When my husband was first diagnosed with Parkinson’s I was frightened. I thought I knew what to expect based on what I had witnessed thirty years ago when my parents struggled with this same disease. My father developed cognitive problems early, I wonder now whether he actually had Lewy Body Dementia. He shut down emotionally and physically and spent his final years in a wheelchair. They had an ugly journey with PD and I was terrified that was what we were facing too. No one had yet told me the adage, “If you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”. I was preparing for the worst, and I spent a lot of time worrying.

What I have learned since then is that when I spend my time worrying about my husband and our future, it takes me away from what’s happening in the current moment. While some negative anticipation is normal, there is a huge difference between dreading what might be coming or finding ways to live fully and enjoy with what we have right now. If I am caught up in all the things that can go wrong, I miss all the things that are going right.

We are over a decade into this battle, and I finally accept that whatever Parkinson’s Disease has in store for us will come whether I worry about it or not. Instead, I am doing my best to encourage and support my husband as we meet and overcome the daily battles. When those new challenges come, we will face them with courage and positive motivation. Living for today, not worrying about tomorrow, and loving all the way, will help us make it through together.

As a CarePartner, I seem to have taken on a greater sense of responsibility to make sure we are ready for whatever comes our way, even those things that have nothing to do with my husband’s diagnosis. For instance, we are currently undergoing some inclement weather. It has been cold and snowy in our neighborhood for several days now and we haven’t been able to go anywhere. If it hadn’t been for my back-up supply of frozen foods, we would have gotten hungry. I did run out of almond milk, so my coffee has been black for a couple of days, bummer. We finally made it out to buy groceries yesterday and now they are predicting another round of snow for tonight. When is it going to end?

We always try to keep up with medications, making sure we have at least a 2 week reserve. I am not as good at keeping an eye on my supplements and one of them ran out in the middle of this storm. I have been doing without it, a reminder of the value of tracking my entire medication regime as carefully as my husband’s. There is a refill on one of his medications waiting at a local pharmacy, we’ll pick that up today before the next round of weather hits.

We have been lucky this time, our power has stayed on and we did have food to eat, albeit frozen leftovers. We keep a stock of candles and wood for the fireplace just in case we do lose power. We didn’t need to leave our house this time so we stayed put. We had almost everything we needed and now have a chance to restock before the next wave hits. Preparedness matters, whether it is for something health related or something totally outside that realm. As Bob Dylan once said, “You always got to be prepared but you never know for what.”

When I am sitting at my desk writing about the challenges of being a CarePartner, I can often work my way to solutions for difficult situations. I have my friend google to help me with options and can really dig deep to figure out what needs to be done. Unfortunately, that doesn’t always work in the real world because ‘knowing’ is a passive state, ‘doing’ takes motivation to act and is often much harder.

A great example is when someone tells me how much they enjoy reading my blog and how they are doing something I suggested. I think about the time a friend told me she moved her husband’s Aware in Care kit into her car so they are ready in case of an emergency trip to the hospital. I had suggested this in a blog after realizing that my husband’s kit sits on a bookshelf in our house and has never been used. Would you like to guess where our kit still is?

It is easy to dissect a problem when we are not in the middle of it. It is possible to devise a plan that could alleviate issues when I have the time and am in a quiet place. What too often happens, however, is that once I finish writing and step back into the busy-ness of my life, I forget all about that great solution I just created. I get caught up in the moment and never quite get beyond that. I may be able to come up with the good ideas in my words, now I need to make sure that my actions follow through and back them up.

But what if that positive intention is I am positive things are going to go wrong? Or I am positive that I am too tired to face this today? Or I am positive I need a break/nap/day off? We all get there. It may be exhaustion, frustration, or simply emotional distress but I find there are days when I just want to hide in my room and pretend that Parkinson’s Disease doesn’t exist. (I’m sure my husband feels the same way at times.) In reality, I can usually escape for about 20 minutes before something comes up.

Which brings me back to my original thought, start each day with a positive intention. This concept is what inspired me to start writing in the first place. Originally the plan was to sit down and write one positive sentence each morning. My hope was to begin my day off with the right mindset. It was a somewhat Pollyanna vision of being a CarePartner, the fact that I could create a positive word cloud around myself that would get me through the toughest situations. It was like an ever-changing mantra redefined daily to help me survive. I quickly learned that one sentence was not enough, and this blog was born to take a deeper look at my role as CarePartner.

I know that having a brief moment of clarity before I start my day may not solve all of the challenges I will face, but it also doesn’t hurt. Being a CarePartner can be difficult and negative at times but it can also be very rewarding. When the negative feelings strike, I need to step back and find my positive space even if it means letting those bad feelings come out and then putting them aside. Yes, there will be days when my outlook is anything but bright. On those days, my positive intention might be simply to remind myself that I made it through yesterday and I am strong enough to make it through today. Then, I will find my private place and hide out for just a few minutes. Those mini-breaks really can do wonders.

