Here we are in the midst of cold and flu season, and I am looking at the collection of remedies in my medicine cabinet realizing that I need to throw many of them out. We have been lucky and have not had any bouts with the flu or even colds over the past few years so much of the medication has expired; reason #1 to throw it out. We are getting older, and the newest recommendations say seniors shouldn’t take OTC cold and flu meds that contain Benedryl because they can increase our risk of dementia; reason #2 to throw them out. Most cold and flu meds list drowsiness and confusion as possible side effects, something my husband faces anyway with his diagnosis of PD; reason #3 to throw them out.

So, what to do instead? Even though we get our flu shots every year, there is still the chance we will contract something. Do we then have to suffer through colds or flu with no relief at all? According to a blog posting on the Parkinson’s Foundation website, there may be times when it is okay to use OTC meds and supplements. If my husband is extremely sick, we should consult with his neurologist and pharmacist. They can help us figure out whether a particular OTC medication or supplement will interact with his PD meds and discuss possible side effects. We can work together to decide whether continuing to suffer with the cold or flu is the lesser of the two evils.

Should we all decide that it might be best not take OTC meds, our next approach is the tried and true. Lots of fluids and rest. Chicken soup, tea with honey, saline rinses for the nose and who doesn’t remember having menthol rubs on your chest to help relieve congestion? Most of the resources I found agreed that my husband and I would be safe taking either ibuprofen or acetaminophen for the achiness, but we need to remember that fever is how our bodies kill the invading illness. I certainly don’t want to do anything that might interfere with natural defenses to make the cold or flu stick around longer for either of us.

To learn more about topics in today’s blog- Benadryl Side Effects: What They Are and How to Manage Them (healthline.com); Tips for People with Parkinson’s Who Want to Take Over the Counter Medications During Flu Season | Parkinson’s Foundation; 14 All-Natural Home Remedies for Fast Cold & Flu Relief (webmd.com).

I have been visiting with a therapist for over a year now. At first, we were meeting every other week and then once a month. I found my visits with her to be very helpful as I worked my way through some difficult decisions regarding my husband’s care and my personal self-care. Thanks to her support, I am enrolled in a yoga class once a week and have started in-home care. I am exploring other opportunities for self-enrichment and stress relief. Life is better and I feel ready to let the monthly check-ins go.

It concerns me that I might fall back into bad habits once I am not meeting with her regularly. Will I be able to hold myself accountable to the same extent that she does? She has helped me find a positive pathway, will I stay on it without her guidance? What happens when the next challenge comes up and I need that objective ear to help  me figure out what to do? It has been nice having someone who is not connected to Parkinson’s to share my struggles with.

So, I am at a crossroads. One part of my mind wants to continue the monthly meetings just in case, the other is ready to say I can do this on my own. I do have an appointment coming up next week, I think I know what we’ll be talking about and perhaps she can help me find the right answer. I hope so. Whichever way I go, I am going to tape her business card to my mirror so I can remind myself that professional help is just a phone call away.  

I’ve been working on figuring out how to make dinner time less stressful for us. There are spills on the table and on the floor that can be troubling for both of us. I joke about getting a dog to help with clean up, but in reality, I need to find tools that allow my husband to feed himself safely without making a mess. I have a hard time bringing this up, not wanting to embarrass him, and it often turns into a joke. My biggest concern is that he will spill something, I won’t realize what has happened, and he will slip in it getting out of his chair. We don’t need any additional fall risks in our lives.

Amazon has been my friend as I look for something that might help. I searched for adaptable dinnerware and found that they have so many things, it is almost too much to sort through. There are scooper plates and bowls, plates designed with high walls with and without sections, plate safety rims that clip on to our existing dinnerware. The utensils range from bendable to weighted to rocker knives to sporks and knorks (a knife-fork combination). I have been considering this for months now, I finally decided it is time to order some things and give them a try.

I decided to purchase a couple of different styles of plates, a scooper and a high wall version. We can see if either of them work for him. I also ordered a small set of utensils. I am hopeful that he will be willing to try them and that they solve some of this problem. Otherwise we’ll be trying to convince the cat to clean up spills like the dog. Pretty sure I know how that would go…

I am so thankful for the times my husband and I were able to go places, the vacations big and small that we took both before and in the early years of his diagnosis. I am thankful for all the things we did together, the adventures we had. I am especially thankful that we said yes more often than we said no, because Parkinson’s Disease has brought changes to our lives, and we would have missed out on so much.

Instead of feeling regret over missed opportunities, I am able to look back on warm memories. Whether it was trips to Hawaii and Moorea, or to a local B-n-B for a quick weekend away, I can revisit them in my mind whenever I need a break from the day to day. I recall swimming with sting rays, dancing to a live band at a local winery, soaking in a hot tub as snow fell around us. These thoughts always bring a smile to what may otherwise be a very difficult day.

