Introduction

In many cases, living with MS leads family members to be even more appreciative and attentive to each other but families are not always able to maintain a positive adjustment to MS – sometimes the relationship between a person with MS and their family caregiver can deteriorate so that the relationship becomes abusive.

This can happen for any number of reasons including

• The physical or emotional stress
  of the caregiver,
• The difficulty of the person with
  MS to adjust to increasing disability
• Difficulties that the spouse or
  partner caregiver may have in managing both the intimate aspects of their
  relationship and caregiving needs ( which may include bowel and bladder
  management)
• Dealing with cognitive
  dysfunction.- it can be very frustrating to the caregiver when a seemingly
  normal adult doesn’t seem to know what’s going on in their life

Caregiver stress is an internal experience that can result from the physical or emotional burden of caregiving. When a caregiver
responds to that stress and isolation by inflicting harm on the person with MS they care for, it becomes abuse.

Different types of abuse

Abuse can be split into a number
of different types:

• Adult physical abuse – substantial physical injury
  experienced by an adult that result from cruel and inhumane treatment or an
  intentionally harmful act committed by any person.
• Sexual abuse – any form of forced sex or sexual
  degradation. This includes forcing an individual to participate in or observe
  sexual behaviours.
• Emotional abuse – this is the most difficult form
  of abuse to concretely define or detect  but it is generally considered the most
  harmful because of the long-term effects
• Neglect – failure of a
  responsible person to provide a minimal
  level of care includes health, nutrition, shelter, supervision, affection or
  attention.
• Exploitation and theft – misappropriation of money or
  property, theft, and coercion to sign legal documents that benefit the
  offender.

In a study of people with MS at the Mellen MS Center, Dr Jack Conomy and colleagues concluded that “. . . domestic violence among persons with MS appears common [and] . . . no age, race, gender, or socioeconomic group of people with MS is immune from personal violence.”

No one living with MS is immune to the possibility of abuse. There is little doubt that people with MS are victims of neglect or
violence, but the extent is not clearly known. We believe that the pattern of abuse in families with a history of domestic violence (pre-dating the MS diagnosis) will continue and may escalate as the disease worsens. Just as importantly, families with no previous history of domestic violence may find themselves in abusive relationships as a result of the stresses of living with
MS.

When family, friends or health care professionals are concerned about the potential for abuse or neglect in a family living with MS,
the first step is to acknowledge concern. Try empathising with the caregiver by saying something such as “Everyone has a limit as to how much stress and responsibility they can take – how close do you think you are to your limit?”,

Since the laws around reporting neglect and abuse differ between countries, it is important that family members and health care
professionals understand their responsibilities and know the relevant authorities to contact if they have any concerns.

Osteoporosis and low bone density are common in people in the early stages of multiple sclerosis (MS), according to a new study published in the July 12, 2011, print issue of Neurology®, the medical journal of the American Academy of Neurology.

“We’ve known that people who have had MS for a long time are at a greater risk of low bone density and broken bones, but we didn’t know whether this was happening soon after the onset of MS and if it was caused by factors such as their lack of exercise due to lack of mobility, or their medications or reduced vitamin D from lack of sun exposure,” said study author Stine Marit Moen, MD, of Oslo University Hospital Ulleval in Norway.

Low vitamin D levels are associated with an increased risk of MS. Low vitamin D levels can lead to reduced calcium absorption and bone mineralization, or the process the body uses to turn minerals into bone structure.

“Our hypothesis was that if vitamin D exerts a major effect on the risk of MS, then the effects of low vitamin D levels on bone density would be apparent soon after the onset of MS,” Moen said.

The study involved 99 people with an average age of 37 who were recently diagnosed with MS or clinically isolated syndrome, which means they had a first episode of symptoms like those in MS but have not yet been diagnosed with the disease. All had no or minor physical disability from the disease.

The participants had bone density tests an average of 1.6 years after the first time they had any symptoms suggestive of MS. Their tests were compared to bone tests of 159 people of similar age, gender and ethnicity who did not have the disease.

