Tips for families of those recently diagnosed with Guillain-Barré syndrome. 

I receive so many emails from concerned family members of people that have been diagnosed with GBS, pleading for me to give them advice on how to deal with this. I experienced firsthand what their family has gone through; my family was in the exact same position at one point. And we were desperate for any kind of suggestions to help us all cope. So I completely understand why so many people reach out to me.

Suddenly being diagnosed with GBS, and not understanding the disease and what was happening to me, was absolutely terrifying for me and my family. And that acute stage in the hospital was the most challenging part of GBS by far. Not only was I in severe pain, I thought I was dying. I was dealing with severe anxiety and depression and barely had the will to go on each day. But after I had recovered and wrote my book, I was able to really dissect my experience with GBS and see what sort of things helped me and my family during that time. These suggestions may not help everyone, because every person and case is unique, but they really did make a difference for me. And I hope that providing some suggestions can help those going through it now. I hope that sharing these will give you even a bit of strength when you need it the most.

The NUMBER ONE most important thing you need to know is that GBS is an acute disease, meaning that once the patient reaches their absolute worst, they WILL start to recover. In general, symptoms will get worse for two to four weeks before they start stabilize (for me it was actually 6 weeks), but they WILL start to improve. And not only do YOU need to remember this, the patient needs to be told this EVERY. SINGLE. DAY – if not A HUNRED times a day. They WILL get better. There is every reason to believe that they can get out of the hospital one day and back to their life again. But it is going to take time….a really long time. I’m talking weeks or months before you see much improvement. And that will be the hardest part for both families and patients– the paralysis of the body, waiting for something to move again. But it will come. They will hit their plateau and very slowly, things will start to improve. That’s why they call GBS- “Getter Better Slowly”. So remind them of this. Remind them constantly that they WILL get better; it’s just going to take time. Stay positive, don’t lose hope and don’t ever give up.

Nerve pain will likely (but not always) be the hardest thing to get a handle on. It is a severe pain that will be felt throughout the entire body because the nerves are inflamed, and I will be honest, it’s a pain that is so unbearable that it makes you want to die. Massages and moving positions may help alleviate the pain, but truthfully, the only thing that will really help is a narcotic or opioid. And while you may be worried about them being on such strong medications, I assure you they need it, and you need to get them it as much and as often as allowed. I was allowed top ups every hour and I would often watch the clock those last ten minutes struggling to make it to the end of the hour. The pain is very severe and needs to be dealt with, and if that means they are so drugged up they are almost sedated, then do it. And don’t be afraid to ask to try other medications. Something else may work so much better. Also, get them onto an antidepressant ASAP. Their depression will be quite severe, so be prepared for this – and antidepressant medications have been proven to help with nerve pain.

They also may be dealing with sensitivity to touch, because their nerves aren’t working properly. A slight touch of a fingertip can literally feel like a knife is cutting into their skin. For me it was all over my entire body and the most painful in my feet (could also be in the hands). I couldn’t even handle a sheet or blanket on my feet because it was too painful. So be EXTREMELY careful and use slow and gentle movements when touching their body. And you may need to say this to the nurses at times. Not everyone realizes that this can happen with GBS patients, and they aren’t always careful when touching them. As the weeks go on, you will get to know the nurses and which ones are really good at handling the situation. And you may want to talk to someone about trying to get those nurses assigned to them when possible. Having a nurse that really knew my case and how to handle my GBS, made such a difference for me. The nurses that I really connected with were the ones that were able to calm me down during panic attacks and were best at managing my pain. 

Second to pain, the depression and anxiety will be another very difficult thing to deal with. They will be in a very dark place and will feel that their life is over. There may be times that your family member asks to be taken off the ventilator because they just can’t go on anymore. You have to remember and keep reminding them that they are going to get better and that they are going to get out of this. And try to give them a reason as to why they need to carry on. For me it was my newborn baby, and my family reminded me of that every time I tried to give up. As I mentioned, get them onto an anti-depressant medication sooner rather than later, and get them an anti-anxiety medication ( like Ativan ) for when they are having severe panic attacks. These times will be very, very hard. This is when you need to be the strongest for them. 

Another important thing to remember is that other than if they are in a coma, it is likely that they can still hear everything that is being said. Even if they are lethargic, and appear like they are out of it or like they are sleeping, they can still hear you a lot of time. So talk to them!!  And tell them what is going on! I was so terrified when I was first told what I had because I had never heard of it – and they kept saying  that it was very rare. And hearing some of the nurses say they had never seen a case of GBS before only made me more terrified. For my sanity I needed to know as much as I could about what was happening to my body. It was so important to me that I be kept in the loop about everything. But I couldn’t say that at the time. So tell them about GBS and what is happening every day. Get a copy of the GBS handbook from the GBS foundation and read that to them so they can start to understand what GBS is and what it is doing to their body. Read them my book “Happily Ever After” to  help show them that someone else has been in their shoes and knows what they are feeling. And remind them again, that with GBS, they will get better.

