Sometimes unexpected symptoms of Parkinson’s appear to be weather related. Be sure to discuss any physical changes, no matter how minor they seem, with your medical team before treating them yourselves.

My husband has dealt with a perpetually runny nose forever thinking it was allergies. What we learned following his Parkinson’s diagnosis was that Rhinorrea, the medical term for excess clear nasal drainage, is three times more common in people with PD than it is in the general public. Additionally, studies have been conducted on PD and seasonal allergies and the jury is still out. Regardless of whether the drainage is caused by PD or pollen, it was annoying and needed to be treated. Thankfully his neurologist agreed and was able to prescribe a nasal spray helps some.

We could have gone to the drug store and picked up something off the shelf, but most over the counter medications warn against long term usage. One drug in particular, Diphenhydramine (Benadryl) is no longer used with those of us over 65 due to the possible connection to dementia. Many allergy medications list drowsiness as a possible side effect so we felt it was essential to ask my husband’s neurologist what she could recommend as a safe, long-term treatment for this condition.

My husband was prescribed a nasal spray called Ipratropium Bromide that he uses twice a day with some success. I am not mentioning this as a recommendation, but as a potential question you could take to your medical team. Being an old fashioned guy, he also carries a handkerchief in his pocket at all times to catch those drips. Unfortunately we have had to accept that runny nose is just another component of his journey with Parkinson’s.                                                          

For more on runny noses see this fact sheet on the APDA website uncommon-non-motor-symptoms-of-pd and to read more about studies regarding seasonal allergies visit Quality of life: Seasonal fluctuation in Parkinson’s disease – PMC (nih.gov).

The word “no” is not negative when used to protect the positive boundaries and mindset you have developed while caring for yourself.

I have learned over the years that saying “no” to my husband is hard but necessary if I am going to be able to get anything done or have any time for myself. That also applies to saying “no” to myself regarding his care. We have caregivers who come to our home twice a week and yet, when they were here, I caught myself stepping in to help him with tasks that were too personal or too delicate. I had to take a breath and remind both of us that these people come here expecting to be caring for him and to give me a break. It doesn’t work unless we are all on board and let them do their jobs.

This concept also applies when it is just the two of us at home. My husband has a pretty good idea of when to leave me alone but there are times, such as this morning while writing this blog, that he decides he needs something done. It may be something that can’t wait, often it is not. Whatever I am doing gets interrupted and seldom gets finished. I know his care has to be a priority so I always respond. Once I know what he wants, I can decide whether to put him off until later.

Saying “no” can be harsh so I try to find alternative ways of putting it that soften the blow. I may ask my husband to let me finish what I am doing so I can focus on what he needs to have done. Sometimes it’s simply saying “I’ll be with you in a minute” or “let’s talk about this later, okay?”. When saying no to myself, I remember the importance of leaving my husband alone to complete certain tasks and to respect the abilities of our helpers before stepping in and doing their jobs. We all have a role to play in this journey with Parkinson’s, mine needs to be less rather than more as I figure out how to say “no” graciously and make it stick.

Taking a different approach to tasks can make them go so much better especially if you can find a way to let your creative or silly side come out to play.

I am taking a different approach to my writing today and hope you appreciate it. I have been dealing with some minor plumbing issues and have run into interesting challenges trying to get them fixed. Trying to care for my husband and my house becomes exasperating at times. When I do finally call for help, it means that I have reached the end of my rope. The following poem came out of my attempts to hire a plumber. And by the way, the sink is still dripping.

Not a Plumber

I am not a plumber that’s why I’m calling you today.

I have a faucet that’s dripping, please don’t turn me away.

You see I’m old and tired with too many things to do

And I am really hoping I can depend on you.

When you’re here I have a that toilet that gurgles every night,

I know it shouldn’t make that noise, something just isn’t right.

There’s a sink in my laundry room that needs looking at as well,

And the drain to my washing machine has an interesting smell.

I know these jobs are small and unimportant to you,

But they are driving me crazy! Is there anything you can do?

Other plumbers that I call encourage me to do them on my own.

Perhaps I could, but I don’t want to, so I’m still on the phone.

I understand you’ll have to charge me and I really do not care.

Since having you do these chores keeps me from pulling out my hair.

Because I’m really not a plumber and I don’t want to be.

Won’t you PLEASE get me on your schedule as soon as you are free?

