Loneliness & MS

The arrival of the holiday season can often bring feelings of isolation and loneliness. However, isolation and loneliness can also accompany a diagnosis of MS any time of year.

The funny thing about loneliness is how very little it has to do with actually being alone. Loneliness describes an emotional response to one's circumstances. It is a state of feeling disconnected.

Adding to this is the varied nature of MS. Each person experiences it differently, which makes it difficult for one to completely understand another’s experiences. I think one of the core causes of loneliness is feeling different from everyone else.

I work from home so I am alone a lot. I often enjoy my alone time – I read what I want to read, listen to what I want to listen to, and watch what I want to watch. But I also get lonely. Especially when my MS gets in the way of a normal day or when I am reminded of my “otherness.” My disability separates me from the group. I have to work, if not harder at least differently, to get through the day. My thoughts drift to my disease and disability throughout the day. This reinforces my feelings of “otherness” and thus loneliness.

While it’s helpful to recognize these feelings for what they are, I don’t think it’s helpful to dwell on them. Unfortunately, you have to be proactive and seek out a community whether it is in person or online to lessen your sense of otherness. Finding a community of individuals with shared interests and experiences has been helpful to me.

HELP Wanted?

I had to ask a stranger for help the other day. Not to just open or hold a door for me but to readjust me. A bit more intimate. It was 12:45 pm. I was in our building’s courtyard. My foot had slipped off the footplate of my wheelchair. I had tried swinging it up myself to no avail. I knew it was 12:45 because I looked at the time to see how long it would be until Adam would be home (at least 4 ½ hours). I knew I couldn’t wait. My leg had already started to ache. I made up my mind. Rachel, you need to ask someone for help. I knew I needed someone who was strong enough to lift my leg and preferably spoke English. Finally, an acquaintance walked out with his dog. I asked him to put my foot back. He looked, lifted, no big deal. I thanked him profusely. Done.

It was harder on me than it should have been. It took strength to admit I needed help. I have to accept I can’t do everything on my own anymore. Asking for help does not admit  weakness. With multiple sclerosis, constant adjustments need to be made, the most difficult of which aren't always changes in physical routines, but revisions in attitude. When you have MS there are times when you need to put your health and comfort above your pride.

Living Without a Cure

You often hear about cancer survivors; those who have beat cancer. But there is no beating a chronic illness. We live with multiple sclerosis; it does not go away and it can’t be cured. As Congressman Morris Udall said about Parkinson's disease, "I won't die from it, but I will die with it."

How do we live knowing there isn’t a cure? We live day by day. MS requires maintenance. We have to be regimented to make sure we get adequate rest, avoid triggers, take medications on time, and do what we can to avoid exacerbations. It is also important for us to just feel “normal” and go out and stay up late, even if we may pay for it later.

Knowing there isn’t cure doesn’t mean we live without hope. We do, however, have to combine a hopeful outlook with a realistic outlook.

So-called fixes are everywhere. If you do this and stop doing that, follow this, buy this book, etc. you’ll reverse MS. These ‘cures’ are often condescending and essentially blame us for making ourselves sick. Do not fall for false hope.

I think I’m a pretty smart person. I understand my circumstance is out of my control. No amount of kale can make me well again. And because there is no known cure, the best I can do is work with my healthcare team to manage disease activity, ease exacerbations and perhaps slow progression.

The progress, severity and specific symptoms of MS in any one person can’t be predicted, but advances in research and new treatments are perhaps moving us closer to a world without MS. We hope to prevail in the end. So be encouraged, despite the hard challenges that lie ahead.

Chronic Illness Is My Other Job

Between the physical and emotional symptoms, constant doctor appointments and numerous tests and procedures (not to mention keeping track of it all), being chronically ill can become a job in itself. We may find ourselves needing to cut back on hours or stop working altogether due to the demands of our conditions.

As if having a chronic illness wasn’t enough, the burden we face in managing the health care system itself is massive. We navigate through a maze of doctors, administrators, insurers, and pharmacies. We act as go-betweens because none of these people want to talk to each other either.

