Parkinson's Disease

Create a new post for topic
Join the Conversation on
Parkinson's Disease
4.8K people
0 stories
1.3K posts
About Parkinson's Disease Show topic details
Explore Our Newsletters
What's New in Parkinson's Disease
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Interviews with Scientists!

Hi Everyone! I'm new here. The patient committee I manage suggested I post this interview series here for interest and educational purposes. I'd love your feedback! Our goal is to reach a wider public/patient audience with this project! Happy watching and I hope you learn something learn! www.youtube.com/playlist #scicomm #ClinicalTrials #Research #StemCells #CardiovascularDisease #AlzheimersDisease #ParkinsonsDisease #Diabetes

Stem Cells from the Sofa

Share your videos with friends, family, and the world
Post

Just three words

Three words that's all it took, three. And truth is they keep changing:
I am sorry
I am sorry for the sounds, that continue to disrupt your afternoon. I am sorry for the screams you may hear when I'm locked into a spasm. I am sorry for the grimace, it's not you, I swear. For my arm locking up, or outrageously moving from a tremor. And now it's become almost a ritual at this point, half-way through a grocery run I can feel my body do a jig with the cart. All the while lying point blank to my husband that I am fine. He sees the stressors, he knows I'm lying. But I hate that walk back, that feeling of defeat as I Igor-walk back out to the car. It's a wierd feeling of complete vulnerability of feeling like I arrived at school naked. And all I can see are people watching this wierd act of what once was an artist, a poet, a novelist. Well, I know they aren't really looking. And that I probably don't take up a miniscule of brain matter. But that anxiety is present all the time, everyday. Maybe I'm a narcissist.

I am sorry for that annoying scrape sound you might hear. That sound of shoe (or in my case slipper, cause sneakers can't easily slide) rubbing the asphalt of the parking lot. I promise, I hate it just as much as you do. It is the strangest feeling and extremely sobering to witness your self-decline. And since this has started I have slowly felt myself dwindle. The self I spent thirty-six years working on. What I once knew so well, completely altered and all I can do is watch/feel it happen. I am sorry for the bags under my eyes. I don't sleep through most nights. Something is always waking me up. Sometimes I will let the weight of my eyelids win and the sleep will fall over me like confetti or glitter. Sometimes I let the sleep win.

I feel guilty:
Three words that's all it took, I feel guilty for making my husband have to take so many extra steps just to meet me halfway. I feel guilty for tricking him, I am so different from when we first met. It's all been different since the symptoms started showing. But no matter when or where I am the soft assurance of his voice has never changed. He is continuously in my corner, fighting for me. I feel guilty for making my family worry, for getting angry at my mom because she refuses to believe. I can't blame her for pushing it to be something else, I'm her daughter. I feel guilty for causing my beautiful niece to hesitate in my presence. For exposing her to a spasm or tremor or an uncontrollable facial tic. I don't ever want to frighten or scare her.

I feel guilty for not taking advantage prior to this diagnosis. For not enjoying the smaller things as much. A good night of sleep, a walk, exercise, for when it came easier. There are so many other words I could use to describe this event, to describe the depression and confusion. But I'll use just three more right now:

I have Parkinson's.

#BipolarDepression #MentalHealth

Most common user reactionsMost common user reactionsMost common user reactions 16 reactions 3 comments
Post

I'm new here!

Hi, my name is angelbutterfly74. I'm here because
My husband has Parkinson's, we're trying to learn to deal with losing friends and family because of this. #MightyTogether

Most common user reactions 3 reactions 1 comment
Post

This post is for everyone on here!

I don’t know what you are going through but I truly do wish you all a life full of joy, peace, and happiness at all times. May life get better and better for you each day in every way! I hope and pray only positivity comes your way, nothing negative that you don’t want. You deserve to be happy! May you all be well.

