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    • #20591
      Mary Beth Skylis
      Moderator

      My Dad recently opened up to me sharing that he struggles with anxiety and panic attacks. And he hasn’t outwardly admitted to a struggle with depression. But I suspect he has his struggles. Do any of you struggle with anxiety and depression? And if so, have you learned how to manage it?

    • #20739
      Kate Rodrigues
      Participant

      I have struggled with depression since my teen years. And Parky added another level. I’ve been on anti-depressants as an adult. Anxiety from Parky has added another dimension. The COVID lockdown through me into a deeper cycle of despair because of the loneliness. I’m a people person and gathered much strength from Parky Support Groups. Zoom meeting did not help. Consequently I’m working with a neuropsychiatrist and have adjusted my psych meds which are helping . But it has been a difficult year. I think the anxiety contributed to my lowered scores on a second  round of psychological assessments . Thus, I have  been declared ineligible for DBS. I was hopeful that DBS would allow me to live alone and take care of myself. Right now I take it one dose at a time!

    • #20751
      Clive Varejes
      Participant

      Hi,

      Yes, I do have bouts of depression but knowing that it is brought on by the PD, and no other reason, helps me get through it faster.

      And no I am not prepared to take anti depression medication, as that will perhaps mitigate the immediate symptoms but is not a long term solution . I would rather fight through it myself.

      I do find though, that exercise does definitely help to get the endorphins going which always helps.

    • #20754
      Troy
      Participant

      Yes. My wife noticed the depression before I did. It’s not severe and my doctor is not overly concerned. He suggested that I take up a new hobby that brings me joy, so I created a bird sanctuary in my backyard. It seems silly, but it has really helped. I’m also taking up bike riding again. I’ve only noticed the anxiety issues recently and the episodes are infrequent and sporadic. Right now, they’re typically occurring as I transition in and out of sleep (sleep was a huge issue before l-dopa; better now). Aside from l-dopa and lyrica, I would like to avoid all other medications for as long as possible. As Clive mentioned, I think exercise will be my best weapon against both foes, hopefully exhausting myself out of the energy to wrestle with either. I understand that eventually, resisting the medication may not be an option.

    • #20756
      Robert Li
      Participant

      Mary, I applaud you for paying attention to your Dad’s mental health.  From what I understand, norepinephrine and epinephrine (also called adrenaline) are normal metabolites of dopamine.  Variable levels of dopamine will cause variable levels of norepinephrine and epinephrine, and the body’s (proper) response is to go into fight-or-flight mode when levels are high.  This means faster heartbeat, increased respiration, etc.  So since there’s no provocation, this feels like anxiety.  I’m not sure how this info could help, but knowing this is normal, like Clive says, might make him feel better.

      Depression can be caused by low serotonin levels.  Serotonin production, if I recall correctly, requires short chain fatty acid (SCFA) production in gut, from carbohydrates.  In PD, SCFA production by gut bacteria tends to be low.  You might try helping him with a healthy diet, eating times, etc., and supplementation with a good quality fish oil or algae oil containing DHA and EPA may help.   Also, constipation is bad and if he has, fibrous unprocessed plant foods may help.  I find it helps to keep a log of what I ate and map out when I have my downturns in mood that have nothing to do with events.  Then I adjust my eating schedule and amount of food I eat.  Some meals certainly sustain me better than others.

    • #20782
      Mary Beth Skylis
      Moderator

      Thank you for your kind words, Robert. I think it only makes sense that he’d struggle with both of these things. And the COVID-19 era isn’t exactly helping. Have you linked your depression and anxiety with certain foods?

    • #20797
      Reuben
      Participant

      This is a particularly difficult issue for a number of reasons and probably requires a multiple perspective view on the “causes” of the onset of higher levels of stress, anxiety, and depression. Independent of the contribution of PD itself, medications, food (both timing with meds and the specific nutrients involved) wouldn’t most people experience some degree of depression just being diagnosed with PD. Compounded by the progressing symptoms (both motor and cognitive, as well as functional limitations in performance that ensue – like reading your own handwriting, sleep routines, urinary, vision, speech, swallowing, and on and on, an increase in stress, anxiety, and depression is a reasonable expectation. I agree with all the various viewpoints on this. There is no ONE answer. And with the variability among us in symptoms, progression, etc. as well as how we react, medically and practically, it’s gonna be different to some degree and in a variety of ways for each of us.

