I read my horoscope in our local newspaper on a pretty much daily basis and most days I get a good chuckle out of it. Today, for example, I am told not to be envious of what a friend might have but go and get it for myself. Seriously? But, occasionally whoever writes the predictions strikes a note. I have one such clipping hanging by my desk and I’d like to share it with you.

“If you never let the pendulum swing, you don’t get the rebound energy. You don’t get restored you just keep getting stretched thinner. Rest isn’t about a break from progress- it’s what makes progress possible.” (From Your Horoscope By Holiday Mahis of Creators Syndicate, published in the Columbian Weekender Edition, August 23-24, 2025)

Wow talk about prophetic! As a Parkinson’s CarePartner, I need this reminder on a regular basis. I especially like the part that talks about getting stretched thinner, I certainly know how that feels. There is never enough time, I always feel like there’s more to be done. It’s so easy to get caught up in everything we have to do that I forget all about the things I want to do.

Today I am going to try and let my pendulum swing, even if it’s only finding moments of rest to gather up some of that rebound energy. Let’s see where it takes me.

Psychology Today defines Mindfulness as “a state of active, open attention to the present”. I always thought that meant formal meditation, a tool that has always escaped me. My overly active mind would not stop thinking and shut down no matter how much I tried to push those random thoughts away. It was when I broadened my thinking to include activities that tie me to the present moment that I was finally able to understand and appreciate the experience of being mindful.

I was participating in a breathing exercise once when it started to click. If I focused on my breath and how my body felt instead of trying to clear my mind entirely I was able to relax for a brief period. I found another opportunity during a movement class I attended with my husband. The instructor would take us through a stretch and then encourage us to stop and think about how our muscles felt. It felt great being in the moment, I was being mindful and didn’t even realize it. Maybe my practice needed to include some kind of movement?

Guided yoga has become my weekly mindfulness routine. I listen to my trainer and focus on following her instructions with my body. I have to stay physically and mentally connected to each moment, each breath. The lesson always finishes with Savasana, or corpse pose, where she calmly talks us through a full body check-in. For that 50 minutes the challenges I face as a PD CarePartner don’t exist and life is just about connecting with me. Self-care at its best.

The first time I visited our local Parkinson’s support group I was overwhelmed by the diversity in the room. There were people at all stages of the disease and their CarePartners. Some were in wheelchairs, some used walkers, some were very mobile just like my husband. The most important thing that I found that day was that we were not the only people in our home town facing this challenge. It was eye-opening and wonderful to see that there was a community welcoming us, offering understanding and support. Thanks to our regional Parkinson’s Organization, we were not facing this alone.

Through this initial contact we learned of local classes and resource fairs. We found boxing classes that my husband enrolled in and our community expanded to include his fellow boxers. He became involved in studies at the college where we found more connections. On our own, we discovered webinars and other on-line opportunities to learn more about his diagnosis of PD and my role as his CarePartner. We discovered an amazing network of support that exists for People with Parkinson’s and CarePartners too.

There are still days when I feel disconnected but then I simply remind myself of all the local, national and even worldwide resources available to us. If I am still feeling lonely I can join the Parkinson’s Buddy Network through the Michael J Fox Foundation or I can reach out to one of the ambassadors at the Davis Phinney Foundation. I can always call the Parkinson’s Foundation Helpline and speak with a caring professional. There is a safety net waiting for me, I just need to remember to use it.

For more on the MJFF Buddy Network click https://parkinsonsbuddynetwork.michaeljfox.org/v2/; to find and speak with a DPF Ambassador, click https://davisphinneyfoundation.org/find-an-ambassador/?relationship=i-am-a-care-partner; and finally if those don’t work check out the Parkinson’s Foundation Helpline at https://www.parkinson.org/resources-support/helpline.

My husband and I have been facing some difficult days following an injury to his knee and my own health issues. I had an opportunity to speak with my sister yesterday who owned an in-home care agency at one point in her life. Thanks to that experience she has become one of my expert advisors. Even though it has been years since she was in that role, she has stories to share and tips they used to help get clients through challenges. She is also a great listener and with her knowledge of my father’s journey with PD, she has somewhat of an understanding of what we are facing.