Many hours not spent at actual medical appointments or testing are usually devoted to requesting and tracking down information, referrals, prescription refills, test results and what they mean, and soliciting follow-up medical advice from providers. I am often expected to be the conduit between my providers and my insurance company, instead of them communicating directly to each other. Thankfully, my husband takes on most of these calls. He is better at maintaining his composure at the frustration than I am.

The health care system uses up a precious resource: our time; the time it takes to check the status of the prescription, to wait for a doctor, to take time away from work, to sit on hold and hope that this one can finally answer your question. We do have lives outside our doctors’ offices.

The system is inefficient and that leads to a lot of wasted time. Establishing a more efficient system that fosters open communication and transparency in the network involved in patient care will create a more positive outcome for everyone involved and a better outlook for patients, who can instead focus on their healing and health.

We fight daily to be able to understand our bodies and to do things others take for granted. Why do we have to fight 'the system' too?

"You look tired.” Or Fatigue Part 2

Fatigue is such a misunderstood symptom of that that I thought it deserved a second write-up. (See the first one here.) Unfortunately, it is understandably difficult for others to comprehend how fatigue affects you daily as a person with MS.

Fatigue is a common symptom in chronic illness and in many cases it is severe and often debilitating. It can be triggered by daily activities or by events that are more elaborate. Those of us with chronic illness will often have to “pay a price” for engaging in an activity and then require a period of recovery. Once fatigue kicks in, there is no other option than to rest. The body “hits a wall” and cannot go further, no matter what.

Exhaustion. It can overpower you even as you wake up in the morning. The thing is that after a while we begin to hide this exhaustion. We learn to smile through the pain, but faking it does not make it. This feeling haunts you. A lot of us pour an incredible amount of energy into living each day.

Fatigue management involves pacing yourself and using what energy you have for the most important things. It may involve asking others to help or just accepting that not everything will be done. 

It is not our fault that we have to leave the party early to make sure we don’t fall asleep at work (if we can still work!) the next day. It is not our fault that we are tired beyond imagination because in life there are some things we just cannot control. Sometimes MS just controls us.

Living With Fatigue –A publication by the MS Trust

Ableism

Nearly 1 in 5 people in the United States has a disability, yet many forms of discrimination against the disability community persist because they are not yet widely recognized.

Ableism refers to "discrimination in favor of able-bodied people" according to the Oxford English Dictionary. Inherent in ableism is the belief that people with disabilities cannot function as full members of society and that having a disability is a defect rather than a difference.

Examples of ableism are readily available in the built environment, where concerns about accessibility are often not foremost in the design process. Instead of fully accessible and welcoming spaces, accommodations are tacked on haphazardly, leading to hard-to-navigate spaces. With the passage of ADA, progress has been made but inclusive design is still the exception, not the norm.

Disability segregation—limiting the movement of disabled persons in public spaces—is commonplace and accepted. Many times, we have to use sketchy side or back entrances, dark and cluttered hallways, or poorly functioning and inaccessible elevators to enter and move about establishments. There’s often no signage so we have to announce our disability and needs. Disability comes with its own unique challenges and trials, but the inability to move freely through our communities, easily get to work, visit friends’ and relatives’ homes — and the social isolation that follows — is a violation of our rights and a detriment to our health.

Able-bodied individuals fail to recognize the privilege of having ready access to any space. Plenty of people may not directly discriminate against people with disabilities but if you use handicapped parking spaces or bathroom stalls you are effectively doing so by taking options away from people who lack alternatives.

Inclusion is the answer. It means that spaces, opportunities, and things are accessible, functional, and welcoming for the able-bodied as well as those with disabilities. An inclusive society removes the barriers and isolation that people with disabilities face every day.

9 Things That Might Not Seem Ableist But Actually Are

Interacting with People with Disabilities

It's no secret a lot of people in the world aren't comfortable around people with disabilities. It can take time getting comfortable with the idea of being disabled, and it can take even longer for people to get comfortable around us. Some people look at us with curiosity, pushing it as far as pointing fingers. Some offer to pray for us (why?) or avoid us, because who knows, maybe it’s contagious? Not many able-bodied people seem to treat their peers with disabilities as, well – “normal people.” Maybe it’s because they don’t know just how similar we actually are? 

