Relationships and MS…

At some point, most of us are confronted with having to tell someone; whether it’s a significant other, potential partner, friend or family, about our struggles with multiple sclerosis.  Choosing to disclose the illness; no matter who is listening, is a very personal decision and once the information is shared, we can’t take it back. Responses can vary as much as the symptoms we experience with this disease; so it’s important to consider the decision carefully.

Coming up with a plan of action ahead of time helps us feel less vulnerable and more in control of the situation.

Understanding why we want this person to know we are sick can help in developing the best approach to disclosure.  Reasons to disclose might include; having support, their understanding of symptoms, giving them the opportunity to know something about us that will likely impact the relationship at times.   Knowing what we want them to understand about our disease is also helpful; perhaps it’s the overall impact the disease has on our lives, or maybe it’s just one significant factor that impacts them directly.  Sometimes we are compelled to take more of a caregiver role such as making sure they understand it’s not contagious or fatal; and sometimes we just need to show them we are still strong despite the illness.

Once we’ve decided the why’s and what’s, it’s time to figure out the how’s.  What is the best approach?  There really is no one, right way to explain to somebody who cares about us that we have a chronic illness.  It’s important to remember that we are dealing them the same blow that we received.  They are going to have feelings; they are going to react.  Some of those reactions may be sudden concern or empathy.  not everyone reacts to news such as this the same way.  Some people will be at a loss for words or want to quickly change the subject; don’t mistake this for not caring.  They may not feel comfortable processing the information at that moment or they may not know how to react.  Some people have a gift for saying all the wrong things; don’t judge them, give them time.  It seems that some people have a knee jerk reaction to help and it goes terribly wrong; again, it doesn’t mean they don’t care, and by allowing ourselves to negatively respond to something said will only undo everything we are trying to accomplish through disclosure.

So how do we present the topic?  It’s often good to have a low-key, face to face conversation.  It should take place at a time and in a place where distractions are at a minimum but it isn’t necessary to make it the sole focus of the visit.  In fact it’s probably better to make it one topic of conversation among other topics so that there is far less pressure on either person before or after the topic is discussed.  It is often nice to have another direction to take the conversation off-topic after all questions are resolved.  Remember; its always better to end a conversation with someone on a positive note.

Being prepared to answer questions is really important.  It really isn’t fair or healthy to tell someone something that will impact both lives and then refuse to talk further about it.  Be prepared to explain what Multiple Sclerosis is, what the long term prognosis could mean, and remember to tell them that there is still a lot of research and testing being done with a lot of advancement and possibilities.

One thing to consider is that we should choose a time to disclose when we are feeling more in control of ourselves.  How we are feeling will come through in our explanation and will affect the person we are talking with.  This is not to say that we always have to be upbeat and happy; that’s not realistic, but rather that we give the person on the other end an opportunity to process all of this without the added burden of having to comfort us at the same time they are first hearing this news.

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Traveling with Multiple Sclerosis

Long lines, delays, mysteriously missing reservations, and lost luggage are just a few of the annoyances that come with traveling.  These annoyances are dreadful for everyone, but if you are a traveler with special needs, they sometimes become serious issues.  Combine that with all of the considerations that must go with planning a trip when you have special needs and a trip seems daunting.  Fortunately; Ingenuity and some careful planning help keep the enjoyment in the trip.

Planning a Trip

First consider how long you plan to be gone, where you plan to go and how you plan to get there. (Note; if this is a vacation, sometimes traveling in the off season is much more enjoyable.  This gives the luxury of less crowds and more available resources as well as cooler temperatures and less heat related fatigue).

  • Travel agents or tour companies are excellent resources for setting up a trip with all of the necessary accommodations.  Remember to give them all of the necessary information such as your mobility requirements and any equipment you may travel with.  I used a tour company when traveling to Italy and the convenience of it all was worth every penny.  They quoted a price; and for that price, they arranged and purchased tickets for: flight there and home, boat, train and bus tickets in various cities, hotel accommodations and local tour guides for each city.  All that was necessary was to show up, purchase meals and attraction tickets and the rest was all taken care of complete with a travel itinerary that said where to be and when.
  • Check on your hotel.  You can research most facilities online; however, don’t be shy about calling and asking for necessary accommodations.  Having a room on the first floor really makes life with a suitcase easier.  Its also important to note stair/ramp access, pool access, restrooms etc.  It also helps to find out if the hotel has shower chairs available or any other special accommodations you may need.

