MS
 
MS AT A GLANCE:
 
MS autoimmune problem:  The autoimmune attack happens because of a breakdown in the blood brain barrier (BBB), which allows immune cells that have been living harmlessly in your blood to travel into your CNS to attack the myelin and axons, resulting in the symptoms associated with MS.
 
Blood Brain Barrier:  a filtering mechanism of the capillaries that carry blood to the brain and spinal cord tissue, blocking the passage of certain substances.
 
How the autoimmune attack happens:

• MS relapse/attack causes inflammation and damages the BBB.
• This allows movement of immune cells into the CNS.
• Toxic substances are released into the CNS.
• This increases inflammation.
• Myelin in broken down and this affects the nerve cells.
• Astrocytes (nervous system cells) move to where the damage is and this forms scar tissue (MS).

 
Astrocytes:  Nervous system repair.  Upon injury to nerve cells within the central nervous system, astrocytes fill up the space to form a glial scar, repairing the area by transformation into neurons and replacing the CNS cells that cannot regenerate.
 
Results of the autoimmune attack:

• Inflammation can cause swelling.
• This interferes with the conduction of signals.
• Demyelination causes a loss of insulation around the neuron's axons.
• It then slows/interrupts nervous system conduction.
• Axons can be broken which breaks the connection between the nervous system and some body parts.
• MS symptoms shows up.

 
Good News:  The body has a natural capacity to heal some of the damage caused by MS.
 
Partial healing after MS attack:

After every attack the body heals some of the damage.

How? (Naturally or with the help of corticosteroids)

• Inflammation causes edema.
• Fluids accumulate around the damaged myelin.
• Swelling compresses the myelin coated axons and interferes with nerve signal transmission.
• When inflammation and swelling stops, the relapse stops.
• Axons decompress and normal function begins again.
• Damaged Myelin coating has some ability to heal/regenerate (the axon has to be intact).
• Research is being done on how to stimulate the natural healing process (stem cells).
• After nerve fiber has been severed and scar tissue has formed, healing is more difficult.

 
Edema:  is swelling caused by excess fluid.
 
MS Causes:

• Many factors are involved.  Including bacteria (Toxoplasmosis?)
• If a person with MS susceptibility meets a trigger, the immune system overreacts and causes abnormal autoimmune processes.
• Mostly Caucasian women, at younger age develop MS.

 
MS and lifestyle:

• Diet with fish is important.
• Sunlight and Vitamin D is important.
• No smoking.

 
MS 4 disease types:

(1)  RRMS (relapsing-remitting) (85%)    
attacks followed by remissions (complete or partial).                                                                                                                                             
some people do not even notice attacks.
meds work extremely well.

(2)  SPMS (secondary-progressive)        
approx. 50% of RRMS go to SPMS within 10 years.
progression without remission.
in 25 years most RRMS will have SPMS.
but they have fewer/no relapses as time passes.  
                                                                               
(3)  PPMS (primary-progressive) (10%)    
some people have this from the beginning.
no relapses/remissions.
more degeneration from the start.

(4)  PRMS (progressive-relapsing) (5%) 
progressive form of the disease. 

Benign MS:  Very mild, stable MS.  Early diagnosis and treatment extremely important.
 
 
Diagnosis:      Evidence of 2 relapses/MRI/lumbar puncture/blood tests
                        (neurologist will check reflexes as well)
                        Lesion Load:  Baseline diagnosis (first diagnosis), if lesions are less than 10, progression won't be so fast.              

(Complicated issue as individuals differ)
 
Better prognosis:  (Some people that started off worse, ends up doing very well)

• Early diagnosis.
• Fewer relapses in the initial years following the diagnosis.
• Longer intervals between relapses.
• More complete recovery from relapses.
• Relapses that are primarily sensory in nature (for example, numbness, tingling, visual changes). Fewer findings on the neurologic exam after five years.

 
MS symptoms: (every person differs, most symptoms come and go, mild or severe)

No one has ALL the symptoms and most are treatable!

Fatigue                                                Visual problems                Balance Problems                                       Tremors
Bladder/bowel issues                        Sensory changes              Speech and swallowing problems
Mood changes                                    Memory problems
 
Treatment/Dealing:
Disease modifying therapy: (treatment reduces MS activity)          

• reduces frequency, severity of relapses and slows progression.
• reduces the number of brain lesions.
• report side effects if they are intolerable.

