This video provides a crucial reality check by explaining how atypical symptoms like delirium can hide deadly infections in Parkinson’s patients. It is a vital reminder that for those with compromised nervous systems, the standard signs of illness often do not apply.
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Parkinson's Disease and the paronychia infection that nearly killed meAdded:
The last 3 to four weeks have been the worst experience I've endured with Parkinson's disease since my diagnosis.
It's incredible how much a simple fingernail infection known as a paronyia infection can alter everything about your body. I never considered a near-death experience because of one, but it happened.
Today we're going to work through the last three weeks chronologically once we talk about my brush with death. So anyone who watches this video gets the full story. I feel that my 3 weeks of near torture needs to be seen by anyone with Parkinson's disease or a related illness. You know what people have reminded me over the years that things can always get worse. And thank you to everyone who has taken time out of their precious days to pass on that critical information. Things did get worse. How did you know? I never would have guessed. Hi everyone, it's David and Haley from Life with Parkinson's.
And if you're new here, welcome. We hope you'll consider subscribing. Everyone else, thank you for coming back to watch another episode.
I'm very grateful to have my wife Haley here today to talk about caregiver issues for this video and we'll see you a little bit later on in the video to talk about the infection from a caregiver point of view.
>> All right, sounds good.
>> Nice. How bad could things get? I have no idea how the infection started. For those who don't know, perinia is a skin infection around a fingernail or a toenail. Symptoms include inflammation, swelling, pain, and discomfort. Biting or chewing the nails is a common cause.
I don't do any of that. People may be able to treat mild cases at home. Sounds manageable, right? A finger infection, no big deal. Wrong.
Now, here's something that I found that really needs to get hammered home into my brain. Infections for people with Parkinson's do not follow the same symptom list as someone without Parkinson's disease. The first sign isn't always pain or swelling at the infection site. It's not always something obvious that you'd look at and go, "Okay, something is clearly wrong here." About 6 months ago, I had a urinary tract infection and I thought, "Okay, that taught me what I needed to know." I thought I understood that a sudden decline in cognitive abilities in my body signaling an infection. I had that in my brain. What I did not have in my brain was what it would actually look like when it happened again. When I began experiencing delirium in the middle of the night, neither myself nor my wife thought to look for an infection. Big mistake. I could not remember how to fall asleep, and that was startling. What happened a few days later still has me shaking in my boots.
>> If you had to list three places that you felt safe in your home, I bet that for almost everyone, your couch would make that list. It does for me. But on this day, my couch nearly ended me. This is what happened. If I'm going off and Haley is going shopping, I will normally get set up on the couch for a nap. It usually takes around 45 minutes or so and then I am back on. But this day, it took over two hours to reach an on state. Before she left, as she always does, Haley made sure I had everything I needed, all within reach. Water, pills, phone, and snack. Then she heads out.
After 45 minutes, my daughter called to ask a question over the phone. I sat out quickly and did not feel right as I ended the call as quickly as I could and went over my options. As the room began to swirl, I took a second round of L-dopa and tried to get back into position to lie down. I couldn't. My body began to panic. My dopamine highway was closing. My body was shutting down.
I needed to get horizontal as I was barely holding myself upright. Symptoms began to spike and my full body tremor showed itself. There was nothing I could do except let myself fall back awkwardly into the couch and wait for the meds to kick in. All I could do now was wait. I decided to call Haley, but now the phone was out of reach and was not set up for voice calls unless unlocked. I could barely move and I was very uncomfortable as I was slumped over. So, it was difficult to breathe. I knew that if my brain is cut off from meds for more than two hours or is too stressed for too long that a stony attack will happen.
After about 30 minutes, I could feel the early signs of it. I also needed to pee.
15 minutes later, I peed on the couch.
As I continued to wait in my urine puddle, I realized I was not telepathic.