What to Bring

  • The most important item to have when traveling with all the necessary gear and medication is a doctors prescription and note of explanation. (for medications, and cooling vests).
  • Medications should almost always accompany you on board in a small cooler with an icepack(if your medication requires).    This allows you to still have your medications in the event that you and your luggage are separated.  Also; keep in mind you can purchase or obtain free from some drug companies, a needle clipper.  This clipper will cut off and store the needle in a small handheld device as opposed to lugging your sharps container everywhere.  This renders the remainder of the syringe safe to dispose of in the trash.
  • Use a wheeled, carry-on sized suitcase.  As a veteran traveler I highly recommend using a small carry-on suitcase for all of your travel needs if you can get away with it.  You can always find a place to do a load of laundry if you plan to be away for a while but this configuration helps avoid lost luggage, lessens fatigue from carrying your bag everywhere and waiting in baggage claim after your flight.
  • Keep in mind the topography of where you plan to be.  If where your visiting has loads of cobblestone streets, a rolling walker may not be the best aid.  Take what works best for where your going.  A cane may mean moving about slower but it may free up your options for where you go.  If a cane doesn’t work for your condition perhaps forearm crutches are a possibility.  Talking with your doctor may reveal many alternatives you hadn’t considered.  Just remember; a great trip can turn loathesome if your fighting your way around everywhere you go.
  • Remember many facilities offer free wheelchairs to use while you are there.  Places such as airports, museums, and others can turn what would be a fatiguing visit into a more enjoyable vacation.  don’t let pride keep you from having a great trip.

General Advice

  • Take advantage of early boarding for people needing assistance at the airport
  • Try to arrange an isle seat near the front of the plane.  (Anything to lessen walks and waits will help with fatigue, and close proximity to the washroom helps with those sudden need to go moments).
  • Always keep medications in their original labeled containers.
  • Keep hydrated and make sure you rest when you start to feel fatigued.  Nothing can ruin a vacation faster than feeling sub-par while wrestling with long lines and navigating difficult terrain.  Sometimes just taking a 30 minute break at a local cafe can reset you for the rest of the day.
  • Know where the hospitals are in the cities you plan to visit
  • utilize baggage porters or valets when you need to.

Enjoy your trip!

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Gluten Free Diet…And Other MS Cures.

Gluten is a protein found in some grains such as wheat, barley, and rye. There is some controversy pertaining to whether oats should also be added to this group because of possible cross-contamination occurring at some milling facilities. Gluten is also a food additive that is found in many foods; for example, ice cream and ketchup.

Why would we want to eliminate Gluten from our diets?  Answers vary.  There is thought to be a connection between food sensitivities (not necessarily allergy); more specifically, the way our bodies react to this type of sensitivity, and MS symptoms.

When we have an adverse reaction to a food; it is often the protein in that food that is the culprit (gluten for instance).  Our immune system responds to this as if it is a harmful invader.  The immune system then triggers a reaction.  Reactions can vary from person to person.

While I am skeptical at best of any type of diet “curing” MS, (at present; an incurable disease), I do believe that better nutrition can afford those of us suffering with MS a better quality of life through moderate control of some of our symptoms.

There are some issues with a gluten free diet.  It is possible to become deficient in other nutrients (fiber, thiamine, riboflavin, niacin, folate, iron, or calcium for example).  It is important to look at the big picture when exploring radical changes in our diet.  Balance is extremely important for the human body.

One thing I always try to stress is to remember we are not trying to cure our disease.  We are looking for ways to make our quality of life better.  Leave the cures to the medical professionals.  If a change in our diet improves our symptoms, we’ve found supporting therapy.  We should always remember to discuss these with our doctor because some diet changes or herbal therapies can directly interact or interfere with certain medications.

I suggest; if planning to try a diet or herbal remedy, to always log findings in a notebook.  This log should contain every detail:

  • What changes were made (diet, introduction of an herbal remedy)
  • Amount of change or what the change was (diet changes noted/dosage of herbal remedy)
  • note the date and the time of day
  • effects of change

Keeping track of our efforts will help us find what works best for us and what doesn’t.  It will also help track down any causes, if we have adverse reactions.

Posted in alternative therapy, chronic disease, Diet, Disease, Health, ms, multiple sclerosis, RRMS, Therapy | Tagged , , , , , | 7 Comments

Peer Support for MS Sufferers.

