In this episode of the Brain & Life podcast co-host Dr. Katy Peters answers your questions. She discusses managing the holidays with a neurologic condition, how weather can affect your brain, self-advocacy, and more. Thank you for submitting your questions and sharing your comments about the Brain & Life Podcast!

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Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa

Dr. Peters:
And I am Dr. Katie Peters, and this is the Brain & Life podcast. Happy holidays listeners. This is Dr. Katie Peters from the Brain & Life podcast. My colleague Dr. Daniel Correa is off celebrating and relaxing for the holidays, and I hope you're doing the same. For today's episode I'm really excited because we're going to get an opportunity to go over some of our listeners' questions. These are always so much fun because we love hearing from you, and we also have a survey which I'll talk about later on that you can go on and fill out because again, we want your opinion so we can continue to improve this podcast and also improve Brain & Life Magazine. So let's get started with the questions, and I think this is really appropriate.
It's from Claude R., he said, "I'm really getting overwhelmed and stressed out trying to plan my holiday season. I want to see family, cook meals and do everything I always have, but my health has declined a lot with ALS since last year. It's so frustrating. What do I do?" Well, Claude, I know the holidays can be so much stress and I really appreciate you sharing your question. If you actually head to the brainandlife.org website, you can search for articles on this very topic and I actually pulled up one from December, 2016, January, 2017, issue on the 11 ways to de-stress the holidays. So let's go. What are those 11 ways?
First, you want to adjust your expectations. The holidays do not have to be exactly what they were before the diagnosis. You want to be open to doing less and modifying traditions and also delegating more. It will save your energy for quality time with family and friends. Also, it's a good idea to use your smartphone. You can actually keep a checklist and after writing down everything that you think you have to do, look at it again and maybe skip a few of those tasks. You don't have to go to every party, you don't have to call every person.
Maybe just try to simplify and you can also get two free applications that we talked about in the article called the To-Do List at any.do. Next, and this is a big favorite for me, is you can order your gifts online. Now, I know that everybody likes to go out there and go shopping and maybe you've already done your shopping, maybe you want to go now, it's after the Christmas holiday, you want to go out and do more shopping but shopping online is really helpful, especially if people have issues with noise or crowds or maybe you feel like you're just so tired or you're weak, you can't really navigate those stores or the mall.
Often it's just hard also finding a parking spot and if you're somebody who maybe has some mobility issues, it may be hard for you to find a parking spot that's close enough that you can feel safe getting into the stores. So order online, also check out when you can order certain places online, if they'll also wrap and mail the gifts, this can help you out. And next is simplifying recipes. I'm also going to add onto that, is that yes, if you like to cook and you want to do the full Feast of the Seven Fishes, or maybe you're now planning your New Year's Eve party and it's going to be a huge hors d'oeuvre party, maybe think about carrying down the recipes, maybe ordering some from a local restaurant because they definitely need your business during the holidays or also consider a potluck or a themed dinner where everybody has to bring something.
Also look into food hacks. I recently made a hot dish that had a food hacks on it where I put little frozen tater tots on top and I will tell you, it was a really good dish. It was a really good hot dish. So think about some easy recipe makeovers. And next is, you might want to add a little bit more spice to your cooking and this is because when we have neurology disorders, sometimes we can have alterations in taste and smell and so maybe you want to try a few more different spices if you're having problems with those symptoms such as taste and smell and this is actually a really interesting book that was found called Navigating Smell and Taste Disorders. It's a book at the American Academy of Neurology's Neurology Now book series. You should definitely check it out and I'm a big fan of spicing it up.
Actually one of my favorite, if you're going to do a little online shopping and you want to look at the spices, I would say Stonehouse Oil Company out of San Francisco, it's a gem, it's a gem. Great spice ones, and they're really good at delivering and have really great packaging that could turn into an easy present. Next is, you don't have to drive yourself to all those parties. You can consider using one of the drive share services such as Uber or Lyft. Those are very easy to just schedule on your smartphone. If you haven't done it already, I think they're very helpful and I use them myself. Next is, you want to pace yourself. This is so important. During the holidays, I also happen to be moving to my new home and I will tell you, it was really hard because there was a move and then also handling everything for the holidays.