Managing relapses:               

• corticosteroids reduce inflammation and brings relapses to an end faster.

Managing symptoms:            

• report symptoms and follow treatment plan, keep body temp steady.

Rehab team:                          

• for example, physical therapists. Go for regular neurologist meetings (write down any questions).
• Keep in touch with the GP and gynecologist etc.

Health:                                   

• nutrition (vitamin D & B12), exercise, preventative healthcare, keep stress down, keeping up your metabolism & emotional support.

Dealing with diagnosis:         

• Any reaction is normal, from anger to depression etc.
• Confront your feelings but realize that your life will not be doom and gloom.
• Plan effectively, set goals, accept unpredictability and talk to people.
• Remember that the meds are very effective.
• Nothing you did caused MS.
• Deal with anxiety/depression (mild anti-depressants can help).
• You are still the same person as before.
• Educate yourself and create a support network.
• Get to know your body, keep a MS diary, keep a list of all the meds you are taking.
• Plan activities for the best part of your day.
• Make your life easier for example: rearrange the kitchen to have more easy access to things.
• Become an MS activist.

 
Medications available: (MANY treatment options are available)
(people can develop antibodies against meds but these can also go away)
 
INJECTIONS:

RRMS/SPMS/PRMS:  Interferon beta Injections (extremely effective)

• targets/reduces inflammation          
• disease modifying
• slows movement of immune cells across the blood brain barrier

 
Avonex (the only once weekly injection)

• small chance of developing antibodies against meds
• reduces frequency of relapses
• reduces new and number of lesions
• slows/delays disease progression    

 
Other:  Extavia, Betaseron, Rebif, Copaxone (only for RRMS) - amino acids
 
Avonex side-effects
Flu-like symptoms such as headache, fatigue, fever, chills, and muscle aches may occur when you first start Avonex. These symptoms usually last about a day after the shot and improve or go away after a few months of continued use of Avonex.
 

• injection site reactions (pain, swelling, or redness),
• dizziness
• stomach pain
• runny or stuffy nose

 
Call your doctor at once if you have a serious side effect such as:

• depressed mood, anxiety, trouble sleeping, restlessness, or thoughts of suicide or hurting yourself;
• easy bruising or bleeding, weakness;
• seizure (convulsions);
• numbness or tingling in your hands or feet;
• pain or burning when you urinate;
• pain, swelling, or skin changes where the injection was given;
• fever, chills, body aches, flu symptoms; or
• nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).

 
Interferons are naturally occurring proteins that are important to the body’s defense against viral infections.
 
ORAL MEDS: (many more available)

Gilenya           
1st oral meds for treatment of MS
may be more effective than Avonex
capsule 1x per day
various side effects including maybe causing heart rate to drop
reduces white cells, that increases risk of infections
may damage the liver
 
Tecfidera        
2 pills per day
very effective
various side effects
 
Realize that every member of the family is affected by the diagnosis.
MS symptoms are unpredictable, be flexible and creative.
Make sure MS does not interfere more than absolutely necessary.
Remember you are you, you are NOT the disease.
Live your life, people with MS swim, ski, play golf, travel, go camping etc.
Maintain relationships, keep going to work, manage life/symptoms creatively.
Plan ahead.
MS does not have the power, YOU do!
 
TAKING CHARGE OF MS:
 
Managing Relapses:
 
What is a relapse?    
appearance of new symptoms or aggravation of old ones.
lasts approx 24 hours (it needs to last at least a day to be a relapse).
if symptoms act up for short periods they are not caused by disease activity (relapse wannabe's).
 
What are relapse wannabe symptoms?  Don’t panic — your MS isn’t progressing.

The symptoms will gradually subside as your body temperature returns to normal.

• They are a response to a temporary increase in your body temperature instead of any underlying disease activity. Even a half-degree elevation in your core body temperature can cause this.
• For example: When you are stressed out or tired, when you’re exercising in a hot environment or you’re running a fever caused by a virus or some kind of infection — most commonly a urinary tract infection (UTI) or when the weather is hot or humid.

 
Knowing when to call the doctor?

If your symptoms suddenly take a turn for the worse, or you experience a symptom that you’ve never had before, take a minute to think about what might be causing it. If you’re overheated, tired, or particularly stressed out, take a little time to chill out. If the situation doesn’t improve by the next day or so, it’s time to check in with your neurologist.
 