    • #20799
      Craig Young
      Participant

      I had bad depression after I suffered a stroke. My psychiatrist gave me TMS. TRANSCRANIAL MAGNETIC STIMULATION. It really helped me. I followed that up with hypnosis which also helped.

    • #20800
      Charles Schiller
      Participant

      I do but it’s not all PD related. I’m 78, lost my wife of  almost 50 years to inoperable brain cancer. It was almost five years ago and it took over five months to the end. No physical pain but she last all ability to communicate, talking, writing. She had fought stage 3C ovarian cancer to a draw, over six yrs, before that. Three yrs later my older son was killed in a grisly home accident. He was 46. And now PD. I’ve been on Lexapro since my wife died. Today my doctor, MDS, said that because tremors in my good hand just began and because twitching of my legs and sometimes upper body, I’m now stage 2. UGH.

       

       

    • #20801
      Robert Li
      Participant

      Hi Mary,

      I an on the autism spectrum, so I’m not sure if what I experience as depression is the usual way.  For me, it’s more like I will lack resilience to normal daily challenges.  For instance, if someone says something bad that I would normally barely notice or laugh at, when I’m in a depressed state that same thing might send me into a downward spiral.  And then I’ll stop responding.

      So if that’s how we define depression to answer this question, I would say there is no food that triggers it.  Instead, a lack of healthy nutritional carbohydrates, like fruits and vegetables, for a couple meals will likely put me in that state.  So having a couple sweet potatoes ready to eat in the fridge for those kinds of situations when I feel my emotional energies draining is important.  Otherwise I will grab some chips and that may help for a brief time, but it’s risky.

      The anxiety is a little harder to control. The anxiety can be more related to timing of L-dopa.  Note that variability of dopamine due to L-dopa can also cause dyskinesia.

      One thing you can do is make sure he has enough vitamin C, for two reasons: to normalize the conversion of dopamine to norepinephrine, and to help break down biofilms made by pathogenic bacteria in the gut.  Paradoxically, if his vitamin C was low, initially anxiety may increase before things settle down.  But I believe having enough (not megadoses) of vitamin C is important.  The other thing is that the “healthier” he is, maybe he can take less L-dopa.

    • #20804
      Robert Li
      Participant

      I forgot to mention, I used the food diary mainly to root out food allergies & sensitivities.  If a food triggers any kind of abdominal pain, you can go back and check if it’s a pretty consistent correlation.  Allergies and inflammation can drive systemic illnesses, starting by messing up absorption of nutrients.

    • #20813
      Robert Li
      Participant

      Charles, I am sorry about your loss and pain you have suffered in your life.  That’s a lot and the PD too. Your posting is a reminder to me that I need to live each day the best I can, and also always work on connections and community while I am able.  Thank you for sharing.

    • #20814
      Robert Li
      Participant

      Reuben, I totally agree there are many factors to depression.  My general approach is to learn as many potential factors and suggestions as I can, and work on what I am able to do in my situation.   In my experience, helping depressed people is much harder, because they often have trouble communicating.

      Mary, I think Troy has really illustrated how important it is for people to feel some sense of purpose and control in their lives.  All of us with chronic illness experience a huge amount of uncertainty about our futures.  Sometimes we don’t even have control simple things, like being able to remember what we were going to say.  So having a hobby where we can create or do something unique, at our own pace, within the limitations of our changing abilities, can make a big difference.

      I had been on SSRIs for more than a decade.  And while they gave me my life back at one point, the long term side effects were terrible.  Luckily, an ND helped me slowly transition to omega 3s and digestive enzymes / probiotics / support, and they worked equally well, without major side effects.  (I had to take a teaspoon a day initially, and omega 3s do thin the blood a bit, which lead to the side effect of red eye lasting for a week, around once a year).

