Saturday, March 17, 2018

When Life with MS Gets Heavy

This isn’t a blog post for newbies. Or for those who don’t want to be reminded about what multiple sclerosis can do to our bodies. Or for those who want a typical Dave happy-go-lucky essay that will make you smile and escape and maybe make you laugh out loud. No, it’s not that. (I can hear the hissing disappointment now.) But after I read a reply to a post I made on Facebook the other day, what I am writing needs to be said. Sorry.

Recently a newer MS drug, Zinbryta, was voluntarily pulled off the market due to serious safety concerns. The response from some in the MS community was predictable. “Exactly why I don't take any of the MS drugs.” Another chimed in. “This is the problem with all of these drugs.” And so on, and so on. One even wrote that her husband got a brain infection (from another drug, apparently one of the 16 worldwide who tragically suffered that fate), and proceeded to warn everyone to be VERY SCARED about MS medications.

Life has risks. Jesus, just stepping out your front door has risks. You could trip over the step, lightning could strike you, a car could careen into you, and then a power pole could be felled by beavers and crush you. Or you could narrowly avoid a power pole felled by beavers only to step on the resulting live wire and get shocked to death while thinking, Whew, lucky that power pole didn’t hit me—stupid beavers.

Likewise, all drugs have potentially serious side effects. All drugs. As do vitamins. Yeah, vitamins. As do dietary supplements. Indeed, the New England Journal of Medicine reports that adverse events from supplements are responsible for an average of about 23,000 emergency department visits per year.

But “pick your poison” anecdotes about MS drugs and their potential side effects, no matter how rare or mild, somehow often trump and subsequently bury all benefits these drugs can deliver to people with MS. And that’s a big problem. Because the potential side effects from our shared disease can be devastating. And this is where it gets heavy. I’ve lost friends to this disease. And I am powerless to help my friends who have enormous challenges daily, hourly.

Recently, Jacob told me about the last meal he ever ate—he now can only taste food with his tongue. He can’t swallow. Or walk. Or use his arms. Or talk. He has a four-year-old daughter, an amazing wife, daily caregivers, and a streak of stubborn like my own. Just five years ago we were laughing and sharing a pint (top photo). And now. Side effects from drugs didn’t make him like this, MS did. The same goes for my blogger buds Marc (Wheelchair Kamikaze) and Nicole (My New Normals), and too many friends I’ve made on ActiveMSers. For too many people I care about, every day is climbing a mountain. Every. Day.

And sometimes, sadly, those mountains get too steep, as this deeply personal and touching story, An Instinct for Kindness by Chris Larner on BBC Radio (link expires March 30, 2018) relays about an MSer’s final journey as told by her former husband. It’s crushing, disturbing, and eye opening. Allyson's MS challenges are not uncommon (creeping disability) and her attempted solutions are not uncommon (drugs, diets, magnets, anything). She finally makes the decision to go to Switzerland, and I can’t blame her.

An Instinct for Kindness on BBC Radio
Her passing, and the mountains looming before friends, might make you feel hopeless to the challenges this disease presents. But wait. Through their stories and struggles, they might be able to help you. Help you not to underestimate MS.

It’s easy to hold on to the idea that the MS you have isn’t going to affect you like it affects others. (That might ultimately be true.) And thinking that way is not just you, and it’s not just people with MS. That trap is set for anyone with health issues, even Steve Jobs, who many considered a genius. He thought that same way when he avoided traditional treatment for his cancer for nearly a year. That’s human. Unfortunately, that’s also hubris.

There is no question bad shit could still go down even if you do treat your MS with the drugs that are available. Yes, there is a chance the drugs themselves could harm you, too—don’t be blind to that. But far more likely: it’s going to be the disease that wreaks the most havoc. Take that seriously. And also take seriously that this disease is most treatable in its early stages, not when it is progressive and rumbling like a runaway train.

I am not trying to scare you. Really, I’m not. I just don’t want you to conflate the risks of a taking a disease modifying therapy with the risks of not taking one. To fall prey to the idea that taking any of the current MS drugs is worse than the disease itself. For the love of God, no. Just, no. They are not even remotely the same, and this general guide on medical risk tries to explain that. And if that sinks in today, don’t thank me. Thank Allyson, Jakob, Marc, Nicole and, to borrow a phrase from Marc, the other incredible souls with this disease who inspire others.

24 comments:

Craig Garrison (cgarri) said...

Change is hard. Pointing at infrequent side effects or merely nuisance side effects from drugs as a good to avoid change is self defeating. As has been said so many times "Seize the Day", it's the best way to make tomorrow better.

Anonymous said...