#CheckInWithMe #MentalHealth #Disability #Anxiety #ChronicIllness #BPD #BorderlinePersonalityDisorder #Bipolar1 #Bipolar2 #AnorexiaNervosa #Trauma #PTSD #Selfharm #SuicidalThoughts #BipolarDisorder #CheerMeOn #MajorDepressiveDisorder #MightyTogether #SchizoaffectiveDisorder #Schizophrenia #GeneralizedAnxietyDisorder #ADHD #Addiction #SocialAnxiety #Stroke #Autism #AutismSpectrumDisorder #Cancer #SeizureDisorder #Scoliosis #SensoryProcessingDisorder #ComplexPosttraumaticStressDisorder #ThyroidCancer #SocialAnxietyDisorder #SleepApnea #Epilepsy #EatingDisorders #EatingDisorder #SeparationAnxiety #ChronicFatigueSyndrome #ChronicFatigue #Fainting #PanicDisorder #PanicAttack #PanicAttacks #ParkinsonsDisease #ChildLoss #ChronicDailyHeadache #Fibromyalgia #FoodAllergies #FunctionalNeurologicalDisorder #CysticFibrosis #Migraine #MightyPoets #MedicationInducedMovementDisorders #MaleReproductiveCancers #MyCondition #MoreDiseases #MoodDisorders #Misophonia #Mania #MyCondition

(edited)
Most common user reactionsMost common user reactions 32 reactions 3 comments
Post

My apologies

#I'm sorry that I have been falling behind in my postings. July has been a tough month for me. Most days I have been sleeping and not really leaving my bed.

I have a series of doctor visits coming up that will determine if I have Lewy Body Dementia. This is a spectrum involving the mix of Parkinson's and Alzheimer's. At the same time as this, I am also in the process of tests to see if I have Intracranial Hypertension. That is where too much spinal fluid is building up for whatever reason and filling areas in my skull damaging my brain.

I am not in denial. In fact, I feel that these two conditions have been the closest to the truth in my three year journey to finding the truth about my health.

I'm scared. I see my father, who has Alzheimer's, decline slowly and he is so angry. I don't want to be angry and mean.

I also have accepted that I need mobility aids. I cleaned up my grandfather's walker and crutches. I saw a wooden walking stick; very fancy. I felt like Frodo Baggins. I can get into using that.

Another thing I am scared about is forgetting people I love. I don't think that will happen anytime soon, but it could be my future and I don't want that.

Thanks for reading my ramble.

#Dementia #Depression #ParkinsonsDisease #AlzheimersDisease #MentalHealth #Grief

(edited)
Most common user reactions 10 reactions 7 comments
Post

Culture Shock, a short story (I notice that I write horror stories when depressed, especially zombie fiction)

I was lost, asleep, caught in a nightmare, until Professor Andrews rescued me. His treatment was new, radical and no-one else had thought of it, let alone tried it. I was the first successful guinea pig - all the others had 'died' or remained unchanged but I was saved. The current was too strong, too weak or the condition of the others was too far gone. After the series of shocks, I started to remember who I was, who I'd been before and then I was slowly able to communicate this to others. "My name is Charles Ward," I said, stumblingly.

"I used to live in Acacia Avenue, Fulham. I was married with two children, until the illness took me. My family - God no! Were my first victims (I would have cried, had it been physically possible but my condition stopped me).

"It's alright old man. Steady on. It's perfectly understandable. The horrors of your previous life," said the professor.

He was the only one who treated me with kindness. The others in the establishment called me a monster and didn't trust me.

"Once one of them, always one of them," they intoned behind my back.

"You just can't trust them - I wouldn't turn my back on him for a second."

I was still a monster, a misfit to them and would revert to type, given half a chance. Maybe they were right - how could I tell? I could be fine one minute and slide back into bad habits in an instant - who knows? Even the professor can't be sure, which is why I'm monitored so thoroughly. The cameras pan me. Eyes follow my every move. If it wasn't for the recovered memories of who I was, I might become paranoid.

My beautiful daughters! My wife! How could I do this horrible thing to them? I was a monster alright. A creature not to be trusted. I was an addict of human flesh and the professor had saved me.

