We have always enjoyed travelling to experience new places and people. Unfortunately, that is one of the things that Parkinson’s seems to be taking away from us. It has become increasingly difficult for my husband as he tires so easily. Travelling, no matter the mode, often means he has to focus energy on navigating noise and crowds in unfamiliar territory. Daily schedules, so important for someone with PD, are disrupted and dietary changes bring their own challenge. Regardless, we are planning a trip to Hawaii in September to celebrate our 20^th anniversary, albeit a year late, and my hopes are high we will have a good time.

In order to make sure things go smoothly, I am trying to handle as many of the basic logistics in advance so all he has to worry about are his physical challenges. I’ve asked for a wheelchair escort from the ticket counter to the gate at both airports. I requested an ADA approved room when making my reservation. We are going back to a resort we visited before so we know the area and what to expect while we are there. We’re getting an ocean view room so when he is tired, we can rest on the balcony and watch the whales playing in the waters off the island. We only plan to stay a few nights which minimizes the overall impacts of being away.

Now comes my biggest challenge, helping him acknowledge that this can go easier if he is willing to accept assistance along the way. He hasn’t been open to a walker or wheelchair before, will he understand that the need isn’t just for him but also for me? I can handle shuttles, ticket counters, luggage, carry-ons, whatever other hassles travel presents, but not if I am also having to keep an eye on my husband to make sure he is okay. I want to enjoy my time in Hawaii rather than arrive exhausted and spend the entire vacation trying to recover only to go through it all again on the way home. I guess I’ll find out in September.

Spring is a challenging time for me because, as I come out of my winter hibernation stage I want to get out and get busy. There seems to be so much to get done and I want to tackle it all at once. The longer daylight hours give me more time to work, and I feel the need to fill them all. I sometimes forget that my life is already busy with CarePartnering duties and I tend to get carried away by the new, often more interesting tasks in front of me. Trying to do it all simply leaves me frustrated, irritable and exhausted.

Thankfully this spring the goddess of weather has looked down and put rain in my way. I have been limited in the amount of time I can spend outside because it is too wet or too muddy or just too cold. I have been forced to slow down and think about what I want to do, then break it into smaller portions that can be completed in windows of dry time. So far it seems to be working pretty well. In addition, a friend offered to come and help with the yard and we had a couple of good days to work together. That was just enough to give me a kickstart. She had some great tips and tools that made the job go faster and easier.

I have limited capacity and time constraints that change based on whether my husband is having a good or bad day. If I am going to be here for him and for me, I need to recognize and respect those limits. The word “no” can be harsh, so instead I am going to say “enough”. If I come at each new day with clear priorities and an open mind, I can accomplish much without missing the important things or overwhelming myself. I will reach the end of my day with a feeling of satisfaction for tasks completed, not complete exhaustion and thoughts of tasks still to be done.

I had lunch with a friend recently, someone outside of our PD community. She asked about my husband and then shared some about their struggles with her husband’s diagnosis of leukemia. They are also dealing with a chronic illness that is currently in remission but that could have a much more dire outcome. Listening to her situation reinforces to me that I am not the only one facing a difficult and uncertain future.

We moved on to talk about the other things in our lives, those things that exist outside the confines of our husband’s diagnoses. We started with our children and grandchildren, sharing pictures of them and swapping stories of fun things we have done together. We talked about mutual friends and travel plans we each have. Their plans are a bit more adventuresome than ours, yet we are all heading somewhere in the near future. We ended our time together with the hope that we would all come together again soon, no definite plan but a definite intention.

 Having friends who understand Parkinson’s disease is such a valuable thing for me that I sometimes forget the value of having friends who are outside that circle. We met this couple at a local winery almost a decade ago when my husband’s disease was new and not nearly as invasive. When she and I get together, I can let my role as CarePartner go for a while. Lunching with her reminds me that everyone has struggles and that there are bigger things in life than PD. I come away with a fresh perspective and ready to look, and live, for the good things that are happening in my life each and every day.