    • #20818
      Toni Shapiro
      Participant

      I very much appreciate everyone who posted on this thread.  Thank you.  Your posts nudged me to think about my anxiety and some depression that has increased this past year.  I find the anxiety most difficult to deal with as I have little control over it where as with any depression that pops up I can exercise it away. I know other people can’t do that so I am lucky.

      ( Charles, I feel sad for what you have been going through.  With all you have endured, the the long term grief alone would be very difficult for me to cope with and I can’t hardly imagine your pain.  I am glad you are on the forum and hope you reach out to others for support.  I wish you well.)

      My anxiety can be brutal.  It’s as if I am on a terrible OFF period even though it is not at a usual Off time.  I can change in a flash when it happens.  I can be looking and feeling good and then when something bad and unexpected happens I start shaking all over, almost fall, off balance, can’t  think how to say what I need to and my speech is off.  Thankfully this doesn’t happen often but when it does it is frightening. My startle reflex is over the top and I pretty much scream and jump at the slightest surprise or things I don’t see coming my way. I don’t expect any answers, it is what it is. I just wanted to share this because I find it helpful to see posts that I can relate to personally so if others have this problem I want you to know you are not alone.

    • #20840
      Cathy Chiaramonte
      Participant

      Yes, for me, depression and especially anxiety are the most difficult part of having Parkinson’s. I was so glad to find this thread because I feel like this topic is hardly ever discussed and it makes it a very lonely experience. I am drug resistant and am fortunate enough to have a psychiatrist who refuses to give up. I have been on so many medications and tried transcranial magnetic stimulation, with no lasting effect. I need to know others know what this feels like and believe it can eventually be managed. I need hope for a decent life.

    • #20841
      Kate Rodrigues
      Participant

      Please know you are not alone. Have faith that a combo of meds will work for you.

      Depression has been a life long challenge.
      Right now I’m on 4 psychiatric meds and take life one day at a time. One dose at a time. I take Parky meds 6x a day.

      Will keep you in my prayers 🙏

    • #20858
      Louis Skip Sander
      Participant

      Before my PD diagnosis, I had a mighty struggle with Seasonal Affective Disorder. When the wintry days came, I would just shut down. Exercise helped some, but I primarily relied on light therapy. I had a “grow tent”, used by pot farmers. Inside I had a chair and two very bright therapy lights. That setup was pretty helpful, but the seasonal depression continued. When Spring came, the depression went away. This went on for at least ten years, as I recall. It was VERY unpleasant.

      When I was diagnosed with PD, the seasonal depression went away! It was as though the PD replaced it. The reason I mention this is that I’ve met a few other people who say their PD is diminished when they start bright light therapy. Interesting.

    • #20862
      Robert Li
      Participant

      Friends,

      I will credit much of my recovery from dystonia to increasing my vitamin D levels from a historically low <20 ng/L to around 70 ng/L.  Vitamin D helps protect the dopamine channels from oxidative stress damage, among other things.

      There is a significant amount of University research indicating that adequate vitamin D levels can reduce PD motor symptoms.  For example: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7267215/, which summarized some highly technical scientific reviews with:

      While more research is needed, given the numerous potential benefits and limited risks, vitamin D level assessment in PD patients and supplementation for those with deficiency and insufficiency seems justified.

      The goal of taking vitamin D could be to reduce motor symptoms enough to allow reduction in L-dopa dosage, especially if your anxiety is tied in time to your L-dopa and OFF periods.

      The connection between L-dopa and anxiety is: L-dopa temporarily increases dopamine.  Some of the dopamine is used for motion, and some is converted to adrenaline.  This conversion is normal and necessary, but if the dopamine levels vary too much, then so does the adrenaline.  The adrenaline can cause you to sweat or raise your heart rate unexpectedly, and put you into fight-or-fight mode, which results in anxiety.  Low adrenaline can cause a low-energy anxiety, which feels like dread, for lack of a better description.

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