Living with Logopenic Aphasia

Jenny describes her experience of living with a diagnosis of logopenic aphasia. This is the short version of a video in week 2 of the online course 'The Many Faces of Dementia' www.futurelearn.com/courses/faces-of-dementia.

[@thelady71]

I had a massive stroke and was diagnosed with aphasia. I never knew there were different types. This video is relatable because I experience all of this. Because I don’t have any paralysis and I can speak clearly after therapy, I have a hard time helping people understand the delays, forgetting words at random times, mixing words within sentences, having trouble reading, having trouble retaining information and thoughts, slurred speech after about an hour of speaking is so hard to explain. Thank you for this video. I will now use it as my resource to help people understand feeling as I am stuck in a body I can’t control. Thank you so much.

[@nonsuch]

Did you write this yourself? If so, you write perfectly normal as I'm reading this and understand everything you've said. This is great because you have a fluent way to communicate with people as you are working towards verbal recovery. If you ever get frustrated, you can always type out what you are trying to say. 😊🤗

[@blazednlovinit]

I also wondered about the writing. Does it affect writing as it would affect speech or could someone have real trouble speaking but absolutely no trouble writing? The brain is a wonderful and complicated organ.

[@aaronm.3581]

Drink 2 gallons of coconut oil every other day, for a month.

[@applejack160]

That's awesome that you find inspiration in this lady's story 👏 My dad has gone through similar issues since a brain infection a few years ago. Stay strong and do your linguistic work, you can do it 💪!!!

[@goosesno4112]

How long it took you to write this?

[@jjconc]

What a lovely woman advocating for those with word finding aphasia. I had a severe brain injury 20 yrs ago. I ❤ the way you're explaing everything.

[@blazednlovinit]

What a lovely woman she seems. I hope she got support.

[@margiehoward2760]

Thanks for sharing your experience. It is very much appreciated and I feel privileged to have the chance to listen

[@jessicatwo9615]

Thank you for posting this, it was extremely informative and helpful.

[@spud4987]

My grandpa had a bad stroke when I was 6 and I helped him talked to others till he passed 6 years later then my dad had a type of stroke but no one could diagnose it. I help him now. It’s all about being patient and I find it fun to help because you have to enjoy the little things in life and well at least I get to spend more time with my dad now. That’s my bright side.

[@phanx0m924]

Yes indeed, ☺

[@trustjah]

I thank her so much for her honesty. It's important to hear.

[@drew9312]

Thank you for sharing this personal account so we all can understand. It is very helpful. All the best with the condition.

[@canterburytail2294]

Thank you for sharing, you are a wonderful person I can tell, like somebody I'd like to be related to.

[@ramziramz7935]

I had been to many doctors and no body knew what it was. I've just figured it out by myself after 7 years of misleading. I could not continue my PhD course because my work was not accepted due to delay. My supervisors were asked me to finish the work on time and I gave them promises but when I went back home and started to write I found no words in the brain to write, so the work had never been done. It took me 1 week to write 200 words. I realized later this is inhibited and run in the family. We all were misslead and had been told it was just the start of Alzheimer.

[@LoriannWitte]

Aphasia - I have had it too for 11 years. I was lecturing and traveling to do interventions. A "neurological event" changed my thinking and communication abilities completely. Many doctors knew very little.

[@kimgloria6094]

@@LoriannWitte Hi Loriann, 12 years ago after a deep major depression / nervous break down / I could barely string a sentence together. My mind felt so injured from trial and error with a ton of different kinds of antidepressant. I assumed it was my depression. But perhaps it was PPA all along. But just 5 months ago after getting the covid booster shot I began to say the wrong words for things. For example I said to my husband please put the bowl in the oven when the target word was microwave. This has been going on once or twice a day since having covid booster. Have you noticed a change since the covid shot ?

[@mvr_excl]

What is a PPA?

