January 27, 2020 at 6:05 am #17292
A Parkinson’s diagnose is scary for everyone who is involved. It brings alot of changes into our lives (and sometimes very quickly). But we don’t always think about the changes that happen for caregivers.
As a caregiver, how has your life changed since the diagnosis? Have you adjusted your work schedule? What other habits or routines have shifted in your life?
January 29, 2020 at 9:35 am #17673
In many ways. I was diagnosed 10 years ago and I’ve watched the progression over those 10 years. It seems like my biggest concern is about my career.As I may have mentioned before, I work as a professor, which allows me to work at home much of the time and to cut back from my long hours that I formerly worked. Due to symptoms,I am anxious about going into class, fearing that my tremor will return and the other symptoms like the “foggy brain” phenomenon.
I’ve gotten some help with accommodations at work like having a teaching assistant in all my classes to take care of the details which overwhelmed me. But I am intimidated from engaging any major complex projects. So I cut back as best I can. But I enjoy the work that I do and the meaning it gives to me. My brother says that I should retire but that doesn’t feel like an option. Maybe he’s right.
I also am hesitant about engaging in events, not being sure how I’ll be, whether it’s going to a concert, the movies, or a party. I fear disappointing friends and then being less involved with me. So I try to keep up via text or phone calls and selective social events.I am generally very outgoing So that is a change.
Due to the dopamine deficit, I don’t have the same zest for things that I had. For example, I like to watch sports and I don’t have any excitement about that.
To balance what seems like this tale of woe, I should add that I do enjoy things on some level and I try to not think about the apathy. In other words I try mindful awareness of being in the present moment and appreciating that, such as seeing the sunshine outside the window, the taste of coffee and sweets 🙂
What has remained the same are my social skills and my cognitive abilities. One of my strategies is, “you’ve got Parkinson’s. Get over it.“ I don’t mean this is easy or to be glib but it’s a process of accepting it for life instead of regretting or fighting it. I have no choice! Except in how I focus on the present and the gifts in my life. They include the support of people in my life.
Oh and I see a counselor for Acceptance and Commitment Therapy. She is part of the neurology office that I go to.It helps remind me how to stay engaged and be in the present.
January 29, 2020 at 1:21 pm #17688
It sounds like you’re managing PD in the best ways that you know how. I don’t think anyone can ask for more than that. I’ve often felt that hanging on to the things that give us meaning can give me strength to get through the hard parts. But it seems like you’re finding meaning in a lot of things. Have you found that counseling has helped?
January 30, 2020 at 8:17 am #17695
Yes. Acceptance and Commitment Therapy (ACT) is a mindfulness based approach. It emphasizes being present in the moment and being with it rather than fretting or being in the future or past. It is so easy to slip into, “how are used to be when I was without Parkinson “or “why me?”. With ACT One dozen try to dispute those thoughts but rather moves into a present tense mindful breathing focus. Kind of like intentional forgetting of what your mine was doing. It is considered a third wave of behavioral counseling.
January 30, 2020 at 2:53 pm #17703TinaParticipant
My neuro told me to make a conscious effort to try to focus on a thought instead of trying to get everything done on my list. I was always proud of how I got everything done. Now at the end of the day I still look at what I accomplished, but I know if it’s more than three things I was too hard on myself and I’ll have a hard time sleeping. So I’m learning how to scale back as I don’t want to become anxious
January 31, 2020 at 1:06 pm #17719RoyParticipant
My hubby was diagnosed with PD in 2017. He was already retired, but I was still working as a teacher. My days would start at 6:50 and I did not return home until 4 or 5 o’clock, with paperwork to do in the evenings. In addition, I was caring for my elderly parents who were living in an Assisted Living facility. By January of 2019, both parents had passed and my husband had too many days where he wasn’t safe at home alone. So, I decided to retire a bit earlier than I had expected. Due to RLS, there are a few days per month that we sleep only a few hours a night. Retiring has allowed me to rest up after nights like this rather than running myself ragged. I have become the sole driver, as it isn’t safe for him to be behind the wheel anymore. I must be with him in a doctor’s office, as he is easily confused with directions or instructions. His anxiety can keep us from going certain places. I try to encourage him with reassurances that if he becomes uncomfortable, we will leave. The biggest problem with that relates to his struggles with constipation. It can take him an entire day with multiple trips to the bathroom before he can find relief. For all of these symptoms, he takes medicines, supplements, teas, lots of fiber and exercise. My new full time job is making sure I am there to support his physical, mental, and emotional health. I feel okay with this new normal because I am so lucky to have had him on my life. It is my time to give to him.