Haley was not getting my mental messages to come home. I began to feel that I was not going to get out of this alive. I made peace with what was about to happen. A major zonia attack that would be fatal. Part of that attack is that my airway tightens and constricts and I often need help from Haley to open it up again. I knew that I was about to suffocate and die from complications related to Parkinson's.
I made my peace with God and my thumbs bent over as my airway closed and I felt the meds begin to work at exactly that moment. Just a glimmer, just enough that I was able to reach my phone, haul it over to me without dropping it, and call Haley, who was actually 90 seconds away.
Thank you, God.
It took a few hours that day to recover, and I cried a lot. I just could not believe I nearly died on my couch alone.
I could already see the news headline, "Man killed my couch. Safety of living room furniture to be investigated."
We begin to look at what happened and it takes us back to the beginning of this adventure.
I just want to mention an important detail. If we had access to the Ambreia inhaler in Canada or to another rescue medication, this would not have happened. For the love of me, I don't know why one isn't available.
I still don't know how my fingernail became infected. So, we're not even going to guess. Let's get back to what happened next and looked at our first clue that things were about to get difficult. About 2 to three days after my finger began to hurt and become infected, I I experienced a couple of episodes of delirium during the middle of the night. I forgot how to fall asleep one night and then the next night I peed the bed and didn't even wake up.
My self-esteem took some pretty big hits from all this. So, here's what delirium from an infection looks like when you have Parkinson's.
And I want to be really clear about this because I think it is one of the most important things I can share with you.
It's not like you wake up a little foggy. It's not just confusion for me.
My brain basically stopped working the way it's supposed to. I could not tell what was real. I couldn't communicate properly. Haley was watching me and I was not there. Like the person she knows was just gone. And because I had Parkinson's, the infection amplified every single symptom I already have. My stiffness got worse. My motor function got worse. My ability to think, to process gone, and we didn't know why. I lost all of my strength. I was born a baby again. At times, I was unable to even lift my hands. They were just too heavy.
The infection somehow alters your brain chemistry. And the research actually backs this up. When your body is fighting an infection, it releases something called inflammatory cytoines.
You're going to ask, Dave, what the heck is a cytoine? Basically, they're like little alarm signals your immune system fires off when something is wrong. And in a person without Parkinson's, those signals do their job and your body fights and you recover.
But for us, for people with Parkinson's, the brain is already operating with a reduced dopamine and a compromised nervous system. Those same inflammatory signals can cross into the brain and cause real neurological chaos. And that's not me being dramatic. That's the actual mechanism. I was in the middle of that chaos without knowing what was causing it. Hilly was on the outside looking in wondering what the heck was going on with her husband. Why was he having so many problems with this infection?
So, let's talk about the actual why. Why does a simple infection hit people with Parkinson's so much harder than it hits everyone else? Number one, and this is the big one, cognitive decline and delirium are often the first signs of an infection in people with Parkinson's.
Not a fever, not pain at the infection site. The brain goes first. For me, with this paronyia, I had a swollen, painful finger. That was real. But what we didn't connect was that the delirium I was experiencing at night was directly related to the finger. Directly related.
It felt like two completely different separate things, but it wasn't. Number two, Parkinson's can blunt your immune response. Some research suggests that the same neurological changes affecting our movement and cognition also affect how our immune system functions. So the normal signals that tell your body, hey, this is serious. Fire everything might be quieter might be quieter for us. The usual red flags just don't show up the same way. Number three, the medication situation. I've been on leave it open for 9 years now. When I'm sick and I can't eat properly, maintaining my medication schedule becomes incredibly difficult. And when the meds are off schedule, everything else goes off schedule with them. It's like pulling out a card from a house of cards. And number four, recovery takes way longer.