Honesty with your loved one regarding their diagnosis and your current situation is great, sometimes diplomacy is even better.

According to my Merriam-Webster’s Collegiate Dictionary, diplomacy is defined as “skill in handling affairs without arousing hostility.” It’s the actions and thoughts behind my smile on those really tough days. I could point out all the things that are going wrong but hold my tongue knowing nothing my husband is doing is deliberate, it’s just Parkinson’s. The advantage in this approach is that it actually helps me rethink what’s happening as I work to keep myself in a positive mindset. And it acts to lessen my stress.

A good diplomat knows how to safely and positively negotiate difficult situations. As I get to take over more of the duties around our home, I have opportunities to practice my negotiating skills. My husband and I don’t approach tasks in the same way or on the same schedule. Convincing him that I have things under control even though it’s not the way he would do them is interesting. There are some tasks we can still do together, others that I know I need to do when he is napping or otherwise engaged. Then there are things I do his way to avoid conflict, agreeing simply to avoid aggravation.

Diplomacy particularly comes into play when facing transitions in our journey. I can only imagine how difficult it must be for my husband to feel he’s losing his mobility and independence, yet when it comes to safety there are things that must happen. First it was driving, more recently using a cane and then a walker. My take on using a diplomatic approach throughout these changes meant being respectful and acknowledging his feelings. I did my best to give an honest assessment of where we were and then presented options that allowed him to feel some control in the process. My husband is still able to listen to reason, something I am grateful for each and every day. I think diplomacy looks very different when dealing with PD dementia, but suspect it will be an even more useful tool should we ever reach that stage in our journey.

Knowing what is happening with your Person with Parkinson’s and what needs to be done to fix it can be one of the most difficult challenges we face.

Charlie had an episode a while back. He said he was really tired on a Thursday when we went to bed and couldn’t get out of bed the next morning. He didn’t want me to call the doctor but I finally did that afternoon, they never called back. He couldn’t make it from the bed to the bathroom without help. He couldn’t feed himself. He couldn’t roll over in bed, and I wasn’t strong enough to help him. How am I going to provide care for him when I don’t know how?

I wrote those words back in 2017 and they are still true today. I have learned a lot more about his condition but things still happen and I find myself lost. And it seems I am not the only one. He has  been dealing with bowel issues for months now, had been seen at an urgent care facility and by his primary care doctor. She finally referred him to a Colorectal Surgeon who diagnosed an impacted bowel. A suppository and a couple of really crappy days (literally) and we seem to have finally found the solution. Now, how do we keep it from happening again?

It is so frustrating trying to care for my husband when even the medical professionals can’t figure things out. I wish I had a magic wand that I could simply run over his body to discover where the problem is and how to make it better. Instead I do the best I can to keep him comfortable, healthy and happy. There are always going to be complicating factors with this disease and I can’t blame myself for not recognizing them all. I am his Partner in this journey, not his doctor. I can advocate for him, I can love him, I can’t fix everything we face. Accepting that reality is a hard but necessary component of my journey in caring for a loved one with a chronic illness.

Keeping an eye on what is going in to your loved one’s body can help you understand what is coming out.

We definitely have more conversations about my husband’s bowels and digestion than I ever expected thanks to his Parkinson’s Diagnosis. This sounds somewhat gross but it has become a constant worry at our house. The disease itself slows down his intestinal tract and causes constipation, then the medications we use to treat that condition cause diarrhea. It’s a vicious cycle.

After going through a particularly difficult couple of months, we visited his Primary Care Doctor. She suggested a bland diet, which we tried for a few days. He didn’t like it and it didn’t really seem to make a difference. I decided it might be helpful to keep a food diary. Perhaps we could figure out what he was eating that was triggering his system. I created a tabular meal plan format and started writing down everything he ate including snacks. At the bottom of each day I add comments about output. Tracking what goes in versus what comes out has been interesting.

I’d love to say that we’ve figured it all out but know that it’s an ongoing battle. What I am learning is that recording what I feed my husband makes me think more about food choices resulting in a healthier diet. I don’t keep track of volume, I just concern myself with value. I’m not trying to be the food police, just a positive influencer presenting better alternatives that will make both of our lives easier. I’ll know we’ve made it when we have to find another topic to discuss besides “what does your poop look like today?”