Sometimes you've just got to take a little break and give yourself a little bit of grace and know that you may be running lower on energy. So don't feel bad for taking a break. Never forget also to take your medicines. Sometimes when we're at parties or dinners, maybe we're traveling far away from home, you want to take your medicines and don't delay them or miss them. I like to have a fancy little container that I have for my pills. It makes it a lot easier so I can remember it, plus it's a little fancy, so it's something that I love to pack away. And also this is a great time if you do know somebody who also is dealing with the same issue that you are such as ALS, you can think about support groups. A lot of them will be having holiday parties, they may have virtual parties or virtual get togethers. This is definitely a place where you can find support.
And next is, let's think about the holidays. The holidays are really about the end of the year and thinking about all the people that have helped us all year long and this is when it's really nice just to say, "Happy holidays." To say, "Thank you." To everyone around us. And I want to say, when I do that, it makes me smile and it puts me in a very good mood and it puts others in a good mood. So happy holidays and definitely happy holidays for Claude for this great question.
So our next question is from Mary B., "I work as a cognitive behavioral therapist with people that have traumatic brain injuries. My clients often have multiple conditions including strokes, dementia, tumors, et cetera, that may be behind their brain injury along with falls and accidents. One thing I've noticed is pain migrates, repetitive actions are affected by weather. There is almost no data from the US, UK, or anywhere else on seasonal changes to mood. There is nothing on weather affecting emotions on TBI, especially to the extent of repetition. I feel this is completely missed and would love information."
Well, Mary, first of all, kudos to you for what you do with our shared patients with traumatic brain injury. I too have seen how seasonal changes can affect our patient population and we actually did have a really awesome article in Brain & Life on this very topic and the title of it, Weather Can Intensify Neurologic Symptoms, and there's even new grants that are being put out to see how climate change is actually impacting neurologic conditions in our patients. So weather can significantly impact people with neurologic conditions. It can worsen symptoms and affect overall health for patients with peripheral neuropathy, which can occur for many variants of reasons, including one that I see, which is chemotherapy-induced peripheral neuropathy.
One can notice increased symptoms with more numbness, more pain, more mobility challenges in that cold weather and also before storms due to a drop in barometric pressure. And patients with migraines can have a severe migraine trigger just by barometric pressure changes and they can even require even more medications and even more rest. And on the flip side, if we think about those colder temperatures and then we think about heat, this is something I see very commonly in my own brain tumor patients and also patients that Dr. Correa treats in his seizure patients. They can have more challenges when it gets hotter.
So that heat actually poses particular challenges to patients with those conditions and also conditions such as dementia, Alzheimer's, and pretty classically multiple sclerosis. So high temperatures can exacerbate brain fog cause cognitive issues and MS symptoms like weakness and visual disturbance can actually come out when patients are heated up.
In fact, I had a patient that would have a seizure every time she took her favorite hot shower. So we had to teach her to take a little bit cooler showers because of those heat-related symptoms. And weather patterns are linked to climate change and this can worsen neurologic conditions because it's going to promote the spread of diseases like Lyme disease, West Nile, Japanese encephalitis virus, and it does seem that there's some suggestion that maybe Parkinson's and dementia may have an increase due to climate change. So definitely talk to your neurologist about this. I think this is an area that's going to be studied and again, Mary, thank you, thank you, thank you for all that you do for our shared patients that have traumatic brain injury. I hope you have a great holiday season. Oh my gosh, we've got more questions. So another great question comes from Andrea G.
"I am 47 years old, I was diagnosed with cervical dystonia eight years ago and early Parkinson's last year. I'm fighting very hard to be my own advocate, but it's getting harder and harder, especially when it comes to getting to appointments. We have private healthcare insurance from my husband's work, however, the cost of treatment is getting more and more costly. I'm reaching out to ask for resources. I'm hoping you can help."
Well, Andrea, thank you for your question and first of all, I encourage you to stay strong, and kudos for being your own advocate. You've got to keep on loving yourself because it is really hard and one of the things that I will suggest right off the bat is remember when you go to see your physician or your neurologic provider's office, ask them if they have a social worker that is affiliated with that group because often you could find stuff at the local level at your own provider's office that they'd be willing to give to you. Next, I would recommend, consider joining a support group and there's some great dystonia support groups. I actually found one at the Dystonia Medical Research Foundation at dystonia-foundation.org/living-dystonia/, they have links to finding support groups that could be in your area and if it's relating to Parkinson's disease, check out the michaeljfox.org.
