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.