Johnson.  She’s a writer, an animal enthusiast (especially her dog Duke) and yes, she has MS too.  And – she throws an “F-U-M-S” out there when needed.  I like her a lot – and her writing is impressive.  I thought this particular post would be appropriate this week since we’re just getting used to our new Daylight Savings Time again this year.  So – do you know what time it is?  Do you care?

 

Time and Multiple Sclerosis

Does Anybody Really Know What Time It Is? Does Anybody Really Care? *
*(With thanks to Robert Lamm; CTA/Chicago, 1969)

Answer: Yes. Maybe.

“Time” is something Albert Einstein could explain but that never existed until humankind generated ways to measure it. Prehistoric people knew just that it was light and then dark; seasons morphed from cold to warm; hunters waited patiently in the bushes seeking their prey. “Dinner time” was when the meat got home and (if fire had been discovered) was cooked and ready to eat.

Flash forward a bunch of millennia and Time is of the essence. Time heals all wounds. Only Time will tell.
Time is a very concrete and significant part of modern life but it means different things to different people. Different cultures treat time in unique ways. In Jamaica for instance the concept of “soon” is a far cry from what “soon” means in New York. In Jamaica, it’s really not so soon!

As children we measure time primarily by important events: How long until dinner? How many weeks until a birthday? How many days until Christmas? “I’ve got to go to the dentist tomorrow?” Adults may consider those events as well, but adult “time” is broken into smaller, acute increments which must be recognized and obeyed, or else! Or else what? Or else we’ll miss the school bus, be late for work, arrive embarrassingly early or late to social functions, or miss a favorite TV show! (Not all of us have DVR.)

One truism most can agree with is “Time flies when you’re having fun.” A great weekend? Poof! it’s over. But the same 48 hours at work – or in bed with the flu– are likely the “longest” 48 hours you’ve had in a long time.

So it goes to reason that if “time flies when you’re having fun,” it must stand absolutely still when you are NOT having fun. And it does! Ask anyone suffering from a migraine headache how long a minute is. Ask a woman in the throes of giving birth, or someone with a herniated disk, severe burn or any acute pain. I guarantee that for those poor souls time seems to almost stand still. It’s a horrible sensation. It’s the reason many chronic pain sufferers and critically ill people—smart people in their right mind—think about suicide. Because in a state of suffering time stands still. And if time stands still, it feels your pain will never end. And if your pain is never to end, well, can we blame them for wanting an end to the suffering?

Eckhart Tolle, the elfin-looking spiritual teacher and author of The Power of Now, has written and lectured extensively on “living in the moment.” How wonderful to free ourselves of the baggage of the past, to worry not over an unknowable future, but to simply Be in the present– in the moment that is now. I say it depends on the moment. I say it depends on if that burning smell is coming from the candles on your birthday cake, or from the flesh you just burned taking a cake from the oven! Same “now” perhaps, but guess which scenario stops the clock?

I quit wearing a watch when I found myself disabled and at home most of the time. With few obligations outside the home I don’t much need to know what time it is. I wake with the sun, or the dog, or my bladder. I eat at my leisure, I rest when I’m tired, and when I need to know the time I am surrounded by a myriad of appliances that won’t let me forget even when I want to! Smartphone, PC, TV, oven… THEY all know what time it is! But does anybody really care?

 

Joy S. Johnson

 

Please leave a comment in the comment section below this blog post.  It helps a ton with our Google rankings which means more MS’ers can find us and join the community.  Feel free to leave Joy a message here as well – she’s an avid reader of the FUMSnow.com blog!!

 

 

 Special thanks to www.FreeDigitalPhotos.net for allowing us the use of the cool clock image for this post.  

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Survivor’s Guilt – Seeing “The Other Side” of MS

Multiple Sclerosis and Guilt

  According to Wikipedia, “Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal […]

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Multiple Sclerosis and Sleep – Or Lack Thereof

All of the studies say eight hours is optimal for adults.  A recent study says 7 is plenty.  But all too often, Multiple Sclerosis is the “thief in the night” that steals sleep and leaves us even more tired than the fatigue that we’re often gifted with this disease. I hear it all the time: […]

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Chair of the Club

Wheelchair used for Multiple Sclerosis

I’m so happy to introduce the FUMS audience to Jennifer Digmann via her guest blog today.  She and her husband Dan are both incredible human beings – and both happen to have Multiple Sclerosis.  Jennifer was diagnosed in 1997; Dan was diagnosed in 2000. She has secondary-progressive MS. His is relapsing-remitting. Through their writing, public […]

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