Just remember: Virtually nothing that happens in MS is a dire emergency, so don’t feel that you have to rush to the ER or call the doctor at 2 a.m. However, not every symptom that you experience will be related to MS. MS doesn’t protect you from other illnesses. Symptoms such as an abrupt onset of chest pain, shortness of breath, and a severe headache that is followed by weakness or difficulty speaking are examples of symptoms that do need immediate and emergency attention.
 
Treating acute relapses:

• Most relapses resolve on their own (the inflammation dies down).
• Symptoms may stay or go away completely.
• If the symptoms interfere with daily life you may have to take corticosteroids.

 
Corticosteroids: hormones that are produced in the human body by the adrenal glands, and are used for anti-inflammatory actions and can help better functioning and gives an energy boost.  They can't be used on an ongoing basis.  They do have side effects.
 
Managing Symptoms: (if any symptoms are extreme go to the NEUROLOGIST)
(not everyone gets these, and not all symptoms, and not in the same severity)
 
Rule out other causes is important before assuming that MS is the culprit.
 
GENERAL TIPS

• Pay attention to the signals your body sends you. If you start to feel tired, take a breather.
• Don’t over-do it. If you push yourself to the max on a good day, you may hit a wall and end up paying for it over the next week.
• If you do push too hard and suddenly feel your symptoms begin to flare up (feeling tingly or numb or noticing a change in your color vision, for example), don’t panic — the symptoms will subside as you rest and your body cools down.
• Maintain a healthy body weight, eat healthy, drink fluids.
• Adjust your routines. Plan ahead to bundle errands, pace yourself, and conserve your energy. Talk to your employer about reducing your workload, altering your schedule, or working at home some of the time.

 
FATIGUE

• Fatigue is the most common.

• Think creatively about how you'll carry out your daily activities.
• Organize your work place/home/study schedule etc. by making lists and rearranging things to be more accessible.
• Exercise. Regular exercise can improve cardiovascular fitness and muscle strength and reduce fatigue in people with MS.
• Stay cool. MS fatigue can be exacerbated by heat. During warmer months, be sure to exercise in the morning or late evening when it’s coolest. So you don’t overheat, take frequent breaks and consider wearing a cooling vest.

 
SLEEP/DEPRESSION PROBLEMS

• Treat symptoms that interfere with sleep, including spasticity (stiffness or spasms in certain muscles) or urinary problems.
• Talk to your doctor about sleep medications.
• Ask your doctor for meds for depression or sleep issues.

 
VISION PROBLEMS

• For vision problems go to your eye doctor every year, vision problems may present in different ways. 
• Use an eye patch if needed.

 
WALKING PORBLEMS

• Walking problems eventually occur in some MS people due to fatigue, spasticity etc. 
• Stretching exercises helps. 
• Meds can be prescribed.

 
DIZZINESS & VERTIGO

• Dizziness and vertigo can be alleviated by antihistamines or Xanax etc.

 
WEAKNESS

• Weakness can be alleviated by exercise (no couch potato) and strengthening of muscles.

 
SENSORY CHANGES (numbness etc.)

• Sensory changes such as numbness and pins-and-needles are also common. Wait them out.

 
BALANCE PROBLEMS

• Balance problems are usually caused by lesions in the cerebellum. 
• Exercise!

 
TREMORS

• Tremors (doctor checks this when asking you to touch your nose with your finger) can be treated with meds, stabilizing the affected body part until the activity stops, massaging the affected area.

 
BLADDER & BOWL

• Meds & urologist should this be an issue.
• Be on the lookout for urinary tract infections. 
• Visit the GP for antibiotics.

 
How to prevent urinary tract infections: 
      
Empty bladder completely, drink fluids, increase protein, berries and less citrus
 
How to stop constipation:   
  
Drink fluids, take meds, eat fiber
 
PAIN

(a)       Primary pain due to inflammation (neurological):

• For example: burning sensations, band-like sensation around chest or mid-section, stabbing pain, buzzing sensations.
• Meditation, yoga, some meds.

(b)       Secondary pain due to symptoms (skeletal):

• For example: pain in hips due to stiffness.
• Prevention is better than cure, meds, exercise, posture control, yoga.

 
SPEECH

• Very rare.
• Speech quality is affected.
• Speech therapist.

 
SWALLOWING DIFFICULTY (choking a lot)

• Also very rare.
• Change diet to soft foods/liquids.
• Therapist specializing in this.