Don’t get me wrong, I think that therapists and counselors play an important role and have consulted with them during difficult times in my life. It was helpful having a supportive ear to listen to my problems and help me tease out solutions. Their support, however, was limited to their training. My fellow CarePartners are living similar lives to mine and can share their wisdom from a wealth of experiences. That is truly what I need at this point in my life.

I was hesitant to join a support group, concerned about what we might find. I wasn’t sure I was ready to face our future with Parkinson’s Disease and joining the group seemed to be the final piece of acceptance. I used the excuse that I was working and couldn’t get away during the day to attend the meetings, but the reality was that I was just not at the right place mentally. Walking in to the first meeting was an eye-opening experience. There were 20 or more people and their partners all at different places in their Parkinson’s journeys welcoming us into the fold. I cried when I felt the care and love that was in the room.

Since that day I have participated in many different activities with this new group of friends. They get me in so many ways that someone who hasn’t walked this path could never understand. I find a safe place to talk about my husband’s tremors and balance issues, about my feelings of loss and exhaustion, yes even about what the future might bring. We laugh and cry together yet through it all we know that we can make it. If there is a silver lining to this whole PD thing it is the wonderful group of people that share my life thanks to my husband’s diagnosis. I will never have to face this journey alone.

How I wish it were just this simple. So many nights I would lie awake with a mind that just wouldn’t shut down, not full of worry, simply ruminating on the day and whatever random thoughts arrived. Or I’d be up and roaming the house at night trying not to wake my husband yet seriously envying him his peaceful sleep.

I tried melatonin, chamomile, over the counter medications for sleep. I tried meditation, warm baths, relaxation techniques. Nothing helped until I finally was at the end of my rope and approached my doctor who thought it might be hormonal imbalances. I started a new treatment program and it was like a miracle, I went from 1-2 restful nights a week to only 1-2 sleepless nights. Though still not perfect, this was something I could live with.

Getting enough rest was a huge challenge but I didn’t, couldn’t give up. I went beyond the basics with my doctor to finally figure out what my body needed. Since then, I have adjusted my treatment plan from time to time to make sure it still does the job. I am always willing to go the extra mile for my husband, this time I chose to do it for myself. I am happier, healthier and a better CarePartner because I persisted and found the correct sleeping solution for me.

If getting enough sleep is a challenge for you, then speak with your doctor and don’t give up, there are solutions out there. Your health matters!

I have been engaging in some self-care activities this week, a medical appointment and a haircut. Perhaps these don’t sound like true self-care since they aren’t things I do for pleasure as much as they are, quite simply, maintenance issues. However, making my basic needs a personal priority reminds me that I matter and makes me stronger.

One thing I noticed is that I am so used to having my husband with me all the time, I stressed about having to go to the doctor alone. And when I went to the hairdresser, I rushed back home with a wet head instead of sitting under the dryer. Has this role of CarePartner lead to me becoming co-dependent? Do I need him for support as much or more than he needs me? The reality is that I have incorporated the role of CarePartner into my life so much that I am not sure who I am when I am away from it.

Walking out the door and leaving the worries behind sounds good. Thankfully, I do still have some volunteer time away from home yet even then I keep my phone handy in case my husband needs to reach me. Recognizing the connection that has grown here, both healthy and unhealthy, will allow me to better understand how to take good care of myself and protect my individuality. I am capable and can still act independently of my husband. Exercising that skillset by prioritizing my needs will not only make me stronger and healthier, it will also allow me to be a better partner for him.

My husband has a birthday coming up soon. It is a milestone, 80 years on this earth, and well worth celebrating. This has been on my mind for a while now, how do I create a celebration that honors him and that will be comfortable for him? I like to entertain; how do I keep from turning this into something I want instead of what meets his current needs and that he would enjoy?

The first step was simply to open the conversation. If this is truly a party for him then he needs to be on board with the planning of it. He controls the guest list and the menu. We will choose a day with nothing else happening and a time that corresponds with his best on-times of the day. It will be short, no more than 2 hours so that he doesn’t exhaust himself. He helps plan any activities and can choose to participate or not depending on how he feels on the day. It is vital that I look at preparations for the event and make sure that I am not overloading either of us. Allowing plenty of time to prepare for the event can alleviate stress on the day and ensure that we are both at our best when the guests arrive.