My advice to anyone caring for someone who is newly diagnosed is this, live your lives as fully as you can everyday. Go now, do things while you both can, don’t put anything off. Take advantage of every opportunity for travel or for fun, they may not come again. And know that someday, perhaps sooner than you expect, this disease may take those options away. Experience life fully and store up those memories while you can, they will bring comfort when you can’t go and do anymore.

While I write this, I am thinking about the side effects of Parkinson’s medications, the potential aftereffects of surgical interventions, the choices we all face when deciding whether a recommended treatment or the disease is worse. Many of the drugs for PD come with warnings about dyskinesia, dizziness, constipation, confusion, even impulsive behavior. All treatments presented to my husband have some negative aspects and it is important to weigh whether they could potentially cause more problems than the symptom they are designed to control. This can be particularly difficult when your loved one has cognitive impairment and you are left to figure things out without their input.

In our case, my husband is still capable of making choices and has declined many medications because they disrupted his sleep or his thinking processes. When he took them, he would have nightmares, strike out in his sleep and then was groggy all day long. After years of consideration and multiple conversations with his neurologists, he did choose Deep Brain Stimulation surgery. We made sure that we both understood the risks before he underwent the procedure. This trade-off took his tremors away but replaced them with balance and voice issues. I think it was worth it, I’m not sure he agrees.  

Everyone presents differently on their journey with PD which means their treatment options, and reactions to those options, are going to be different. There may be universal things, like carbidopa levodopa, that can provide relief for everyone. Then there will be medications or procedures like my husband’s DBS which work only on a particular sub-group. I try to help him by researching his options and their potential outcomes. I ask questions, observe what is happening and talk with him and his doctor when things don’t look right. Most of all, I always discuss any concerns about what could happen when he is making changes to his treatment plan. It’s essential that we work together to figure out what treatments are best for him and for us.

Am I his wife or his caregiver in this moment? How do I switch one off and turn the other on? Which do I want to be, and which do I need to be? When did the lines become so blurred? What does my husband see when he looks at me? All questions I face daily now that we are reaching more advanced stages of my husband’s diagnosis. My biggest question is can I keep my role of wife alive as we move further in this journey, or will I simply become a caregiver at some point? Is that what being the spouse of someone with Parkinson’s Disease means?

I hope my answer to that final question turns out to be no. I married the man, not the disease, and don’t want to lose that connection. To keep that from happening, I continue looking for tools that allow him to maintain as much independence as possible. I am figuring out those things I don’t want to do for him and letting someone else help. We have a foot nurse who trims his toenails, we have hairdressers and a health aide who help with grooming. I know they can’t be here 24/7 so there will be times when I must provide care, but I don’t want it to always, or only, be me.

My husband’s illness is progressing slowly which gives us time. My personal goal is to remember that I am his wife first. The cuddles, the hugs, the kisses and whatever else we are still able to manage matter. I was at a presentation on intimacy and PD years ago when a CarePartner in the audience shared her perspective. Even though her husband was at final stages they could still hold hands, they could still spoon in bed, she could still feel the man she loved in those moments. And she knew that he was feeling it too. Perhaps it will only be moments someday, I must do what I can now to ensure that they are there for us too.

My husband loves having a glass of orange juice in the mornings. It is actually the only fruit I can get into him at that time of day. I was talking with a friend whose husband is newly diagnosed and she told me that she read somewhere people with PD should not have citrus and that included orange juice. I was shocked. I had never come across this before and decided to do my own research before asking him to make any changes to his diet.

I started by entering “orange juice and PD” in my search bar. There were a few hits and I wanted to share the three that I found most interesting. The first didn’t apply to our situation, but it seems that Harvard researchers have found drinking citrus juices may serve as a deterrent to developing PD. See more here Foods, drinks with flavonoids may reduce risk of Parkinson’s Disease | News | Harvard T.H. Chan School of Public Health. My next find was on the Davis Phinney website where they shared a guide to eating well with PD that was written by Martha Henze, MPH, MS, RDN a Registered Dietitian Nutritionist. She says that we need to stock OJ and other fruit juices and suggests it is a great way to ensure that my husband fulfills his daily needs for vitamin C. You can read her complete article here How to stock your fridge, freezer, and pantry to live well with Parkinson’s – Davis Phinney Foundation. I finally found a warning about OJ and PD on a website called Parkinson’s Disease.net that is written by patients with oversight by a medical and editorial team. In the article it mentioned that people who have problem with nausea when taking their carbidopa-levodopa should avoid acidic and citrussy foods including orange juice. Since my husband does not have a problem taking his meds, we can ignore this advice and move on. See what else they had to say here Foods to Eat and Avoid with Parkinson’s (parkinsonsdisease.net).