 
SEXUALITY

• Physical and emotional symptoms can affect this.
• Sexuality begins in your mind (even though it doesn’t usually feel that way), so being sexual when you have MS begins with feeling comfortable with yourself and your body.
• Talk with your doctor.
• Talk with your partner.
• Be creative & read books on the topic, use lubricants etc.

 
EMOTIONAL ISSUES

• Emotional ups and downs are normal.
• Depression happens sometimes.
• Corticosteroids/meds can cause depression.
• Therapy and anti-depressants.

 
CONTROLLING MOODS & IRRITABILITY

• Communicate.
• Identify triggers.
• Exercise.

 
THINKING & MEMORY (differentiate between normal memory issues and MS is NB)

For example:  concentration, memory
Go for cognitive evaluation.
Meds like Avonex also helps with this as it reduces symptoms.
Workarounds such as calendars etc.
 
Tips:

• Develop a personal organizer (paper or electronic) that has all your important information in one place, including appointments, contact information, to-do lists, a tickler system to keep you on track, and anything else you need at your fingertips.
• Create a family calendar to track everyone’s activities, and make each family member responsible for writing down the important stuff. Set up a filing system to organize important papers.
• Deal with the mail on a daily basis to avoid unnecessary accumulation (sort out the junk and put the important stuff in a safe place).
• Create a system to process incoming bills, including a tickler system to ensure that they’re paid on time, or use an online payment system with automatic payment schedules.
• Establish a consistent “home” for glasses, keys, and wallets to avoid endless hunting expeditions.
• Create a computerized master checklist for repetitive tasks such as grocery shopping or packing for a trip.
• Establish a file of driving directions to carry with you in your car.
• Create a distraction-free zone in the house for tasks or conversations requiring concentration. Schedule your day so that the tasks requiring the most cognitive effort can happen when you’re at your best, which is often earlier in the day.
• Make sure that every telephone has a pen and pad of paper near it.
• Create step-by-step project templates to help you stay on track with multistep tasks such as preparing a meal, balancing your checkbook, preparing your income taxes, and planning a vacation.

 
There are many medications/therapies/technological gadgets available to help manage symptoms of MS.
Stay away from herbal meds and multi vitamins unless prescribed by the neurologist.
ELECTRONIC STIMULATION DEVICES MAY HELP!
Bottom line:  stay cool, exercise, yoga, don't over-do it & live healthy.

STAYING HEALTHY AND FEELING WELL
 
The healthier you are overall, the more comfortable you’ll feel and the better able you’ll be to deal with whatever challenges MS brings your way.
 

• Adequate rest.
• Good stress management strategies.
• Spiritual sustenance.
• A healthy diet.
• Exercise program.
• Regular checkups.
• A feeling of balance.
• Include time for work and recreation, togetherness and solitude, and busy times and couch potato times.
• Balance also comes from making sure that MS doesn’t steal the show.
• The goal is for MS to take up no more time, energy, and resources than it actually requires.

 
Healthy Diet: (can help alleviate symptoms as it keeps the body healthy)
 
Contains a balance of grains, fruits, vegetables, lean meats (or meat substitutes), and low-fat dairy products Provides you with only as many calories as you need.
 

• Eat no more calories than you need and exercise.
• Stay away from junk food and desserts as far as possible.
• Eat foods rich in calcium (cheese, yogurt, fish).
• Drink enough fluids, especially water and soup.  Do not drink too much fruit juice.
• Fiber such as whole grain cereal, whole wheat pasta, vegetables, fruit and nuts.
• If symptoms get in the way of nutrition, buy prepacked/premade healthy food.

 
Exercise:  (Benefits)
 

• Reducing your fatigue (difficult to believe but absolutely true).
• Maintaining and increasing your endurance and the flexibility of your joints and muscles. Improving your cardiovascular health.
• Improving bowel and bladder functions.
• Strengthening your bones.
• Improving your mood.
• Helping with weight management.

 
Types of exercise:       water activities, yoga, ems, Pilates, therapeutic horseback riding
 
Tips when exercising:

• Plan ahead.
• Warm up/cool down.
• Don't push it.
• Exercise in cool environment.
• Be safe.
• Set reasonable goals.
• Focus on positive things.

 
Handling Stress: (job-, family-, relationship stress etc.)
 

