The Circle of Care: Considering the Neuropathy Caregiver

Tying Things Together and Thinking about Neuropathy Week - May 16-20, 2011

2011-04-19T15:44:00.023-04:00

Yes, it's been forever. You're right. I've been out of touch. I could say "My bad", but the reality is that blogging is a wonderful tool for the diligent, the journalers of the world. Like many, I journal in my head and then my fingers on the keyboard go other places, sometimes as a distraction, often for the mindless read. Apologies. With your feedback and comments, I'll be once again guilted into responsibility and will write with greater consistency.

Alot has happened with Josephine and nothing has happened either. Which is a theme with neuropathy sufferers. About a month ago I took her to Columbia for her first EMG and nerve conduction in nearly two years. I'm past expecting miracles, but look for the tiniest measure of calcuable improvement. After 7 years, her neuropathy neurologist, Dr. Thomas Brannagan, my mother and I generally do an experiential exchange where I say what I see, she tells him what she feels and he does his physical exam. Which is why the EMG/ENG measurements capture my attention. The inert machines are not wired for hopefulness. They just measure conduction and reaction. So, no Josephine had no changes in the longest nerves down to her ankles and feet (loci of her greatest disability), but there was improvement in the nerves from the right shoulder to the forearm. We'll take what we can get. Again, another theme for those with neuropathy.

On brighter notes, my mother, a friend and I attended part of the Neuropathy Association's first summit in Washington in December. Next time I hope the summit is during Cherry Blossom season, but the sessions were impressive in their content and speakers. The wide age and range of people attending struck me. In the caregivers breakout session, I was surprised at how many victims and their loved ones have a reluctance/anxiety about publicly discussing their affliction. Maybe these people don't have to have a Howard Beale/Network shouting from the terrace moment, but I personally could not understand the degree of concern about expressing the affects of the disease.

Which ties then to the slant of comments I see  when I browse the Neuropathy Association's Facebook page.

https://www.facebook.com/home.php#!/NeuropathyAssociation

Granted, a FB page of this type is a community of commonality, and yet, I often hear variations of "Noone outside understands." Or "I'm feeling alone with this pain. Even my family doesn't get it."

I get it. They're right. The public doesn't get and barely knows about it. And yet, this is why I entered a video this past February sponsored by the American Academy of Neurology.  http://patients.aan.com/go/about/neurofilmfestival

I did this video regarding my caregiving experiences with Josephine not because all neuropathy victims are 82 year old sweet women who have CIDP and a daughter that has returned to take care of her, but because she was unafraid to talk about it.  Josephine wanted others to know how she feels. But she can't believe that there are 6000+ You Tube views.

The end of the video was essentially a PSA on behalf of the 20 million who have some form of PN.   My competitive spirit taking hold, I pressed for votes on the AAN website for fan favorite, and I was disheartened to learn that the voting processed was being gamed - yes, even by very sick people. I lost all three contest categories, but as cliche as it sounds, I won too. It was the first video the Neurofilmfestival had ever had on neuropathy.

Yes, there were two on Guillain Barre syndrome, but none on PN. And people who don't know me or Josephine were rooting for us as well as them.

So what do we do now with the little media marketing train that could? Especially with Neuropathy Awareness week approaching? We write/we engage/we seek out hyper local blogs associated with newspapers, offer an entry to the Huffington Post on their health page, send a 50 word e-mail to a local TV producer (together with a personal short video) on why neuropathy should be covered. You cite Sarah Manguso's elegantly written book, The Two Kinds of Decay, as a literary source for a high browed editor. It was positively reviewed by the New York Times Book Review and Sarah was only in her early 20s when she was struck with CIDP.

I have told the Neuropathy Association staff that I am willing to assist in developing short push messages for local media gatekeepers. If you're interested, send e-mails of interest in pursuing this initiative to the Neuropathy Association.

There will be many rejections, but there will be some traction. Because health stories do sell. There is community.