A total of 51 percent of those with MS had either osteoporosis or osteopenia, compared to 37 percent of those who did not have the disease. Osteoporosis is a disease where low bone density causes the bones to become thin and brittle, making them more likely to break. Osteopenia is low bone density that is less severe than osteoporosis but puts a person at risk for osteoporosis.

The results remained the same after researchers adjusted for other factors that can affect bone density, such as smoking, alcohol use and hormone treatment.

“These results suggest that people in the early stages of MS and their doctors need to consider steps to prevent osteoporosis and maintain good bone health,” Moen said. “This could include changing their diet to ensure adequate vitamin D and calcium levels, starting or increasing weight-bearing activities and taking medications.”

The study was supported by the South-Eastern Norway Regional Health Authority, Ulleval University Hospital, Odd Fellow Research Foundation for Multiple Sclerosis, Endowment of K. and K. H. Hemsen and Endowment of Fritz and Ingrid Nelson.

I have the utmost respect for service dogs of all kinds. I know that there are many people with MS that have balance dogs  - dogs that are large enough (for instance, Great Danes) to provide a little stability when a person is getting up from a seated position or needs a little help steadying themselves while walking or standing. There are also many other ways that dogs can help us when we need a little (or more) assistance with daily living. (For more information, read Balance Dogs for Multiple Sclerosis).

In fact, an organization called msbeyondmedswas started by a mother and daughter team who want to “open a dialogue” among people with MS, our docs and those close to us about the benefits of service dogs. They also want to improve access to these dogs by convincing government agencies and insurance companies that service dogs really do improve the quality of life of people with MS. Check out their website for all sorts of service dog info.

However, I believe that even dogs that aren’t trained as service animals are therapeutic and beneficial to people with MS. Recently I decided that our family will be getting a dog. Two dogs, actually. In my younger years, I really enjoyed training dogs for obedience trials and I have been waiting until my twins were old enough to appreciate a family pet (although I have no delusions about them actually taking care of the dogs on a consistent basis) before we even thought about getting a dog.

I have decided that now is the time. The girls are in school, and I would love some company on my long walks, as well as encouragement to get moving on the days that parts of me want to stay put. I also find the training process therapeutic. It takes me out of my head, so to speak, as I focus on doggy motivation and logic. When I commune with dogs, I take a mental break from the tingling feet, the shaking hands, the crushing fatigue and the myriad other MS symptoms that are part of my life.

So, I’ve got my name in for two Basenji puppies that have not yet been conceived. If all goes according as anticipated with the planned breeding, my puppies will come to live with us in early Spring. I have to tell you, I’m beyond excited.

Now, I know there are plenty of you who have dogs that make your days a little better. So, whether you have a service dog or just a four-legged pal, purebreds or mutts, one doggy or a whole pack, let’s hear from you. What kind of dog do you have? How long have you had your dog? I want to know how your dog helps you feel good. Maybe you will help someone make the decision to bring a new member into their family.

Acta Neurol Scand. 2011 Jun;123(6):430-3. doi: 10.1111/j.1600-0404.2010.01426.x. Epub 2010 Sep 16.

 In the management of MS, Natalizumab is the first monoclonal antibody approved to the market. However, there is  no data on the  safety of its use in pregnancy. Until Now.

Researchers in The Netherlands have studied 2 pregnant women with MS who use Natalizumab The first patient used it in the periconceptional period ( done during the period from before conception to early pregnancy) and the second patient used it in both the periconceptional period and throughout pregnancy. The antenatal course of the first patient was complicated by an exacerbation of MS. The second patient did not experience MS relapses during pregnancy, while still using Natalizumab. The newborns did not show any abnormalities postnatal and at 6 weeks’ follow-up.

This is the first detailed report on pregnancy and delivery of two babies after maternal treatment of MS with Natalizumab. Further research is needed to establish the exact effects on pregnancy and intrauterine development as well as the long-term effects.

Prenatal counseling with thorough explanation of the risks and careful decision making is advisable.

None of us would like to think that we would abuse a vulnerable loved one but the fact is, it happens. In this first article about abuse in a caregiving relationship I will outline the types of abuse that can happen to that vulnerable person in your life.