[@Whoopdido777]

This was somewhat similar to what happened to me,, but not nearly as bad. I never had a stroke. I don’t have dementia or anything like that. I contracted a disease called autoimmune encephalitis. I could write a book about my medical problems, but the short version is that I started to suffer an enormous number of seizures and I guess if I want to talk a little bit about the autoimmune part…basically the antibodies in my body that went to my brain to kill the encephalitis got confused and stayed in my brain and started to attack healthy brain cells once the encephalitis was gone, so basically my own body was causing brain damage to a point. So after I was discharged from the hospital, I had some memory problems and physical limitations. Like I couldn’t really remember how to use a computer for example, even though right up to the point where I dropped and had my first tonic clonic (Grand Mal) seizure I used a computer every day. It was an essential part of my job. I forgot many very basic like trivia type things such as stuff about my favorite movies, music, etc. I could have conversations with people but then out of nowhere I would suddenly not be able to find the words for what I was trying to say. Like I might have been wanting a chair for some reason but I couldn’t remember the word for chair so I would have to describe it. I’d say something like “Ya know that thing. It has four legs and you sit on it.” and somebody would say “Do you mean a chair?” and I’d say “Yeah that’s it.” It was extremely frustrating for me and I’m sure for those around me. I initially had my first seizure on September 27th 2017 and ended up at the Mayo Clinic in Rochester, MN and was discharged on January 1st 2018, but I believe I had to go back a couple times due to some relapses, but once my neurologist finally found a cocktail of drugs that worked for me, I’ve been basically fine for I think over 3 years. I have a few epileptic blips every now and then but as long as I take my medication I’m 95% fine and for the most part my memory problems have been cured, although I still wouldn’t say I’m the same person I was before all this happened to me. I’m just in a MUCH better place than I was in say 2018.

[@swisschris8847]

Matt, thank you for sharing! You've stated that the medications restored your memory. While it is implicated, I need to know whether your speech and comprehension are restored with meds as well?

[@swisschris8847]

I do hope to hear back from you, Congratulations and thank you in advance!

[@Whoopdido777]

@@swisschris8847 Oh definitely. Yes. Like I said before, I’m not the same person as I was before. By that I mean…there’s really no other way to describe it I guess, but I’m probably “dumber” than I was before my initial incident and hospitalization. Not that I was in MENSA before or anything, but now I’m just not quite as quick on the uptake and every now and then I do still have problems finding the right word to say. I know what I want to say, but I just can’t get my brain to make my mouth say the word. It does happen, but not often enough to negatively affect my life at all. But as far as speech and comprehension goes I’m all good. I don’t slur my words or anything and I understand everything anybody around me says (unless it’s stuff that I simply don’t understand like astrophysics or something) and am just a normal part of the conversation when I’m with other people.

[@swisschris8847]

@@Whoopdido777 Dear Matt, thank you SO much for your response!!!!!! I am just seeing it now. I wish to pass this info on to one who is experiencing severe problems communicating w/symptoms that are similar to what yours were, no history of seizures though. I am interested in what meds used so we can research/learn about what made of/chemical components/potential action mechanism on speech apraxia/aphasia and take that info to MD. Would you be willing to contact me with that info or post it herein? I could post my email for you. I am also intrigued to think that it might be possible that speech apraxia might be due to localized seizure activity in speech region/s of brain. OMG. This would be such a miracle for the person I know who had a stroke and suffers so much trying to communicate!!! Thank you for your time and any help you may give me. -Chris

[@Whoopdido777]