Recently, I was on the BART (a Bay Area Rapid Transit train) and a woman said to me, “What happened to you? The wheelchair…” Seriously, lady?!? I’ve got a minute; why don’t you tell me your life story? I told her it was none of her business but thanked her for her concern. Earlier that day, I entered a shop but couldn’t fit through an aisle. The clerk told me to be careful. I turned to leave instead. You just lost a customer. She said she’d be happy to get anything I wanted to see. She should have led with that. I told her I was leaving. My husband told me that she looked panicked when I came in. Another time, a few years ago, I was in a bar and was still using my forearm crutches when a girl came up to me and told me she just knew I was going to be alright. Um, thanks?

People with disabilities as a whole don't like being referred to as "inspirational," especially when they do a basic task like go and buy some coffee. And this happens all the time. While some people get inspired by us simply living our lives and can't help it, please try to refrain from sharing your thoughts with us. We are just trying to live our lives like everyone else. Your comment will have the negative effect, reminding us how different people still think we are.

On the other hand, it is extremely common for people to talk to the person I am with rather than talking to me. “Hello… I’m down here!” Some may argue that this is due to people not knowing how to respond to someone in a wheelchair, or being worried they would say the wrong thing and offend me. I am completely capable of talking and communicating with you — just talk to me like you would talk to any other person.

Oh, and always ask before giving assistance. Just because a person has a disability, they don't necessarily need or want your assistance. Never help someone without first asking them. Also, avoid showing pity or being patronizing. People with disabilities aren't victims. 

When in doubt, always refer to the Golden Rule - treat others as you'd like to be treated. Mutual respect. At the end of the day, this is the only tip you need. Interacting with people with disabilities is only as hard as you make it.

Disability Etiquette from The United Spinal Association

At Home with MS

MS often brings the prospect of major lifestyle changes. It’s important to ensure that the home environment for those of us with disabilities provides the support we need to lead safe and happy lives. Typically, doing so involves making some type of home modification. When modifying your home, the goal is to achieve independence and safety.

When we bought our condo, the first thing we did was have grab bars installed in our bathrooms. We also bought a riser recliner to help me get up out of the chair. As I mentioned in my last post, we’ve made even more changes as my disability progresses. Making changes to your home is part of the game of adapting. Improving access and making modifications not only conserves energy and helps fight fatigue, it provides you with more independence.

Lighting is an important safety consideration. Hallways and stairwells often lack any windows allowing for natural light, so take special care to light them properly. 

The bathroom can be a dangerous place for anyone. Grab bars should be placed throughout the bathroom to provide you extra support. Getting up from the toilet and maintaining your balance in the tub or shower is easier when grab bars are present. This is smart even if your MS isn't severe because balance problems and weakness can unexpectedly occur. The toilet is another area that will require a personal assessment to determine your personal needs. If it’s too low for you to easily transfer to and from, an elevated seat is an easy fix. Some come with arms or guard rails for additional support. Your bathing area is especially important to get right since water will add extra risk. Shower stalls with curtains, roll-in accessibility, and a seat are the safest options even if you don’t use a wheelchair. Eliminating the need to step over a ledge or tub wall also greatly reduces your risk of falling. A roll-in shower is optimal but a shower bench is also a big help.

Many of these home adjustments can be done yourself, but always be sure to consult a professional when it comes to mounting grab bars and other furniture to the wall. Have a two-way dialogue when determining what modifications to make and exactly how they’re made; never get talked into anything you’re not comfortable with. When in doubt, get a second opinion and consult an occupational therapist on your best options. Professionals can be your guide to safety, but it’s important for you to have input on what will make your living arrangements comfortable and accessible.

The ability to live our lives safely, especially in our homes, is very important. Accommodations serve the invaluable purpose of ensuring the human dignity of people with disabilities.