What this reminds me is that the internet can be a great resource, but I really need to look deeply and make sure what I find is accurate for my husband. The way his Parkinson’s presents is exclusive to him and what he needs will be just as exclusive. I must always try to confirm anything I find on at least one other website and depend heavily on my main three, the Parkinson’s Foundation, Davis Phinney Foundation and the Michael J. Fox Foundation. I always need to look beyond the basic information to the “why”. Why did they say he shouldn’t drink OJ? Because it might make his nausea from the meds worse. My husband doesn’t experience nausea, so this advice is not for him. He gets to keep his OJ.

Important to note: Anything I find on the internet should always be confirmed with our neurologist, she knows my husband and his particular situation and needs to know about any changes we are considering, no matter how small they may seem to me.

Let me tell you about today.  My husband had an appointment at the same time we usually go grocery shopping together. (Have I ever mentioned that our lives are somewhat structured?) It meant I would be shopping on my own at a later time when the store is potentially busier. Plus, I needed to buy more, since it is the week when we host our family get-together. I was stressing about the time change and I was stressing about having to do it all alone and I was stressing about whether my husband would be okay at home without me. I was so wrapped up in worry I wasn’t able to be here for my husband. I was so busy thinking about what was to come, I couldn’t experience what was happening now. 

It’s called anticipatory anxiety and I have written about it before, but felt it might be time to revisit the topic. I’m sure you’ve al heard the saying, “don’t borrow worries from tomorrow.” I need to consider that I shouldn’t even borrow from later today. My worry only interferes with my life in the moment, it doesn’t help me deal with anything that is coming later. I can’t control things that might happen even in 10 minutes, I can only do my best to be present and respond to what I am facing now.

I know that our future has a lot of uncertainty, and I could easily spend everyday trapped in worry. Instead, I will shake it off and remember that I have enough to care for on my plate right now. I’ll face those new challenges when they arrive, and I won’t waste my energy worrying about them in the meantime. By the way, I went to the grocery store and it all went okay. It took me a little longer to bag my groceries but the people around were patient and gracious. My husband was fine at home, he had been napping and remembered to take his meds. All that worry and stress was for absolutely nothing.

For the first few years after his diagnosis with Parkinson’s Disease, my husband and I were going it alone. We were both working and didn’t have time for support groups. Besides, my father had PD for several years before he died so I thought knew what to expect. I was so wrong. There was one person at work whose father had PD and we met occasionally for coffee, but our situations were so different. I was depending on webinars and bi-annual visits with our neurologist for answers to my many questions. A lot of what was happening felt so strange and I didn’t feel comfortable talking to my husband about it. I felt alone and lost. 

Shortly before I retired and became a full-time CarePartner, I started looking for a Parkinson’s Disease support group. I didn’t know what we would find but knew I needed something, someone who would understand our struggles. That first meeting was wonderful. We walked into a room full of people who weren’t staring at us or judging us, they were simply welcoming us with love. I remember crying a bit as we shared our story. It was scary joining with others who were farther along in their journey, yet it also gave us the opportunity to see the diversity. I hadn’t really understood how Parkinson’s affects everyone in such unique and different ways until we met this amazing group of people.

We have been a part of this group for several years now and I serve as a co-facilitator. I will gladly admit that the support has been more for me than my husband. It’s a place where we, I can talk about the challenges we face and often find solutions. We are able to share our journey with others who truly get it more than our doctors or our families. The one piece of advice I would give to anyone whose loved one is newly diagnosed, is don’t wait. Caring for someone with a chronic illness like PD can be impossibly difficult, find a group to help you on your journey and hold them close.

The holiday season looks different now that I live with someone who has Parkinson’s Disease, that doesn’t mean I can’t still celebrate with family and friends. I have found that the following tips help me enjoy our holidays without exhausting either of us.

1. Be honest with myself and choose activities wisely. Consider what my personal capacity is and only accept those invitations or make plans that will fit within our current situation. I don’t have to do things simply because I have always done them in the past.
2. Do my groundwork ahead of time. Talk with my husband about what’s coming up and decide together what we want to do. Talk with friends and family so they know where we both are in our journey with PD so they can be supportive and understanding of our needs. Create realistic expectations for everyone. If we can only stay for an hour, or I need the party I am hosting to only last for two, I let everyone know in advance.
3. On the day of the event, I can be a good buffer. I can help my husband connect with others but keep an awareness of how he is feeling. It may be that he simply wants to find a quiet corner so he can interact on a smaller basis and that’s okay.
4. Accept that things may be different as my husband’s symptoms progress. It’s okay if we don’t decorate the house. It’s okay if we don’t go to everything we are invited to, it’s okay to change traditions to fit what we need now.
5. Remember that this is my life too and that it’s okay for me to find time for joy in the holidays. Maybe this year I order dinner from the grocery store rather than spend the day cooking. Maybe I ask for help cleaning the house before guests come over, better yet, maybe I let someone else play the host this year. Maybe I find a way to step out of my role as CarePartner to relax and engage in the fun. It’s all okay as long as I find ways to share in the love and the holiday spirit with our family and friends.