Stop, think, shift, step. Valuable advice for People with Parkinson’s and their CarePartners too.

We originally learned this in a movement class for my husband. It is a technique he can use to combat freezing in his gait. I am not sure whether he has tried it or not, what I do know is that it has become very helpful for me in my role as CarePartner. When anger, frustration, exhaustion, whatever gets in my way, I remember this mantra. I stop and take a breath; I think about what is happening in the moment; I shift my mindset into a healthier perspective; and then step forward into whatever it takes to complete the task at hand.

Using this technique forces me to act with thought, not react in desperation. I make better choices when I remember to go through this simple process. It doesn’t always lead me to the best outcome, but I have a much better chance of doing the right things when I take that moment to consider the options first. I can stop the stress spiral, take control of my responses and provide better care for my husband. It’s a winning solution for both of us.

Adjust your expectations as you are called upon to adjust your tasks.

There are always going to be times on this journey when my husband needs more care. It may be because of a fall, a viral infection, just about anything can create additional challenges for him which, of course, means additional challenges for me. The more I find myself doing for my husband, the less I am able to do for us and doing anything strictly for myself can easily go right out the window. That is when it becomes essential for me to step back and make some adjustments to our routines to ensure that everyone’s needs are met.

Thankfully, my husband understands the value of having a well rested partner because he has seen me when I am not. He knows that without my daily mini breaks, my twice weekly helpers, my yoga and my walks, I am simply not able to be as patient or kind as I need want to be. I understand that he cannot stop bad things that happen and doesn’t control the level of care necessary to sustain him at times. The fact that we both understand these things doesn’t change the fact that sometimes I am just going to have to change my routine so I can provide the care he needs in the moment.

My husband’s journey has setbacks and we have to figure out how to weather them together. I remind myself that the obstacles PD brings are temporary and that we will get back on track soon. I am honest about what I can do and what I need to do and work to balance the scales. And, I look for easy ways to make it through. If I am too busy or too tired to cook, we’ll have leftovers from the freezer and it’s okay. If he is taking a nap, so am I, the housework can wait. If there are tasks I can pass off to our caregivers, then I do it because they are here to help me as much as my husband. I adjust and accept different expectations of myself since sometimes that is the best way for us to make it through. And it is all okay.

Recognize and celebrate the good times you share.

Good times has taken on a whole new meaning as my husband’s symptoms increase. He woke and got out of bed by himself this morning, he loaded his breakfast dishes into the dishwasher, he seems well balanced and stable in his gait. This all means that I can take a breath and, maybe take a step back, since he appears to be having a good day.

I write often about the challenges we face but one of my biggest challenges is the unpredictability of this disease. It’s not knowing from one day to the next whether my husband will be up or down, needing me or not. When he doesn’t need my help as much, like today, I find myself hovering because I don’t trust that he’s okay. That inner guardian of mine that is always listening for trouble has a hard time letting go and understanding he’s doing well in this moment.

I don’t know how long this good time will last but I do know that I need to accept it and be at peace. My husband will let me know when he needs me, in the meantime I can take a break and celebrate his ability to manage today. He’s got this for now and I just need to let him be. Thank goodness for the good times.

Human touch is a vital component of healthy living for seniors especially CarePartners.

Is there anything in the world as comforting as the gentle touch of a friend or loved one? I was thinking about this the other day when I ran into a fellow CarePartner and immediately gave her a hug. It felt so good to simply connect physically with another human being. That physical connection validates who I am, reminds me that no matter what flaws I may think I have, someone else still cares for me. It justifies my existence.

I touch my husband a lot in my role of caregiver. I hope those touches are gentle, but they do not replace the contact we share that doesn’t involve his personal care. Helping him dress is not the same as holding him close while we dance. I don’t want to mistake those necessary care touches with loving touches. We both need the hand holding, the hugs, the kisses, those moments that say I remember who you are and I love you for it.

Parkinson’s is an isolating disease for both the person with the diagnosis and the people who love and care for them. I need to stay connected with my husband even more than the outside world. I miss those spontaneous hugs or kisses that happened just because. I know he has to work hard just to maintain each day so I am taking it upon myself to be the aggressor, if you would. I can be the one to reach for his hand, catch him in a hug, drop unexpected kisses because I know he would if he had the energy. And he always hugs back so I know we both get comfort in knowing we are still here and still loved.