Ep. 11 Parkinson's Medications and Walking Problems

The medication I take for Parkinson's disease makes walking more than a few steps almost impossible. I demonstrate my "on" and "off" states in this video.
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[@stevenb9844]

Hi, I'm 52 and just been diagnosed with Parkinson's disease. Wow what a headache fuk, I've also got fractures in t7t8t9 and the pain is getting worse. I'm trying so hard to come to terms with the diagnosis. So much to learn and try to understand. How many years have I left etc. Yea I tell people that I have PD and they look at me as I'm a freak. I have lots of bad days where I wish I never woke up, yesterday I was able to do the lawns, go into town after my new doctor appointment. I changed doctor because he was in denial that I have PD. I get sad and frustrated a lot of the time. Today is a bad day, very sore back and feel shithouse. Enough for now as I can't see the letters to type on my phone. Cheers from nsw Australia 🤟🤟

[@JeremyMcdonald]

Thx for watching! I can totally relate. Some days I feel like Superman and then am quickly reminded by PD that I'm not!

[@therealkathleenkiddo]

I can relate to all of these comments and Jeremy your video is super helpful to show the complexities of pd. Most think that the meds make everything’s OK but that could not be further from the truth. We are impossible dependent upon the very thing that causes a different kind of degeneration. Dopamine is tricky!

[@inezzbeadz]

Thankyou for sharing this. I have a funky gate myself. Freaking tiered after shopping, got people opening doors for me though! Nobody got our unique moves baby ❤ you!!

[@JeremyMcdonald]

People have no idea what's going on, do they? Until I was diagnosed, I didn't realize that PD caused such dramatic walking issues. Thx, Inez!

[@patrogers6297]

Wow! I have the pill rolling tremor in my right thumb so my doc just sent in a referral to neuro. I’m beginning the journey. I’ve been fatigued for 5 years, and have difficulty walking, hand coordination, and loss of balance. Your videos are helpful while I wait for my exams. I know how hard it is for you but thank you for talking about your journey.

[@JeremyMcdonald]

Talking about it actually helps, think.

[@GoProGoalieUzi]

Thx for sharing buddy! You are doing excellent, keep it up and battle on. Go Oilers Go 😆😆❤️

[@JeremyMcdonald]

Thx for watching, dude! Go Blues!

[@toryberch]

Jeremy are you just taking Carbo levo? This was very helpful to see. I'm still trying to understand Parkinson's but your going up and down the stairs was pretty good But your after affects is something I've never seen in any videos I've watched.

[@JeremyMcdonald]

Yeah, just Sinemet. My movement disorder specialist and I have tried everything but DBS which I'm not ready for.

[@toryberch]

@@JeremyMcdonald oh ok. From what I've read or seen videos on for dbs it's not a long term fix but it is to help improve the quality of life. I know that's a scary surgery for many to consider. I've been in chronic pain for 15 yrs now For me personally if I knew I could get a good decade of better living I'd be let's go lol I'm 57 and feel like 87 🤪

[@gandhithirugnanam7397]

I have something similar. I just started sinemet. When I'm off I move great ( considering the PD) and when I'm on my left leg won't bend to walk properly. It doesn't matter the dosage of the pill. Your video helps knowing Im not the only one going through this

[@JeremyMcdonald]

I definitely have a love/hate relationship of sorts with Sinemet. I’m sorry to hear that you are having trouble as well. Thx for watching!

[@LouAbbott4]

@@JeremyMcdonald and Ghandi, I don't get it. So why do we take the stuff?

[@LouAbbott4]

Never mind. I just saw your answer in you Jan 8th video.

[@JeremyMcdonald]

@@LouAbbott4 Thanks for watching!

[@LouAbbott4]

Thanks for sharing

[@klauskarpfen9039]

Thanks for sharing this, Jeremy! From browsing through the comments I've learned that your medication is Levodopa (+ decarboxylase inhibitor? -sorry, I am not that familiar with all this jargon and US brand names...) alone-? Hard to belive for me, that dose doesn't matter. You'd assume, there is always a minimal dose for a certain effect. Are the positive effects from a quarter tablet just as pronounced as from a full tablet? Or is it just the side effects that are equally strong?

[@JeremyMcdonald]

Positive and negative effects are the same at half a tablet. A quarter tablet is not enough. My MDS says I have both dyskinesia and dystonia as a side effect of l-dopa. A very small percentage of people have this problem.

[@SDWP]

I really hope someone figures this out. I'm sorry you're dealing with this. I'm gonna look around on the internet and see if I find similar cases. BTW, cool rifle over the fireplace!

[@JeremyMcdonald]

Ha! The rifle is a toy! But seriously, thank you.😀

[@SDWP]

@@JeremyMcdonald I should have known!

[@toryberch]

Your going back up the stairs after your med dose is how I normally feel. That stiffness and heavy footed feeling.

[@JeremyMcdonald]

You can see now why I wait until noon to take my meds!