They give me insulin and feed me nutrients, intravenously because they say I cannot digest food normally yet. Apparently all the dead flesh is returning to life and I am becoming 'human' again. They say the return to conscious awareness is the first stage and that they might be winning this war, if they can turn me back to normality. The professor believes that consciousness is what keeps the animal urges under control and stops me - us in fact, from being condemned to a life of mindless cannibalism, eternally. I hope he is right. He further believes (and the evidence seems to suggest it, strongly) that once you've captured the mind and got it in thrall, the body will follow. He says, like criminals and addicts, it's a question of reprogramming the being. I really hope he is right.

The guards wanted their revenge on me - not for my crimes against my own flesh and blood but for those they had lost to 'my kind.' It gave them a sense of closure and of power, to beat the hell out of me. It made little to me as I felt nothing and was broken already, in mind and spirit, and as the professor said the body just followed down the mineshaft of terror.

I am not alone here. The others are chained and locked in cells because they have been known to gnaw off their own hands and pull off their own feet, to try to escape - such is the effect of their deep hunger. They look at me with pleading eyes - like animals that cannot communicate in any other way. I turn my back on them, glad to no longer be one of their number, sad that they are still trapped in this lifestyle and ashamed that I cannot help these lab rats.

Talking of lab rats, the urge is returning in me. It started with surreptitiously swallowed insects, then rodents, birds if I can catch them and once a hedgehog. Oh yes, as they learned to trust me, they let me out into the grounds - at first supervised, then quite freely. By this time Andrews had moved on. I was no longer his favourite 'pet,' just an old project that he let others monitor. I was still fenced in. I still had cameras aimed at me but by this time I was considered mostly harmless. The smell of rotting flash that was me, had subsided with time and the effects of various treatments. On top of that people had become acclimatised to my odour. I was the grenade that hadn't gone off.

Now, like a prisoner of war, I searched for a weak point - the spot where the searchlights or cameras missed and I dug.

I had known I was starting to revert when the Parkinson's like symptoms started to reappear and I found it hard to kick start my body into normal, human motion. I hid the shuffling gait as best as I could, the creeping catatonia but I knew the condition was returning and that there was no point fighting it.

I saw my people wandering in large, distant herds. I heard the sound of gunfire and explosions as the humans culled them. I longed to join them. I wanted to forget the normality I'd been a part of in the past and rejoined here: The bright light effect of coming out of a cinema into daylight, the noise, the smells, the sensitivity of touch and above all 'taste.' I wanted to forget all of these plus the memories of what I'd done to others, who trusted me to be at least 'human.' The wounds of these half remembered crimes against what I was, was just too much to bear. I wanted to slip back into the opulent dark of unknowing. To be without that sharpness of conscience and consciousness, was all I longed for. I wanted to forget, big time and tonight my opportunity came. I scrambled under the wire and got away, joining my brothers and sisters of the flesh. At first they sniffed me, like some new animal but then realised I was still the same underneath. Soon the zombie army marched on, with me in its midst. Sorry professor but I must remain true to my calling as you do yours. You didn't sin against what you were but for me there is no going back and no desire to. Even now the language centre is going and with it my mind.

"Ugh, snarl, grunt."

Most common user reactions 2 reactions
Post

I'm new here!

Hi, my name is becchae. I've been diagnosed with Ehlers-Danlos-linked Dopa-Responsive Dystonia. Basically my muscles contract so hard that they yank my joints right out of their sockets. Thankfully levodopa helps enough while I'm awake so that my joints only sublux a bit, not fully dislocate. I am nearly fully bedbound. 6 months ago I was an active and healthy 23 year old. Now I have no purpose, happiness, or peace. I do blame this on the doctors that wasted months, in some cases years, assuming I was a drug seeker or a psychiatric case instead of a neurological case, which allowed my disorder to generalize all over my body and resulted in permanent brain and nerve damage. I cannot feel entire parts of my body and what I do feel is always pain. I will never trust a doctor or a hospital again, not that I ever really did to begin with. I am, however, now a wealth of resources because nobody knows anything about my condition. So come chat with me about POTS, EDS, Dystonia, hell, Parkinson's. I'd love to feel a tiny bit less useless stuck here with everything that has every brought me joy ripped away from me in a few short months by the ignorant and unempathetic.

Most common user reactions 1 reaction