Our guest list will include family and friends who understand his diagnosis. We’ve decided that a Sunday afternoon works best for us and are thinking we should host an open house so people can come and go as they please. Snacks will be finger food, no utensils required, and everything will be very casual. I am enlisting helpers, my sister, our children and grandchildren to make sure the day goes smoothly and we can both enjoy this time to celebrate 80 well-lived years.

I have a habit of starting my days on the scale, weighing in for whatever reason since I am not actively trying to lose weight. It has, as I said, become a habit. The real value of the experience is taking a moment of stillness as I stretch overhead and open myself to the day. I empty my mind and ask for patience to face whatever this day brings with kindness and love. It doesn’t always work, but at least I am trying.

Some mornings I bring back a positive memory from the day before or perhaps a regret of something that didn’t go as well as it could have. I ponder it briefly, then look at the possibility of the day ahead. I know what we have planned, I don’t know what life has in store for us and want to be prepared for whatever comes.

This all sounds like more than it is. I am on the scale for only a minute or two and all of these thoughts come and go quickly. However, just as my journaling, this activity helps ground me. If I can start from this place of peace, perhaps wisdom and energy will come when I most need them and lead me to a positive outcome for my day, I can only hope.

I think we all wonder sometimes if the meds are really necessary. A few years ago, my husband and I decided to stop his medication, just to see what life would be like without the carbidopa-levodopa. We discussed it with his neurologist who warned us that he would be okay for a few days but that she expected the “wheels would fall off” within a couple of weeks. She was so right. After our little experiment, it took him months to finally get back to a comfortably regulated place. We won’t try that again.

I need to remember that my husband doesn’t necessarily need the same supplements I take. My doctor recommended that I take fish oil to fight high cholesterol and support brain health. If it is good for me, it should be good for my husband, right? Wrong! Especially since he added it just before his DBS surgery and without consulting his neurosurgeon. I didn’t realize fish oil was a blood thinner and inadvertently put him at risk for a brain bleed. Later, when we were thinking about adding magnesium to his regime to fight leg cramps, we first talked to his doctor for her okay.

As his CarePartner, I am the best person to know when my husband’s medications are not working properly. I know his patterns and can see when things deviate from the norm. His medical team are the experts on medication, supplements and available treatments. That is why it is essential that I have a good relationship with his medical providers from his PCP to his Neurologist to a local pharmacist. I need to know that I can contact them at any time I have a concern and that they will listen and take me seriously. I also need to know that I can contact them with questions if we are considering a change, to make sure what we are doing will not put him in danger or cause unnecessary challenges for him. We all need to communicate if my husband is going to get the correct treatment for his diagnosis and that communication needs to start with me.

I hear my inner voice once again telling me that I just “screwed up” or “boy, that was a bone-headed move”. The term idiotic often comes up in my internal conversations. There is no way I would speak this harshly to my husband, what makes it okay to do it to myself?

Those negative words are powerful. They are tied to negative emotions that infiltrate my thoughts throughout the day. My self-image is damaged when I berate myself for mistakes or perceived failures. This mindset is unhealthy, unproductive and creates unnecessary stress in all my dealings, including those with my husband. According to an article on the Mayo Clinic website, turning those negative patterns around can help me live a longer, healthier and happier life. Positive self-talk can be where it all starts.

My husband’s Parkinson’s diagnosis provides me with plenty of negative opportunities. I can allow those things to influence my thoughts or I can try to take a different, gentler approach. Rather than considering myself an idiot for making mistakes, I will try to look at myself with kindness and understanding. I need to consider that I am a student still learning the many lessons of life. In that scenario, the more mistakes I make the better because that is how I learn best. So, bring it on PD, I plan to be your star pupil!

To see the entire article, click here- Positive thinking: Reduce stress by eliminating negative self-talk – Mayo Clinic.