Michael J. Fox is a famous actor, he's had Parkinson's for years, but they have this really unique part of their website. It's called the Parkinson's 360, and it highlights how each Parkinson's patient has their own unique symptoms and their own unique journey and I believe we had two Parkinson's experts, one Dr. Jori Fleisher and one Dr. Katie Moore, and they said the same exact thing, is that, "If you look in a waiting room of Parkinson's patients, it's all different symptoms and all different journeys." And what I like about this 360 tool is it's really a set of resources that you can sort of cherry-pick based on your symptoms and your condition. And if you need a little bit more inspiration, one of my favorite podcasts, actually all my podcasts are my favorite, but one of my favorites was one on Parkinson's disease with acclaimed actor Ed Begley Jr and he was so great, so empowering.
Check it out. I hope it makes you feel a little better and a little brighter, and also our expert, Dr. Jori Fleisher has so much good information there. So for our final question of the day, it comes from Sharon M. It may be the last, but it's not the least. So thank you Sharon for your question, and here it is. "I'm hoping to learn more about arteriovenous malformation and how I can help care for someone who is suffering from that in the best ways possible." First of all, Sharon, thank you for being a caregiver and thank you for that question. So arteriovenous malformation, also known as an AVM is an abnormal tangle of blood vessels that causes problems with the connections between arteries and veins. So you can imagine it's almost like the highways that are supposed to be going one direction and they go the other direction get mixed up and they're going in the same direction and they shouldn't be.
AVMs are most often occurring in the spinal cord and in the brain, but really they can develop anywhere in the body. But of course, being Brain & Life, we're worried about what happens when someone has it in their brain. So normally those arteries carry oxygen-rich blood away from the heart and the body cells and organs and tissues and the veins return that less oxygenated blood to the lungs and the heart, but in AVM, they don't have any capillaries, which are the really small blood vessels that make those connections, because there's no connection there, it sort of mixes up essentially the blood that is passing from the arteries and veins and the missing tissue really needs that oxygenated blood, especially in the brain and in the spinal cord. So this can lead to tissue damage and death of nerve cells.
Over time these AVMs, while some of them can just stay the same size, some of them can get really large because the amount of blood flow can actually increase to them. So most people will be fine and they'll just have the AVM and it's something that is found incidentally but sometimes an AVM can burst and that can lead to a stroke, which leads to focal neurologic symptoms. Treatment for AVMs really depend on the location and the symptoms and how the patient's doing, but symptoms can include a lot of the neurologic symptoms that our patients have, including seizures, headache, pain, visual problems, focal neurologic deficits, and also issues with thinking. Now, we did have a guest, Drake White. He is a country singer that had a hemorrhagic stroke due to an AVM and he talked a lot about his condition and one thing he did talk about was also his family and the caregiver experience.
So I think if you check out that episode, I think you're going to learn a lot, and we also learned a lot about his experience and his recovery, and I just wish Drake well and hope that he continues on his recovery journey. We also heard from a neurosurgeon, Dr. Aliza LaRoti from [inaudible 00:16:43] Woods at Duke that went into, how do we treat these AVMs? So I hope that helped out with that question, Sharon, and continue being an awesome caregiver.
So thank you so much to our listeners for all you do for us all year. Thank you for your questions. Thank you for listening to our podcast. I want to say check out our show notes for a link to the listener survey, the link is brainandlife.org/survey. If you participate with this, you have a chance to win a drawing for a one of five $100 Amazon gift cards, and that could be a great idea to also pass along to family and friends. And I just want to say thank you to all, happy holidays and have fun listening to the podcast.

Dr. Correa:
Thank you again for joining us today on the Brain & Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life Magazine for free at brainandlife.org.

Dr. Peters:
Also for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at (612) 928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain & Life Magazine on any of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at Neuro Dr. Correa.

Dr. Peters:
And Dr. Katie Peters joining you from Durham, North Carolina and online at Katie Peters, MD, PhD.

Dr. Correa:
Most importantly, we thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life podcast. See you next week

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