• Recognize your own signs of stress.
• Identify what causes you stress.
• Decide what is controllable and what isn't.
• Focus on what you CAN do.
• Create a stress management plan.
• Don't give things up that are important to you, manage them better.
• Decide what is the priority at a particular moment.
• Set realistic goals.
• Don't be so hard on yourself.
• Organize.
• Rest if needed.
• Find easier ways of doing things.
• Plan ahead.
• Use technology.
• Keep your sense of humor.
• Use available resources such as parents, friends, therapists etc.
• Go to your MS-free Zone!  Movies/book whatever it may be.
• Exercise.
• Deep breathing.
• Meditation.
• Stay connected to other people.

 
MANAGING LIFESTYLE ISSUES
 
Explaining MS to others: (you don't have to tell anyone about your diagnosis unless you want to)
 
Explain that MS affects different people in different ways, and say that most people don't become disabled.  Dodge nonsense.
 
Dealing with common reactions:
 

• How are you? 

 
For the folks who are just making polite conversation, a simple “fine, thanks” should do the trick.  For the people close to you, who really do want to know how things are going, you have some options: If there’s time, and you’re in the mood, you can fill them in. If you’re busy doing or thinking about other things and don’t want to be distracted by your MS at the moment, you can say something like, “Let’s get a cup of coffee later and I’ll fill you in on all the gritty details.” Or, a simple “Pretty much the same” works, too.
 

• “But you look so good!” comment

 
On the one hand, knowing that others think you look good is nice. On the other hand, this comment is tough to hear when you’re feeling really crummy — exhausted, numb and tingly, or weak as a wet noodle.  Or is the real message a bit of a dig: “You look too good to be sick, so why aren’t you doing all the things I need you to do for me?”
 
Your best strategy for responding to this comment is probably to try and sort out the underlying message before giving a response. If the person is an acquaintance or someone with whom you don’t have a close family or working relationship, you may just want to say “thank you” and move on.
 
If, however, it’s someone close to you, who needs to understand that there’s more to MS than meets the eye, you have a variety of options: “I’m afraid that what you see isn’t always what you get! I wish I felt as good on the inside as I seem to look on the outside. Unfortunately, MS has a lot of symptoms that don’t show.”
 

• Responding to unsolicited advice

 
Most people who give advice are doing so because they care about you. The upside of this is that they’re reaching out to provide help and support. The downside is that some people get really cranky when you don’t do what they suggest. The best strategy with the cranky folks is just to say “thank you” and let them know that you (and your partner) will be thinking carefully about all these decisions with the help of your healthcare team.
 

• Understanding that silence doesn’t always mean someone doesn’t care

 
Sometimes people clam up when faced with an uncomfortable situation. For example, say you tell a good friend or colleague that you’ve been diagnosed with MS and you hear nothing from him or her but silence.  The diagnosis is a shock for them as well and people don't know how to react.
 

• Shift the focus and remember that MS is part of you but not all of you
• Introduce other subjects to let them know that you like to think and talk about other things.
• Ask about them — their life, loves, kids, work, and health — to show how important they are to you.
• Make a date for an outing or activity to let them know that you’re still up for fun and excitement. If they don’t take the hint, tell them that you like to get on with your life and keep your MS on the back burner whenever possible.
• If you get really desperate, tell them that talking about MS all the time is really boring.

 
Dating and MS:
 
You don't have to reveal your MS immediately, but if you want to spend more time with someone and you have a good relationship, start sharing information.  Be prepared for any reaction.
 
Communication with people around you:
 

• Communicate your needs.
• Give clear messages.
• Be independent.

 
Communication with your neurologist:
 

• The point is, your healthcare providers need information that only you can provide. This information includes the following:
• Physical, cognitive, or emotional changes you’ve noticed since your last visit
• Problems, allergic reactions, or side effects that you think may be due to your medications
• New prescriptions, supplements, or over-the-counter meds you are taking
• Difficulties you’re having with everyday activities — at home and work

 
Unfortunately, your time with the doctor or nurse may be limited to 15 or 20 minutes. So, the best strategy for using that time well is to come prepared to talk about any problems you’re having.
 
MS and your family: (tips for both the MS person and their families)
 

• Remember that your family/partner goes through the same 5 stages of grief.
• Recognize one another's methods of coping.
• Communicate.
• Study up on MS.
• Manage energy and time.
• Focus on what's important.
• Plan strategically.
• Share the load.
• Decide on priorities.
• Be creative and flexible in problem solving.

