Multiple Sclerosis Holiday Gift Guide – 2013

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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!!

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 Maid, Merry 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 EntertainmentNetFlix, Hulu, Amazon 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 Book, Facing the Cognitive Challenges of Multiple Sclerosis, Minding 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’rs 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!!

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 Bar, toilet grab bars, Sombra 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 seat, foot 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-month, beer-of-the-month, tea-0f-the-month – and my personal favorite:  wine-of-the-month!!

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 Society, the Multiple Sclerosis Foundation, the 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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Flu Shot – Or Not?

 

 

Injections, Injectables, MS, multiple sclerosis drugs, Betaserone,Every year, I hear it from both my neurologist and my primary care doc:  ”You need to get a flu shot.  You need to protect yourself, especially when you have MS.”  But – is that true?  I know a lot of people question the necessity – even the advisability of injecting one more thing into an already ravaged system.

There are those who will tell you that when they’ve gotten the shot in the past, they’ve gotten the flu.  I asked about that and the docs assure me that while that may have happened in the past when live vaccine was part of the shot, it can no longer happen because there is no live vaccine in the current shots.  You may, however, have a temporary increase in your temperature or even feel a bit “flu-like.”  That, however, is not the flu, but rather a reaction by an already over-reactive immune system, registering the presence of yet another foreign solution.

Which reminds me – you might be thinking about getting out of another shot by going for the nasal mist.  DON’T DO IT.  That is LIVE vaccine.  You may well wind up with not only the flu, but a relapse.  Nope – if you’re opting for the flu vaccine and you have multiple sclerosis, it must be in the form of the injection.  And if you’re in the midst of an exacerbation – wait until you’ve stabilized.

It’s safe and it may well protect you not only from the flu itself but from a flare.  So why do some people choose not to get the flu shot?  Needle phobia.  Belief that they could contract the flu from the flu shot.  A need to limit their exposure to even one more medical visit.  Whatever the reason – there are a good deal of folks choosing not to get a flu shot.  How about you?  Will you be getting one?  Why or why not?

Either way – here’s to staying healthy – whatever that means!!

Remember – it helps alleviate the stress, just to say F-U-M-S!!

 

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Carbs and Sugar and Grains, Oh My!

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I’ve watched this conversation develop over the last couple of years.  I’ve wanted it to go away.  I’ve ignored it.  I’ve denied it.  I’ve scowled at it.  I LOVE breads and crackers and candy and cakes and cookies and all of those things that I grew up equating with love.  They taste good.  They make me feel good – well, for a few minutes anyway.

I’ve read the articles and now the studies and I can ignore it no more.  Gluten seems to be an issue for a lot of people.  People who don’t even have Celiac Disease – the hallmark of which is gluten intolerance.  There is gluten sensitivity and gluten allergies.  There’s the general bloating and weight gain that a lot of us have been aware of for a long time, even knowing where to place the blame, but not wanting to give up our yummy carb-laden dishes.  So what if I feel really tired after eating all those carbs?  If I just laid there long enough – eventually that would pass.  Oh, and that’s another thing – the “passing” thing.  Apparently carbs have been making the “passing” a bit more difficult as well.  And if you’re not “passing” correctly – you may be “keeping” stuff that you really should be “passing.”  Everybody with me on the code I’m using for poop??

Now comes the latest book by a doctor that I respect enormously, Dr. David Perlmutter.  My primary care doc saw Dr. Perlmutter speak at a Functional Medicine Symposium years ago and told me at that time that I should see him.  He’s a neurologist who has a fellowship in nutrition and specializes in treating the whole person – learning what’s going on in their lives and finding the thread in the stories that weave together the outcome in their health. For those of you impressed by celebrity, he’s on the Board of Medical Advisors for the Dr. Oz Show and counts Naomi Judd among his patients and biggest supporters.

I went to Naples, Florida and saw Dr. Perlmutter a few years ago.  He was incredibly upbeat and happy.  He had a light that emanated from within.  And – here’s the big thing – he really cared.  He just met me – and he cared about me.  And he cared about my husband – and my kids.  And my life.  My whole life – not just that MS crap I was there to talk to him about.  He cared about what my fatigue meant for my whole family.  Well – I could go on and on, but you get the picture.  He was a bright ray of hope in an otherwise dark moat of despair.  **Wow – this chick is good.  She should be a writer.

So – when I heard he was coming out with another book (may I suggest Power Up Your Brain and The Better Brain Book – both phenomenal), I knew I had to learn more.  And when I learned more, I knew I could no longer ignore the facts.  Dr. Perlmutter took the carbs, gluten, sugar and grain conversation out of the gut and brought it up to the brain.  He illuminates that process by which these toxins are driving our society into Alzheimer’s disease and other cognitive dysfunction.  I don’t know about you, but that has been one of the most frustrating MS symptoms for me – the dreaded COG FOG (said by a deep, booming voice from above with the sound effect of lightening for emphasis).  I watched my mother in the early stages of dementia as well – and it all scared the crap out of me.  I listened to an hour-long webinar by Dr. Perlmutter on his new book Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar–Your Brain’s Silent Killers and I knew I had to act.  This is information that I feel compelled to share with the FUMS community in general – and with my family in particular.  This is really important, cutting-edge information, of which, everyone should be made aware.  It is critical to those of us who are at risk beyond the general public.  I’m providing a link here to the webinar that I found so compelling.  I’m also linking to all of Dr. Perlmutter’s books.  While these are affiliate links and I would receive a small commission for anything that you purchased through these links, this recommendation is not made for monetary gain.  Choose to purchase these books without my link, that’s fine.  What’s important – no, crucial – is that you understand what’s at stake and to what degree you have control over the outcome.  I don’t care how you get it – just get it.  I’m on the waiting list myself.  I’ll be among the first to receive the book when it is released September 17, 2013.  I hope you will be too.

Do you have any experience with carbs, sugar, wheat, gluten or grains that you wouldn’t mind sharing with your FUMS community?  Good or bad – what say you?

 

SPECIAL ANNOUNCEMENT:  Dr. Perlmutter agreed to do a podcast with me several years ago.  I think the time is right for me to call that chip in now.  Stay tuned . . .

 

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Are They SURE You Have MS?

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  I hear it on our Facebook page all the time:  people question MS’ers about their diagnosis.  To some degree, I thought of it as simply ignorant questioning.  Most people know very little about multiple sclerosis until either they or someone they love is diagnosed with it.  Along with navigating the other gifts of MS, […]

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Multiple Sclerosis: A Difficult Diagnosis

Multiple Sclerosis:  A Difficult Diagnosis

  I’ve heard from so many people how difficult it was to get their MS diagnosis.  In fact, it seems to be the rule rather than the exception.  People have told me it took them years to secure a diagnosis.  It amazes me.  I was so incredibly lucky.  I was doing some marketing for a […]

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Helpful Apps for Multiple Sclerosis

Helpful Apps for Multiple Sclerosis

  Apps – or applications – can be fun.  They can be helpful.  They can be downright lifesaving.  I put out the call for the most helpful apps that our readership uses to help in their life with MS.  Here’s the top 5: MS Journal — this app, created for MS patients and caregivers, helps […]

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