Connecting with another person who knows first hand what we are going through is essential when confronted with a life changing diagnosis such as MS.  Peer support groups or peer telephone support are great ways to meet new people that share similar experiences.

Peer support offers us a way to learn more about the disease, share experiences or personal feelings on the issues faced, talk through problems or choices, and discuss what works and what doesn’t.  Topics can very from the disease itself to coping mechanisms for dealing with common day to day issues.

There are several avenues we can use to find those connections.  In the United States and Canada; the National MS Society has; MSFriends for peer telephone support.  Click on the links to find their web pages.  They also have a Peer Support and Mentor Program.  The Multiple Sclerosis foundation offers an interactive map on their website to find local (across the US) support groups.  For readers not located in the US; I am working to put together a page that will offer a listing of contact information for support groups world wide.  I will send out a notice when it is available; please make sure you are subscribed to receive updates.  You can also find me on twitter: (kitsune1971) for updates.  If you know of any resources that you would like to add, please contact me with the information:

No one needs to suffer alone in silence. 

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, psychological health, RRMS | Tagged , , , , , , , | Leave a comment

Receiving a Diagnosis of Multiple Sclerosis

The initial diagnosis of Multiple Sclerosis (also known as MS) is scary.  We feel a wide range of emotions of everything from shock to relief.  Typically by the time diagnosis is reached, we’ve been through a battery of tests and already suspected the possibility but somehow having the official word still comes as a bit of a shock.

Denial, sadness, anger, fear, confusion, avoidance, sleeplessness, crying and withdraw can all be normal reactions.  Relief is also a common reaction after wondering for so long what could be wrong and finally having those answers.

After the initial shock wears off, acceptance is our goal.  Multiple Sclerosis is a progressive disease that does not yet have a cure.  Acceptance is the key to being able to get on with life.  Acceptance has different meaning to different people; however, the goal here is to accept that our life is going to change.  We may not be able to do all of the things we used to do and we may sometimes need help.  If we fight this; it will be very difficult, if not impossible to find happiness because we will be forever fighting ourselves.

Once we’ve accepted we have MS; then it’s time to take back some control.  This disease robs us of who we once were.  There are many ways we lose control with this disease; but it doesn’t have to stay that way.  There are ways to regain some of that control.  Aside from various medications that help to alleviate symptoms; there are also other ways to be in control.  Taking control of our healthcare is a wonderful feeling of empowerment.  Knowing our disease.  Learning everything we can about it.  Keeping our own health file (see:  Learning ways to manage our symptoms.  Talking with our doctors and creating our own health care team that will work with us.  A bit of planning or modification goes a long way to helping us accomplish some of the things we used to do; and those accomplishments become a lot sweeter than they were before.

A very important part of coping with Multiple Sclerosis is talking with others who are experiencing the same things we are.  Thanks to modern technology there are message boards available if we wish to test the waters without jumping in.  Once we feel comfortable talking about our diagnosis, we can consider joining a support group.  It is a great way to get out and be around people who understand what we are going through.

When the time comes that our body changes, our abilities change; remember we need to look at ourselves for who we are; and not hide from our reflection.  See the beauty within and within all accomplishments.  Be assertive, no one should make you feel inferior.  Speak up if someone says something frustrating.  We are still the same people we always were; possibly even stronger.

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, psychological health, RRMS | Tagged , , , , , , | 6 Comments

MS flare? When to call the doctor…

For many people suffering with MS, knowing when to call the doctor is a difficult decision.  Questions abound as to the significance of symptoms and what exactly is an exacerbation compared to the new “normal” for the patient.

An exacerbation (also called; a flare, attack or relapse), is a sudden worsening of a symptom or symptoms after a period of stability.  Also included are new symptoms that suddenly appear or a symptom that grows worse lasting at least 24 hours.  Remember; not all symptoms are always related to Multiple Sclerosis.  Sometimes there is another underlying condition that is responsible.

Calling the doctor is always a good idea if you are unsure or uncomfortable about any aspects of what you are feeling.  During this visit; it is a good time to review with the doctor what you can expect from the disease and from your treatment.  This will help you to establish a baseline for your normal and what is considered an exacerbation.

During your visit with the doctor its important to ask questions and be an active part of your healthcare.  Listen to what the doctor tells you and make notations of important points you want to remember.  Make sure you communicate with your doctor if you do not think you can follow through with any of the recommended treatments.