Introduction

In many cases, living with MS leads family members to be even more appreciative

and attentive to each other but families are not always able to maintain a positive adjustment to MS – sometimes the relationship between a person with MS and their family caregiver can deteriorate so that the relationship becomes abusive.

Emotional abuse

This can happen for any number of reasons including

• The physical or emotional stress of the caregiver,
• The difficulty of the person with MS to adjust to increasing disability
• Difficulties that the spouse or partner caregiver may have in managing both the intimate aspects of their relationship and caregiving needs ( which may include bowel and bladder management)
• Dealing with cognitive dysfunction.- it can be very frustrating to the caregiver when a seemingly normal adult doesn’t seem to know what’s going on in their life

Caregiver stress is an internal experience that can result from the physical or emotional burden of caregiving. When a caregiver responds to that stress and isolation by inflicting harm on the person with MS they care for, it becomes abuse.

Different types of abuse

Abuse can be split into a number of different types:

• Adult physical abuse – substantial physical injury experienced by an adult that result from cruel and inhumane treatment or an intentionally harmful act committed by any person.
• Sexual abuse – any form of forced sex or sexual degradation. This includes forcing an individual to participate in or observe sexual behaviours.
• Emotional abuse – this is the most difficult form of abuse to concretely define or detect  but it is generally considered the most harmful because of the long-term effects
• Neglect – failure of a responsible person to provide a minimal level of care includes health, nutrition, shelter, supervision, affection or attention.
• Exploitation and theft – misappropriation of money or property, theft, and coercion to sign legal documents that benefit the offender.

In a study of people with MS at the Mellen MS Center, Dr Jack Conomy and colleagues concluded that “. . . domestic violence among persons with MS appears common [and] . . . no age, race, gender, or socioeconomic group of people with MS is immune from personal violence.”

No one living with MS is immune to the possibility of abuse. There is little doubt that people with MS are victims of neglect or violence, but the extent is not clearly known. We believe that the pattern of abuse in families with a history of domestic violence (pre-dating the MS diagnosis) will continue and may escalate as the disease worsens. Just as importantly, families with no previous history of domestic violence may find themselves in abusive relationships as a result of the stresses of living with MS.

When family, friends or health care professionals are concerned about the potential for abuse or neglect in a family living with MS, the first step is to acknowledge concern. Try empathising with the caregiver by saying something such as “Everyone has a limit as to how much stress and responsibility they can take – how close do you think you are to your limit?”,

Since the laws around reporting neglect and abuse differ between countries, it is important that family members and health care professionals understand their responsibilities and know the relevant authorities to contact if they have any concerns.

June 20, 2010 HAIFA (Press Release)

Multiple sclerosis patients who directly confronted the stress of the Second Lebanon War suffered fewer attacks than those who chose to cope with the situation by focusing on feelings. This has been shown in a new study carried out by researchers of the University of Haifa, the Technion-Israel Institute of Technology and Carmel Medical Center.

The study examined how MS patients living in the north of Israel coped during the Second Lebanon War.

The results of the first stage of the study, which were  published in the scientific journal Multiple Sclerosis, revealed that the ongoing stress of the war increased the number of MS flare-ups in patients who were exposed to rocket fire. The current stage of the study has examined 156 patients who have undergone regular therapy at the Center for Multiple Sclerosis at the Carmel Medical Center and who were living in the attacked north of Israel during the war.

The results have shown that patients who chose to use “direct coping and planning” to counter the stress factor – by preparing the shelter or protected area, stocking up on food and medications, adjusting their medical appointment schedule, and the like – suffered significantly less exacerbation of MS symptoms than patients who chose to cope with the situation on an emotional level, with relaxation techniques, requesting emotional support, or prayer.

“Patients who focused their coping on emotional wellbeing when a more direct approach was necessary, suffered more flare-ups of the disease than patients who identified the challenges that the falling missiles were presenting, and regarded the situation as an opportunity for planning and direct action,”

The study has also found that women with MS tended to turn to emotional support, religion and willfully diverting thoughts more than men. Nevertheless, there was no difference between the numbers of men and women who chose “direct coping and planning”.

