I wake up at 4 or 5 in the morning with a trembling arm or leg and then have to deal with it for the next hour, exercising and taking pills.
My body and mind never feel right. Either I'm constipated or extremely anxious or sad or jittery, and being around other people makes me self-conscious, paranoid and/or misanthropic. I'm easily agitated, and I've lost the ability to calm my mind.
I have to run errands, smile at cashiers and other people that I have to deal with, and complete the same irritating rudimentary tasks that normal, un-tormented people consider easy and routine.
It's a wretched existence, and my neurologist, psychiatrist, psychologist and other specialists aren't effective enough, and probably don't give a shit.
Anyone else considering what it's obvious that I'm considering?
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Alock2020
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the doctors and psychiatrists are mere legal formalities for prescribing medicine. As of now Parkinson's disease is not understood by anyone. In such situation we can only rely on regular exercise and spiritual practices ( for example prayers , mediations etc.). I would strongly suggest to get involved in your religious practices and pray from God. Believe me your depression may markedly be subsided by a simple regular prayer (of whatever religion you belong to)
I suppose that even if a god or "higher power" which concerns itself with humans doesn't exist, there might be some kind of placebo effect that might favor those who pray to Him/Her/It. No one is ever 100% certain about anything, so perhaps I could exploit that tiny remnant of belief, or doubt about doubting.
I know what you’re thinking and feeling. It sounds like maybe you’re in a bad spot at the moment and you’re spinning. It happens. They do give a shit but they can only do so much. One can only imagine what it feels like to get hit in the head with a baseball bat until you get hit in the head with a baseball bat. And most people, thank goodness, will never know what this feels like. But I do and I feel you. We all have or will have some burden to bear somewhere along our journey..because we’re human. Remember you’re not alone. Your greatest power and strength comes from within! I made the decision that I was not going to let this beat me. I hope tomorrow will bring you a better day!
Due to pressing the wrong key, I lost the entire text for the second time. My eternal optimism that I wanted to share with you momentarily disappeared. Maybe there's a purpose to this, says the optimist, and starts a less understanding reaction.
Earlier, you posted similar messages in which you described your situation very clearly, and anyone with PD will recognize something in it. That's why there will undoubtedly be many responses again. Some are very understanding, solution-oriented, or spiritual, while others may give you a kick to get you out of the rut. All of them aim to stimulate you to overcome your challenges. However, there are hardly any responses from you, except for the religiously oriented contributions where you mentioned not believing in an almighty God. At least that is clear. This interaction is important to move forward together. Otherwise, it will be a repetition of the same and you won't make any progress. You don't have to respond to everything or say a generic thank you, but show where you can relate or where you struggle. Maybe you should read this again.
Thanks PB. It is likely the impulse control disorder that shows that I am certainly not symptom-free. A strange phenomenon. I KNOW I should work better offline, but I don't. I am amazed by the disorganized and illogical choices I constantly make. Time-consuming, annoying for others and myself, but I try to smile about it. It is what it is.
Alock, you are in a space that I'm sure many of us have been in. Take heart, slow down and breathe. You are not alone. I suggest meditation - specifically yoga nidra meditation (or really ANY type of mediation should help). It is a guided form of mediation and is done lying down. My tremor completely stops at some point while I am doing this. Of course it returns after I am done, but for a while it might be calmer. I also sometimes have to modify my arm position, as supination (open palm) exacerbates my tremor. It does calm my mind and is a good break from the day. Maybe start with shorter yoga nidra sessions and build up your time if you find it difficult to relax. You can find many videos of this on you tube. God bless you, and I hope this helps and brings you some peace.
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If you take blood thinners, maybe. Consult your pharmacist.
before you consider what youre considering, please consider the following changes to you regimen, if you havent already tried this:
Intermittent fasting - eat only during a 6 hour period of the day or less. This will induce AUTOPHAGY, which, put in simple terms, disposes of the cellular and intracellular JUNK that is choking your fragile neurons. This will give them a lot of relief. You will feel a difference immediately.
Eliminate all artificial, refined and enriched products, gluten, seed oils, inflammatory food, GMO food and sugar. I would advise eating organic as much as possible. Think about food properly. Its fuel and supplies for repair, construction and maintenance. You want to build yourself with the highest quality parts.
Journaling - this is something that eliminates the mental and psychological poison from the deepest parts of your soul. Spend 20 minutes a day writing down a free flowing train of thought about what bothers you. I can be what bothers you about yourself, others, the world, anything. Dig deep. What makes you angry? What enrages you? The pressures of being good and perfect? The anger of fear, guilt, shame, insecurity? The pressures of life. It could be anything, your spouse, your kids, the hand youve been dealt, emotional pain and sadness from childhood trauma, dissatisfaction about something specific or in general. Get to the roots of it and dont hold back, even if it scares you at points. No one will read this, so be as brutal and honest as you can. Destroy it after writing. Each session, start writing and dont stop until the 20 minutes is up. You can go over but never less than 20. The way this works is like psycho analysis. You slow your thoughts down to the speed that you can write or type them, not as fast as thinking or talking. It doesnt have to be legible. It doesnt have to be perfectly gramatically correct and spelling and punctuation dont matter. Just write and let er rip. Try it every day without fail for 30 days and Trust me, the tremors will be more than 50% reduced in a month.