Posted in chronic disease, Disease, Health, ms, multiple sclerosis, Pain, physical pain, RRMS | Tagged , , , , , , , | 1 Comment

The MS Hug

“MS Hug” is a term used to define a symptom that is generally experienced as a tightening, in spasm, or burning sensation that affects the region of the body anywhere from under the arms to the waist.

Discomfort associated with the MS hug vary from person to person.  It is possible to have a localized bout or to feel it around the entire torso;  and to experience this symptom in waves that last from minutes to hours or longer periods of time.  The pain is described by suffers as being; crushing, dull, sharp, burning, or constricting.  The constriction can sometimes cause a perceived difficulty in drawing deep breaths which can lead to a panic attack.

MS hug is reported to be non-life threatening; though, it is important to bring these symptoms to the attention of your doctor as these are also possible symptoms of sometimes life threatening conditions unrelated to MS.  Your neurologist may run tests; such as an MRI, to see if you are experiencing an exacerbation of MS.  Tests; to rule out other conditions, such as; heart problems, gastrointestinal issues, lung problems, or chest infections may also be performed.

Treatments for MS hug sometimes include one of the following; anticonvulsant medication, antidepressants (this modifies how the central nervous system reacts to pain), and over-the-counter acetaminophen.  Some patients also find comfort using warmth; such as a hot water bottle.  The most important and effective thing you can do is to remain calm; stress will almost certainly aggravate it.  Self calming techniques such as listening to calming music, visualization and meditation can provide some comfort.  To further provide comfort; wear loose fitting clothing, apply pressure to the affected area, increase your fluid intake, try deep breathing exercises, and apply massage.  Analgesic creams sometimes bring relief to some patients.

Posted in alternative therapy, chronic disease, chronic pain, Disease, Health, ms, MS and Working, multiple sclerosis, Pain, physical pain, RRMS, Therapy | Tagged , , , | 7 Comments

The Psychological Side of MS

Awareness of psychological and emotional issues is important for patients suffering with Multiple Sclerosis.  Sometimes the issues are directly related to the disease (an actual symptom) and other times they are secondary to the diagnosis, medication, or the symptoms experienced (a reaction or result of the experience).  Crying, uncontrollable laughter, euphoria, anxiety, irritability, social isolation, depression, and sexual difficulties, are not uncommon complaints for MS sufferers.  This is a side of Multiple Sclerosis most patients prefer not to talk about; though many worry about it regularly.

Recognizing the difference between feeling normal sadness, nervousness or anxiety can be a challenge.  The indicators that signal its time to talk with a health care professional are; changes in appetite, changes in sleep patterns, depressed mood, or suicidal thoughts.

Medications (anti-anxiety or anti-depressants)  and counseling (talk therapy) are effective treatment options for improving the quality of life for people affected by psychological or emotional difficulties associated with MS.  Self care is another viable option.  Self care includes things like spending time with family or friends, exercising or diet improvements; actions that helps to elevate your mood and alleviate negative feelings.  It is important to remember though; that suicidal thoughts need immediate attention by a qualified health care provider.

Finding a local support group may help.  Speaking with others who share the same struggles helps to minimize feelings of isolation or fear.  It is also a great way to learn of new or existing treatments and to make some great new friends who understand better than anybody what you are going through.

You are not alone in this; reach out.

Posted in alternative therapy, chronic disease, chronic pain, Disease, Health, ms, MS and Working, multiple sclerosis, Negativity, psychological health, RRMS, Therapy | Tagged , , , , , , , | 11 Comments

Novartis Confirms Patient Died After Starting Gilenya – Businessweek

Novartis Confirms Patient Died After Starting Gilenya – Businessweek.

My greatest sympathies go out to the family of the individual who lost their life.  It is still unknown what the exact cause of death was.  When something tragic happens we need to find something important to learn from it so that the loss gives birth to renewed purpose.

We’ve learned to trust our health care providers and the drug companies; but sometimes even when we do our homework; and make informed choices, things go wrong.

There are risks associated with every therapy.  A patients underlying conditions may play a part in these risks.  How do we make informed decisions about our healthcare?

Speaking with your doctor and getting his or her opinion is; of course, the first and primary source of information you will receive.  Your doctor knows your health history and makes an informed decision based on this information.  Many people stop here.