Hi Dave, been following people like you, Marc and Nicole since diagnoses of SPMS in April of 2012. I Love you guys. All of you. From Bali to the Great Northwest. I am on my 3rd DMT (Ocrevus,) take supplements, meditate and do many other things in an attempt to alleviate this dreaded condition (creeping paralysis.) I am a 48 year old male, have no children or caregiver, medically retired about 3½ years ago and am riding this wave out like a godamn surfer. And I only surfed one time. I think one of the best medicines is staying in touch with blogs like this one. Thanks for posting and keep up the good work.

JE

Dave Bexfield said...

Thanks Craig, perfectly said.

Dave Bexfield said...

Appreciate the comments, JE. And for the record, we love you too.

Lisa Emrich said...

Nicely put, Dave. This reminds me of a friend with MS diagnosed in her early 30s who lived with MS for less than 10 years. Last summer she told me of an incident where she got in her vehicle after grocery shopping and totally couldn't figure out/reminder how to get her vehicle started and backed out of the parking space. She had to have help to get going. About six months later, she committed suicide.

This disease can wreak havoc in so many ways. For many, side-effects from the drugs amount to a temporary inconvenience, but side-effects from the disease can be everlasting.

-Lisa

Dave Bexfield said...

Tough story, Lisa. Indeed MS can wreak havoc in so many ways... Thanks for the comment.

Anonymous said...

But don't forget that tagline/slogan...I HAVE MS, MS DOESN'T HAVE ME

BS

Wendylea said...

Interesting article. My experience relates in a way. I live in Canada. I was diagnosed a living years ago with relapsing-permitting MS. My first appointment with my neurologist after the diagnosis, he informed me that I wouldn't be treated with any of the drugs used to treat Ms because I did not meet the criteria for being treated. The criteria being and that in Canada, no matter what province you live in, you have to have had two relapes in 12 months. My first two relapses were 18 months apart so therefore I was not going to be treated. At first I was upset because I felt I was being discriminated against. Especially after I learned that some of the drugs could slow the progression of the disease. After having three separate incidents of total paralysis. Each incident was worse and took longer to recover from. 5 years after being diagnosed I took the money from my pension and travel to California and had the ccsvi procedure. I also started using medical marijuana and in the last 3 years CBD oil. I have not had an incident of paralysis since I had the ccsvi. I'm doing very well considering how long it's been since I was first diagnosed. I started to show symptoms 5 years before I was diagnosed. I try to keep up what is happening in the world especially in the US in regards to Ms treatments. I sometimes wonder if the drugs would have made a difference. In spite of what my neurologist tells me I believe I wouldn't be doing as well as I am have I not had CCSVI procedure.

The healthcare system in Canada has its limitations. I enjoyed the article and I really enjoy your website and I'm truly grateful for it!
Your neighbour to the North,
Wendy Cox

Anonymous said...

Wow Wendy, is it still like that in Canada in 2018? I live in the UK and here they do not treat anyone with SPMS but they do allow anyone with RRMS to have treatment. Around 40% of people with MS here are offered treatment. I have also lived in Canada (but before being diagnosed) and in the US (where I was diagnosed). I will say the treatment rates in some single payer countries like the UK are 1/2 what they are in France, Germany, the US (where it is 60-80%) and it is one reason why I am against a single payer health care. Your story makes me very sad indeed and I hope you are able to access treatment there soon.

tanya kelly said...

Dearest Dave... my name is Tanya from Sydney Australia ����
I am the Mum of 3 (21,17,12)... I have to say one thing about your last post and that is not only did I like but thank goodness for a real person with a real vision of ms and its sucky disabling nonsense...

I was Diagnosed 4 years ago and skipped straight to primary progressive ms... my husband says that I am never content to start at the beginning of anything... according to my doctors I may have had ms for 20 years undiagnosed... apparently me seeing my own decline and struggles didn’t alert anyone... (i had ct scans and ultrasound sounds & it took me to collapse before an MRI was done)....

I am struggling with my left leg... it acts heavy... and constant pain in left arm... fatigue is an eye-opener for me (falling asleep in the middle of a computer install isn't funny).... my back & ribs are usually the on slaught visionary’s/receivers of my pain... but I tell people that Ms sucks... but I'm here and ignoring the pain so let get and laugh a little...

I am 41 and a tech who installs internet connections and does a little web design as well as I teach the elderly to use the internet/email as well as I assist them in buying computers with their needs in mind... I am also a counsellor.

I thank you, Dave, for the refreshing insight into your days... & it is simply nice to see no sugar-coated BS...

I am in the midst of setting up my own blog and hope yo become a subscriber to your blog and Facebook posts... I love love love your no Bullshit sugar-coated approach... Bloody refreshing...

Thanks again for putting honesty back into Ms...

Regards
Tanta

GAV said...

I spend what little money I can scrape together to do things. I look back and think , im glad I did it then cause I couldn't do it now. I cant imagine the future so I'm living in the moment

Dave Bexfield said...