They may be hard to watch, but check out all the different You Tube videos out there on Guillain-Barre syndrome. There are tons of videos, including my own, showing people’s experiences and recoveries. It will not only prepare you of what is to come, it will show you that there are so many people out there that have been through this and recovered – often completely.  And if you think they may want to see them, show them the videos. Some of my family members were hesitant on showing them to me because they didn’t want to scare me, but personally, I was happier that I wasn’t being left in the dark. Seeing another patient’s video of his journey with GBS, helped show me that there were other people out there that had had it, gotten through it and recovered from it. It definitely gave me hope.

If you are able to find someone that has had GBS in the past to visit them, than even better. Being diagnosed with such a rare illness that no one has heard of and doctors rarely come across is extremely isolating, and you feel like there isn’t possibly anyone that could understand what you are experienceing….so being able to meet someone else that knows what they are going through can make all the difference in the world! The GBS Foundation has liaisons all around the world so get in touch with them and hopefully they can find someone within your area to come and visit them. When I first saw someone walk into my room that had severe GBS just like me, and that had recovered – it made me think that maybe, just maybe I could too. 

Another great resource is Facebook! There are several fantastic support groups on Facebook – just search Guillain Barre or GBS in the search bar and they will come up. There are thousands of active members around the world that can answer questions for you as they come up – and as things progress you will likely have many. So reach out to people who have been where you have.

If they are on a ventilator and unable to speak; communication will seem almost impossible.  So as soon as you can, write out all the letters of the alphabet on a board to spell out words. Point to the letters and have your family member move his head or blink his eyes when you get to the letters they want to use. Now remember this is going to take a very long time and will likely be frustrating for them, so it’s not something you will use a lot – but it is a tool you have. As a better alternative, try to list the common things they ask for, and write those down too. Things like, “In pain”  – to get them more meds, “Hot” if they need a cloth on their forehead ,  “Turn” if they need to be moved to a new position, etc, etc. and have them point to that word. It may also help to have them mouth words when you are trying to figure out what they are saying. Please don’t ignore them and always try to figure out what they are communicating to you, even if it is difficult.

Autonomic things – like blood pressure, body temperature, the ability to urinate/have a bowel movement, these are all things that are usually affected and are very common. While obviously these are things to pay attention to, I wouldn’t say that you need to be worried that they are happening. Doctors will provide medications to help, but these things are all very normal with GBS.

Advocate for them!  Your family member cannot talk, so you need to be their voice. And sometimes you have to push to get what you want. Don’t be afraid to ask the doctors about trying new medications, or new methods to help with their struggles. As the days go by, you will figure out what works for your family member. Yes the doctors have experience with illnesses but maybe not GBS, and even if they do, that doesn’t mean they know what works best for them. All GBS cases can be very different, so listen to what your family member is communicating to you about what they need, and be their voice to others.

Stress levels, tension and emotions will be high so it’s normal for the patient and family to often be agitated and frustrated. And you won’t always agree with what a nurse is saying or doing. But if a nurse is being flat out rude to you and it is causing anxiety to your loved one, get them out of there. Yes it’s important to remember that everyone is likely stressed and tired, but if your nurse is downright ignorant or cruel, and dealing with them is unmanageable – speak to a supervisor.  You have every right to ask to be assigned a new nurse. It is not good for the patient to be in a stressful environment.

After a week or so you will hopefully get a physiotherapist to visit, and they will show you range of motion exercises. The patient will be paralyzed and unable to move, and it can be quite painful, but it is still very important to keep those muscles and joints moving. For me, as the sensitivity in my skin decreased, it actually became something I looked forward to. It helped with muscle stiffness and aches and pains, and helped pass the time. People don’t realize how important it is for family to help move those limbs around but I’ll give you an example – my family lifted my right arm up above my head several times a day, but didn’t lift my left one as high because every time it bumped my trach, it made me throw up. Months later, when I was in physio, I couldn’t lift my left arm nearly as high, and I had to spend twice as much time on that arm rehabilitating it. Also ask for something to keep the foot from dropping – PT will likely bring in some sort of boots for the patient to wear that keep the foot locked and straight. If you don’t do this, the muscles in the feet will weaken and cause “foot drop” -which makes it more difficult to lift the toes up when learning to walk again.

Eventually they will need to be sat up in a bed and after that, they will need to be taken out of the bed and put into a sling and then into a chair (watch my video to see how that’s done). The patient will probably hate this because it will be so painful to be taken out of bed, but it is also very important. It is not good on the lungs to be constantly lying down, especially on the left side, as your heart actually puts pressure on the lungs and start to collapse it. 

Take care of them as much as you can! A lot of the time, nurses don’t have the time to do more than the basics, so do what you can to make them feel clean. It’s bad enough that they don’t get to bathe. So brush their teeth (use an electric toothbrush to make it easier and faster) wash their face at night, shampoo their hair, and put lotion on their hands and legs (if it’s not painful for them). Put lip chap on their lips and put eye drops in their eyes. For girls, if they are up for it, even shave their legs and paint their toenails. I felt absolutely disgusting as I lay in that hospital bed for days and days, but having my family do these minor things did help me feel better. And it also helped pass the time and gave us something to do. Oh and for patients with long hair, get that hair brushed and then kept in a braid at all times. It will be so difficult to deal with otherwise.  

