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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.

      • #22529
        Marlyne Wilder
        Participant

        I think a bird sanctuary is wonderful. I enjoy watching our birds at the feeder.
        Three years ago I bought a new bicycle- plain, not with handle brakes,etc. I would ride up and down my road. After a year, I Lost control of my balance and rode to my left. Gave away my bicycle. I also used to use an elliptical and treadmill which are set up in my basement. Had to stop that for same reasons. Now I use a recumbent bicycle for in-home exercise.

        • #24155
          Corrie Trattner
          Participant

          There are adult tricycles that also have a basket to carry things.  You won’t go as fast as on a regular bicycle, but it may be an alternative to not biking at all.  The need to balance oneself would be much less.  I don’t know if there is a place where you live where you can try out adaptive bikes prior to purchasing one, but it may be something you can investigate.  There is an organization in Western MA called “All Out Adventures.”  They have several different kinds of adaptive bikes.  Perhaps you can look them up on line and get suggestions, especially if you don’t live in this area.  Good luck and stay positive.  I think the bird sanctuary sounds fabulous.

           

    • #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.

      • #22531
        Marlyne Wilder
        Participant

        Robert, I respect how organized you are. It sounds like it works well for you.

    • #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.

      • #22532
        Marlyne Wilder
        Participant

        Thank you for mentioning TMS. I’ll be checking into it. I’ve had depression since the late 1980’s. Meds were changed about 6 times. Now taking 3 antidepressants daily morning, afternoon, and evening.
        I’ve been hypnotized for smoking cessation, weight loss, and childhood memory issues. I hadn’t considered hypnosis for depression.
        Did your medical insurance provider pay any portion of the TMS therapy or hypnosis? I have Medicare, UMR family plan, UMR single plan, and Tricare.
        Diagnosed Parkinson’s 10/2017 at age 64.

    • #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.

       

       

      • #22534
        Marlyne Wilder
        Participant

        Charles, it sounds like you’ve had a challenging life the past few years. Remember that you have friends here to support you!

      • #22540
        Mary Beth Skylis
        Moderator

        Charles, I’m so sorry for your pain. Like our other community members have expressed, you’re not alone. And if there’s anything we can do to help, please let us know.

    • #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.

      • #22539
        Mary Beth Skylis
        Moderator

        Cathy,

        I’m so sorry that you’ve been suffering alone. One of my frustrations with anxiety and depression is that it isn’t often talked about. Or sometimes it’s still stigmatized. But I think that if we begin to talk about it, it’ll become normal. How are you doing these days?

      • #22566
        sandra wilkinson
        Participant

        Hello Cathy, like you I suffer from anxiety and this year from depression too.  I think Covid caused it to get worse as I didn’t go out and when I could I had lost all my confidence.  Over the past years I have tried so many meds with none of them helping – side effects were worse.  I have found a wonderful PD Professor who recently admitted me to hospital for a week to observe how my meds affected me.  He increased my Sinemet and lowered my anti-depressant Mirtazapine.  When I’m over the trauma of hospital – I just get so anxious when I go inside them – I hope I will have days when I do not cry and my eyes can stop looking red all the time!

    • #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.

    • #22522
      derrickmyle
      Participant

      Yeah, I had suffered anxiety problems a few years back which leads me towards depression afterward. I tried many coping strategies on my own but es, of course, I seek professional help but didn’t work for me. Until I fund this https://ezcareclinic.com/methods-to-cope-with-anxiety/?utm_source=forums&utm_medium=referral&utm_campaign=organic_users&utm_id=Op.1201and took combined treatment (therapy session
      + Medication) and trust me it worked really well for me. And now I am perfectly fine. Please have a look into this I am sure this will be helpful for you too.

    • #22551
      John Bredenkamp
      Participant

      Wow, this question sure elicited a lot of response. Fortunately I don’t suffer from depression, but have found myself feeling pretty sorry for myself on occasion, especially since I’ve been biting the inside of my cheeks when talking somewhat, and then struggling for about a week while the bites heal. So I’ve tended to rather listen more than talk. I do however have moments of unexplained anxiety, almost as if there is a foreboding of something about to happen. Only fleetingly, but it is there. Someone mentioned “startle reflex”. This has caught me by surprise: the oddest sounds, or someone walking past and calling out to say hi, or someone coming up to me and laying a hand on my shoulder as part of a greeting causes me to jump, literally. My poor Pilates instructor felt so bad when she tried to help me do an exercise and touched my back causing me to really jump!