A person without Parkinson's might shake off an infection in a muhik. What are we so lucky? For us, the neurological disruption lingers well after the infection itself is treated. The bad news continues. And before we hit the next point, I just want to repeat my gratitude to all the people who let me know ahead of time that things can always get worse. I feel so much better knowing that. Thank you. A realistic evidence-based answer is this. For someone with Parkinson's, a full recovery from an infection can take weeks to several months, even after the infection itself is gone. And in some cases, certain symptoms never fully return to pre-infection baseline. The biggest wild card is post-infection fatigue. In Parkinson's disease, postinfection fatigue can be crushing, persistent, and disproportionate to the infection. It can be triggered by even small amounts small amounts of exertion.
And it's worse in the afternoon or evening. Oh yeah, I totally agree with that. And it can last months, especially after urine tract infections. What does full recovery actually mean for us?
Motor symptoms return to baseline. Off periods stabilized. Cognitive clarity returns. Energy levels normalize. No lingering inflammation or immune activation. For many people this it for many people this takes 8 to 16 weeks after the infection is gone. For some especially after a UTI it can take four to six months. Wow. And for a smaller group the infection becomes a permanent step down in baseline function.
things can go really really sideways and go the wrong way. Also, the antibiotics did a lot of damage. On April 12th, in the late afternoon, my finger hurt so badly that I knew I needed medical attention. We called our daughter Felicia and she drove me and Haley to the hospital. When the on call drained my finger, which was the moment we knew it was actually infected, the ride home was when I realized in my heart that there was going to be another problem.
The antibiotics they gave me at the hospital caused my body distress. I had a jaw attack on the drive home and barely made it home before my airway closed. What I discovered is that regular penicellin, even though I needed it, put me in a severe off state that I would sit on the couch with Haley and be unable to stop crying. Also, I had trouble just sitting on the couch at all as I did not have the energy to hold myself up. Hilly described it as just being a giant bag of water. The penicellin was so bad that I had to stop taking it after 3 and 1/2 days and my family doctor put me on toxicycling highlight for another 7 days which was tolerable but still draining. The antibiotics just seemed to take everything out of me. Why do antibiotics hit people with Parkinson's so hard?
Short version because Parkinson's disease changes how your gut, nervous system, and medications interact. Medab and antibiotics hit all three at once.
For many people with Parkinson's disease, that combination is brutal.
Here's the deeper practical breakdown, and this part should be watched with your caregiver, as my wife Haley will be on the video soon.
Point one, your gut is already compromised, and antibiotics amplify that instability. Parkinson's disease affects the entic nervous system years before mo motor years before motor symptoms. That means slower gastric emptying, altered motility, and a more fragile gut lining and a microbiome that's already less diverse. Antibiotics wipe out huge sections of gut bacteria in hours. For someone without Parkinson's disease, that's a disruption. For someone with, it's like pulling out the loadbearing wall of a house. Point two, antibiotics can interfere with leodoba absorption. This is the part that most people never get told. When antibiotics kill off the bacteria that normally help break down our food and regulate our pH, leodoba absorption becomes unpredictable.
That can be more off time, more disanesia. Yep. Sudden fatigue. Oh my goodness. And feeling washed out. Point number three, inflammation spikes during antibiotic treatment. Antibiotics don't just kill bacteria, they trigger an immune response. In Parkinson's disease, the nervous system is already more vulnerable to inflammation that can lead to brain fog, worsen tremor, mood dips, yep, and energy collapse. And point number four, some antibiotics directly affect the brain. A few classes can cross the bloodb brain barrier and cause anxiety, insomnia, dizziness, and tremor worsening. People with Parkinson's disease are more people with PD are more sensitive to these effects because dopamine pathways are already stressed.
For someone else, antibiotics are a bump in the road. For me, they're a systemwide destabilizer and oh my goodness, they are so hard on my body. Anyway, sweetheart, thank you for being on the video today and not a problem.
Why don't you talk about a little bit about what you felt during this perimeia infection? What did you feel? What did you experience? What would you like to talk to people about?
>> It it was really really hard and I didn't realize it would be that hard to take care of him afterwards cuz he was a like a very infant baby. He just couldn't hold up anything like bottle water bottles or whatever. So he be he did convert to being a baby.
>> So that was a lot on me myself.