Remembering My Mother is not a Medicine Cabinet

2010-08-12T12:48:00.020-04:00

I've just spent the better part of twenty minutes (in between work phone calls) figuring out when Josephine is going to have her IV/IG treatment so as not to interact with any mood swings and irritability that her experimental use of interferon beta-1a, a medication that acts as an immunomodulator (a common treatment for MS) may cause. I then called the manufacturer of interferon beta-1a to ask how many days apart I can inject her with it after she has had an IV/IG infusion. This, on top of the third drug, mycophenolate mofetil, that she takes for CIDP (also experimental for neuropathy).

Beyond these three medications, Josephine takes 10 other prescription drugs, some related to heart disease, some related to peripheral arterial disease and thyroid disease. This does not include her non-prescribed supplements, like Vitamin D.

I write this not because my head is spinning with arrangements and nurse appointments, but because every once and a while, I feel I need to take a step back and ask myself (and her) the benefit of treatments and medications.

I have been reading the Facebook posts of the Neuropathy Association page, and I know there are others in the same boat. Meaning, some posts from neuropathy sufferers read like a litany of a prescription manual. And yet, these same patients cry out for relief, especially from neuropathic pain.

Three years ago I asked my mother if she was willing to try plasmapheresis as a treatment option for CIDP. This when she was 78 years old. With a dutiful, yet optimistic attitude, Josephine went to Columbia Presbyterian/New York Hospital, got hooked up to the machines, and I watched as the blood started running our from her and back to her. I was calm because she was in good nursing hands. I left to make yet another doctor appointment (unrelated to neuropathy) at Mt. Sinai Hospital. No sooner did I step on an uptown bus that I got a call from the nurse saying that my mother's heart had experienced atrial fibrillation (uneven rhythm) and that she was being rushed to the emergency room. I ran twenty blocks back to the hospital thinking I might have killed her by pushing her into this treatment. Turns out she went back into rhythm quickly (after some Heparin) and thankfully, did not have to go on Coumadin on an ongoing basis. Apparently, the blood flow in and out of her body was happening more rapidly than her body could absorb. She stayed at the hospital for observation, and she told me "Never again." We agreed. Never again.

Here's the point. Many people who have neuropathy have other underlying health issues, or, as a nurse once told me, "it's the stuff that comes with the neuropathy." I can understand the Lipitor, Cozaar, et. al.. Lots of elderly take these meds. But my level of frustration at the extent she is trapped in her limbs spurs me on, even six years later, to consider every avenue.

Yet within that drive for a "fix", I have to try to be mindful that it is my mother's mind, body and soul at hand. Sometimes I feel that she goes along with the medicine cabinet, et. al., because she wants to please her kid (who wants her better) and because even though deep down she knows she'll never walk the same again, maybe there will be something.

But with all the medications, her disposition does get affected. Her day begins with five pills in bed. This hapens before she has breakfast. Not a way I'd like to start my day. And every time I bring the pills to her with water she winces. But she takes them.

Sometimes the body needs a rest. And while I'm not a doctor, I try my best (particularly with IV/IG infusions) to time it so she has plenty of recovery time.

Josephine will never be med free, but I can try to make her not feel like a lab rat.

Happy Trails to You

2010-07-14T12:11:00.003-04:00

Less than a month ago, Josephine and I went on a road trip. Well, not exactly a road trip. Actually, we flew from New York to North Carolina to attend the wedding of a family friend's daughter. I'll skip to the happy ending picture first (the bride with my mom).

What was significant was that this was the second major trip, including second flight, since my mother was diagnosed. And the second time since she was wheelchair bound.

I will not deny that going into this trip, my level of anxiety was higher than hers. Her ignorance is sometimes her only bliss. I am used to running to an airport, dealing with lines, packing quickly and lightly, especially for weekend junkets. But the mental checklist that I put myself through getting prepared to take her (again, she's 81, wears a hearing aid and has this disease) took its toll on my sleep and my mood. As neuropathy sufferers know all too well, there are good days and there are bad days - pain, immobility, depression. Trust me, as a caregiver, I cannot predict what kind of day Josephine is going to have any better than she can.