[@toryberch]

@@JeremyMcdonald is that just from carbodopa levodopa?

[@JeremyMcdonald]

@@toryberch Yep! It worked fine for the first year or two, but after that I had to quit my job because of it.

[@toryberch]

@@JeremyMcdonald Jeremy I hope you don't mind all my inquiries I am a person who wants to know head on what might or not happen in the times ahead. Is it OK to keep asking? I don't want to be a pain in the tookus lol

[@JeremyMcdonald]

@@toryberch Ask away! I'm just happy to help!

[@joec2174]

Fractured my right shoulder in three spots from a med induced fall

[@JeremyMcdonald]

Yikes! That’s what I worry about too!

[@SDWP]

Have you heard of Tardive dyskinesia and Tardive dystonia? I think it sounds like Tardive dyskinesia since it's focused on your lower body. This definition I found on Tardive Dystonia sounds similar too...but I think it might be more focused on upper body. Tardive dystonia is a neurological movement disorder characterized by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements. It is a side effect of taking certain medication to treat other conditions. There are several neurological movement disorders that result as side effects from medication. As a group, these are called tardive dyskinesias, and include facial tics and irregular, dance-like movements called choreas. Tardive dystonia is one type of tardive dyskinesia in which the involuntary movements tend to be slower and writhing. In most cases, individuals will have an acute dystonic reaction / acute dystonia, where the symptoms tend to be acute but short-lived. Most of these acute reactions can be successfully treated with injectable anticholinergic medication which will usually end the episode. Tardive dystonia is a more taxing condition as it can be permanent. Occasionally, symptoms do disappear but unfortunately this is rare (around 1 in 10 cases). Research suggests that, if the medication causing the tardive dystonia has been taken for only a short period of time, remission of symptoms is more likely than if the medication has been taken for a longer period. dystonia.org.uk

[@JeremyMcdonald]

Yep! This is what my MDS says. Unfortunately, there isn't much left to do but DBS, and I don't even know if that is an answer.

[@SDWP]

@@JeremyMcdonald 😢

[@stevenb9844]

I have the same tremors in right arm especially the hand, after I take my meds it settles down. It's that bad I can't hold a coffee cup or roll a smoke. Cheers from nsw Australia

[@JeremyMcdonald]

The meds are effective for my tremor as well. Cheers from Missouri, USA!

[@coleclan]

Just stumbled on your video and my walking style is very similar. My current thinking is that it’s diphasic dyskinesia, as when my meds are fully working I’m fine, it’s just that kicking in and wearing off stage. Just wondered how you are a year on?

[@JeremyMcdonald]

I was diagnosed Jan. 2013.

[@coleclan]

October 2014 for me. Is your walking any better?

[@JeremyMcdonald]

@@coleclan I can only stagger around when I take Sinemet. I am much more stable when “off”.

[@adawehi55]

Just now seeing this video. My situation is the opposite. I can’t walk unassisted unless I take carbadopa-levodopa. I have a lot of vertigo and drop in blood pressure due to the pills. I have internal tremors. Feels like a motor running inside my legs-mostly. Muscle cramps, spasms, and pain. Rigidity. Stiff muscles.

[@JeremyMcdonald]

Sounds just as bad as my situation. Thx for sharing!

[@LifewithParkinsons]

Hi Jeremy. You seem to do better without the meds.

[@JeremyMcdonald]

I need it for mental clarity, however ther are times I get really frustrated by the side effects of L-dopa. If I don't take it, I am in a lot of pain and depressed.

[@LifewithParkinsons]

@@JeremyMcdonald That’s a tough battle to fight daily. I don’t blame you for being frustrated. I had no idea meds could affect someone so badly.

[@JeremyMcdonald]

@@LifewithParkinsons Thx for watching! I am looking forward to our project!

[@LifewithParkinsons]

@@JeremyMcdonald me too

[@ParkinsonsWigglesProject]

I’m amazed and like David think it looks like you walk better without the meds. But I totally get why you take it, and only you know what makes you feel best. I couldn’t walk without it!

[@donsemi6946]

It has great similarity to me. I cannot walk. I continue to freeze. Cannot walk. 6 months I got along w a cane, now, nothing. Cannot find answers. Looking still Thanks

[@JeremyMcdonald]

It’s so frustrating, isn’t it? Thx for watching!

[@ricksuvanto5009]

What does your MDS say about this? Or do you just see a neurologist?

[@JeremyMcdonald]

My MDS says that it is severe dyskenisis in my legs with a bit of dystonia. I've tried everything but DBS.

[@therealkathleenkiddo]

DBS stole my ability to move about in much the same ways only I’m more stiff and frozen instead of dyskinetic… Some doctors are not doing their job something is wrong here let’s chat as soon as possible ! Jen S can give you my number I have some thoughts about your situation that I’m hoping are helpful not like I’ve cracked the code or anything …just helpful

[@JeremyMcdonald]

Will do! I’ve followed your journey for awhile btw.