Part of taking control of your health care is knowing what treatment options are available to you (see the page titled “medications and treatments” for some of the well known).  When a diagnosis is presented for a disease such as Multiple Sclerosis where treatment will be on-going and expensive, it is advisable for patients to do their homework.

Once you’ve received your doctors opinion, visit the websites of the drug companies.  Find out what side effects are possible with the drugs, find out what long term use can do, find out what financial assistance the company offers in continuing treatment if you should stop working.  Find out what training is available if the medication is an injection.  Find out if the drug will disrupt your daily routine.  These are all important considerations when choosing your therapy.  Your doctor may know what medication would work best for your health but may not realize your working and raising 3 kids; some of those therapies cause flu like symptoms, can you afford to be down?

Should you find a therapy that would suit your lifestyle better and would be comparable to the drug recommended by your doctor; talk to your doctor.  Most doctors are willing to consider other alternatives based on reasonable considerations.

Some health care plans will not cover certain therapies so it is important to speak to your insurance representative as well as the doctor.  Keep in mind, your doctors recommendation weighs heavily here to so talk to your doctor first.  There are appeals boards  with insurance companies if they deny your request.  If all else fails, you can contact the drug company and explain your situation.  They often have programs in place to help the uninsured or underinsured.

Fight for your health.  Be your own advocate.  Pay attention, do your research, create your own health file.  Work with your doctor to create a plan that works best for you.

Posted in alternative therapy, chronic disease, chronic pain, Disease, Health, multiple sclerosis, Planning, RRMS, Therapy | Tagged , , , , , , , | 1 Comment

As the years progress; setting goals…

Tomorrow; 12/13/11, I turn 40. Five years ago; prior to my diagnosis of MS, I made lofty plans for this milestone.  I intended to do something exciting, exhilarating, dangerous,  and fun.  One thought was sky diving.  I thought I would mark the day with a death defying act of acknowledgement.  I researched all of the local schools.  I wanted to prove to myself and the rest of the world that growing old didn’t start at 40 and as far as I was concerned, wouldn’t until I hit the grand respectable age of at least 85.  Then and only then would I consider slowing down.  Fate had other plans for me.  No; as birthdays go, this event will pass fairly quietly.  I will pour myself a glass of wine, settle in by a nice warm fire, and update my list of short and long term goals; a simple method for keeping my dreams on track.

Planning is the foundation of success.  Goal setting helps achieve the things you want to accomplish; you are, in affect, signing a contract with yourself to get something done by a certain amount of time.

  • Short term goals are something you wish to achieve in the next couple of months.  These can also be measured out as individual steps towards achieving a long term goal. (I; in fact, use my short term goals to establish a well defined plan of action)  When setting short term goals, keep the objective and the time frame realistic.  I keep my short term goals very specific.
  • Long term goals are objectives you wish to complete in year sequences.  For instance you may plan to take a trip somewhere in the next 1-3 years.  That is your long term goal.  Your short term goal for this might be to save a minimum of $100.00 a month towards that long range goal.  I keep my long term goals more general.

My personal plan for approaching this list?  Each year I sit down on my birthday and I pull out my list.  I mark all of my achievements and reflect on the memories of them.  I then begin my new list.  Some things are carried over to the new list, some things are discarded, and some new items are added.  I also have a second section on my list; I outline personal qualities or traits that are important to me to keep or work on.  This reminds me of the person I strive to be on a daily basis; because, I keep a copy of my goals/qualities as the first page in my daily planner that I see every day first thing in the morning.

To begin a list you need to ask yourself some questions.  What is important to me?  What do I need?  What do I want?  Narrow this list down to your top 5 most achievable goals.  This is important because you need to be able to actually see results for this to be a meaningful exercise.  Next determine the time frame it will take to accomplish these things.  Then break your list out to into action steps; things you will need to do in order to accomplish this goal.  Apply time frames to each of these steps and place them on your planner calendar.  Place this list somewhere you will see it every single day.  When your list is constantly reminding you of what is important to you, you are more likely to work towards achieving your goals.  Keep it a living document.  If you set your birthday as the day you will modify the list and mark achievements it becomes more meaningful.

Here’s to the last 40 years; and here’s to the next 40, may they be even better yet.

Posted in chronic disease, Disease, Goal setting, Health, multiple sclerosis, Planning, RRMS, Uncategorized | Tagged , , , , | 11 Comments