Anon (Re: MS doesn't have me), I'm with you. Wendy, yikes. Tanya, hugs down under. GAV, smart.

Anonymous said...

Here here Anon.. I have MS, MS doesn't have me!

Kayla said...

Really great post, Dave. Some important points that needed to be said. While not being blind to potential risks and side effects, it's even more important to not be blind to the devastation the disease itself can wreak.

Persia said...

Thanks for the alternative insights. Living in far southwest UK, age 64, a fit and active matriarch, it began with balance problems which rapidly became progressive loss of mobility. Eventually after an MRI scan, a neurologist said, "We have no treatment and no cure for primary progressive multiple sclerosis."
That was the first and only time the MS words have been uttered to me by a medical professional.
The GP's advice: "Go home, keep taking the painkillers and make the most of what you have left."
Aged 68 now, it's almost a relief to be free of hospitals, medics and the well-meaning false hopes suggested by friends. Blessed by a capable husband, kind daughters and cheerful small grandsons, I've come to terms with the situation and being content to live for today. We work out our own strategies to deal with the new hurdles as they arise and make very few forward plans for the unknowable future. Seize The Day.

Heidi Scott said...

@ Wendylea,

Thankfully this is not the case anymore. I was diagnosed 2.5 years ago in Canada and the landscape has definitely changed BUT it does depend on your neurologist how progressive a treatment regiment you will receive. If anyone had a neurologist who is reluctant to prescribe or change your drugs find a different neuro. I go to a MS clinic that is a research facility. A couple of my friends though were going to a neurologist from our health region who was reluctant to change their meds. Both are paying a price for that (and have recently changed neuros but will have to live with the deficits they have accumulated). If your neurologist is a wait and see type find a different one.

@Dave. Great job. These things need to be said. I'm far more afraid of the disease than I am the drugs and it really bothers me when I hear people spread fear about the drugs.

Dave Bexfield said...

Great comments, all. And I appreciate that this is a civil conversation, which when it comes meds can spiral off topic in a hurry.

Bat in a hat said...

Hi,
It is good to see some posts from people in the UK.I am 64 and live in the east of England. I was diagnosed with PPMS in 2007, an active independent person, working full time, in the swimming pool for a quick 30 lengths before work etc etc ...! I had to stop working in 2009, not because of my MS, but because the company I worked for collapsed after the Banking crisis. No one wants to employ someone with a progressive disease if they don't have to,plenty of interviews to tick the equal opportunities boxes, but no employment. I work as secretary for a charity (not MS)on a voluntary basis - but I want to earn cash.
Progressive is what it says, I am now a wheelchair user outside the house, but use a frame to drag my feet along inside.My husband is very supportive - in all senses of the word. I have learned to drive using hand controls, although it takes as long to get in and out of the car as it does to drive to my local town. I do seated exercise and stretching every day at home and marvel at all the things the rest of you do.
I have tried the few drugs licenced in the uk for Primary MS (not many) but now use small dose of Pregabalin which helps prevent nerve pain - a larger dose doesn't help - just seems to cause 'the zombie' effect.
I now have a permanent catheter, with flip-flow valve(not bag) which has actually increased my independence and definitely increased the amount of sleep I get, as I can't get out of bed unaided.
I lost a friend last week to Kidney disease - nothing to do with MS - everyone has problems.
My new mantra taken from this friend is-'Don't wait for the storm to pass, learn to dance in the rain' (metaphorically in my case!)
We are still alive at the moment, make the most of the love around you, it sometimes pops up at the most unexpected places, it is a good as a drug.
Jayne

Dave Bexfield said...

Jayne, eloquently said.

My Odd Sock said...

Dave,
Well said. Life is full of risk. If you don't take the risk--you don't have life. Simple as that.

Dave Bexfield said...

MOS, you should be a copywriter. Oh wait, never mind.

Anonymous said...

Dave,
Everyone has their own comfort zone when it comes to risk. I don't fault anyone for their choices. Mine has changed over the years. I used to try everything and anything in the hopes that it would change the course of my disease. But, after 33 years of MS and 12 with SPMS, the drugs that are offered barely even have a sliver of a chance (read, none) to change my outcome. I just finished my second Ocrevus infusion on the insistence of my very caring neuro and have no illusions of it modifying my decline. I have a great deal of dis-ease in the fact that I have been nothing more than a pawn in a cash-grab for Big Pharma to line their pockets with.

Dave Bexfield said...

Anon, I get you totally. Ocrevus might not significantly help either of us, especially in the leg department. But if it means extra time using of our arms and upper body, as research has shown, then I'll take that sliver of chance, which I think might be bigger than you realize. But then I'm also an optimistic misfit, so there's that, too.

Anonymous said...

I so hope your half-full attitude leaves mine in the dust! I'll gladly eat crow. Either way, keep us informed. I'll chime in again with my results in four or five months.