[Kathleen Ernst]

Laughter is good for the soul and a distraction from anxiety and depression🙂🙃

[Kathleen Ernst]

It is not my favorite term because PD does not define. At the same time I can understand someone using the term for themselves or as a support group but definitely not for an outsider to label us. I find that Humor can be a tool in dealing with PD and it helps me and my family and friends to not be so serious, I still need to joke and have fun. My niece made me a nightshirt that says Always on the Move and my nephew will ask if I want a martini Shaken not Stirred. I realize that may change as my PD advances but for now it helps me to laugh.

[Kathleen Ernst]

My heart aches for you. I saw this post and it pulled on my heartstrings and wanted to respond. I am not a caregiver, I have Parkinson’s. Apathy and Depression can both be an issue with Parkinson’s and can be overwhelming to the patient as well as you the caretaker. I didn’t want to see a psychologist, thinking I was handling my Parkinson’s well. Fortunately for me I saw a psychologist that specializes with neurological disorders and I was able to do it by zoom so I didn’t have to take time going there and back and I could stay in the comfort of home. I was so blessed through my year of therapy and it helped so much with depression and anxiety—overcoming feeling worthlessness and being a burden as well as fear of others reactions to me because my slow processing speed really impeded me being able to easily communicate. I also took part in a group of individuals on zoom—so helpful to actually talk and meet others to actually talk/zoom about issues and that I was not alone. I read recently that less than 20% of those with Parkinson’s suffering from depression seek out any help.

I believe Michael J Fox group has groups as well for caregivers. I don’t know if you are a person of faith but there is a group “Joni and Friends “ that deals with Disability and they have a lot of resources of churches and groups for support for those with disabilities and for caregivers. I hope this helps.

[Kathleen Ernst]

I have struggled with depression intermittently most of my life and, knowing what I know now, I also had issues with mild anxiety but then I contacted COVID in early 2021. From the beginning of COVID I struggled with fatigue and within a few months I had severe anxiety issues and within a month of that I was diagnosed with Parkinson’s. What helped me most was seeing a Psychologist who specialized in neurodegenerative diseases.

Our discussions and my homework allowed me to dig up bad thought patterns and work on changing them. I have always struggled with low self esteem but diagnosed with Parkinson’s intensified those negative feelings and fear of being a burden. I highly recommend seeing a psychologist in order to learn tools/techniques to better handle the feelings and stresses that occur from Parkinson’s, keeping thoughts and fears in check so as to not go down the rabbit hole.

On the most part now, I can see the anxiety starting to build and take actions to keep it from escalating, whether that’s taking a time out, taking a short walk or working on a puzzle—things that keep my focus on the present

[Kathleen Ernst]

Hi Dick,

It can be frustrating to deal with changing symptoms and with people that don’t understand but give advice. These passed few years for me has been dealing with long COVID and a new diagnosis of Parkinson’s and between the two, I have been dealing with all different symptoms and no one day is alike. The one thing I have learned is that none of us truly understand what another person is dealing with unless we are experiencing the same thing whether that’s Parkinson’s, cancer, migraines, autoimmune just to name a few, and I’m constantly learning to be patient, listen, be empathetic to others and forgiving when others don’t understand. Doing this has helped relieve me of stress which is healthier for my Parkinson’s.

[Kathleen Ernst]

Yes, a friend of mine has several autoimmune issues dealing with pain and fatigue. We overlap in some symptoms and we both have tried to understand the Whys and to make sense of things. I have learned to more accept each day as it comes and to learn to adjust to make the best of each day and to accept that some days are just not good days. It’s also allowed me to be more accepting of myself and others as we are all dealing with something whether it’s physical, mental or emotional. Giving ourselves and others grace is so freeing and healing❤️.

