Ms Journey

Specialization of Medicine – Is that a Good Thing?

I am concerned that the specialization of medicine is leading to a decrease in the quality of care available rather than an increase. I have seen this more and more over the past several months as my husband has had a series of mystifying medical conditions requiring different “specialties” to determine the underlying cause. These specialties do not always play well together. Continue reading at https://multiplesclerosis.net/caregiver/specialization-medicine/

Understanding Immunosuppression

My husband, Lynn, began taking Ocrevus, to treat his Primary Progress Multiple Sclerosis (PPMS) in March. As his caregiver, one of my responsibilities is to become familiar with his medications and associated risks. While Ocrevus holds great promise for individuals who have PPMS, the impact of having continuous autoimmunity as a consideration in living his life is significant as well. Continue reading at https://multiplesclerosis.net/caregiver/immunosuppression-ocrevus/

New Mysteries All the Time

The mysteries of MS always keep it interesting as I struggle to manage my husband’s medical care and assist him in maintaining an optimum quality of life with Primary Progressive MS (PPMS). Another challenge came my way last week that stumped even his medical team after a hospital admission ruled out all sorts of possible causes. The mystery centered around his taking Ocrevus and developing confusion. Continue reading at: https://multiplesclerosis.net/caregiver/ocrevus-immune-system-complications/

MY INVISIBLE MS: SUPPORT FOR CAREGIVERS

Thank you to Sophia Nuamah for submitting the following guest post for the MS week. I appreciate her support for multiple sclerosis research and the family of caregivers around the world. world_ms_day_2019-us
Ms. Sophia Nuamah
MyTherapy
Landwehrstr. 60/62
80336 Munich, Germany
www.mytherapyapp.com/



Chronic diseases such as MS are usually termed as Invisible illness because so many people sometimes, don’t even believe you’re sick because the symptoms are not seen.
People diagnosed with MS can sometimes develop complications like Mental changes, Depression, Epilepsy, MS tremors, problems with speech and swallowing, Paralysis (typically in the legs), etc.
Some even experience relapses as they experience new or worse symptoms; and may experience some degree of reduced mobility at some point in time, and this can make everyday tasks difficult or even impossible without help.


Caregivers are noteworthy because of the critical role they play in the lives of people diagnosed with MS because there comes a point in time when they need extra help in performing normal daily activities.


Caring for someone with MS is physically and emotionally challenging. When you’re giving care and support to someone else, it is mostly very easy to disregard your own wellbeing. But it’s really important to look after yourself, mostly because staying healthy means you’ll be able to continue giving care.


Some of the ways to help maintain your physical and mental wellbeing are to take a break when needed to look after your health, renew your energy to be able to keep on with your caregiving and get help/support from others, to make sure you’re not doing everything by yourself.


For people living with MS who care for themselves, it is very important to get a support system and build social relationships to help you through the challenging stages of the disease.
Talk to people- this could be a friend, family member, a professional, or someone else who is also diagnosed with the disease or has experience in giving care; as MS can have a big impact on the people close to someone who’s living with the condition (family/friends), especially if they start to rely more and more on support from them every day.


Both people affected by MS and caregivers find that it helps to talk about their feelings and experiences of caring for themselves or other people.


Nevertheless, there have also been some technological advances in helping people diagnosed with MS manage their condition better to live normal productive lives like medication reminders to efficiently follow their treatment plans and smart devices- installed in homes to counter the problem of reduced mobility.


All these are signs of progress and hope for those living with MS, who have suffered in silence for so long; and though there’s a long way to go when it comes to invisible illness like these, Increased public awareness and more useful tools like this are making life easier for the people with them.


This infographic was created by the MyTherapy team, free app for Android and iOS.