The last time Josephine had travelled by plane was in 2006, one week after she had been released from a hospital after falling 14 steps. It was a major leap of faith on my part. Two planes to Albuquerque, wheeling her through Dallas-Fort Worth airport, hoping the flight attendants would be sympathetic.

Since New York to Raleigh was a short flight on an airline with big seats (JetBlue), I thought it would be an easier load. But expect the unexpected.

So I'll pass on suggestions for those who will take the road during vacation season.

Travelling by Plane

Large Seats and Get in the Front of the Line - I don't like sitting upfront (I'm a wing girl), but if you can afford it, pay for 1st Class and/or fly an airline with big seats. The difference between getting to Row 5 and Row 19 can be huge. Sad to say, but throngs of people trying to jam their luggage on the overheads can give you lots of nasty looks if you have to take your time to get to the seat.

This trip, we took JetBlue. Business class seats at decent prices. And the TVs on the seatbacks are great destressors (like little kids watching videos in vans).

Contact the Airline Carrier Ahead and Make Certain that They Know a Person with Disabilities is Coming on Board - Do not discount this. The madness of heightened security and on time arrivals/departures have made the whole air experience more functional, less enjoyable. Make sure notes are in the reservation as to what you need. You'll want to pre-board (regardless if you don't have a walker, use a cane, etc.). You may want a wheelchair assist to the gate. However, if you choose a wheelchair transport to the gate, you will be vulnerable to the TSA regime (more on that in a minute).

If you're used to printing your boarding passes online at home before the flight, you may not be able to do it if your reservation indicates that you or your passenger needs special assistance. So, when you get to the airport, find one of those liaison types hanging by the ropes and see if you can get to the front of the check-in line. Trust me, you'll need the time cushion for the TSA search.

When you get to the gate remind the gate agent about pre-boarding and be prepared to check the walker and disassemble the transport wheelchair (if you have it). Make sure you get the tags. The flight attendants will stow the walker immediately below and it should be right outside the bridge when you land. Hold on to parts (like a wheelchair's foot pedals) in the overhead compartment if you are bringing your own wheelchair.

Be nice to the flight attendants. They can help you board or they could care less. We had two angels on the way down, Michael and Matthew. They assisted Josephine into Row 1, gave me water to calm down after the TSA insanity (to come) and checked out that her feet were in a decent position. And they gave her a wing pin (which was simply adorable). On the way back, I had virtually no assist either being seated or in getting out of the seat. We were on our own.

Your Govt at Work - The TSA - If you are in a walker, wear AFOs (ankle foot orthotics for drop foot and weak limbs) or are in a wheelchair (the airline's or yours), get ready. You could be in the line from hell. And unfortunately, to my knowledge (I'd be happy to be corrected), there is no way to get through the line faster. The bottom line is that there is no separate line for screening people with disabilities. Taking off your shoes fast to dump them in a tray is not the same thing as taking the AFOs off and waiting for someone to be frisked (including the chair). We were at JFK Airport in ample time and Josephine get stuck in bumper to bumper traffic of six wheelchair people ahead of her. I will say that most of those people could actually walk through the screen and chose to use the airline's wheelchair. This is not my mom's case. She waited a half an hour for a screener to pat her down, pat down the AFOs and swab the wheelchair. We nearly missed the plane. Nine minutes to go! Fifteen minutes into this madness I ran down to the gate (while she was back at the TSA terrified that we were going to miss the flight) and begged the gate agent to hold the plane. There is no radio communication between the TSA and gates so the gate agent went strictly by the book. "You have 10 minutes to make it lady. Otherwise, you're on the next flight," he barked. The next direct flight was 10 hours later. Yeah, right.

We did make it. The pilot saw my look of anger and distress, and the two great flight attendants helped. The irony is that I'm a lousy flier and always have been. Josephine, Miss High Anxiety ordinarily, thinks flying is great, had no worries, no leg cramps and no problems. Go figure.

In the Car

Stretch those legs. Make sure you are not cramping. And particularly if you rent a car, bring a leg lift so that you can pull your legs into the car.