[Kathleen Ernst]

I was suffering from Long Covid when I was diagnosed with Parkinson’s. Apparently I’d had it for awhile and the stress from COVID intensified my symptoms. Between brain fog, fatigue, REM sleep disorder, depression and new Anxiety, I was no longer handling the stress of my job nor able to physically do my job. Within a few months I went out on disability which helped me reduce stress, allow me to get involved with a physical therapy group that specializes in neuro disorders and has psychologists and OTs that really helped give me the tools I needed to manage my depression and anxiety. While I would have been better off financially to stay working, I am so thankful that I am now officially retired and feeling so much bettter for using the energy I do have to focus on staying active and enjoying life to my fullest while my PD is still mild.

[Kathleen Ernst]

I haven’t had a cold in the two years since diagnosis but I got diagnosed within months of getting COVID. Dr said the stress on the body from illness probably brought my symptoms forward. I have had my symptoms increase after getting over heated and after having surgery so I try to keep my emotional and physical stressors to a minimum.

[Kathleen Ernst]

Hi JB
Because PD affects everyone differently it’s difficult to know the source of frustration in communications. For myself I have brain fog issues when I just can’t process what I’m reading or hearing and that triggers my anxiety and depression. I have been seeing a psychologist, for the past year, who specializes in neurological disorders which has been very helpful in my communications, in reducing my anxiety or helping me from escalating and has allowed me to better accept my challenges and to give myself grace. It’s also helped me to be more aware of how I’m feeling and when it is or isn’t a good time to tackle projects, problems, decisions or conversations. I’ve also found that days of greater fatigue are not good for my cognitive processes.

[Kathleen Ernst]

Hi Elaine
I have not tried any prescription medications other than Sinemet. I did however start taking a prebiotic/probiotic/postbiotic after reading articles about PD and gut health and brain fog. I still have brain fog but not as severe and I’m now on Duloxetine for depression which has increased some energy even though I still struggle with fatigue. The thing that helps me most with fatigue is pacing myself/taking a lot of breaks—I’ll set timers as a reminder to take my breaks.

[Kathleen Ernst]

Hi Elaine
I have not tried any prescription medications other than Sinemet. I did however start taking a prebiotic/probiotic/postbiotic after reading articles about PD and gut health and brain fog. I still have brain fog but not as severe and I’m now on Duloxetine for depression which has increased some energy even though I still struggle with fatigue. The thing that helps me most with fatigue is pacing myself/taking a lot of breaks—I’ll set timers as a reminder to take my breaks.

[Kathleen Ernst]

I really liked what she had to say.  I’ve dealt with depression off and on most of my life but I never considered myself to be an anxious person.   In January of 2021 I came down with COVID and returned to work about 3 weeks later still very fatigued and brain fog. Within a couple of months I still had my COVID symptoms but I also became very anxious, I started stuttering when talking with people under stress my speech was slow and my thought process very slow and my left hand and arm would tremor and get worse as stress elevated.  Long story short, after seeing a neurologist, receiving trial medication, having a Neuropsych exam, I was diagnosed with Parkinson’s, depression and anxiety.  I wasn’t put on any meds for depression/anxiety at the time due to conflict with other meds but I did start seeing a psychologist for the recommended CBT therapy.  It was slow going at first but still helpful but when I changed therapist, due to change of insurance, my current therapist combined CBT and other styles of therapy that has really helped me so that I’m handling the depression and anxiety so much better and I am learning to communicate better and to read my body signals so I catch myself before I escalate.
‘Through therapy I’ve learned, and continue to learn, that we all have junk in our lives and if we don’t learn healthy ways to deal with it then emotions and negative thoughts build up.  For me, after  long-COVID and then being hit with diagnosis of PD my struggles with worth and value just sucked the air out of me as I thought of the hardship I’d bring on my family over time and I started comparing the abilities of the new me vs the old me. I am better now—as my therapist reminds me this is a practice  not a destination—at allowing myself the grace that I would so easily give to others and acceptance that I am still Me. My PD, anxiety/depression don’t define me but they are a part of me and when I become stressed my PD symptoms get worse so my relaxation techniques and my mindfulness  meditations help me to reduce the stress.   Therapy takes a lot of work and can be emotional as you dig deep but I would recommend to all who struggle!  I personally like zoom meetings with my therapist so that I don’t have to spend time getting to and from sessions and if the session is more emotional, I am already at home but I do know others who prefer in person therapy. The great part is we have a choice!