>> You're talking about I was calling you a lot in the night for help.
>> A lot.
>> Mhm. So, you didn't have any time to rest on your own or charge or >> then I didn't even have some time to go pee or anything cuz I was back up again and it was I couldn't sleep anyhow. I think I lost like 2 days no sleep. Two to three nights still asleep cuz it's not worth it.
>> Mhm.
>> Cuz you know you're going to go back in there.
>> So, it's not worth going to sleep at all. And with my indoor, I wasn't able to have if I had a flare up, I didn't get chance to lie down or anything like that. So that was hard. Very hard. But I could understand why he couldn't pick very aggravating baby because I he couldn't pick a bottle and I didn't understand or a water bottle. I mean, >> understand why he can't like put the pills in his mouth.
>> Mhm.
>> Or he was floppy like he don't have something muscles. So you just after I was doing something for him, he just flopped. And I'm think where you going?
Like there's nowhere else to go.
>> Mhm. Okay. So your worst part it sounds like. Okay. Okay. So from what you're saying is that you were having a hard time understanding why.
>> Yeah. Why? It's a finger.
>> Why? How could a fingernail infection?
>> They didn't even remember doing it, >> right? It's >> Oh, it's a finger like that.
>> Like, how could a fingernail infection do all that?
>> Yeah. The fittings are like >> Get over it.
>> Yeah. When the urinary tract infection wasn't that bad.
>> Well, I knew what to do on that. That isn't that bad. living.
>> Mhm.
>> But this was very very different for UTI.
>> No. No. This one was very draining for me personally.
>> Very draining. I hate eating grocery with him. It's not his fault.
>> Mhm.
>> So I had to get someone or I went out or a couple times I couldn't even leave the house.
>> Mhm.
>> Yeah. It was like a baby cuz he had no stomach muscles and he couldn't hold his hand heads up or his hands up when he was trying to do his food or >> Mhm. What would you say to other caregivers out there?
>> When you feel you're in frustration, walk out of the room.
You can't get mad. You can't do you can't get to them or anything. You can't do anything about it.
So, just walk out of the room, get some fresh air for a few minutes, and then you're able to go back again.
>> Mhm.
>> So, get people in your family or just to sit with him.
Anything.
>> Mhm.
>> Just amuse them for a little bit. You really do need that few minutes.
>> Mhm.
>> You really do. Oh, and after when they were actually getting better, my flare came. Mhm.
>> Yeah, I do. I did miss my indo flur out days. I didn't have chance to do those at all.
>> Mhm.
>> So, but it's still Dave, you can't control it. It was scary. I have to say it was scary. I thought I was going to lose Dave cuz he looked not up at all.
>> Mhm.
>> He looked like on death doors. So I I actually got him to talk to me about stuff. You need to talk to him about the stuff that they need to talk about.
Yeah. I heard you but that >> like talk about what happened.
>> Yeah. Like talk about like how he feels and >> well it was very scary and I was terrified. And I was like, you know, I felt as it was happening, I felt very bad because I'm like, he's going to potentially come home and find me dead on the couch and I don't want that to happen.
>> No. Exactly.
>> I don't want to do that to her. Not, you know, out of my control. But I definitely did not want that to happen.
>> No. No. Definitely. And and that's what made it so difficult and so hard to come to terms with is because I had no control over it.
>> Do you know do you feel that if you're do you feel open that you can talk to me about certain things?
>> Oh, absolutely.
>> Yeah.
>> Uhhuh. Well, it's it the Parkinson's is so debilitating and the fingernail infection just hits every part of my defense system and just knocks it all out.
>> So, you feel you can talk to your person talk about it?
>> Well, afterwards, yes.
>> Yeah, that's what I mean. Yeah, I needed to talk about and this is one of the reasons why we're doing this video is it helps other people out there, but it also gets it off my shoulders and my chest so it's not weighing me down.
>> Yeah.