Asking for Help

Communication is a tricky process. When I make a statement, not only am I projecting what I think I intend to say, but I am also creating in my mind an image of how I think you will receive my message. I tell myself a story about our conversation before we ever have it. That means that by the time the interaction occurs, I already “know” the outcome of the conversation in my gut before I speak the first word. I may be so focused on what I “know” you’re going to do based on the script I’ve written in my mind, that if you deviate from your “lines,” I’m likely to miss what you say in real time. Continue reading at: https://multiplesclerosis.net/caregiver/asking-help/

End of Life Decisions

Grief and dispair over loss
I try to stay optimistic about the future, but occasionally an event occurs that reminds me of how tenuous life can be. One of those events happened recently with the passing of a fellow caregiver’s spouse.

Similar health histories

About eight years ago, I meet the caregiver while my husband, Lynn, was a patient in Intensive Care (ICU). Her husband and Lynn shared similar histories (both had Primary Progressive MS – PPMS), though her husband was much younger. During the month, Lynn was a patient in the ICU, the caregiver and I had many conversations about the challenges of being a spouse/caregiver. It felt so good to be able to talk openly to someone else about how I felt about my new role, especially about my fears related to Lynn being in ICU. Those discussions lead me to start writing a blog about the struggles of being a caregiver with the hope of connecting with other caregivers in similar situations. Continue reading at:  https://multiplesclerosis.net/caregiver/end-life-planning/

Prepare to Become a Caregiver

Prepare to become a caregiver. In 2015, research conducted by the American Association of Retired Persons (AARP) found that 43.5 million adults in the United States (approximately 29% of the adult population) had provided unpaid care to either a child or adult during that year. With the growing need for in-home medical interventions and the limited resources available, experts predict that the vast majority of adults will at some point during their adult lives need to perform the role of caregiver to someone they know. Continue Reading at https://multiplesclerosis.net/caregiver/tips-prepare/

Remember Whose Life You Are Living

As a caregiver, I want to help make my spouse’s life better. I want to help him find answers to his medical questions, assist him in doing the things he cannot do, and help him in whatever way I can. As his MS has progressed over the years, his need for my assistance has expanded to the point that he is now entirely dependent on me for everything.

MS improved our marriage

When we first were married in 1997, Lynn and I had difficulty bonding because we were both very independent. Our marriage struggled because we did not “need” each other.  Having each been married previously, we were capable of managing homes and children without partners; therefore, adding one to the mix required significant adjustment on everyone’s part. Continue Reading at: https://multiplesclerosis.net/caregiver/choice-control/

Help with Difficult Conversations

Have you noticed how difficult it can be to have a sensitive conversation with another person without being misunderstood? Why is that?

Difficult conversations

  1. Today our primary mode of communication seems to be through text messaging or tweets. We use short abbreviated bursts of information delivered remotely.
  2. Texts and tweets allow us to keep our distance from each other. When we text, we send the message to an unseen recipient who experiences an emotional reaction we don’t have to acknowledge.
  3. Individuals fear to share how they feel about issues due to concerns about being ridiculed, rejected or embroiled in conflict. In today’s society, we do not know how to cope with these emotions; therefore, the fear of them leads us to avoid them if at all possible.
Continue reading at https://multiplesclerosis.net/caregiver/help-difficult-conversations/

Understanding How FMLA Can Help

Caregiving is not just a woman's job. Many men are caregivers for their parents.

Unreliable attendance

Living with MS means a lifetime of unpredictability. You may feel perfectly fine when you go to bed, but sometime during the night, a significant front moves through the neighborhood wreaking havoc on your body. Suddenly, getting out of bed to go into work would require the assistance of a powerhouse Olympic team, only they didn’t happen show up at your door to lend a hand this morning. Therefore, not only can you not go into the office, but neither can your caregiver who has to stand-in for the Olympic team and help out. Continue Reading at: https://multiplesclerosis.net/living-with-ms/how-fmla-can-help/

Right to Decide

I often feel like I have multiple personalities, and knowing which one I should be using can be difficult. Sometimes I know who I want to be, but it’s not always the one I think I should be. There are even times I know who I am and who I should be, but I don’t want to be either of them.