Being trapped in a bed, time is going to feel like it is going by even slower than it is for that person. Find things to do. Watch TV shows and movies, and read them books. Let them watch the news if they like that, so they don’t feel so isolated and out of touch with the world.  Read them their emails, Facebook messages/posts and text messages. I was trapped in my own body, isolated in a hospital room and having my mom read my messages to me gave me a lot of comfort knowing that there were people out there thinking about me. Try and make their hospital room feel more like home. Bring them their pillows and blankets from their house. Put up pictures of family and friends where they can see them. If they have pets, see if you can bring them to the hospital for a visit, (possibly even just outside). To brighten up the mood in their room, listen to upbeat music, and try and make them laugh!! But if they need to, let them cry. The majority of the time there will be nothing that can  cheer them up and you just have to be strong for them when they can’t be.

Take what the doctors tell you about their recovery with a grain of salt. GBS is an extremely unpredictable disease that a lot of doctors don’t even fully understand, and it’s just not possible for them to fully predict what is going to happen – even if they try. Now because they don’t want to be held liable for someone not recovering when they were told they would – they will usually give you the worst case scenario. I was told that I would not walk for at least two years and even the EMG test showed that, but then I was walking completely on my own only three months later. If a doctor tells you bad news, please don’t get discouraged. Miracles happen every day so please stay positive and hope for the best. However it is always smart to be prepared. Expect the best case scenario, but plan for the worst. Start thinking about what sort of things they may need at home if they are disabled. Sometimes people go home before they are fully recovered, so look into wheelchairs, walkers, wheelchair ramps, etc etc. on your free time.

Take it one day at a time. Don’t let the patient worry or stress about what is to come down the road. They need to focus on getting through today and that is all. As they are learning all the things they have to learn again, (like breathing on their own, lifting their hands up, eating with cutlery, and eventually walking) tell them to focus on each of these things, one thing at a time. When I thought about all the different things I was going to have to learn how to do again, I was so overwhelmed and it gave me panic attacks. Tell them to focus on one task at a time. They can deal with tomorrow’s struggles, tomorrow. Tell them to just focus on getting through today.

For me, even though I was improving on a weekly basis, I couldn’t see it. In my mind I was not getting better. You need to show them and remind them constantly that even the tiniest improvement is a sign that they are getting better. Videotape those tiny first movements, from fingers and toes wiggling, to them holding up their head up again. In a few weeks when they are even stronger, show them those videos to remind them of how they have improved. They will slowly realize that they are getting better, even it if it is taking a very long time. As they reach new milestones, document them and constantly point out the things that they can do this week that they may not have been able to do last week. These things may help reassure them that they really are improving- even if they don’t see it yet. And constantly encourage them not to give up fighting. They will feel discouraged that things aren’t happening faster but as things improve they will slowly get stronger.

GBS will likely be the most challenging thing that your family will ever face. It’s not going to be easy, but I promise that you will come out of it stronger than before. It will be hard to see now, but you will learn so much about strength and determination, and what’s important in life. I myself look back on my experience with GBS as a blessing because it taught me how short life really is, and to live my life to the fullest. PLEASE stay strong, remember to stay positive and don’t ever give up. You will get through this. 

When I read the emails I get from people dealing with a new diagnosis of GBS, I can hear the pain and fear in their words. It breaks my heart because I understand it so well, and I truly wish I could do more to take away that pain. I hope that this article can at least help give people some tools to deal with it.

Please share with anyone you know that may be dealing with a recent GBS diagnosis. 

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It’s GBS Awareness Month!

This month is an important one to me, as I always try to bring awareness to the disease that nearly took my life 6 years ago after the birth of my daughter. Guillain Barre syndrome is a rare disease that affects about 1 out of every 100,000 people. When I was diagnosed with GBS, many of the doctors and nurses I had had never seen a case of GBS before.

So what is GBS? It is an autoimmune disorder, where your immune system attacks your nervous system, quickly paralyzing you (usually from the limbs inward). About 30% of patients will require mechanical ventilation to help them breathe (myself included) and majority of patients will need physiotherapy to teach them how to do day to day tasks again. About 5% die from complications. GBS is an acute illness, meaning that once the acute phase is over, you start to recover, but this can take months to years. Some patients don’t ever fully recover and are left using walkers or wheelchairs. So why is this month important? Because rare diseases like GBS and CIDP just don’t get the same amount of media coverage or fundraising that other diseases, like Cancer, get. It may be rare, but people still need resources and support, and there’s not much out there when a disease is rare. Also, early detection is key and getting treatment started can make all the difference in the world. It’s important to listen to your body and go to a doctor if something doesn’t feel right. I went in with a tingly finger and weak legs and was told I had a pinched nerve…72 hours later I was paralyzed in ICU where I spent three months. I was completely healthy before this, and was just 26 years old.

I’m grateful to have recovered completely but not everyone is that fortunate. In honor of GBS awareness month I ask that you please watch my video and see what GBS does to a person. And SHARE it for further GBS awareness!!! If my story inspires you to live your life to the fullest, or motivates you to donate to the GBS foundation, or helps someone else with GBS not feel so alone, then it makes what I went through all worth it. ❤️

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Happily Ever After, apart.