If you rent, you should know your rights.

NMSS Brochure: At Home with MS

Life With Multiple Sclerosis Feels Like 'It's Always Something'

Life with MS feels like 'it's always something.' And for me it is. My MS butts in to my everyday life. While my disease is not life-threatening, it is life-encompassing.

When I got out of the hospital, we made quite a few changes. We had an overhead lift system installed for transfers with a sling because I could no longer bear weight on my legs. Now, when I want to get into bed, I have to have a sling positioned under me and get hooked up to the overhead lift. It swings me into bed which is, granted, a lot easier on me and my husband but is a constant reminder of my progression. We also had a roll in shower installed in our master bath. This is also easier than the old way of pivot transfers to a bath bench. But, as a 39-year-old woman, it still feels like a giant arrow pointing at me saying ‘I am disabled.’

Oddly, I never seem to be disabled in my dreams. But then I wake up and remember. The moment before I open my eyes, I find myself assessing how I feel, wondering what my body has in store for me today.

Being comfortable at all can sometimes be difficult. I am often in some degree of pain and have spasms and other symptoms. The thing with pain is that it varies so much from day to day. ‘Pain’ can really include a number of things - the MS hug (a tight, constricting pain in stomach and/or chest area), Lhermitte's sign (an electric shock type sensation up your spine when you tilt your head down), spasticity, paresthesia (numbness and tingling), and dysesthesia (burning, stabbing, or tearing pain).

On the other side, during my very best days I can do more than many other people suffering from chronic conditions, which I am very thankful for. I work full time and therefore feel productive which is very important to me.

MS does have a big impact on my life. I often see phrases like "You are not your illness." True, but staying myself and not getting wrapped up in it is the battle.

MS and Other Health Risks

You’d think having MS was enough. Unfortunately, multiple sclerosis brings with it a unique set of challenges, including a higher risk of certain other health issues.

MS is thought to be an autoimmune disease and progressive neurodegenerative condition. It affects the nervous system, which gradually impacts the whole body. When someone has MS, their body’s immune system slowly attacks its own myelin sheath, which is composed of the cells that surround and protect the nervous system including the spinal cord and brain. When these cells are damaged, the nerves are exposed, and the brain has difficulty sending signals to the rest of the body.

The disconnection between the brain and the organs, muscles, tissues, and cells served by the damaged nerves causes many of the classic MS symptoms, such as dizziness, vertigo, confusion, cognitive issues, trouble with coordination, and mobility issues.

MS can affect your vision.

·         Vision problems are often the first sign that something is wrong for many people with MS. Double vision, blurriness, pain, and problems seeing contrast can begin suddenly and affect one or both eyes. In many cases, vision problems are temporary or self-limiting, and likely result from nerve inflammation or fatigue of the eye muscles.

MS can affect your limbs.

·         Many people with MS experience a wide variety of symptoms that affect their limbs. Damage to the myelin sheath often results in pain, tingling, and numbness of the arms and legs. Problems with hand-eye coordination, muscle weakness, balance, and gait may occur when the brain has trouble sending signals to the nerves and muscles. These problems may start slowly and worsen as nerve damage progresses. Many people with MS first feel “pins and needles” and have difficulty with coordination or fine motor skills. As the condition worsens, limb control and ease of walking may become disrupted. In these cases, canes, wheelchairs, and other assistive technologies can aid in muscle control and strength.

MS can affect heart health.

·         People with MS appear to be at increased risk of heart disease, congestive heart failure, stroke, and peripheral vascular disease. To lower your risk, it's vital that you stay active and exercise, even if you're in a wheelchair, to keep your heart and blood pumping throughout your body.

MS increases the risk for blood clots.

·         Deep vein thrombosis (DVT) is the formation of a blood clot in one of the deep veins of your body, typically a leg. It’s particularly dangerous if the clot breaks loose and travels to a lung. Immobility, spasticity, and use of steroids are associated with a higher risk of DVT.