​@@swisschris8847 Sure no problem. I take a cocktail of drugs right now. Like I said, it took awhile to find the right cocktail. It was just a lot of trial and error. I was very lucky to have the head of the epilepsy department at the Mayo Clinic as my neurologist at the time. He was the person who eventually came up with the right cocktail. He was very familiar with my case anyway since while I was in the Mayo Clinic I had 6 doctors and every time one of them came to talk to me they wrote up a report and sent it up the ladder for him to review it. It’s possible he just wanted to stay on as my neurologist after I was discharged considering my case was so interesting. Anyway, after a lot of trial and error, ultimately the cocktail he came up was like 3 years ago, or maybe longer and what I’ve been taking since is: 1750 MG Divalproex 400 MG Zonisamide 40 MG Clobazam Those are the 3 seizure/epilepsy drugs I take. I take basically half the dosage in the morning and the other half sometime in the evening (really anywhere between like 6pm and 10pm) He also wanted me to take a Calcium supplement for some reason, so I also take 500 MG of Calcium including 800 units of vitamin D Totally unrelated to my seizures and encephalitis, during this whole process I learned that I have hyperthyroidism so I now take 100 MCG of Levothyroxine. Finally, I’m 42, but when I was about 20 I went in for a physical and my blood pressure was like 150/100. High blood pressure runs in my family. My doctor wasn’t overly concerned about it at the time, but he put me on 10 MG of Lisinopril. I’ve been taking that ever since and my blood pressure is 120/80 every time it gets checked. I hope this is helpful in some way. But PLEASE don’t think I’m some miracle worker or anything. All I can say is that this cocktail worked for me and helped me get out of my funk and helped me start to lessen the effects of the very mild aphasia I had at the time and definitely helped with the seizures I was still having. Good luck.

[@celticmugwump]

Scaffolding was the word, and I got that from you straight away. If you are trying to say something and are clear in your head what it is you are trying to say but just can’t, is it possible to write the word down or is that ability blocked as well ?

[@RevolutionAndPeace]

Great question!

[@camrynhuynh5249]

im pretty sure in her case she could write it down when she remembered the word and that’s why she had it written down in her phone. there are certain types of aphasias that cause a writing impairment though im pretty sure.

[@woof999]

You are so lovely, great attitude. I wish you a wonderful life filled with love and happiness

[@janicesullivan8942]

My heart breaks for this woman, you can see the sadness in her eyes at how her life has changed. I wish her the best.

[@terri-sueclare2166]

this explains alot. this is why my mother says she can't read anymore or answer certain questions I have

[@alfiewviolin8553]

Thank you for your very helpful video

[@antoniobenitez8081]

I have moments where I speak to someone and they really don't pay attention to what I say its annoying because I know I'm making sense in my mind but when I say it out loud people just stare at me like I'm stupid. I once heard a friend say " what's he saying he sounds like someones pushing a button and sound just comes out". I felt really bad because all I was trying to say was " I need a break from work it's been really stressful" . I stopped talking to them because I realized they dint think of me as a normal person.

[@rebeccarussell9618]

Im 41 and this feels like me..im scard..my son is 5 and i dont understand his storry books..i loss words and really stuggle to follow or remmember conversations

[@Alsatiagent]

Have you told a doctor or your family? There might be ways to help you with it.

[@defaultusername123]

Like the other comment said, if you haven’t please see a physician. There is therapy and help for these kinds of conditions. Don’t struggle silently.

[@rebeccarussell9618]

I did work in care but left for a number of reasons..but i was struggling taking in handover and making mistakes on things i shoud of know as been doing it 20 + years.. also have other health problems..so now on long term sick ..we are getting an appointment ..put its harder in uk after covid..thank you for your coments..may be its worry thats making it worse xxx

[@katiekawaii]

@@rebeccarussell9618 I empathize. That must be very scary. I've heard it can take a while to get in to see a doctor in the UK (I'm in the US, and despite all our healthcare system's failings, I'm very grateful that at least if I want to see a doctor today, I can see a doctor today), but when you do see your doctor, just remember that you deserve to be taken seriously, and if you feel like you aren't, don't hesitate to try again with a different one. I hope you get the answers and the care that you need. 💛

[@tiko4621]

Your grammar online is awful if that means anything, have you had a stroke recently? You should see a doctor if you haven’t already. It’s possible you’ve had a minor stroke and didn’t realize

[@shannonwegley483]

God bless you!