If you are renting a car, figure out what car would be most comfortable to access. We had a 4 door Toyota first, but even with the leg pull and the seat all the way back, she couldn't pull the leg in well. We switched to an Altima and it was easy peasy. And if they want to charge you more because the first car doesn't work, plead for a waiver of the extra charge. I did and it worked. No shame.

Medicines

Bring a "day of the week" pill box. Normally, we don't use this at home, but it is helpful to have things segregated. Do not check this pill box if travelling on the plane. Better for TSA to deal with you upfront, you see what you have, than worrying about the random rummaging that TSA does of luggage.

Accomodations

Very very important. If you are booking a hotel or motel, it's critical to find out what they mean by a "handicapped" bathroom. It could mean one grab bar by the toilet, to a full wheelchair accessible room where you can wheel the chair right into the shower. And the shower has a plastic seat. I think nearly everyone with neuropathy can benefit by grab bars, but for us, having the large bathroom made a huge dressing difference for me. Josephine didn't panic once in the shower, and the large size enabled me to maneuver that much better. Yes, you can look at pictures of the rooms posted on the Web, but even if it is a large chain hotel, contract the local manager on the phone to learn the particulars. Sometimes you have to call in advance to get the plastic shower seat so do it the morning of/day before.

Check out the bed and its mattress. Can you lift yourself easily from the mattress and alight? Do you need to bring a portable leg lift to move your legs over the mattress to get up? Would bringing a walker be beneficial even if you regularly just need a cane?

Clothing

Sometimes, due to her fall and the weakness of her hands, Josephine's tops get fed as much as she does. Fortunately, she managed to keep her beautiful silk top that she wore to the wedding pristine, and I didn't want to embarrass her by putting a bib in front. But I knew to bring some extra tops and pants in case of mishaps. It's bad enough to be sensitive to one's disability, so the greater the planning to retain the dignity, the better.

The Happy Ending (this time at least)

In the end, it was definitely worth it. Our friends were so happy to see her. And as for my mother, just like anybody else, she enjoyed the break away from her environment. Maybe especially because her environment is so circumscribed. Southern hospitality was extended to her in a way that touched me. Everywhere we went, from the Waffle House to the hotel, neither my mother nor I were looked at with pity, but with kindness. I'll never forget it.

Some Simple Steps to Bring Awareness

2010-06-18T16:08:00.006-04:00

First of all, I want to thank everyone who has commented on this blog thus far. Yes, I've been delinquent in putting up timely posts (cardinal rule for blogging). Life seems to get away from me sometimes. In a few days you will learn of the latest addition to my mother's medicine cabinet and my thoughts on expectations for PN improvement. There are many things we can share, but taking the care (pun intended) to write thoughtfully (especially after a week when Josephine seems to be falling every day) often seems like more heavy lifting (beyond the physical lifting I do).

I have loved your comments for so many reasons, but foremost is that between this blog and The Neuropathy Association's Facebook page there is huge community that feels neglected, sometimes misunderstood and often adrift about where to ask questions, seek comfort and empathy.

That said, let's use our collective power to gain public attention.

A month ago I stood outside Macys Herald Square waiting for the sun to go down so I could take pictures of the Empire State Building as it was lit for the colors of the Neuropathy Association - purple, orange and white. It was a balmy Thursday evening. Tourists sat on the metal chairs and took in the midtown hub hub.

Me? I thought about strategy.

So, here are some simple things we can do to bring public attention to neuropathy. I write this with special sensitivity to those who may not live near big academic medical centers or anywhere near one of the 15 or so medical centers cited by the Neuropathy Association.

The Language We Use - Let's keep it simple and understood. Neuropathy is a disease so let's call it as it is. Do not refer to it as a "disorder" or "nerve problem". Know why? Because it's been my experience that when people (including medical professionals) hear the word "disorder" it gets relegated down in the pecking order of medical seriousness.

When you affirmatively say "I have neuropathy which is a disease of the peripheral nervous system," it sidesteps the common comment which goes along the line of "Oh, isn't that something that is a side effect of diabetes?"