A year ago today my divorce was finalized, and I couldn’t be happier with how far we have come the last couple years. Our separation was far from easy, but I am very proud of the relationship that we have today. Just because you get divorced does not mean you have to hate each other, and us getting along has made life SO much easier – on everyone involved. It takes time, but it is possible to come out on the other side as friends.

I often get compliments on the way we handled our divorce, and the way that we co-parent our daughter. Our divorce was pretty smooth; we never stepped foot in a lawyer’s office, we share custody of our daughter, we split all costs for her, and we don’t do child support. We do things like her birthday party and parent teacher interviews together, we have a lot of the same friends, and we see each other often. Growing up with divorced parents that were friends made things much easier for me as a child, and it was extremely important to me after we separated, that Casey grew up with parents that got along.

For anyone going through a divorce with kids right now, the biggest piece of advice I’ve can give you (that I’ve learned from both mine and Jordan’s divorces), is to LET EACH OTHER LIVE. Each parent is going to have different parenting styles, different views, different priorities, different morals and different lifestyles, based on who they are as a person – so it’s normal to not always agree with what the other parent does. BUT if your child is happy, healthy, and safe – that’s ALL that matters. If you believe that your ex is a good parent, you have to let them live their life and trust that they are doing what they believe is best. The key to co-parenting is taking a step back and allowing each other to raise the kids how they see fit. Even if you disagree with how they do something in their home, you have to try to refrain from criticizing them, because it won’t help. You are divorced, and giving each other the respect to be a parent and make their own choices, will make things so much better between you two. And besides, kids having different experiences and learning different viewpoints is actually a good thing, and will teach them that everyone thinks differently, to be open minded, and to come up with their own views and opinions in life based on what they learn.

I know my daughter is in an extremely loving, happy and healthy home at her daddy’s, so I don’t need to know to know the fine details of his day to day to life with her. I am incredibly grateful for the relationship Casey has with her father and his girlfriend,  and the way that we all get along. James and I are happy in our own lives with our new families, which is all that I ever wanted for the both of us. Turns out we did live happily ever after, just apart.

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“Flaws are just a unique piece of our history”

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“In Japan, broken objects are often repaired with gold. The flaw is seen as a unique piece of the objects history, which adds to its beauty. CONSIDER THIS when you feel broken”

SUCH a beautiful quote!! I found this photo on my computer, of the scar on my stomach a couple weeks after the 34 staples were removed. After seeing this I see that my scar actually healed pretty nicely !! When I was diagnosed with GBS, I was brought to ICU because I could no longer breathe on my own. The doctors decided to do plasmapheresis as a treatment as soon as I got into ICU – a process in which the plasma from my blood is removed and replaced with a plasma substitute. A catheter would be inserted into a major vein in my body; in my case a vein on the right side of my groin. This is supposed to be a fairly routine procedure, however when inserting the catheter into my vein, my femoral artery was accidentally punctured (I have tiny veins) which ruptured it and caused massive internal hemorrhaging. I was rushed into emergency surgery, where my stomach was cut in two to get to the bleeding. I spent severals hours in surgery, and doctors told my family to be prepared that I may not survive it. I did survive obviously, although this was just the beginning of an extremely long journey as now not only did I have to recover from such invasive surgery, my body was at the same time attacking itself and about to get much worse from the Guillain-Barre.

It’s actually quite amazing how our bodies are capable of healing and scarring. The scar left on my groin is quite painful when touched but the scar on my stomach feels as if it’s not even there. Our scars are a constant reminder of how strong we are, and these “flaws” really are a unique piece of our history.

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The Aftermath

My residuals from GBS and how they affect my life

It’s been 5 years since my life changing experience with Guillain-Barre syndrome. Given the severity of my case (only about 30% of GBS patients end up on a ventilator), I’m so fortunate to have recovered as well as I did, and I’m grateful that I can do all I can. I realize that I am where I am because of how hard I’ve worked (and I give myself a huge pat on the back for that), however, I’m also not ignorant to the fact that not everyone who has had GBS, is as able bodied as I am. I can push myself as much as my body allows it, and I definitely do, but I know that not everyone can. In some people’s experiences with GBS, the damage is just too severe, and their recovery is just not as complete as mine was. Some people have limitations, or have severe fatigue, and just can’t do certain things, no matter how hard they push themselves.

While I made a complete recovery from GBS, I still have some residuals that were left behind. Now some people may disagree with that statement and say that my recovery was not complete if I was left with residuals, but these things are all quite minor to me, and don’t affect my ability to live my life just as it was before. So to me, my recovery was complete.