    • #23733
      Alfred Kramer
      Participant

      After contacting a doctor, it is best to undergo a course of psychotherapy. With depression, cognitive, emotional, and behavioral problems are observed.

    • #23744
      David Dorsey
      Participant

      We must not ignore medications that re-balance the brain chemistry….. which has been altered by Parkinson’s.

      Let’s be honest..life with Pd sucks..!!  Unless we are ready to deal with this reality we can’t begin to challenge irrational thoughts.

      Personally ..anxiety is a physical experience with pounding heart and raised blood pressure. Fresh air and a bike ride is my go-to remedy. If being outdoors is not an option , I lay in a quiet place and take deep breathes with my eyes open. Being alert to the space we occupy is important.

    • #23753
      Gauri
      Participant

      As a matter of fact I started feeling depressed nearly 5 years prior to being diagnosed with Parkinson. Naturally that time I was neither aware about depression as a mental disorder nor did I know anything about the pre-parkinson symptoms.
      11 years after being diagnosed with Parkinson, I still suffer from depression and anxiety. I went to a psychologist and psychiatrist and tried various drugs in order to treat depression anxiety.
      “How long can one keep taking these medicines?”I asked myself. I gradually decreased the dose and stopped taking anti-depression tablets.
      I have found out how to deal with anxiety in depression. There are 4 important things that I follow….
      The first one is, I consciously develop positive thinking.
      Secondly, I have faith in God and I believe that my regular prayers will help me build up endurance.
      The third way I deal with the situation is, I focus on my skills and potential and try to pursue my interests in life so that it keeps me going through hard times also.
      And the fourth way I deal with depression is by developing a sense of gratitude in myself. It always help me fight with adversities in life.

    • #23758
      Alfred Kramer
      Participant

      After contacting a doctor, it is best to undergo a course of psychotherapy. With depression, cognitive, emotional, and behavioral problems are observed. Usually, people have a special style of thinking that most often supports the disease — and if you do not find and eliminate distortions in thinking, do not work out negative views on yourself and life. A person can experience episodes of depression again and again. It is also important to actively work on improving self-esteem since, most often, people with depression have a problem in this area. Talk to your doctor about treatment options.

    • #23771
      Clive Varejes
      Participant

      Wow, the responses have been amazing and incredibly informative, thanks to all.

      Charles, there are actually no words, however it is amazing to see how well you are coping, that takes an extremely strong mind and will. I’m not sure how many people would have coped as well as you have.

      Please remember that anxiety and depression are basically first cousins and if you suffer from one, the likelyhood that you will suffer from the other is virtually 100%, as they feed off each other.

      As regards the anti depression medication. obviously it affects each of us in different ways as does PD. The “basis” is the same but there are always differences, in the medications themselves as well as how different people react to the effects.

      As I suffer from seizures, not as bad as epilepsy, but again first cousins, I do know that the body builds a tolerance to any drug and in time you have to increase the dose, and eventually, once you have reached the limit for that one, go onto another, where you need to decide which ‘side’ symptoms are the easiest to handle. I have had to do that a few times already, I have had seizures for about 20 years now. So I go onto another for about 9-12 months, then can go back onto my prefered one.

      So as I said, I will keep away from any anti depressants as long as I am able.

      As I stated before, I am excercising, gym 2-3 times a week and cycling around the beachfront 2-3 times a week.( I alternate, depending on how lazy I am.) I do not cycle far maybe about 15kms /9.5miles at time, but it does allow me to watch the waves in the sea, swelling and abating and crashing against the rocks and it does calm me down.

      I used to scuba a lot around the world, and being under the sea, usually at about 15-20 metres/ 65 ft down, (and about 30m-35m/100-115ft for wrecks), watching the myriad vibrant colours of the fish and corrals, and occassional crabs, lobsters etc and at times, if I am lucky dolphins & manta rays & sharks &………………. Forgive me, I am trying to relieve something I obviously cannot do any longer…………………..oh well.

      I do find that the exercise definitely helps in mitigating the symptoms, in that the tremors honestly do abate a lot. I find the tremors increase when I am hassled.