“Coping directly is how a person takes real action in order to change an unwanted situation. Multiple sclerosis patients who chose to view the war as a controllable situation that requires action, instead of seeing it as an uncontrollable threat, suffered fewer attacks of the disease,” said Prof. Somer, adding that now it is necessary to investigate whether the acquisition of psychological coping skills can stall the progression of this disease.

I have recently been in touch with someone in Christchurch New Zealand who is going through the stress of the recent earthquake. It is difficult to see an earthquake as controllable but then neither is a war. But we can prepare. Get involved in preparing a disaster supplies kit as many do in California . Backpacks or other small bags are best for your disaster supplies kits so you can take them with you if you evacuate.

Include at least the following items:

After the earthquake – be prepared for aftershocks. They may cause additional damage for hours to months after the main shock.

All of these things help to regard the situation as an opportunity for planning and direct action

One of the first things is that a chronic illness does not conform to most people’s prior experience with illness. MS does not go away. Nothing is the same and you can’t tell how different it is going to be from one day to the next. This unpredictability makes it difficult to make plans and decisions.

MS changes us. It causes us to rethink our plans, goals, dreams and aspirations: some changes may be relatively small but some are very significant, and affect several areas of our life.

Let’s take an apparently simple thing like socialising MS can complicate socialising. The practical difficulties of getting out and about can affect friendships. The different lifestyle led by a person with MS may mean that some friendships are lost or changed, and there may be fewer opportunities to make new friends.

“You feel like being around people but find it hard. I can tolerate a couple of people but if I go into a room of 30 to 40 people I just feel like I need to get out of there and go home.”

We all have a sense of self, of “who we are”. It can refer to how we perceive ourselves, the kind of work we do, the activities we are involved in, the friends we have, and our place in a family that we care about. MS can play with this perception. MS is not going to kill you but it is important to go through the grieving process of dealing with loss of the life you once had. Take control of the uncontrollable. Now this sounds la bit like holding thwe aves back from the shore but there is a lot you can do to live moiré comfortabley with this unpredictable disease. Educate yourself :The more you know the better prepared you are Create your support networks : you don’t have to do it alone Start your treatment early: There is no cure but several medications have been shown to slow the disease progression.

Learn your own cues:

For example does heat make your symptoms worse? Can you concentrate better earlier in the day? Are you sensitive to cold? When is your energy ay it’s best? Does it take you longer to do things than it used to? Share all these facts with those around you as nobody is a mind reader Always have a back-up plan: Every big plan should have a backup. One day you’re raring to go and the next you’re weighed down. Get into the habit of thinking of alternatives just in case fatigue kicks in, symptoms flare up or a relapse happens. Tap that ang3er and frustration: Just reorganizing your kitchen to make it easier for yourself or do something big like advocate for the rights of peoples with disabilities or add a comment to this psot and share with the others who come here, It all makes a difference

Summing Up

After being diagnosed, and as you manage your MS, it may be that your emotions and confidence are all over the place. It is very important to have good support networks to help you adjust, and to help you create new plans, goals and aspiration that are compatible with having MS. The best piece of advice is don’t go it alone. Talking to others is crucial. It is important to have someone with a ready ear and an understanding of what you are going through. Likewise, it is important that people with MS keep communication open between themselves, and others affected by their condition. This includes family, friends, medical professionals and caregivers. Effective solutions often depend upon a united approach to resolving the problem.

A lot of the pain in MS is due to immobility or poor posture, rather than directly related to damage to the nervous system. In particular, using the same posture repeatedly with mobility aids (e.g. a frame or wheelchair) will put stress on your body, which can cause pain. A physiotherapist can provide useful guidance in this area.

Non-medical approaches to pain management include massage, hydrotherapy, acupuncture and reflexology. However, these activities should be discussed with your doctor beforehand.

Then there are::-

• relaxation techniques,
• meditation,
• prayer,
• breathing techniques,
• self hypnosis
• and psychological interventions such as psychotherapy.

The most important thing is to get pain treated. You should discuss where and how much pain you have with your healthcare provider. Your own description of the pain is the most important aspect of pain assessment.