These things take discipline, but trust me, once you feel the results, which will be fast, you will not want to go back.
This is the best I got. Good luck and feel better, friend!
notice how these suggestions are non medical and do not require doctor visits or prescriptions? The only thing required is discipline and getting started!
Thank you for the comprehensive reply. I currently meditate, but I don't think I'm very good at it. I paint rather than write, although I've written poems in the past. I don't really have 20 minutes per day to spare for writing a journal, but I'll consider it anyway.
Hey. Im not a salesman. Im not going to make commission off of this. I just want to help. You have 20 minutes a day. Everyone does. You can do it while you're watching tv in the evening. If you're contemplating ending it all because you can't feel better, then you have nothing to lose. Unless you don't believe me or you really don't want to get better because it's too much work. You decide, friend. This is not meditation. Follow my instructions or read the books for more details. Good luck, don't do anything foolish.
I was just thinking that I am depressed. Luckily I recognize it and try to act accordingly. Which means I try to thank my way out of it by trying to appreciate the good things in my life and to dwell as a little as possible on my symptoms and my struggles. Which is not so easy at times. I have thought about my exit strategy, but I’m not ready to move forward with it yet, although there are certainly moments where I think about it a lot. Night time is very difficult for me because I go through a miserable transition every night from “on” to “off.” It sounds like your meds are wearing off and you’re waking up as a result. Can you set an alarm to take another pill before you get to the wearing off stage where your tremor is so bothersome? Or have you tried taking extended release c/l before bed or sometime during the night? It doesn’t work for me but I know it works for some people here. For constipation I have found that magnesium citrate, 200mg. X 3 every day makes all the difference for me. Try taking all three in the evening and see if it helps you the next morning.
HiAlock, I can ensure you are not only one on this boat.I am even on the lower floor I feel very similarly to you.. I have to mention that I am even in financial troubles caused by side effects of medication (Neupro,L/C)especially compulsive disorder where I lost my life savings and even get into the new loan - lost it all in crypto and stocks trading.I never had this type of problems before,never gambled,bet , nothing.Nobody warned me about this possible side effects (my neuro just said - this happen sometimes, I am sorry) The "funny" thing is as soon as i quit Neupro the urge to play (in my case trade)quit as well.....So I am not dealing "only" with my advanced Parkinson's but as a part of the extra package I have, I am dealing also with the question what I will eat today, and how to pay my debt with the minimal income i have, which is not enough even for my basic needs as food,meds and supplements...So if you're lucky enough and have some stable income, your basic needs covered, no bonus conditions present,I would be happy just with this....
realk I think you need the strength to survive your demons too and as I have been told to and have experienced and witnessed many times, it will all work out. It always does. Time is all that it takes and matters.
I have been down this road a couple of times in my life when I was much younger. However you may believe, people crossed my path that let me know they still wanted me around. As life has gone on I have seen the positive effect that dealing with my struggle has had on their life. I didn’t know anyone was watching. There are a lot of good ideas offered here that can help. I believeI I am still here not just for me. I encourage you to keep sharing (talking) here and elsewhere. There is a sign on the bathroom door at our boxing gym that says “If you quit a friend quits!”
I have felt what you have described. For me, these feelings seem to go in waves or cycle, bad days and then good days. Good sleep for me is essential. Finding extended release l/c has helped but taking 2 200mg one after the other a few hours apart right before sleep has really helped. The truth is Parkinson’s is rough. I golf and it distracts. I also have journaled as has been suggested by others. I also intermittent fast. These ideas have helped me, I believe? Just know people care. I hope you find something that gives you some relief.
I can relate with you and I can’t stress it more, exercise is key, stick with it even when you don’t feel like it, do it . I have an exercise routine I have done since my dx 15 years ago and it is a very important part of helping yourself and I definitely notice a difference in my symptoms or lack thereof. I don’t know how long you have had PD or what your specifics are, your diet and such but it’s crucial to put the right things into your body as well as eliminating those harmful things as well. Cbd is something else that for me works wonders and I use it every day. It calms down my body and helps with my anxiety, dyskinesia and pain. There are many articles on Cbd and the benefits of it on the Parkinson’s brain. I swear by it but that’s me. Always check it out with your doctor first.
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present,I would be happy just with this....
Massive facial hair 🙁
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Starting fresh - probiotics 