·         To prevent blood clots in your legs, avoid sitting or lying in one position for prolonged periods, and take short walks a few times a day. If you cannot walk, consider doing leg-strengthening exercises, modified as needed, to keep the blood flowing in your legs.

It’s hard enough having MS but it’s even harder to cope with MS when you have additional chronic health conditions or “comorbidities” - the simultaneous presence of two chronic diseases or conditions in a patient.

While you may rely on your neurologist for MS treatment, it’s essential that you assemble an entire health care team to manage your MS and comorbidities. It takes teamwork to keep you out of the hospital.

Accessible? (PART 2)

See part 1 here.

I found myself in the ER again last week. Due to a problem discovered in a routine clinic visit, I needed to be admitted to the hospital for a procedure the next morning. Unfortunately, I had to go through the ER process to wait for a bed in the hospital.

As one hour turned to two, I found I needed to use the restroom, desperately. But they didn’t have the ability to transfer me. The Hoyer lift they had wouldn’t fit in the restroom. (A Hoyer Lift allows a person to be lifted and transferred with a sling for those whose mobility is limited.) Then a doctor suggested I get into bed and use a bedpan. Not ideal, but a solution nonetheless. When they found a bed for me, a RN looked at me like, “OK, get into bed.” I told him I needed a lift to transfer me from my wheelchair to the bed. He asked, “Can’t you just stand and pivot…?” I heard “Can’t you just…?” quite a few times that day. Umm, no dude, I can’t. He sighed and said he’d have to find the lift. Once they found the lift, no one really knew how to use it. My husband had to show them what to do.

My ER visit was unacceptable. I was made to feel less than because of my disability. The Americans with Disabilities Act (ADA) guarantees full and equal access to health care services and facilities. This includes the requirement that employees are trained on proper patient handling techniques, operation of accessibility equipment, and how to assist with transfers and positioning of individuals with disabilities. The requirement is to provide equal medical services to a patient with a disability. Purchasing accessible medical equipment will not provide equal access if no one knows how to operate it. Staff must also know which examination and procedure rooms are accessible and where portable accessible medical equipment is stored. New staff should receive training as soon as they come on the job and all staff should undergo periodic refresher training during each year

People with disabilities had to create a civil rights movement in order to achieve visibility and legal standing. But the reality is that the ADA is an imperfect tool. The good news is that the ADA brought change and opened the door to creating new public attitudes. The not-so-good news is that we still have a long way to go.

So...I was in the hospital

Patients with multiple sclerosis often experience hospitalization over the course of their lives. Last month, I was hospitalized for a second time. I went to the ER with shortness of breath. I went through a myriad of tests in the ER until I had a CT scan of my chest. After my CT, I was immediately whisked off to the ICU. It turned out that I had bilateral pulmonary embolism (PE). A PE is a blockage of an artery in the lungs by a blood clot that has traveled from elsewhere in the body through the bloodstream. In my case the blockage were blood clots that came from my legs. In the ICU, I was given IV drugs to work on dissolving the clots in my lungs. I also had an IVC filter placed to prevent any further blood clots from traveling from my legs to my lungs. Once I was stable, I was transferred to the regular hospital. There I continued to improve. Unfortunately, this incident set off a flare of my MS. I had lost strength in my arms and hands. I knew I couldn’t go home in this condition. I needed rehab.

Once my insurance approved rehab, I was transferred to acute inpatient rehab. There I would work at three hours of therapy (PT and OT) a day. While the therapy was extremely helpful and I grew stronger every day, the experience with some of the rehab staff was surely lacking. The ICU and hospital nursing staff were impressive. Unfortunately, I can’t say the same about the rehab nursing staff. The rehab staff did not seem to be trained to treat patients with chronic illnesses. I cannot walk or move my legs so I needed help in nearly all aspects of my care. I often felt like a burden when I needed help getting dressed or transferring to my wheelchair, commode, or bed. At times, I felt that I didn’t receive the attention, understanding, or empathy I deserved.