Unfortunately, knowing how something feels does not mean it is easy to describe. Health professionals often talk about pain being ‘acute’ (short-term) or ‘chronic’ (long-term). But describing how it affects you will be an individual thing. When you do describe it, use whatever words seem to best sum up what you experience, however odd they may seem at first. Here are just some of the words people use to describe pain:

• squeezing or crushing

• cold

• hot or burning

• sharp

• dull

• like ants under my skin or ‘creepy crawlies’

• like a build up of pressure

• stabbing

• creeping

• like an electric shock

Being able to explain your pain also helps family, friends and carers understand this ‘invisible symptom.’

So let’s look at some of the types of secondary pain in MS

Musculoskeletal Pain

Description

Stiff joints and muscle contractures, caused by the physical stress of immobility. It can affect the neck, the back or limb joints.

Non medical treatments

Stretching exercises, posture & gait examination, orthotics, exercise

(Especially swimming), position changes, support and cushioning, application of heat and cold.

Usual medications

Ibuprofen, diclofenac  and naproxen.

Nerve Pressure Pain

Description

Pain caused by pressure on the nerves from immobility or poor posture.

This can include sciatic nerve pain from pressure on the back of the leg and ulnar nerve pain from pressure on the elbow.

Usual treatment

Correct seating is important, but elevation of the legs will usually relieve pressure pain.

Back Pain

Description

This can be caused by muscle weakness, abnormal posture, spasticity and spasm. It may also occur as a result of osteoporosis or MS lesions in the spinal cord. If the osteoporosis was steroid induced changing treatment options often eliminates the pain

Usual treatment

Evaluation to pinpoint the source of the pain is essential, as treatments differ widely. It is also important to note that back pain is not always related to MS even though we all think that all of our symptoms must stem from it.

Pain from MS symptoms and treatments

Description

It is worth remembering that certain drug treatments can have painful side effects. Some people taking beta interferon, for example, experience headaches and flu-like symptoms such as aching muscles, particularly in the first few months of taking the drug. Ibuprofen and paracetamol can both help control these side effects.

Some people taking Copaxone (glatiramer acetate) notice an uncomfortable feeling of tightness or pain around the chest.

Some MS symptoms can cause pain as well as the symptom itself, such as pressure sores, urinary retention and infections. A particular example is pain due to Optic Neuritis—an MS symptom that occurs when the optic nerve is stretched or inflamed (with pain occurring behind the eyes which is intensified with eye movement). Painful optic neuritis is probably a unique kind of pain. In addition to pain, optic neuritis can be accompanied by blurred vision, visual acuity loss, impaired colour vision and complete or partial loss of vision. This was one of my first symptoms although I have fortunately never lost total sight. The painful eye movement did however make it almost impossible to reverse the car wherein I had to look over my shoulder. I also did not seek help tp have this treated but Corticosteroids (oral prednisone and intravenous methylprednisolone) can significantly increase the rate of recovery from optic neuritis.

It is also treated with painkillers like ibuprofen, diclofenac or naproxen.

People with MS can also experience pain as a result of treatment

for the condition. Two examples include injection-site reactions and steroid-induced osteoporosis.

Usual treatment

It is very important to discuss each particular problem with your healthcare provider. Fortunately, fixing the initial problem or changing treatment options often eliminates the pain.

For injections site reactions there are a number of things you can do.

If you get lumps post-injection then try a warming (not hot) pad pre-injection to loosen the sub-coetaneous fat. If the lumps persist then gently massage the area but if the lump develops a discharge contact your doctor as it is possible it has become infected.

If you experience itching or stinging then try using an ice pack for a short period of time before and after the injection. If this does not work, discuss it with your doctor as you may need an antihistamine.

For simple redness and inflammation that lasts more than 24hours you could try using a a cream or gel such as Aloe Vera, Witch Hazel or Arnica but do noit try any other opver the counter cream without discussing with your doctor.

Always let the medication warm up to room temperature before injecting and if you’re using an Autoject the setting should be adjusted based on the depth of subcutaneous tissue in the area you plan to use.

Generally these reactions diminish as you become accustomed to injecting and remember to do it at the prescribed interval without missing a dose.