I act as my husband’s medical decision maker

Many times, I’m expected to act “in the place of” my husband. I’m his medical decision maker and his power of attorney.

Continue reading at https://multiplesclerosis.net/caregiver/decision-making-rights/

Unexpected Sadness

I got hit by feelings of sadness unexpectedly today. Keeping my self out of my husband’s sight at all times, I had to work really hard to hide the fact I was very close to crying. Usually, I guard my emotions well, and rarely break down. However, I have one weakness that I can’t seem to guard against: music.

Fell in love with his singing

Lynn had the most beautiful tenor voice you would ever want to hear before his MS progressed this far. It was his singing that sealed the deal for me in deciding to take the chance on marrying him and bringing our two families together. I had been burned badly in my first marriage and was very hesitant to remarry. Lynn was just as reluctant as I was as far as setting a date, but he was very romantic. Me on the other hand – I wouldn’t let my guard down in order to give him my heart either. Continue reading at: https://multiplesclerosis.net/caregiver/unexpected-sadness/

Hope or Regret: The 4-Wheel Drive Powerchair Debate

Powerchair
I know you’ve heard the phrase, “One person’s junk is another one’s treasure.” I have a new one for you: “One person’s hope is another one’s regret.”

Four-wheel drive powerchair

We have a $12,000 monstrosity my husband calls his four-wheel drive powerchair. We bought this large paperweight in 2009 but never used it because it came programmed incorrectly. Advertised as able to climb stairs, speed through sand, and out-maneuver muddy driveways without a hitch, the Predator is a basic, metal framed chair with no padding or seat, equipped with headlights, turn signals, a horn, and the ability to raise or lower its height. It’s very ugly. However, at the time, similar models were not available for the stated price in America, and Lynn desperately wanted a way to be able to go fishing. Continue reading at: https://multiplesclerosis.net/caregiver/hope-regret-powerchair/

Impact of Caregiving on Employment

In many families, both the person who has MS and the caregiver work in jobs outside the home. The impact of MS on the employer, therefore, is not only directly related to the individual with the medical condition but also the person or persons providing support to that individual. However, according to a recent study by Harvard Business School, most employers seem unaware that caregiving significantly impacts their bottom lines.1 Maybe they should pay closer attention. According to the report, approximately 75% of the workforce they surveyed had caregiving responsibilities. These responsibilities influenced their ability to be productive at work. According to the study, a third (33%) of those surveyed stopped work to care for an ill parent. Another forth (25%) provided care to a spouse.1 Continue reading at: https://multiplesclerosis.net/caregiver/impact-employment/

Reflections on Caregiving

Access ramp
New Year’s Day often brings a time of reflection, and for some, a time for establishing resolutions for change. My life tends not to be stable enough to attempt to create resolutions for change. However, I have been indulging in reflection quite a bit. I’ve been thinking back over how my role as a caregiver has changed over the years and the impact that it had on my marital relationship and my health. When Lynn and I first married, I knew his father had died of MS complications, but Lynn claimed to have no symptoms himself of the disease. We know now that he had several early signs of MS that he and his doctor failed to recognize. Continue reading at https://multiplesclerosis.net/caregiver/reflections/

Avoiding Typhoid Mary

Have you heard of Typhoid Mary?

Mary Mallon or Mary Brown (she used both names) worked as a cook and harbored the typhoid bacteria in her gallbladder. Wherever she worked, the families in those households became sick, and many died, but Mary herself never became ill.
Authorities believed that Mary infected over 50 people with typhoid, several of whom died. They met with her and explained that she probably carried the germ in her gallbladder. When asked to stop working as a cook voluntarily, Mary refused because she did not believe in the germ theory. She asked, “How can I be a carrier if I have never been sick?” Continue reading at: https://multiplesclerosis.net/caregiver/immunocompromised-protection/ to find out more about why I have to avoid people who might be sick to protect Lynn from getting sick.