People email and message me all the time, asking about my recovery, and I wanted to share all the different things I experience now from having GBS. Not everyone with GBS is left with these residuals, but I think a lot will be able to relate to most of these feelings, that are often hard to explain to others. These are my residuals in order of severity and how often they affect my life:

  • Neuropathy in my feet – This is probably the most common residual in GBS patients, and one that causes several different symptoms; including numbness, tingling and hypersensitivity. Neuropathy is a result of damage to the peripheral nerves, causing the nerves to incorrectly receive signals from the brain. Because of this, my feet ALWAYS feel numb and tingly, as if they are asleep. They are also extremely hypersensitive, so even the tiniest of touches are extremely painful to me. Stepping on a tiny pebble feels like I’ve stepped on the most painful piece of Lego ever; someone touching my foot with their fingertip feels like I’m being poked with a knife, and even walking on sand feels like walking on sharp rocks. I no longer enjoy pedicures, and I usually sleep with my feet outside out of the blankets, because the sheet rubbing up against them is uncomfortable. I often joke that I feel like a superhero with my superhuman ability to feel things on my feet. I also sometimes get strange sensations in them, like my foot has been electrocuted, or like a bug is crawling across them. While the numbness, tingling and hypersensitivity is constantly there and has been since GBS, the strange sensations are much more rare now. When I talk to other GBS patients, this is the residual that is brought up the most.
  • Weakness in my ankles – Another very common residual from GBS, is weakness in the ankles. Just like if you’ve rolled or sprained your ankle, they are just not as stable as before. Because of this, it’s very difficult for me to stand on the balls of my feet, I am unable to wear really high heels (although I can get away with shorter heels for short periods of time) and I have to be very careful when walking or running on uneven ground. The chance of me rolling my ankle is very high, although I have been VERY lucky and haven’t. I rarely run on grass and stick to cement. Because of that weakness, my ankles also can’t handle as much impact as they once could, and they ache and throb whenever I run on them two days in a row (which I don’t anymore). Another thing that this affects is my ability to stand for long periods of time. Standing still for more than a few minutes makes them start to ache as well, so I am usually trying to find somewhere to sit whenever I can. I can strengthen them by doing certain exercises in the gym; I just find it’s not worth the risk of hurting them, so I’ve accepted that my ankles are like this now.
  • Feeling temperature in my extremities – Another symptom of neuropathy is the way I incorrectly feel temperature in my hands and feet. In my feet, I can’t feel if they are hot or cold whatsoever. I ‘m able to walk barefoot on freezing cold snow, and put my feet in an extremely hot bath, without feeling a thing. While I am extra careful with heat (I NEVER get into a bath without feeling it with my arms first), I am pretty lazy when it comes to the cold. I can’t feel when my feet are freezing, so I rarely wear socks, and they are always as cold as ice. My family always gives me shit for never wearing socks in the winter. As for my hands, they are the opposite. While I don’t have any numbness or tingling in my hands like I do in my feet, my fingers are extremely hypersensitive to temperature. When I touch my fingers to snow, they burn for hours after as if I had frost bite. When I hold a hot coffee in my hands, they sting like I burnt myself, and the pain is severely exaggerated. That exaggeration in my hands is only with temperature, and not with touch.
  • My breathing and my voice – While this isn’t actually a residual of Guillain-Barre, it is a residual of being on a ventilator, and something that does affect me. Whether it was the breathing tube I had in my mouth for 10 days, or the tracheostomy tube I had in my throat for over 2 months, my vocal cords never came back as strong as before and I do believe that they were damaged at some point. My voice is hoarser and a lot lower than before, and my throat always feels a little scratchy; as if I am starting to get a cold. I can’t hit high notes anymore and screaming loudly is both difficult and painful. My breathing, I assume from breathing through a machine for so long, isn’t as strong as before either. Running up a flight of stairs leaves me breathless. Even though I do TONS of cardio and I can run faster than I’ve ran before, I still struggle with running for long periods of times. I usually run in short intervals because otherwise I am struggling to catch my breath.
  • Weak Hip Flexors – When you walk upstairs, you engage several different muscles, including your hip flexors (a word I learned in physio!). My hip flexors are just a little bit weaker than before, causing me to have to work a little bit harder to lift my leg when I go up stairs. I don’t notice it at all on smaller stair cases, but by the 6th or 7th step on longer ones, I can feel it getting harder, and I often catch my toe from not getting my leg high enough. This happens to me often at the gym on the Stairmaster.
  • Foot Drop – Because of the weakness in my feet leftover from GBS, I have a little bit of trouble lifting my toes up when I am walking and I have to use a little more force to lift them to ensure they don’t catch the ground. This used to be much more severe, and I used to have to wear AFOs (foot braces), but with the help of consistent exercise, they are MUCH better now. I’m almost not even aware of it anymore, except when I am tired that I find my toes dragging more often.
  • My concentration and memory – When I am having a conversation with someone, I often find myself struggling to find the word that I want to use. I will be in full conversation and know what I want to say, but I just can’t think of the word. This can be quite embarrassing in work settings, or with people I don’t know. I also lose my train of thought a lot, as my mind wanders more often, and I find my level of concentration is not where it used to be. My long term memory is still great but my short term memory is definitely lacking.
  • My balance – Partly because of my weak ankles, it is very hard for me to stand on one leg at a time. Every single time I put on pants, I have to stand with my back against a wall, or against the bed, otherwise I will lose my balance. Doing lunges and certain yoga moves is difficult for me, but I always try, and overtime it has improved.
  • Uneven strength/weakness – When my muscles regained their strength, they did not come back evenly whatsoever. Some of my muscles are much stronger on one side of my body, and although I do try to get them more even in the gym, some sides remain a lot weaker than the other, no matter what I do. My muscles also shake and vibrate whenever I exercise, as if I am pushing myself WAY too hard and they are at the point of fatigue, but they aren’t.
  • Body stiffness and muscle cramps – When I first got out of the hospital, every single time I woke up in the morning, I felt like an old man. I was so stiff and sore and felt like I had to warm up my body to be able to move around. I would also get very severe muscle cramps and charlie horses in my legs whenever I slept. With the help of regular exercise, I’ve found that both of these things have improved drastically. I still get a little sore when I sit for long periods of time, or when I haven’t worked out in a few days, but definitely not as bad as before.
  • Fatigue – I am very fortunate that I don’t deal with this as severely as some other patients, but this is one residual that I know is still there. I just don’t have the energy that I used to have (although getting older and having kids doesn’t help) and a lot of the time I would really just like to lie down. However the more active I am, the less fatigue I get, so I try to keep active every day.
  • Swallowing pills – Difficulty swallowing food and drinks can be a common problem after GBS, one that I am fortunate that I don’t deal with; however I do have problems swallowing pills. I think it has more to do with the fact that I used to have to swallow 20 pills at a time back in the hospital, and now the thought of taking one more pill in my life makes me gag! I’ve switched to gummy vitamins so I don’t have to take pills very often.
  • Weakness in my hands – probably the most minor of all my residuals, is that I find opening a water bottle or a jar requires a little more force than before. I can usually do it, but it’s more difficult, and I often just hand them off for someone else to open.
  • Aches in my feet – I left this for last because I deal with is so rarely now, but it is definitely the MOST painful of all my residuals. It’s also one of the most common residuals, and one that many GBS patients will take medication for. I call it “GBS feet”, and it is a severe, aching, throbbing pain I get from time to time in my feet. It’s caused by neuropathy, and the pain is similar to walking on your feet for way too long, but times a hundred. When I first got out of the hospital, this pain was constant and I was on a heavy dose of medication 3 times a day to lessen the severity. But at its worst, the pain was very difficult to manage and the medication didn’t really help. I spent many days lying on the couch with my feet in the air trying to take the pressure off of them, and cannabis was the only thing that I found alleviated the pain faster. Over time, the constant pain gradually went away, and I slowly came off the meds about 2 years later. Now, every few months or so, when I am overly tired or stressed, it will flare up (always at night time) and the pain is just as severe as before. I no longer take the medication (it takes several weeks to even kick in, and you must take 3 pills, 3 times a day for it to be effective) so I find that high pressure massage, rubbing them on a massage ball, lifting them high above my head, and cannabis, help. I’m very grateful to not have to deal with this often anymore.