>> I think this opportunity is good for you as well to get things off the chest and talk to people and encourage them a little bit that hey, you know, don't feel bad about missing the infection. I missed it too.
>> Not your finger. Mhm.
>> The doctors did not say he's going to chop his finger off. Far from it.
>> No, they just said the fingernail might fall off.
>> Yes.
>> It didn't. It's grown back. Everything's good.
Like you said, you felt overworked a little bit.
>> Overworked and unappreciated, but not. You always said thank you and all that >> and it will get better tomorrow. I'm like, I don't want to hear tomorrow. I can't get through this one hour. Why do I want to take my tomorrow?
>> Well, and it's extra hard on you cuz you're balancing the fingernail infection with your indometriosis pain.
>> Yeah.
And now you're rested up and I am so tired.
>> Mhm.
>> My honest hand hurts and my feet hurts cuz it's rolling a little bit. So it's been overused though.
>> Mhm. Oh yeah. Yeah. You definitely got overworked.
>> But you got to go out.
>> Yeah. You definitely need time for yourself. And I've tried to give you that.
>> Yeah.
>> Yeah. And having experienced that for the first time now. Parkinson's disease.
It's very shocking when it happens.
>> Yes. I never understood about the conditions. You died from the conditions.
>> Mhm. From complications.
>> Parkinson's.
>> Yeah. From complications.
>> Yes. Thank you.
Well, yeah. And the antibiotics just kicked the medication out.
>> Yeah, the first one really kicked your ass.
>> Yeah, the penicellin was brutal.
>> Yeah, >> it must be an allergy cuz it was so severe. My reaction >> cuz our daughter was allergic to penicellin and penicellin.
>> Yeah, >> we think it was that kind of allergy, but we're not sure because you never know what's down.
>> Allergies.
>> Mhm. Okay, baby. Thank you for your thoughts and for coming on the video to talk about this and like um talk about this.
>> Yeah.
>> Yeah. I think that's good. Thank you.
>> You're welcome.
>> Thank you very much.
>> Okay. So, what can we actually do about this? Because I know some of you are watching this and you're worried and I don't want to send you away with just the scary stuff. First, and I cannot say this enough, establish with your caregiver, your partner, your family member, whoever is with you that sudden cognitive changes or delirium are a medical emergency, not just a bad Parkinson's day, a signal that something else might be going on. Haley and I have talked about this specifically. Now, if I start showing these signs, confusion, delirium, not being present, the first question she asks is, "Is there any type of infection anywhere?" We check every time from now on. Second, if you live alone, please tell someone you trust about this. A neighbor, a family member, a friend, someone who can check in because the scary reality is that when the delirium hits, you may not be when the delirium hits, you may not be able to advocate for yourself. Third, if you have any kind of wound, skin issue, or area of concern, get it looked at early.
Don't wait. I know that with Parkinson's disease, we normalize discomfort because we're already dealing with so much. But a small infection for us is not a small infection. And fourth, if you go to a doctor or the emergency room and they don't seem to understand why a finger infection caused this level of psychological disruption, push back.
Advocate for yourself or have your caregiver advocate for you. The connection between infection and Parkinson symptoms is real.
It's documented and you deserve a doctor who takes it seriously.
The last 3 to four weeks have felt like a bad horror movie. I'm still not back to where I was before all of this started, but I'm getting there. And honestly, if sharing this experience means that even one of you catches an infection early or one caregiver recognizes the signs a little quicker, then that month wasn't wasted. It was just redirected.
An infection should be taken seriously.
They can do a lot of harm and linger long after they have cleared up. I firmly believe that every one of you is doing the best you can with the circumstances you are in. I hope you never forget that. If you have enjoyed this content and want to see more, then please consider becoming a member of the channel and supporting us each month financially just a little bit. We are in the process of building out our website lifewithparkinsons.ca CA into a lived experience Parkinson's disease resource.
We hope you can be part of that. Thank you again for taking this journey together. I'll see you on the next one.
Have a good day. Goodbye.
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