Retirement to the Rescue

I have always had a tough time saying no to anyone. Saying no fills me with guilt. I like to solve problems and make others feel better. I, therefore, tend to suffer from a lot of blame if I can’t solve the issues presented for a resolution quickly or at all. I feel like a failure creating feelings of depression and anger.


On the other hand, pushing to answer complex problems can result in positive consequences, too. To avoid feelings of guilt, I struggle to try harder to succeed in reaching my goal of meeting the person’s needs, and it helps me to be more creative. However, often along with the added energy and motivation comes additional stress and anxiety.


Continue reading at https://multiplesclerosis.net/caregiver/retirement/

Holiday Preparations

Getting ready for the holidays at my house incorporates specific considerations that many families who do not deal with chronic illnesses do not consider as part of their preplanning task list. Since most of you readers have similar concerns, you probably know where I’m going with this but for new caregivers just starting to deal with the holiday season, here are some of the staging considerations that I do in advance to help the gathering go as well as possible.


Continue Reading at https://multiplesclerosis.net/caregiver/holiday-preparations/

Can You Speak?

I recently needed to use that phrase in a way I had hoped never to have to use it. No, my husband did not need CPR, but he was unresponsive. He had lost consciousness while being moved using a ceiling transport device and slipped out of the harness to fall four feet landing first on his shoulder followed by his head hitting the ground and bouncing up to slam into the door jam on the opposite side.


After hearing the thud and his caregiver’s cry of alarm, I ran to their location to find him unconscious and using a breathing pattern typical of someone who has had a seizure. His eyes were open but unseeing. My attempts to get through to him included shouting, “Can you hear me?” “Can you speak?”


Continue reading at: https://multiplesclerosis.net/caregiver/can-you-speak/

Something’s Different. Something’s Not Right. Listen to Me.

Something’s different.
Don’t you hear that? Don’t you see the difference?
It’s not the same.
Something’s wrong.
Something’s changed.
Trust me, I know. I can tell. It’s not right.
I don’t care that the lab work is normal.
I don’t care that he looks good to you.
I don’t care that you’re an expert in illness.
I am the expert on him.
In our world of daily living.
We are one. I know something’s wrong.
I know his every breath.
I know what every sound means
I know where every pimple, pink spot, dark bruise, or open tear appears.
I know his smells-good and bad.
I know his body temp-good and bad.
I know his moods-good and bad.
I know his changes-good and bad.
Just like an artisan working his craft
I am an artisan of healing in his life.
I know him.
I know what works and what doesn’t.
I know how best to apply healing.
You need my help.
I keep you from making mistakes.
I stop you from assumptions that harm.
I am your partner, Not your enemy.
Use ME.
Something’s different.  Something’s not right.
Listen.      To.        Me.
Something’s wrong.

Sorry I Haven’t Been Able to Write Lately

I guess most of you who have read my column in the past think I’ve stopped writing.  I have to admit that I’ve considered whether I should do that because my time to do anything at all these days is so limited but the publishers of this site are so kind and they have asked me to share my stories whenever I get the opportunity so I’ll keep doing so for as long as I can.

 Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-sorry-havent-been-able-wright-lately/

What Goes In Must Come Out

One of the joys of having a progressive disease is that everything changes. Just as you adjust to one change, something happens and the “fix” you had in place is no longer working. As Lynn’s caregiver, I have not found his physician to be particularly helpful in warning me about things to come. If I ask about an issue, he will give me a prescription or a referral but he’s not much on home remedies or being proactive on warning on what I might encounter. Therefore, most solutions I come up with are things I stumble across and come up with myself and are not recommendations by doctors so you might want to talk to your doctor before you decide to do anything I mention here.


Now, my take on waste management…

Continue reading at

 https://multiplesclerosis.net/caregiver/what-goes-in-must-come-out/

Realities of Life

For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skincare, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skincare) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.).

At night, the work increases again by preparing meals, etc., for the next day, bath time, nighttime rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time-consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.


Continue reading at

 https://multiplesclerosis.net/caregiver/realities-of-life/