 

I’m very fortunate that the majority of my residuals are minor and don’t affect my day to day life like some people’s do. Like I said before, some patients or doctors may say that my recovery was not complete, because I still have these weaknesses, and aches and pains. But I can walk without the help of anything, I am able to work full time, and I am able to do everything I could do before GBS (if not more), so I personally consider myself completely recovered. And I will never take that for granted and will continue doing what I am able to do.

Many people who had GBS deal with similar residuals, to varying degrees. Some residuals are more noticeable (they may have weakness and wear braces on their legs, or be in wheelchairs) but many things you wouldn’t even notice if you saw them walking down the street. But that doesn’t mean they aren’t there. Just because you can’t see someone’s pain or struggles, doesn’t mean it’s not real. Weakness, pain and fatigue can be severe after GBS, and can affect their ability to walk, to exercise, to drive, and to work. These residuals can have a very negative impact on people’s lives.

That being said, I do believe that people need to push themselves a little. Sure, I could certainly use my residuals as excuses; as reasons why I can’t exercise, but I don’t. I could have said there is no way I could exercise when I was in a wheelchair, but instead I sat in it and lifted dumbbells. When I did Insanity, I could have said I couldn’t do it because certain moves were too hard on my ankles, but instead I modified it, or did a different move. I could say that my ankles hurt when I run, so I can’t do it. Instead, I run every second day. It’s important to figure out what you are able to do, how long you can do it for, and try to push yourself a little more as time goes on! And you really have to make time for it and make it apart of your daily routine. Yes there are days I don’t want to work out, but I still do. Hell there are days that I don’t want to work out, and I DON’T, but I don’t beat myself up for it and I start over again the next day.

My residuals are a part of my life now, but I don’t let them hold me back. And neither should you. You need to figure out what you love to do, what you are able to do and DO IT! And don’t be afraid to push yourself! That’s the only way you are going to see what you are capable of!

For those of you that had GBS, do you deal with similar residuals? Are there any residuals that I didn’t mention that you deal with?

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What is CIDP?

CIDPCIDP is an illness that is often compared to Guillain-Barre, and is a term that you may have heard me use from time to time. I myself had never heard of it, until I started attending GBS conferences and found out that there was another disease out there like GBS. CIDP is a part of the GBS/CIDP Foundation; because we experience many of the same struggles, and I have several CIDP patients in my support group meetings.

CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. It is very similar to GBS in that it is a rare disorder that affects the peripheral nervous system (the nerves that are not a part of the spinal cord or brain), and is likely caused by a reaction from the immune system. Many of the same things that can trigger GBS may also trigger CIDP, (a case of GBS can even lead to CIDP) but a cause cannot always be linked. Just like GBS, as the illness progresses and as the immune system attacks the nerves, it starts to damage the myelin sheathe around the nerve, causing weakness or paralysis.

The biggest difference between GBS and CIDP is the onset. GBS generally comes on suddenly and progresses very quickly. GBS patients generally reach their maximum weakness in less than 30 days (in most people actually 14 days). But in CIDP, muscle weakness slowly progresses over months. CIDP is often called the chronic form of Guillain-Barre. GBS is an acute illness, meaning that once you hit your maximum weakness (the plateau stage) you start to recover and it does not usually return (although it can), However, like its name states, in Chronic Inflammatory Demyelinating Polyneuropathy, the symptoms are chronic and continue, and do not usually improve unless ongoing treatment is provided. However, some people do stabilize. The initial symptoms of CIDP are similar to GBS; with tingling and weakness, slowly spreading throughout the body. However in contrast to GBS, most people will not go to a doctor for several weeks to months, because the weakness is so gradual.

Treatments for CIDP include glucocorticoid drugs (a steroid hormone) as well as IVIG and Plasmapheresis (treatments also used in Guillain-Barre) IVIG is a process that involves removing the plasma from your blood and replacing it with new plasma, and Plasmapheresis is a process that involves removing blood from your body and “cleaning” the plasma before putting it back into your body. With IVIG and Plasmapheresis, because of the chronic nature of CIDP, they are only effective for a few weeks and many people require regular treatments every couple months.

Like GBS, the severity of CIDP can range from mild to severe. Some people experience mild weakness which may not even be noticeable to others. Others experience more substantial weakness and require the use of aids (braces, canes, walkers or wheelchairs). And just likle GBS, most people have never heard of CIDP. Most doctors and nurses will never deal with a CIDP case in their entire careers. If left untreated, about 30% of CIDP will progress to wheelchair dependence, so it is extremely important to recognize the signs early on to get the proper treatment.

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What is Guillain-Barre syndrome?

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*Updated version*

I hear that all the time. People will ask me how I got the scar on my neck, or will say they heard that I had a rare disease, and ask what I had. When I tell them I had GBS, not many people will say they know what that is. Guillain-Barre syndrome is not a well-known illness at all. The first time I myself heard the words Guillain-Barre, was when I was being told I might have it. Less than 8 hours before that, I was a healthy 26 year old. It had started with a tingly finger, a pain in my neck and weakness in my legs. By the time I was at the hospital I could barely walk anymore. My neurologist told me they would need to monitor me over the next little while to see how bad I got. No big deal. I was sick, they would give me medicine and I would go home and be fine. That’s what happens at the hospital, right? Wrong. There is NO cure for Guillain-Barre syndrome.

In my book, “Happily Ever After” I told my side of the story, I explained what GBS did to me emotionally and physically over a year. I explained my feelings, my fears, the challenges I faced and the obstacles I overcame. But what I didn’t dive into as much is exactly what Guillain-Barre is. I am by no means a Doctor, but I hope that this blog helps explain it to you all a bit more.

Guillain-Barre syndrome is a disorder affecting the peripheral nervous system (the nerves that are not a part of the spinal cord or brain). GBS is caused by a reaction from the immune system. In a normal attack on our bodies, our immune system immediately starts fighting off an infection (such as a virus or bacteria). With me, my body saw an attack and my immune system started to fight it off. The problem lies within my own immune system. My immune system continued to fight when it should have stopped. It overworked and after fighting what it needed to, it then started to attack my own body. People need to be aware that you don’t catch GBS, and it is not contagious. The disorder lies within me; my immune system reacted incorrectly. Unfortunately it’s impossible to say why one persons’ body reacts this way, when thousands don’t.

So what sort of things can trigger GBS? While it’s impossible to pinpoint, (and doctors will rarely say exactly what it was) I myself have met people whose cases of GBS came on a few weeks after they had the flu, a stomach bug, a virus, during pregnancy, after giving birth and even from stress. It has also came on for others who have had surgery, a flu shot, other vaccines, an epidural, and the Zika Virus. For me, it came on shortly after I gave birth. I had also had a C-section, an epidural and then the flu a week later, so it’s hard to say exactly what it was that triggered my GBS.

As the illness starts to progress, and as the immune system begins to attack the nerves, it starts to damage the myelin sheathe around the nerve (or axon). Basically, the nerve is a wire, and the myelin sheath is the plastic coating around the wire. The nerves are then unable to transmit a signal, which causes the muscles to lose their ability to respond to commands. Essentially, weakness starts to spread throughout your body, slowly paralyzing you.

One of the very first symptoms of GBS is usually tingling and weakness, which typically starts in the hands or feet and works its way inwards. When the doctor first saw me, my arms and legs were very weak, and I no longer had any reflexes, which made him think that I had GBS. A spinal tap was done to drain fluid from my spinal column to check the protein levels, (which are very high with GBS) and it was this procedure that lead to my official diagnosis. I was very lucky that the Neurologist that saw me that night immediately had an idea of what was going on, and knew what test to complete. Unfortunately I have heard hundreds of stories of misdiagnosis, where patients go days or weeks before they finally find out what is going on.