So, you, educated PN sufferer or caregiver, then be quick to add..."Oh, and by the way, neuropathy is a disease separate from others. You can have diabetes and not have neuropathy and you can have cancer, have chemotherapy and either get or not develop neuropathy."

All Together Now - Neuropathy is a distinct, neurological disease of the peripheral nervous system, that can result in motor, sensory or other neurological problems.

I cannot begin to tell you how many hospital residents and interns I have tortured during Josephine's various hospital stays with this mantra.

Give this disease the weight it deserves so others (including your doctors) know you mean business.

Don't Wait for the Celebrity Endorsement (Be Your Own) - I was in journalism school when Josephine was diagnosed. At school, I wrote two pieces on neuropathy, one of which was on my frustration that there was no celebrity public face to the disease. If only we had a Michael J. Fox, right? And as recently as this past April, when Luci Baines Johnson was diagnosed with Guillain-Barre syndrome, I was touched by a commentator in the Dallas Morning News who wrote that it would be great if Ms. Johnson would advocate for all forms of neuropathy because the commentator's 20something daughter had CIDP and her mom was desperately concerned over her daughter's depression. Well, Luci got treated at the Mayo Clinic, went back to Austin and here we are. Ms. Johnson's doctors expect a full recovery, but I'm not expecting her to take up a public mantle.

In the six years since this disease has become part of my family's life, I have learned of celebs and demi-celebs who had PN and didn't want it publicized or died before they could be a vital spokesperson.

Here's a reality about celebrity advocacy. The reluctance to come forward years ago was, I believe, due to the fact that walking imbalances or fervent pain could be easily misconstrued, especially in Hollywood. You walk like a drunken sailor, but you're not drunk. You just can't feel your feet.

And here's another reality. The 20 million who have neuropathy? The disease comes in so many forms, with so many known and unknown (idiopathic) origins that it's hard for regular folk (and even sufferers) to get their heads around. For example, Josephine has CIDP, but she has no burning pain and many people with neuropathy do. (NB: Her doctor, Dr. Thomas Brannagan, told me last month that most CIDP victims have the numbness she has, but no pain). Or a friend has Celiac disease and also has burning neuropathy.

Lots of forms, lots of consequences, lots of people, with one common denominator: attack of the peripheral nerves.

Do we give up? No. Our numbers make the story. And the variety of the causes and effects make it too.

Your marketing plan?

Find the health reporter in your local newspaper, your local blog (yes, blog) and your local television affiliate.

As a freelancer journalist, I can attest that health reporters want story ideas. They welcome them. They get tired of pink ribbons too. (Well, not really, but they look for a new place/story to go).

How do you sell it to a reporter? Email of 50 or less words describing the disease (in general terms), numbers affected, etc. Scour the Neuropathy Association website http://www.neuropathy.org/ for ideas and structure.

Remember to add a thought that while it is often difficult to pinpoint the cause of peripheral neuropathy, whether because of better diagnostics or increasing affects of environmental issues, neuropathy is a disease epidemic.

Perhaps we can work collectively to come up with a blurb or two that can be tailored for different media outlets in different geographic markets. I'd be welcome to feedback on this.

Be persistent. Call and follow up e-mail the reporter, the editor, the health desk. Be willing to talk about your own situation, but do not make it the exclusive profile. Ensuring that the reporter/editor knows that this disease cuts across demographics, gender, race, etc. is critical.

Being Doggedly Determined When So Much is Uncertain - Funding for research was poor before the health care legislation was enacted. I shudder to think about what will happen next with legislative changes and consequential changes in insurance coverage. But what I do know is that unfortunately or fortunately, the numbers of people affected by neuropathy will grow to the point that attention will be paid.

So if you are a Facebook or Twitter user, let other friends and family (who don't have neuropathy) know about the disease, about the Neuropathy Association, etc.. We can take comfort in each other, but we need to extend the reach of the stories. I'm continually surprised at how many times I get knowing looks or curious questions whenever I tell people my mother's story. An "a-ha" moment goes off for someone else who knew someone else who had it or thinks they might have it, etc.

So, like the old Fabrege shampoo TV commerical, tell two friends, who will tell two friends...

