I'm finding that along with having Parkinson's, which is more than enough to cope with, I'm also having problems avoiding falling into vicious cycles which have a psychological component, like the following:
1) Anxiety and fear causing me to sleep poorly and/or take too much anti-anxiety medication, resulting in extreme weakness and fatigue which sometimes makes me feel like I'm dying, causing anxiety and fear.
2) Sadness over deaths of parents over the last few years and resulting feeling of being lost in the world, with an identity largely based on my relationship to my parents also lost, resulting in anxiety and fear (see #1) which weakens my capacity to come to terms with grief.
3) Loneliness due to lack of friends or significant other, resulting from my reluctance to socialize and have people see my arm trembling like a leaf, increasing my depression and anxiety.
4) Extreme weakness and fatigue making it difficult for me to exercise as much as I should, thereby sapping my strength and morale and leading to more anxiety, fear,
weakness, and fatigue.
5) Dependence upon too many doctors/specialists prescribing too many pills with no notion of how all of the pills that I have to take interact as a group, causing me to feel generally bad a lot of the time, leading me to see new specialists prescribing more pills.
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PTCL is potentially curable with chemotherapy. The median progression free survival (PFS) following CHOP chemotherapy is 12 to 14 months. Approximately 20 to 30% of patients will be alive, and disease free, 5 years after the completion of treatment.
Me:
Median is half the patients, PROGRESSION free??? If I’m the good side, it won’t progress for one year.
I have been researching and now I understand why after chemotherapy they didn’t say diddly squat.
My friend, I'm sorry you're going through such a tough time . I do think that if you pick yourself up by the bootstraps you can totally beat this! If I was a doctor I would recommend therapy, physical therapy and my favorite supplement Lithium Orotate 5mg to 20mg once per day. However, I'm not a doctor so if you want to try that you're on your own. The good news is that there is lots of information on the applications and safety of Lithium Orotate. Journal writing will do wonders for your anxiety as well. Read The Meaning of Truth by Nichole Sachs LCSW. The brilliant Ms Sachs also has a ton of helpful YouTube videos on this to get you started as well. Helped me immensely. Taking a long brisk walk a couple times a week is good therapy all around too. Good luck my friend !
Thanks, Bass. My trickcyclist had me on Lithium for a while, but I'll have to ask her about Lithium Orotate. Right now I take Bupropion for Depression, and Chamomile tea, Gabapentin, Quietapine, and occasionally Valium for anxiety, if the first 3 don't work. However, I'd like to get off of the three anti-anxiety pills, because I've been reading scary things about their long-term effects.
I've become more paranoid about our wonderful health system since my doctors began medicating me for PD about 3 years ago. I think that the pharmaceutical companies don't give a shit about anything except profit, and that they've somehow corrupted the whole system. For many of the powerful neurochemical treatments that are prescribed, there are no long-term studies, so no way of knowing whether some of them will ultimately turn people into vegetables or quivering zombies. Doctors and pharmacists have admitted to me that they don't know how groups of drugs interact, and some doctors are rather mercenary, which can also result in "negative outcomes." A specialist who sees over a thousand patients a year and provides mediocre treatment to each earns far more than one who sees 100 patients per year. Sorry about the rant, but I guess I'm getting fed up.
Woah they're giving you the works! I guess from a doctor's point of view, typical ones at least, they want guaranteed success when tackling an issue. Anxiety? Valium! You will feel like a lifeless blob but no anxiety! My good friend, look up Nichole Sachs' videos and read her book. She's awesome. The topic is JOURNAL SPEAK
For more information on the benefits of LOW DOSE nutritional Lithium, check out this book – "Nutritional Lithium: A Cinderella Story: The Untold Tale of a Mineral That Transforms Lives and Heals the Brain" by James Greenblatt, Kayla Grossmann.
I too feel lost sometimes. I let grief get the better of me. You need to reach out and get out in the world. No one really cares about your trembling arm. There is a local gardening expert that is always on TV and his hands tremble severely. I don’t know if he has PD but it certainly doesn’t stop him from doing his thing.
I was feeling really down earlier this year after my diagnosis. I stumbled across a cheesy post on Facebook- if all around you is darkness, maybe you are the light. But it hit home. During my walks around the neighborhood, I made a point to stop and chat with an elderly neighbor who was feeling lonely. She was still grieving the loss of her husband. Now I routinely visit with her. It helps both of us. And the fresh air and walking does wonders too.
3) in case it may help you feel better, some people were raving about "readi steadi," a device that some report has "stopped" their hand tremor when they wear it (a lady was so happy she could apply makeup again) ... if in the U.S., covered by Medicare
My mother with Parkinson's is the same way. It's hard for her to hear about people in the family passing especially during covid 19 pandemic. Also hearing the news about the pandemic upsets her.She has lots of anxiety.
Think that there are some natural things that can help her and maybe help you.
Like ashwagandha or rhodilia.
You have to look into these things yourself and see if they can help you.
You have to get out of the house.
I hope you have some friends and some family that you can start seeing at least once a week.
Would be good for you to start exercising at least 15 minutes for a start with a brisk walk.
Can you have to find a way to make sure you can get 30 minutes 5 xs a week.
I'm trying to get my mother to move more because she has dystonia in her toes but she is starting to move more and I'm hoping to get her an exercise bike and get her to walk outside more.
From a social standpoint I'm trying to get her to start receiving guests at home. And even visit some of our relatives.
One step at a time I'll be praying for you and I hope that you try to burst out of your shell.
You are not alone! Many of us have similar problems, I have managed to overcome some of them and for others I have changed my ATTITUDE!
Our attitude towards Pd makes the difference between battling on and coping.
I changed my attitude in 1994 and changed my lifestyle, with the result that I have overcome many of my more serious problems and have been medication-free since 2002, It is too much to tell you in this blog. You can contact me at johnpepper@telkomsa.net and I will send you all the info, FREE OF CHARGE!
So sorry to read this. About 3 years ago (?) my daughter took me to see her friend.. a neurologist who is not a movement disorder specialist. It was a late afternoon appointment and my anxiety was high, as it used to be every afternoon. I could hardly hold myself up. She increased my afternoon Madopar after a thorough examination, and I haven’t looked back! My Neurologist wasn’t increasing meds because he believed I have MSA. Bit simplistic for many I’m sure, but I have a periodical phone update with her and that’s it!
I’m thankful my GP is also a good friend and he continues to prescribe the increased dose.
I seized the opportunity to increase my exercise. Much sorrow in my life atm but it no longer “swallows me up”. I go outside on a cold night to look at the stars, watch feel good things on YouTube. Avoid trashy tv. I sit in the sun and feel the warmth of the rays. I Pick leaves from the garden for a vase when there are no flowers.. etc. I wish you every good wish. I love the encouragement on this site I urge you to do something different - when it’s not working…. 🙏
Whenever I get in a dark place, I talk to myself about baby steps and I tell myself to step out the door. This may sound simple but it isn’t. I choose exercise because I always feel better after. Now, because I find my coordination isn’t what it used to be, I pick swimming or walking. But I need to do it for as long as I can and I do better if I predetermine a distance that is as long as I think I can go. I personally need to do this as many days of the week as I can. And I need to do this, I think, forever. I have had to readjust at times for many reasons. I lost my parents and this also threw me into a low place. I found I felt I was alone in the grief but my baby steps helped. It took me about a year to truly get to a better place with the grief? I hope you find what works for you but know you’re not alone and keep trying or keep asking this group. We have all sorts of advice, haha 😆.
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