Back to yesterday’s conversation, she reminded me that when things go haywire it might be good to have an emergency button we could push to summon help. We talked through how my cell phone might be the replacement for that but, in that case I need to keep it close. We discussed the problem of letting someone into the house when the front door is locked. She shared that some former clients had lockboxes on their front porches with a key. They could give emergency responders the code to get the key and let themselves in. I shared that we have a garage door code that might work in the same way.

It was good for me to be able to debrief what happened in this last episode with someone knowledgeable about possible support. I feel that I have a better, clearer plan now thanks to her advice. Who knew my big sister would still be teaching me stuff at this age?

It’s been a tough week at our house. My husband hurt his knee which has limited his mobility even more than normal. I had a fainting episode trying to help him and so together we’ve been a mess. I’m okay but working with my doctor to try and figure out why I fainted. My husband has been getting used to his new transport chair as he lets his leg and knee rest. Thank goodness for family, friends and in-home care or I don’t know how either of us would have made it through.

I was out on the floor next to our bed when my husband told me I needed to call someone for help. I agreed but told him it would have to wait until a bit later. Once we were both up, I reached out to our home care agency and they were able to send our caregiver over immediately. My next call was to my doctor’s office because I certainly didn’t want to go to the ER knowing how bad those visits can be. They were able to schedule an appointment in a couple of hours. I called my son and he accompanied me to the doctor’s office. He came back the next day to check in and take me grocery shopping. Finally, this is the week I have a monthly breakfast with fellow PD CarePartners, I texted one of them to let her know what happened and ask for help with the group since I won’t be able to attend.

It is tough for me to ask for help and even more difficult to accept it. In this case where both of us needed assistance, I knew I couldn’t manage. When my husband’s caregiver arrived she immediately stepped in to make sure I was okay too. My son was taking a few days off work but didn’t think twice when I called. My fellow CarePartners will be just fine without me. I am so thankful to have an awesome support network who provide care for both of us, I just hope they all understand that we are here for them too.  

We have a commitment today that will be stressful for both of us and impact our regular routine. I know in advance that it can potentially take a couple of days for us to recover from what would be to anyone else a minor disruption. Yet we will go in a desire for life to be as normal as possible and hope for the best. We’re looking at the possibility of a couple of bad days, so I’m going to have to look for opportunities to turn that around.

First of all knowing that this one activity will be difficult, nothing else gets added to our schedule. We both are going to need rest breaks today. Second of all, I look at my to-do list with the goal of simplifying today’s load as much as possible to free me up in case my husband needs more assistance. I need to be prepared just in case. Finally, I need to be attentive and ready to cut and run when things go too far. In other words, I need to keep my priorities straight. When my husband is done and ready to come home, we come home.

I can’t make this situation go away, but I can do my best to minimize any negative impacts. My husband tells me that I overthink things making them more difficult and I know he is right. The more I stress, the more he stresses which it can turn a good day into a not so good one. I’ll adjust my attitude, we’ll get through this, and life will be back to normal in a couple of days. I just need to let go of my worries and manage with whatever happens. It might surprise me.

The holidays are a great time for plans. I have a plan for shopping, we have plans for family activities and plans for private time together, we have a plan for all those family and personal traditions. What I don’t always remember to plan for is when everything goes sideways which can happen so easily with Parkinson’s Disease. It can be a fall, a virus, an appointment that can’t be changed. There are a lot of potential complicating factors when you are dealing with a chronic illness.

One basic tip to remember when making any plans is flexibility. We never know for sure that any given day is going to be a good or bad one. What I do know is the stress that comes with holiday gatherings always triggers my husband’s symptoms so things can change quickly. I make sure to communicate this to friends and family. I let them know that whether we are able to participate in activities can be dependent on the day and we may only have a short window of time to be there.