Be fearless in your advocacy.

Another Anniversary and A New Beginning

2010-02-15T14:17:00.054-05:00

It's February, a month I've always been ambivalent about. There's Super Bowl and Valentine's Day, but there's also unpredictable bad weather and the dead of Winter's ennui. And since 2004, sharp memories of a month that turned my life upside down.

In a 2008 print edition of Neuropathy News, I chronicled how my now 81 year-old mother, Josephine, could not hold herself steady during a friends' Super Bowl party (she had to be lifted up 2 steps after stumbling up the first eight of our friends' house). It was because of those friends' insistence that something was terribly wrong that she was hospitalized the following day. From that point until eight weeks later, I bounced around attending to her hospitalization and hoping for a firm diagnosis: from two hospitals, two neurologists, one rheumatologist, one five day long IVIG infusion at Mt. Sinai Hospital in New York and a six week stint at Burke Rehabilitation Hospital in Westchester, New York (where, as an aside, Josephine was put in the stroke victims unit because Burke hadn't seen a case of neuropathy in recent memory). No, she didn't have myositis. No, it wasn't a rheumatoid problem. And no, she was too old at 75 to present with multiple sclerosis. Typical neurological diagnosis by process of elimination phenom.

During the course of this marathon, I learned acronyms, like IV/IG, PN, CIDP and EMG. Today, as sure as I can cite certain Internal Revenue Code sections in my law practice, I recite neuropathy lingo to strangers as if they should know what I'm talking about. When I had insomnia while my mother was in rehab, I would find listserves and information boards referring to either neuropathy, PN or CIDP.

I tried to find specialists in neuropathy in the New York Metro area. I remain grateful to a young woman who used to work with me, who spent hours Googling "neuropathy" and "CIDP" to come up with a team of doctors affiliated with Cornell University. Hearing me crying after leaving Mt. Sinai Hospital one night, my friend Becky asked, "What can I help you with?" And I told her. More on accepting help to come. Today, my mother remains under the compassionate and considerate care of Dr. Thomas Brannagan, who is also the medical advisor for The Neuropathy Association and director of the Association-designated Neuropathy Center of Excellence at Columbia University.

February became late March, and my mother was released from Burke just as the snow was melting in the visitor's parking lot. And in those intervening weeks when Josephine was in-patient, maintaining a house on Long Island that was a widow's proud domain suddenly became my responsibility. Today, that responsibility is a given.

Josephine is now mostly in a wheelchair, although she can walk for brief periods with assistance (no, it's not like spotting gymnastics in school). She was ambulatory with a walker until 2006 when she fell 14 steps going hand over hand from the second floor of her house to the first. She has a "severe" case of CIDP (chronic inflammatory demyelinating polyneuropathy) which was diagnosed as "idiopathic", but she'll tell you that it's the reawakening of the spinal meningitis virus she had in 1951. No doctor gives credence to her theory, but with all the attendant mystery of this disease, I believe her.

Since 2006, her CIDP has remained relatively stable. The wax/wane analogy that neurologists use to describe this disease has rung true.

Which brings me then, to this blog.

Today, my caregiving experiences and my mother's CIDP are at a point where it is no longer the unfamiliar. It is the routine and sometimes feels like the world without end. I've decided that if divine grace has asked me to accept the fact that my mother has a chronic neurological illness, then I should translate that certainty to doing for others what I wished I had six years ago: finding a voice, a source, a community of knowledge.

What is known about neuropathy is medically arcane. And this disease takes shape in so many forms (and doesn't discriminate by age/race/gender and economic status). I realize that our family's history and story is not that of others.

But maybe, as I chronicle my past and reflect on the present of our story, something will resonate with another caregiver or patient.

And rest assured, I don't want this blog to be principally a mother-daughter journal. The reporter in me hopes to impart useful information and others' histories. In my everyday life, I meet plenty of people who have neuropathy, who have never heard of The Neuropathy Association, and just accept the disease as untreatable.

Follow me not because of me, but because of you and a loved one. Give me your thoughts. Tell me your stories.

And let's see what kind of community we can build.