 
MS and a healthy relationship:
 
MS can challenge even the best of partnerships. The challenge is no doubt easier for those of you who already have a history together. You’ve had an opportunity to get to know one another, build a partnership of whatever sort works best for you, and get comfortable with your individual tastes, strengths, and foibles.
 
Tips:

• Make time for one another.
• Talk to one another.
• Date night is important.
• Trust one another.
• Support one another.
• Respect one another.
• Intimacy and sex are important and if issues arise, get help, be creative.
• Contribute as much as possible.
• Take turns taking responsibility.
• Be flexible.
• Realize that certain activities may change and decide on how to handle them.
• Don't blame.
• Compromise.
• Together-time is important.
• Maintain social connections.
• Both partners should contribute to the relationship in order to keep the balance.
• Separate caregiving and couple time.

 
Parents with children with MS:
 
No one ever wants anything bad to happen to their kids. When a child is diagnosed with MS parents tend to feel overwhelmed with a lot of feelings, including anxiety, guilt, and anger.  the same feelings that made you want to care for and protect your kids from harm when they were little are still there even though your kid is now 30, 40, or even 50. The result is that you may tend to fall back on old parenting techniques that don’t apply any more.
 
 
 
Here are some tips on how you can still parent when your child is a full-fledged adult:
 

• Have a heart-to-heart with your adult child, with the goal being to figure out how you’re going to support each other in this situation. Parent-child relationships are a form of care partnership, so you and your child need to figure out what each of you can do to take care of the other. For example, your child needs to recognize that you’re concerned and feel just as protective and parental as you always did. You, in turn, have to recognize that your child is now a grown-up who needs to deal with this life change in his or her own way.
• Negotiate what you can expect from one another. Your adult child may just want emotional support, or he or she may welcome advice, financial assistance, hands-on help, or a hundred other things. So you need to be prepared to talk about what you can and can’t provide. On the other hand, your child may want to sort things out alone for a while. This is a reasonable request, but as concerned parents, you also have every right to request periodic updates.

• Realize your child has a right to independence.
• Don't be overprotective.

 
MS and pregnancy:
 

• People with MS are effective, involved parents of healthy, happy kids.
• MS does not affect fertility.
• Pregnancy hormones reduces disease activity (immune system is repressed during pregnancy).
• As the pregnancy hormones return to normal levels during the three to six months following delivery a woman’s risk of relapse rises significantly before it levels off to her pre-pregnancy rate.
• Pregnancy does not increase long term disability.
• Pregnancy for MS woman is exactly the same as for any other woman.
• Talk to your gyni and anesthesiologist.
• Parents with MS have healthy babies.
• Breastfeeding is okay.
• For safety reasons meds need to be stopped, but it is fine as hormones protect the body!
• Talk to the neurologist when trying to get pregnant.
• Decide how to raise your child when MS symptoms shows up.
• Have a support system and communicate with your partner.

 
MS and parenting:
 
As a parent or prospective parent with multiple sclerosis (MS), you’re probably worried about what effect your illness or disability will have on your children. You may wonder if you’ll be able to give them what they need or whether they will have to take care of you.

So, here are some things we’ve learned from our research and clinical experience and from others who have studied this issue:

• Kids who have a parent with MS generally do well emotionally, socially, and academically.
• Many children develop a strong sense of responsibility and take pride in learning how to do things independently.
• Children learn a lot from watching a parent meet life’s challenges — and it makes them proud. When children grow up with someone who has a disability, they tend to develop a greater sensitivity to the needs of others.
• Sharing challenges can bring family members closer to one another.
• Tell kids about MS and symptoms and listen to their feelings.
• Answer their questions.
• Reassure them that it is not their fault and that you are not going to die.

 
Tips:

• Do power naps.
• Set priorities.
• Ask for help.
• Keep things simple.
• Discipline needs to be clear and consistent, with mutual respect.
• Parental teamwork is important.
• Be flexible.
• Make a creative backup plan.
• Handle issues before they get bigger.
• Allow kids to be kids.
• Establish boundaries.
• Remember other parents' kids/teens are a pain sometimes as well.

 
MS and Jobs:  (MS may from time to time affect your job but that is no reason to quit)
 
Issues with work and MS:

• Symptoms can make work difficult at times.
• Disclosure of the diagnosis may be an issue.

