Does anyone have any views on these three questions?Thanks in advance for your answers and apologies, some of this posted before.
When it's nighttime/darkness it feels as though everything is further away and dimmer than it used to be- as if I'm looking down the wrong end of a telescope. I also feel this a bit during the daytime. I can feel the difference between pre/post Parkinsons diagnosis. Is this something I just have to get used to or can it be improved in any way?
When I think negative thoughts, especially when I'm in bed/half awake trying to summon up motivation to get going, I feel this very powerful sinking feeling in my stomach, and limbs that is incredibly depressing- it's as if a 'deadness' spreads over my body- like nothing I ever experienced before PD. It saps me of every positive impulse I can think or feel and feels 'un-come-back-from-able' in my ability to shake it off. Is this something that others have experienced and is it part and parcel of PD or might it be meds?
I'm on Simemet 25/100 four times a day and diagnosed 9 months ago aged 38.
And finally does anybody have experience of both Parkinson’s and bipolar together. I would love to hear your experiences/chat.
Many thanks
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Tomtom79
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Well, I just got off the phone with my mentor. Had a heavy conversation, but useful. Now I’m trying to stay on track emotionally and spiritually. Answering your missive seems like a way to connect thoughtfully and prosperously, even if I can’t answer your questions perfectly.
I was diagnosed as bipolar II years ago, and I identified with the description of cyclothymia, the up and downs of emotions, the depression and dysphoria, and the happy energetic hypomania. Years later, my current psychiatrist and I both independently came to question the diagnosis (this is not the original diagnosing psychiatrist, but a subsequent one). We both decided that the bipolar diagnosis was not correct, or was no longer was correct -- and I have to say that I no longer feel like I identify with the symptoms or experience of bipolar the way I used to. But I am a highly sensitive person, I do identify with attention deficit disorder, and I do recognize emotions as being a serious thing for me. The medical dogma is that once you are bipolar, you stay bipolar. Maybe that’s true from the point of view of the medical profession. My own experience says otherwise. The depression was real. The hypomania was real. But I don’t have either anymore, really. Not in the same way.
But what I learned from my years of “being bipolar”, certainly helps me with my Parkinson’s experience. Specifically, the emotional awareness I developed, and the skills and capacity for emotional management that I learned -- these are very helpful. There something that includes all that, but which is bigger, too, somehow. Call it the spiritual experience, or the poetic experience. That brings it all home. It's not just emotional management, it's Life you know. Effing Life! There are struggles, there are blessings, and sometimes the struggle is the blessing.
There’s a particular story that I keep in my pocket which carries a lesson that Parkinson’s disease gave me. It was early on, I was diagnosed for about as long as you have been, maybe less. One of my symptoms is akinesia in my right hand and arm. They don’t do what I want them to do sometimes. I have a difficulty in movement. Even then, it made it uncomfortable for me to ride my bicycle. I remember bicycling up a hill one day, feeling the familiar discomfort of the physical exertion with my legs, and the new discomfort of a disabled arm that somehow felt much worse, upsetting and foreboding. I didn’t want it. I just wanted to be better. Which made me want to zone out and disconnect.
My lesson was this. I didn’t turn my attention away from my arm, but rather I turned my attention towards it. I looked at it, and felt to the dismay that I felt. I felt grief that was there which I was afraid would overwhelm me. The grief was palpable. A very real and present sadness. The disability in my arm was real, too, a genuine halo of limitation, difficulty, and discomfort. I looked at the grief, I looked at the disability, and I also saw my arm still had some ability. In the grief didn’t dominate, it wasn’t the only thing.
By looking at my arm, and by embracing the grief that I felt, I was able to then continue my day. To have a full day, full of work and full of life. Meaningful. And I find this is something that I benefit from doing on a daily basis. By confronting the discomfort and disappointment that I feel, I’m able to accept them and to move on with my day. They don’t dominate me. They are still there, but they are just one brush stroke on a bigger canvas.
One of the things that I learned from my years of emotional turmoil is this: How I feel right now is not how I will feel later. I may feel really really bad, but it isn’t permanent. I may feel really really good, and likewise, it isn’t permanent. It is useful to be mindful, because that I am less likely to be caught in a limited viewpoint in this way. Thus, a practice of meditation is helpful, because that helps me to be mindful.
You may be dealing with grief. You may be dealing with wisps of the black dog of depression. You may be dealing with physiological effects of Parkinson’s. You may be dealing with effects of medication. It’s hard to know what is what, but you can start to make sense of it (or at least some of it) if you adopt an attitude of patience and curiosity.
I would recommend looking up the RAIN meditation as described by Tara Brach.
As she says, sometimes there’s a second N, which is for non-identification. That’s just another way of saying how you feel now isn't how you’re going to feel later. It isn’t essential to life forever and ever. Life continues, it is changing and dynamic. That can be challenging, because, as the Buddha said, “this body is subject to old age, illness, and death.” With Parkinson’s disease, we are experiencing some of that illness. But the changeability of life is also beautiful, because it brings us new gifts. It will not be contained. Even if you feel despair, darkness, and immobility, if you hold on, something else will arise. It always does. The sun also rises.