I learned a few lessons in my experience. First, you need a good advocate. I learned that I needed to be my own advocate and had to direct details of my own care much of the time. Fortunately, while my husband and I are able to advocate effectively, I can imagine others in that situation that would not be able to. Having a family member or close friend that can be there regularly and help communicate with your care team is necessary. Second, don’t assume that nursing staff know what they are doing all of the time. It’s fine to ask questions or probe staff to get a better understanding of what actions they are taking and why. If the person resists your questions or doesn’t know why, this is a red flag, and should be raised with your doctor. 

Often, recovery is in your own hands.

MS and Grief vs. Depression

Grief over any kind of loss is a normal and healthy process. People with MS grieve over changes caused by the disease. The grieving process is the first step to learning how to adapt to those changes in one’s life and move forward. Given the many symptoms and changes that MS can cause, a person with MS can expect the normal grieving process to ebb and flow over time. People should not suppress their grief.

Grief can sometimes be difficult to distinguish from depression. However, they differ in several ways:

·      Grief over a recent change or loss is generally time-limited and resolves on its own. Clinical depression is more persistent and unremitting; with symptoms lasting at least two weeks and sometimes up to several months.

·     A person experiencing grief may at times be able to focus on life’s activities and gain enjoyment from them, while a person who is depressed may not.

·     Although grief generally resolves on its own without treatment, counseling, self-help groups, as well an understanding and supportive environment can help. Depression requires treatment by a mental health professional.

I cry (and sometimes sob) because MS is hard. I often take an internal look, though, to make sure I’m not depressed. While I’m not happy with my diagnosis, there are times I can step away from my MS and enjoy a conversation with friends, a good meal, a movie, or a good laugh. Grief is natural. It's part of being human. But take stock; don’t be ashamed to seek help when you’re overwhelmed. This shit is hard.

MS and Anxiety

No one experiences MS the same way. But I bet most people with MS experience anxiety, at least on occasion.

Anxiety is the stream of thoughts that can’t stop, even if you tell yourself to calm down. Anxiety is being nervous for something and you have no idea why. Or you know why and it’s out of your control. Symptoms of anxiety include:

·         Frequent worry and fear the worst will happen

·         Restless energy or feeling keyed-up, on edge

·         Difficulty concentrating and your mind going blank

·         Irritability

·         Muscle tension

·         Difficulty falling and staying asleep

Though MS can cause anxiety directly through changes in the brain, the root of anxiety in most MSers is similar to those not suffering from the disease and created through a combination of life experiences, coping ability, and genetics. The disease is scary. Many of us with MS have frightening symptoms and an unknown course ahead of us. Anxiety is our minds’ response to this uncertainty and danger. For me, anxiety means I always have to have an ‘escape route.’

Getting a grip on anxiety can be difficult. Talking about it with a professional can be helpful. Acupuncture, meditation, and other relaxation techniques are good options for many people, as aremedical marijuana and other prescription drugs. There are several breathing techniques that can be useful for controlling anxiety, for example, deep breathing and the breathing techniques of yoga contribute to less anxiety and stress. I use a combination of all of these. I also embrace technology and use the Headspace App which teaches guided meditation.

Anxiety is perhaps the most taxing and under-treated psychological effect of MS, stemming from the realities of living with the disease. The trick is to learn how to improve the way you think about and react to the disease in order to prevent becoming overwhelmed. I encourage you to seek treatment for your anxiety and not to just ‘white-knuckle’ it. Positive treatment can greatly improve your quality of life.

Insurance...ugh.

As everyone knows, dealing with insurance companies isn’t easy. But when you have MS or another chronic illness, it can be downright challenging.

MS is an expensive disease. The treatment of MS typically includes prescription drugs and various forms of rehabilitation, such as physical therapy, speech therapy, and the use of mobility aids. A study published in May 2013 in the Journal of Medical Economics found that the total cost of healthcare for MS ranged from about $8,500 to more than $50,000 per year during the period studied (1999 to 2008).