[Kathleen Ernst]

I  use walking sticks now as I have balance issues. I was originally using them only on incline/decline but my PT suggested I use them all the time to not only help my balance but keep my arms moving and it helps to keep the core activated while walking. I’m now doing more because I have more confidence especially when having to step up on curbs or when on uneven surfaces.

[Kathleen Ernst]

I had COVID Jan 2021 before vaccinations were available and before my Parkinson’s diagnosis. My sense of smell was already greatly altered but after COVID I lost all sense of smell except chemical smell like diesel fuel exhaust. My sense of taste has been altered in that everything tastes overly salty or overly sweet. I still suffer from fatigue and especially fatigue from exertion! Brain fog, focus, reading and conversation comprehension and memory recall were bad for the first year and is still not normal but improved from constant work with brain games. About 2-3 months after having COVID I started having issues with anxiety and later difficulty with speech and slowness of speech and thought processing and then the tremors on my left side hand/arm. I was later diagnosed with Parkinson’s which is believed that the stressors from having COVID aggravated unknown pre-existing Parkinson’s.

[Kathleen Ernst]

I didn’t get diagnosed with Parkinson’s until a few months after I had COVID and the fatigue from exertion is still an issue for me 18 months later. I also had worsening of depression and have had issues with anxiety.

All my doctors say it’s very complex because stress aggravates Parkinson’s symptoms and COVID syndrome can cause some of the same non motor issues as Parkinson’s.  A family member also has COVID syndrome and still struggles with sleeping a lot through her day. Sounds to me that your husband is struggling similarly. If your husband doesn’t show improvement you might consider asking to see an infectious disease doctor. They have more insight to COVID and will run blood tests to see if there are issues of inflammation that can be playing a roll.

I still struggle but I have found some support that is helping:

anidepressant for depression and helps with some energy

psychologist to help with depression and anxiety. I see one on line specializes with neurological disorders

Exercise—learn to pace. It may be in 5 or 10 minute intervals. That’s ok

last one is for you, if you have a friend or family member that can help give you a break so you can do something fun for a short while or some time to decompress.

[Kathleen Ernst]

Recently, I forgot to take my meds because my schedule was off, and I went to the jacuzzi in my complex. Tremors were very amplified and it was a challenge walking home. I am so grateful that that is not my norm in every day life and yet it is a somber reminder of times to come, and also a reminder to focus on today and live each moment.

[Kathleen Ernst]

I have not had to give up driving yet and hopefully not for awhile. I have changed how I drive, I will not drive freeways at night and I prefer not to drive at night at all. I do not drive when I’m feeling tired to any extent and I no longer listen to the radio while driving, I find it very distracting now and I don’t like driving to areas that are unfamiliar to me. I know there will be a day that I give up driving. I gave up driving in my early thirties due to vision problems, I was born with cataracts and my peripheral vision changed where I no longer felt safe driving. After having surgery on both eyes, I still didn’t drive for years. It was nice not having car payment and insurance costs!  Like Tony, I used public transit everywhere and I too found it nice to relax, meet people and enjoy the view. I wish you the best

[Kathleen Ernst]

Paulette, Cognitive Behavioral Therapy (CBT) is basically retraining your thoughts and behaviors so that your negative thought patterns and your negative behavioral responses to circumstances become more positive or neutral, allowing less emotional and physical stress and reduction of depression and anxiety.

one example: you ask your supervisor a question and they respond in an agitated manner.  Negative thought pattern—they don’t like me—I can never do anything right—I’m a failure and the behavioral response is to withdraw, avoid, get angry and slam the door behind you…Or the thought pattern can be they seem stressed today must be having a hard day—behavior not self critical