I’m not as sharp as I used to be, but I still have my wits about me. I still can be creative. Thank you for the opportunity to reflect and share. I wish you all the best.
I also recommend the following Chi gung practice. It has helped me immensely with my Parkinson’s experience, physical, emotional, and spiritual. It’s hard to be 100% down when you’re moving in this way and doing such gentle but powerful work.
Daily 17 min Qi Gong practice with Mingtong – YouTube
Thank you, Elliot, for your thoughtful response to Tomtom. I feel that it will be helpful to me, too. My husband had PD and I'm still battling to come to terms with his death nearly two years ago, after 54 years of marriage. Bless you.
Very well said and so true. Things will change back given enough time.
I experienced this when I quit smoking years ago. Somebody had actually figured out how long it took to have a craving. Of course when you're having it it seems like you're going to have it forever and it's never going away but the truth is they only last minutes. I don't remember the length of time anymore but it was very short period of time and once I knew that I could get through it a lot easier and I did quit cold turkey.
Now I have an experience where something changes in my body when I have a hot flash. Before I actually get the hot flash I get very dark thoughts, I get depressed or I get very angry way out of proportion to anything going on and then I get the hot flash. Then my attention goes to the hot flash and by the time it's gone so are the thoughts. It took me a while to figure this all out but now if I start getting weird thoughts that I don't normally have I know a hot flash is coming in I just have to wait it out.
Thank you for such a beautiful and Thoughtful response Elliot! Just the inspiration I needed this morning. I’m going to watch and practice the Mingtong video now. I came off and have remained off medication two summers ago at his Chi Center in New Mexico. So true hat focusing on and moving into the pain and discomfort can be very enlightening. My mother has bipolar illness and I’ve also wondered about the genetic link between the two, bipolar and Parkinson’s. So much to learn and explore, make it a journey of discovery, and have faith to remove the fear. Everything really is OK.
Not sure if it’s the same but I’ve noticed that when I take my meds I feel taller and things seem a little further away. Just yesterday I was wondering if anyone else had that feeling.
Your deadness sounds like depression/anxiety. How long have you had PD?
Thanks for your thoughts. I was diagnosed a year 2 and a half years ago. I’m very interested to hear your altered perception when you take the meds. I hadn’t thought to think that it might be the medication doing that. I’ve found it hard with different health professionals to find out whether the problem is in my eyes rather than my perception. I suspect it’s the perception, possibly a bit of both. It’s horrible, as darkness, views in the dark now seem oppressive and disorientating rather than something to savour/appreciate.
I have a similar feeling mostly as night cones. My depth perception is way off. I also have double vision... from PD. I have a major depressive disorder and PTSD,,,, My entire life. However, don't know about. bi polar,...but happy to talk .
Thank you for this- I would be very interested to chat about the depth perception and night. I find the night time thing very disconcerting as traffic/bikes seem to appear out of nowhere. Have you found any way of compensating for it? The double vision must be very frustrating.
Thank you for responding. I have bipolar 1. Like a Venn diagram overlapping I’ve found that there seems to be an area of experience/perception where the effects of the Pd and the bipolar seem to overlap and cause a whole other kettle of fish/problems. For example I think my bipolar depressions directly affect my physical Pd symptoms. My health care team seem at a loss to respond to these symptoms. I get these very acute and uncomfortable sinking feelings throughout the day, and I’m sure that is the bipolar acting on the Pd. I’d be interested to hear if you have had anything similar. Though I have a good medical team, I feel that they are missing a piece of the picture. Neurologist doesn’t seem to know enough about bipolar and psychiatrist doesn’t seem to know enough about Parkinsons. There is a sort of (very) uncomfortable limbo which has left me feeling isolated and untreated in places. (They are still very good!)
I have a whole list of illnesses aka co-morbidities. Going back to my 20s & coming forward till what is still present today. I had a dark flat malignant melanoma on my left forearm. Surgery took it completely off with a clean margin. That was followed by another session looking for more. Moles, freckles, etc. were cleared with no more to be found, Then I saw a plastic surgeon to have the overall size of the graft reduced. By this time I had a chronic pain problem. They couldn't get it diagnosed properly so they couldn't help me on it for a trip. I was shuffled back & forth between a total of 15 doctors. Finally they diagnosed endometriosus, tried hormony therapy & then took it all out in one fell swoop, in other words a full hysterectomy- ovaries & all. Now, in apx. 1990 I was diagnosed with a very late diagnosis of bipolar 2. Lithium never worked for me. Fortunately, depakote did. I had early cataracts to be cut. I had early diabetes 2. I had bilateral breast cancer with a double lumpectomy followed by radiation therapy. And, then, in August 12, 2012, I was diagnosed with Parkinsons' Disease. I have read of scientific speculation of cluster of co-morbidities. This one would be skin cancer, bipolar and Parkinsons.
Here is a coach that claims that parkinson is more in our heads than we think. And collect good stories about people that get better. So maybe think the other way that it is the bipolar that are the reason for your parkinson. abovezero.robyggeren.dk/201...
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