 
Why you should keep working:

• Financial security.
• Health insurance.
• Your job is part of your identity.
• Feeling productive is important.
• Self-sufficiency feels good.
• You can be a role model.

 
Handling job related challenges:

• Good symptom management.
• Choose your line of work to suit your life.
• Make use of your talents.
• Give thought about how your symptoms may impact your productivity.
• Ignore peoples' attitudes and prove them wrong.
• Know your rights.

 
Disclosing MS in the workplace: 

Disabilities Act RSA
http://www.gov.za/sites/www.gov.za/files/39792_gon230.pdf
 
After the information is public, you can’t take it back; you can never be sure that other people will have your best interests at heart, particularly if your interests conflict with theirs; and you want to keep as many options open for yourself as possible.

• Who needs to know?
• Why do they need to know?
• How much do they need to know?
• What’s the best way to provide the information that they need?

 
When you should disclose:

• You have visible symptoms.
• Your productivity is down/missed a lot of work days.
• You choose to.

 
How you should disclose:

• Who is the best person to talk to?
• Choose someone knowledgeable in the disabilities act.
• Only give the minimum amount of info needed.
• Understand the law.

 
Health Insurance:

Different options are available in South Africa.
 
Planning your future:  Develop a contingency plan for those pesky "What ifs"

Careful planning is one of the best gifts that you can give yourself and your family. If you gear up to deal with whatever challenges MS can bring, and then find down the road that your MS has actually remained pretty stable and manageable, you haven’t lost anything except some planning time. But, if you lay down some plans and the disease progresses enough to interfere with your life in a significant way, you’ll already have some safety nets in place to meet the challenges head on.

• Where are you now?
• What might the future bring?
• What can you do now to be ready?

Tips:
 

• Take the time to learn about the ways MS can change over time. For example, even though MS is an unpredictable disease, it’s helpful for your planning purposes to know that the majority of people who are diagnosed with relapsing-remitting MS transition to a more progressive course after about 15 years.
• Thinking ahead about ways that MS may affect your lifestyle can help keep you one step ahead if and when you experience major changes.
• Ask the right questions of the right people. You don’t have to figure everything out alone. Legal, vocational, and financial experts can help you get your thoughts in order. Share your concerns about employment and your financial future — whatever they may be — and let these folks guide you.
• Develop the plan that feels right for you. Even with input from all the experts, you’re the only one who can decide exactly what’s right for you. So, gather all the information you can, and then take whatever steps you need to in order to feel prepared workplace, or training for a different kind of career.
• Take steps now to begin putting the plan into action. At this stage, you bravely forge ahead, bringing your plan to life. Acting on your plan will help you feel stronger and more prepared no matter what MS brings your way.
• Go on with your life. We want smart planning to be part of your life, but we certainly don’t want it to be the most important part. Don’t get so involved in planning for your future that you forget to live your life and enjoy the present.

 
Things to consider:

• Your health
• Finances (income and expenses)
• Insurance
• Employment
• Life changes
• Get help from professionals if needed such as insurance brokers etc.
• Know your rights and the law

 
MS and Travel:
 

• The world is your oyster. People with multiple sclerosis (MS) travel all over the world — on business and on vacation. They sightsee, trek, snorkel, and go white-water rafting, and you can too.
• Take meds with you in cooler bag. (It keeps 18 hours and can be in regular temp for another 5)
• Get the travel letter.
• Do not keep the meds in the luggage compartment but with hand luggage.
• When feeling energetic, do stuff!
• Go in cooler seasons or keep your body temp down with water, hats etc.
• Plan.

MS MYTHS DEBUNKED:
 

• MS is not fatal.
• The majority of MS'ers NEVER needs a wheelchair.
• Treatment breakthroughs are made EVERY day.
• You CAN handle stress and symptoms.
• You CAN have kids.
• Having a relapse does NOT mean your meds aren't working.
• You CAN life a full life with MS.

 
RESEARCH BREAKTHROUGHS:
 

• Vitamin D helps.
• New meds have been developed and are awaiting approval.
• Exercise helps with symptoms and cognition.
• Strategies to repair the central nervous system are in place.
• When damage occurs in one part of the brain, another part of the brain can be trained to take over some of its work. Recent studies using MRI technology have shown that the brain remains able to change and compensate even in people with advanced MS.