This year the sideways jaunt had nothing to do with my husband’s diagnosis but instead is because of a death in the family. We learned mid-December that a cousin had lost her battle with cancer. The day we had set aside for our family holiday celebration is now the day we will be attending her memorial service. A phone call and a couple of texts and now the family get-together will be a recap of the holidays sometime in January. Flexibility, adaptability, and reality working together will allow us the opportunity to celebrate even if it isn’t quite what we planned for in the first place.

I have been co-facilitating our local Parkinson’s support group for a few years now. It was something I enjoyed and something positive I could do in response to this challenging shared diagnosis. During a recent meeting I was speaking with fellow CarePartners about how busy our lives can get and the many hats we are called upon to wear. We talked about which hats could come off to relieve some of the stress we face. It was an eye opening experience for me.

There were a few hats that I couldn’t let go of, particularly those that involve personal care for my husband when no one else is around. Then there were the hats that involved caring for our home so we have a safe and sound roof over our heads. Financial management, shopping, generally interacting with the world at large are essential tasks that I must provide so those hats stay in place. One hat I realized I needed to take off was the one that involved the support group. I recognized that as my role as co-facilitator was impacting my role as CarePartner which was the indication it was time to step aside.

Just as my  husband’s disease is progressing, so is my role as his Caring Partner. There is more responsibility every day and as that increases I must realistically adjust my life in other ways to make it work. I know there are other hats that will have come off, but am happy that for now we can still come to support group meetings. I’m looking forward to putting that simpler attendee hat back on.

Please excuse this reprint of words I wrote a few years back. A friend recently asked “How do you do it ?” referring to the challenges I face as a CarePartner. I think these words provide the best answer.

This is definitely not how I expected life to be when we both retired. We were going to travel and I was going to have time to explore new interests. I was going to write a novel and finally get it published. Life was going to be easy and fun. Then, my husband developed a tremor that shook our entire world.

And so, our plans have changed. Not quite the travels we anticipated, we get to go back and forth to visit his neurologist and other specialists regularly. Instead of writing that novel, I am writing a blog about caring for someone with a chronic illness. The new interests we have developed all focus on PD and finding ways to make life better whether it is through boxing or support groups. And all that extra time I was going to have? I spend it doing work around our home, chores that he once was able to do, or helping my husband with his daily living activities.

Yes, I do miss the carefree man that I married and yes, I do wish he had never been diagnosed with this illness. There is a sadness deep inside, a piece of me that grieves the life we might have had and wonders where it might have taken us. I miss his easy smiles and quick wit. Yet, I know that he is still here with me. So, on those days when I am feeling particularly nostalgic for what might have been, I take a look beyond the PD at what we do still have and find the love. We are still here, we are still moving, and we will keep on fighting this disease together. As I grieve for what might have been, I will rejoice for what we still have and look forward with an open heart to new opportunities we will share in the future.

For more on dealing with your feelings of grief check out this article entitled “Grief and Loss” on the Family Caregiver Alliance website.

This is one of the more difficult challenges I face with my husband. We don’t always agree on which mobility aids might be beneficial. I fully support his drive to do as much as possible for himself while he still can, however, there are aids that could make life easier for both of us if he would only consider using them. He has accepted transfer poles next to his favorite chairs and grab bars in the bathrooms. He reluctantly started using a cane and then a walker on the advice of his physical therapist.

I have been looking into getting a Transport Chair. It is a light weight wheelchair not intended for full time use and would be nice for those rare occasions when we want to do things that stretch his current capabilities. We used to love going for walks along the waterfront. Walking with him when he is using a walker is stressful as I am constantly watching to make sure he is okay. With a transport chair, he could walk until he got tired and then ride to enjoy the rest of our walk.

I wish I didn’t have to think about these things, I sincerely wish he was able to do everything we once did together. That is not possible. So, I am trying to find workarounds, ways we can still enjoy some of our former activities without taking away from his dignity or independence. I know a transport chair is scary but it doesn’t have to be. If I can help him look at it as a tool that can enrich our lives, then perhaps he will be able to accept it. I would really like to be able to go on outings together again.