      I also counseled for Suicides Anonymous and Life Line, and so realize that perhaps I am not as “badly off” as I may think at times.   B-)

      I do take 1000mg of Vit C and 1000 mg of Vit E a day, which I think help.

    • #23809
      Lilian McLean
      Participant

      You know, I had such a period of my life. Depression is a serious and severe mental disorder that is difficult to overcome on your own.

      • This reply was modified 3 months, 3 weeks ago by Lilian McLean.
    • #23847
      Lilian McLean
      Participant

      It is manifested by inhibition, decreased performance, loss of good mood, joy and desire to live.

      • This reply was modified 3 months, 3 weeks ago by Lilian McLean.
    • #23876
      Lilian McLean
      Participant

      <span data-sheets-formula-bar-text-style=”font-size:13px;color:#000000;font-weight:normal;text-decoration:none;font-family:’Arial’;font-style:italic;text-decoration-skip-ink:none;”> It is manifested by inhibition, decreased performance, loss of good mood, joy and desire to live.</span>

    • #24150
      Yekim7676
      Participant

      yes, I csn set my watch by it. Comes on at 3:00 PM waes and then returns attenated around 6:00. No fun.

      • This reply was modified 2 months, 2 weeks ago by Yekim7676.
    • #24156
      Paul Hojuson
      Participant

      There are 2 ways that I’ve personally found effective: First, ignore what everyone else says or thinks, their opinions are not relevant for the most part; and, second, be involved in some activity to such an extent that I forget all about Parkinsons’.

      I keep on telling myself that I am unique and the opportunity to do anything or go anywhere my mind takes me. I want to hold on to an optimistic outlook as my personal mantra, set goals and go for it, whatever it may be.

    • #24164
      Jennifer Blackstone
      Participant

      I do suffer from anxiety and depression but they came about in really different ways. I first started having motor symptoms in 2008, I was diagnosed in 2011.  Thinking back, my sense of smell preceded my physical symptoms by at least five years.   In 2008,I went on an antidepressant (cymbalta)  which I thought was stress-related. The rest of my life was good.  I think the depression was related to on-coming PD.

      My real battle came in the form of near-daily PANIC ATTACKS!  In April 2020, I was starting to tail off.  I was taking a dopamine agonist and 4-5 Sinemet per day. My doctor prescribed Rytary and started with 3-4  a day, and then upping it every week. My agonist was tapered off in two weeks during April under the assumption it was interfering with Rytary.  Also, t he Rytary made me felt <span style=”text-decoration: underline;”>horrible</span> but was encouraged to ‘ride it out’, and it would get better.  After 4 wks, I ended up in the ER with my first ever panic attack.  I was hyerventilating, my arms and hands were like claws, My cell phone died about 1 h0ur into my 3.5 hr wait in a large, empty, concrete room that was there to hold many expected covid patiemra

    • #24456
      Ken Aidekman
      Participant

      Yes I struggle with anxiety and depression. I’ve been generally depressed all my life. I had one episode of clinical depression when I was 19. I benefited from psychiatric counseling and electroconvulsive therapy.

      During my clinical depression I learned that my father had a similar episode and I was seeing the same doctor he saw some 15 years earlier.

      Since taking Venlafaxine my depression is under control for the most part.

      Around 2015 I began to have episodes of anxiety and mild panic attacks. I now believe these were early Parkinson’s symptoms. I was diagnosed with PD in 2019. Looking back at my father’s PD diagnosis and symptoms he faced I also believe he suffered anxiety as a PD related symptom along with life-long depression.

      I have made significant progress in dealing with my PD related anxiety. I’m fortunate to have an understanding wife who helps me face my worries and very good advice from friends who have lived with PD much longer than I have. They told me that my number one priority in treating PD should be to reduce or alleviate stress. Since concentrating on that aspect of my disease I’ve been able to gain better control over my symptoms.

      Good luck.

    • #24515
      Gauri
      Participant

      Yes I suffer from anxiety depression nervousness stress a lot. 5 years before I was diagnosed with Parkinson ice started experience in depression. Sometimes depression get s to a great height and I have no control over my actions and emotions and I make mistakes for which I regret later.
      I am have been on anti depressants for the past 10 years

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