My case ended up being quite severe – the paralysis spread to most of my body, which paralyzed my diaphragm and affected my ability to breathe on my own – so I needed to breathe through a machine for 2 ½ months. However this doesn’t always happen. Only about 30% of GBS cases require mechanical ventilation and need to be in ICU. Some people with minor GBS don’t even require hospitalization – they improve quickly, and recover within weeks. In others cases, the paralysis may be severe but only reaches as far as the waist – and the upper body remains unaffected. Either way, the majority of patients reach their weakest point around 2-3 weeks after their initial symptom- and then slowly start to recover. For me, the paralysis affected my entire body from the neck down and I did not start to recover for over 6 weeks.

Not only did it affect my nerves, it also affected my autonomic nervous system – the part of my body that controls blood pressure, heart rate, body temperature and other body functions. My blood pressure, my heart rate and body temperature were all dangerously high for a very long time which is another reason I was in ICU. Because I was paralyzed, I could not go to the washroom without the help of a catheter and many medications. And because I was hooked up to a machine to breathe, I could not talk or eat. I communicated to my family by mouthing words, and was fed through a tube in my stomach.

When a person is paralyzed in bed with GBS, it is not only physically painful, it is also very emotionally challenging. Some experience such severe pain that can be very difficult to treat. The stress of being bedridden, in pain, having other people completely take care of you, and not knowing if you are ever going to get better, can cause severe anxiety and depression. Many patients believe they are dying, or feel hopeless and wish they would die. Most GBS patients are treated with some form of anxiety medication and anti-depressants.

Although there is no cure, the myelin sheathe around the nerves do start to regrow – as long as the damage is not too severe. In minor GBS cases, re-myelination occurs and recovery is rapid. In more severe cases, the axon within the nerves is damaged and recovery depends on regeneration of the tissue. Usually, specialists say it takes an inch a month for the nerves to regrow. That is why GBS is often called Get Better Slowly. In general, the only thing that will help a patient improve is time. However there are treatments that are provided to try to help speed up recovery. The two most common treatments for GBS are IVIG and Plasmapheresis. IVIG is a process that involves removing the plasma from your blood and replacing it with new plasma (with new antibodies), and Plasmapheresis is a process that involves removing blood from your body and “cleaning” the plasma before putting it back into your body. I had both of these treatments.

The other treatment that almost all GBS patients require is physiotherapy. As the nerves start to come back and as movement is regained, the muscles in the body require intense therapy to strengthen them to a point of use again. The first thing that I had to learn how to do when I started to improve was breathing on my own. I practiced this by spending a few minutes a day off the ventilator and slowly increased it as time went on until I was breathing on my own again. Then it was my hands and arms, followed by my core and torso, then my feet and legs. Full time therapy at a rehab hospital is quite common, (as is being in a wheelchair for some time) and patients need to strengthen their muscles until they can learn how to eat with utensils, how to brush their teeth, how to pick up objects, and other day to day activities. Eventually they may be strong enough to get out of the wheelchair and learn how to walk with a cane, then walk with a walker, and then walk on their own. This timeframe typically span over the course of a few months to a few years. For me, it was about 6 months before I was walking on my own again. I have met those that it took only a week or two, and others who are still learning 7+ years later.

Although a large majority of patients do make an almost complete recovery by two years after onset, there are those that do not. About 20% of patients are left with permanent residuals. Some people are unable to write or type as their fine motor skills never return, and some require walking aids such as braces, canes, walkers and even wheelchairs. Many experience fatigue. I was always told that I would eventually recover, and I am very fortunate that I was able to get back to my life. It absolutely breaks my heart when I meet others that are still affected by GBS years later. I consider myself extremely lucky, and attribute it to my young age at the time of my diagnosis. Thankfully, my residuals are fairly minor.

Because of the fact that it was my own immune system that malfunctioned, many people, including myself, have asked: if it reacted that way in the past, can it react that way again? The answer unfortunately, is yes, there is a chance that it could happen again. But the chance of recurrence is only about 5-10%. However because of that, I have made the personal decision not to get the flu shot or other vaccines that have been linked to GBS. And with it coming on so quickly after I gave birth, I have also decided not to have any more children. Even if the chance of recurrence is extremely low, and there are no guarantees that these things could trigger it again, that risk is just not worth it to me.

Guillain-Barre is quite unknown, but it is not as rare as most people think. It effects about 1-2 in every 100,000 people a year. So in a city the size of Edmonton, Alberta, it would effect on average 10 people a year. Still, most people have never heard of GBS. Some doctors and nurses I had, had never dealt with it before and some of them did not really know how to care for me. My own family doctor has never seen a case of GBS in his whole career. As I mentioned before, many people go undiagnosed for some time because of health care professional’s lack of experience with it. It is very important to recognize the signs early on, and it’s important for our medical staff to know what they are dealing with and how to properly handle it. And I as I continue on in my life now, I can’t help but feel privileged to be able to promote awareness on Guillain-Barre syndrome. And I hope you found this post useful and will share it with others!! ❤

 

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