January 31, 2020 at 1:20 pm #17720
Do you still manage to find ways to take care of yourself as your relationship changes?
January 31, 2020 at 1:37 pm #17721
I am hearing wonderful dedication as well as a reminder to do self-care. Today I have a list of about seven things I wish to accomplish but I went into an off mode good morning and couldn’t type for my work not really drive and jump around doing errands. I decided to just be slow as what it was. And wait for the meds to kick in. There’s a really good blog called perky Parkie In which she reminded us to get half the things done we once did. That’s very hard for me, as I make a list every day. But breaks in between, especially when you’re off, are really important. I never took breaks until the evening. I also try to contribute to doing things that I can for my spouse, to make it more even. But we’ve only known each other for five years and I don’t have that record of past contributions in the bank. So I try to push myself – She likes to travel and I find it quite challenging after 10 years from diagnosis. I am sitting here in the middle of the afternoon trying to get my meds to kick in so I can drive around doing a bunch of errors!
January 31, 2020 at 5:16 pm #17724
I try to remind myself that some days are going to be better than others. Which means that its okay to shift my expectations. But it sounds like you’re taking steps to re-adjust and re-orient yourself to suit your needs. And that’s great. Do you feel like you’ve begun to find a balance between pushing yourself and resting?
February 2, 2020 at 7:57 am #17728
I have a specific question or comment that I’d like to hear from others about. Upon awakening, I burst into tremors right away, even if I had taking my sinemet an hour earlier and gone back to sleep. What do people do in the morning on first awakening? One thing is to worry about things as I feel the tremor start, which sometimes do.(“Oh, another day if this.“) What I am trying to do is a twenty-minute meditation in bed when I awaken. I’ve tried series of Parkinson’s affirmations also, lying there for about 30 minutes listening to them.
February 2, 2020 at 1:02 pm #17730RobertParticipant
For what it is worth I share the following.
I see some similarities in our PD. I never really had a tremor, just really stiff and slow and unsteady. It took over a year to finally get my “pills” right in regards to the dopamine deficit. Part of my medication solution was to make sure I have 24 hour 7 days a week full Sinemet coverage. We also added pills to deal with low blood pressure caused by the PD and the high Sinemet dosage. My doctor said some of my fuzziness in the afternoons was because of lowered blood pressure – Orthostic Hypotension. I never had dizziness or falls from low blood pressure, just a feeling of brain fog and just not feeling right. Those low blood pressure pills help. But I believe the one last medication that the doctor added really helped me to confidently get back to my normal activities. It has brought my former “sharpness” back. Two Cymbalta a day. (I had never taken such pills before – I am 66 years old). It took about thirty days for them to kick in, but they have helped to restore some of the sharpness that was fading away. I still work 10 hour days running a financial firm. I clearly need lots more sleep now than I ever took time for before the PD. But I am back to my old work schedule now and feeling good about things.
February 4, 2020 at 1:44 pm #17736AllyKeymaster
Hi Garrett, have you found the affirmations to be helpful? Where did you find them or did you write them yourself?
February 4, 2020 at 1:47 pm #17737AllyKeymaster
Your hubby is blessed to have such a loving and supportive partner in you, Roy. The strength of your relationship is a beautiful thing. I hope that you both find some relief for the many challenges you’re facing together. What are you doing to take care of yourself?
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