[@XrpAndy]

Had a seizure and had phasia effects after. It is the absolutely worst feeling in the world. Everything in your brain feels normal, but when you speak it’s Jiberesh

[@chequeplease]

I have migraines that sometimes involve 'seizure activity' and yeah. The aphasia afterwards sounds exactly like how this lady speaks and how she describes it is spot on!! One time i got completely lost and i couldnt describe how to get back to my house, ended up in the hospital until the migraine passed and my brain went back to normal. Sometimes you want to shout 'im not stupid!'

[@hazeldavis3176]

This is me!!! Mine is the same and I feel the same. Frustrated but still doing my best 🌺

[@kimgloria6094]

I hope you're doing well Hazel.

[@smileydavis73]

What a pleasant lady. Nice people are the best people.

[@TrackpadProductions]

I wonder if she'd be able to say "scaffolding" if someone were to say it to her. Like, could she repeat it just by rote?

[@stikndip]

I'm only 59 but am beginning to forget words. I teach so it can be quite inconvenient. Weirdly, one word is amnesia (I shit you not) and another is discrete or discretion. There are others. Does anyone think I should seek a diagnosis? ps I struggled to remember discrete!

[@Butterfly1025A]

I think you should definitely start talking to doctors, because there is a non-zero chance that those memory issues are being caused by a treatable condition! Getting a diagnosis early on for incurable conditions is also a good idea, because it gives you more time to live your best life in the time you have and plan for when you may need skilled help later on. Hope for the best, plan for the worst: that’s how you live a safer life!

[@zhisu2665]

Me too. It can be so depressing and irritating.

[@jackhuskey9596]

God I just want to give her a hug

[@JamesLibrary]

"Scaffolding" is the word, right?

[@HakikatBirSinghBhatti]

Yes

[@Thisbook2022]

I experience this with MS!

[@jardelg6419]

One question, why is the patient able to understand the last part of the conversation and his response is appropriate?

[@6Twisted]

The brain is fascinating. When parts of it break it has strange effects. Hopefully one day they'll figure out what causes my autism.

[@DivineLightPaladin]

If only some groups didn't have a vested interest in keeping they information silent and hidden, we would've known earlier. Certainly felt that my symptoms were made worse after certain injections and many of peers have the same symptoms

[@kg5521]

What are the early symptoms of PPA ?

[@bhawnaaggarwal8272]

Primary progressive aphasia is typically in absence of any stroke or trauma It is degenerative and progressive in nature whereas aphasia post stroke has better prognosis with speech rehabilitation comparatively primary progressive aphasia.

[@konopandada7872]

I understand everything she says am I aphasia today twice?

[@n16161]

1:33 Scaffolding! That is a tough one anyway.

[@srjskam]

Her mistakes are interesting... _vigar_ for _vicar,_ _worth_ for _word._ Phonetically similar sounds that in many languages aren't distinguished. Sounds like she'd have better luck being aphasic as a Finnish person.

[@roxweinzel7436]

Beautiful lady

[@lissakaye610]

Is she trying to say scaffolding? Awww, I feel for her.

[@cristinamorenocastro5338]

Yes, she is

[@joerunge3915]

scaffolding is a hard word to remember I agree. I can't even spell it lol

[@ikaeksen]

Scafolding.. was the word.

[@cameronoyola6793]

S C A F F O L D I N G ❤️

[@DrLazerbeam]

shes so engaging when she speaks. its an awful thing. wish I could just click my fingers and get rid of these little things that make life so much harder.

[@letsbehonest4221]

I dunno.. she seems to be stringing sentences together quite well / normally..

[@MBT372]

That’s what I thought too…

[@Supergn0me]

My bet is "scaffolding"

[@jakelance5786]

maybe escalator?

[@strykerjones8842]

This is a terrible affliction this woman said she a priest

[@lindylou8458]

Research Coconut Oil. It works..

[@Nutsaur]

What works?

[@aaronm.3581]

For dry skin.

[@prosperity4444]

Expound on that statement

[@Nutsaur]

Strategy

[@ellaelliott4415]

I hope you're not suggesting that it'll treat aphasia, because it won't. I hope that people don't believe that...