I am lucky enough to work in a job that offers benefits or ‘job-based coverage’ so I have the option of paying my insurance directly out of my paycheck. It’s not cheap but I’m covered. Simple enough, right? I have insurance through United Healthcare (UHC) so I will get what I need. Well…

In 2014, I fell and started relying on my scooter more and more until I wasn’t walking at all because it was unsafe. The scooter is not meant for living in so it was time for a power wheelchair. I can’t walk anymore ergo get a wheelchair. After going through the hoops insurance requires, my first attempt at acquiring a wheelchair was denied. We had asked for more than insurance allowed. The wheelchair company (Numotion) wasn’t any help. Neither was UHC. My husband volleyed between Numotion and UHC and got what we needed. Because he persevered, I had a wheelchair in six months. Believe me, all other repairs and improvements have been a struggle as well.

I have also had to fight UHC on medications that were not deemed medically necessary or where the pre-authorization was no longer good. What do I have to prove?

I am terrified of what will happen if my wheelchair dies. Or if I am ever caught without my medication. What happens when you are disabled and your insurance falls through? If you have insurance and your insurance just flunks out for a bit, well, you’re left hanging, hoping, and relying on them to get it right. Eventually. I never thought that an insurance company would be the one to determine the quality of my life.

This system is not good enough.  Until it is fixed, you will need to be a strong, persistent advocate to obtain the help that is needed.

Caregiver as case-worker article at The Mighty

What’s New for MS

Research on MS continues to advance. Researchers are making headway in virtually every priority funding category identified by the National MS Society: stopping MS, restoring what’s been lost, and ending the disease forever. Researchers are closer to understanding what causes MS and how to effectively treat and prevent MS than ever before.

Here is a video on recent developments from MSWorld.org:  Overview of 2016 MS Research.

For a broader view of the history of understanding MS, the National MS Society provides an interesting document entitled “Critical Milestones for MS” here: Timeline of Progress in MS Research.

FINALLY there are a number of studies taking a look at the relationship between diet and MS. If I never hear "Have you tried ...? Or my friend only eats ___ and feels great!" it'll be too soon. But if there is actual research then that's a different story. Right now there is not enough evidence to recommend one diet over another. However, most of the diets agree on the same food items that should be cut out. Foods to avoid are those that:

·         Are highly processed

·         Have a high glycemic index (GI)

·         Are high in saturated fat

In general, the diets tend to recommend eating less fatty red meat and more fruits and vegetables. Keep an eye out for the results of these studies. The National MS Society reviewed various dies here: NMSS Diet and Multiple Sclerosis.

Here’s to a happy and healthy new year!

MS and My Hands

MS has taken a lot from me but the one thing that surprised and angered me the most is that MS has taken the use of my hands.

Multiple sclerosis can impact hand dexterity, coordination, and strength because of the effect it has on the central nervous system. This is another form of spasticity. I experience a tightening of the muscles in my forearm, which causes the hand and fingers to turn in. I often have a disabled look to my arm and hand. I call it my “dumb” limb. My fingers curl inward and I keep my arm close to my body. There has been a change to my arm’s natural resting position. I can no longer write or reliably button a button, and my typing has become more of the hunt and peck variety. It’s a dexterity and fine motor skills issue; my fingers do not move the way I want them to. It is actually hard NOT to automatically curl my hands. I have to consciously think about unbending them

I have difficulty with activities such as picking things up, maintaining a hold on items, and have trouble controlling eating utensils. I need help cutting my food into manageable pieces or I just spear the whole damn thing on my fork.

Other than basic motor skills, I have lost a lot the ability to do some of my favorite hobbies. I have always been a creative person. I loved being crafty: beading, creating journals/scrapbooks, keeping a book journal of books I’ve read along with writing down my favorite quotes. Now I have trouble holding a pen to write my name. I need oversized Sharpies to write a few words and I have to concentrate on each letter. My grip strength is poor (an OT told me it is about 25 pounds per hand – which she helpfully characterized as not enough to strangle a man!)

While there are some fixes -- I use speech-to-text software, have some grips that make holding silverware a bit easier, use an ergonomic mouse, and mostly rely on Sharpies to write – more and more, I feel trapped in a body that refuses to cooperate.