The older I get the more conditions I develop and the more medications I seem to need. My latest affliction is heartburn which I self-diagnosed. I was able to find relief with an over-the-counter medication. What I didn’t know about the O-T-C medication was that it not only blocks the acidity in my system, it also blocks the absorption of one of my prescription medications. I had told my doctor about both the medication and the O-T-C, but she didn’t warn me about any contraindications. I wasn’t buying them both through the same pharmacy so there wasn’t anyone to counsel me there. I found out there could be a problem when I used an on-line tool called Drugs Interaction Checker provided on the WebMD site. I had originally wanted to see if any of my husband’s meds were a problem but when he came out all okay, I decided to try for myself. I am so glad I did.

The first thing I found on this site was a tool where I could list all of our medications and do a quick check for any known interactions. It is relatively easy and only takes about 5 minutes once you have entered the list of medications and supplements you take. Looking at my husband’s medications gave me a clearer picture of what might be a problem. Then, entering my list gave me questions to take to my next check-up. The site also has information about potential food interactions. It was very helpful.

The WebMD tool is not the only one out there. I found it by searching for “drug interaction tools”. I would never recommend changing medications or supplements based on what anyone might learn from the internet. What I am saying is that this is a good tool to start a conversation with doctors. In this day and age when we get prescriptions from a mail order service, a local pharmacy and buy so many things over-the-counter, it is good to know that there is a tool where I can get information on everything all in one place. It gives me a sense of peace to know that I can look for potential problems with medications before they arise rather than deal with them after they happen.

My husband referred to these on-line tools as “artificial intelligence at its finest.” They are built on a database that can compare and contrast medications and even supplements for us. They are not human so they cannot take any special situations into consideration. That is why I recommend using them as a resource to gather information, but not as a tool to decide which meds to take. Those decisions should only be made in conjunction with a professional.

My husband got a new tool for his box this week, a walker. I have been suggesting to him that it might make things easier for him in his struggles with mobility and balance, but he has been reluctant to take this step. We met with his boxing coach for a one-on-one this past week and she had him try a couple out. He tried an upright walker and a standard and got to feel the difference they could make for him. I think that the opportunity to see how it felt, alongside her expert advice, was the determining factor for him since less than a week later he agreed to buy one.

After looking at local options, we brought home a standard walker yesterday. Now it sits in our living room, a constant reminder that this is a progressive disease and he is progressing. After being so excited about the possibility of going out for walks again, the reality has hit me like a ton of bricks. I need to let go of my fear and positively accept this change by focusing on all the things we will be able to do again. There are some who would say my feelings are petty since I am not the one needing the walker. I would remind you that I am the one in love with the one needing the walker and it impacts me too.

He needs to use his legs more and this new walker will allow him to do that. Actually, we both need to get out more and so utilizing the walker will be healthier for us both. His coach stressed that in order to improve his stability and stamina, he needs to practice, and this is the way for him to get there. I need to remember that in this long-term battle with PD we must utilize every tool available to us. This may not be where we want to be, but it is where we are. This is not as a sign of things to come, but instead is a tool we can use to hold them off a bit longer. We can fight this battle together as long as we keep hold of our positive attitudes.

Even as I write this I realize that no matter what I am doing these days, I am always multi-tasking. One part of my brain is always watching and listening to hear what my husband is doing to make sure he is safe. It is my alert system and the only way I can shut it down is to get out of the house and away from the situation either by taking a walk or doing yoga. It takes an activity that fully engages all of my senses for me to really let go.

The fact that I am always on alert means that anything else I add is multi-tasking. I am sitting here at my computer writing and yet I still listen for my husband moving around in the other room to know he is okay. I have laundry going so that means I am doing at least three tasks. I am thinking forward to a meeting coming on Friday, is that a fourth? Oh wait, here’s the cat, did I feed her? It is no wonder that I reach the end of the day with things still undone when I am always juggling so many at a time.

I consciously try to put everything aside when I am working with my husband. We exercise together later today and for the hour we are in that room all I will be focused on is the workout. I need to be present in that moment to make sure we are both safe, I cannot afford any distractions. If only I could remember this in all the things I do. Perhaps I could avoid cutting my fingers while preparing food, forgetting to return calls, or getting lost when driving somewhere. My mind is so busy, I need to calm it so that I can take care of the two main tasks I have, caring for my husband and safely surviving my own life.

Okay, I know it is a bit crude but isn’t it factual? There are days when I just feel like that beetle. Everything I try to do simply leads to more that needs to be done. The load gets heavier not lighter, how can that be? I am afraid that if I stop pushing for even a moment it will overwhelm and crush me, but stopping is exactly what I need to do. I need to stop, think about what I am doing, and find a better way to go. And, that better way usually involves asking for help or sharing my challenges with someone else.

It’s not easy to admit that I am not Wonder-woman. I should be able to do it all, shouldn’t I? After all, there is an old adage that says “you’re never given more than you can handle”. What if handling it all  includes knowing when to give up and call for help? What if it means being wise enough to recognize that I have limitations and that pushing beyond those puts me and my ability to care for my husband at risk?

I have a wonderful husband who is still somewhat capable and can help me figure out how to face certain challenges. I also have a support network of friends and family who are there for me whenever I ask, I certainly don’t have to walk this journey alone. I have developed a network of community supports, people who can help me with the bigger chores I can’t or just don’t want to handle. There are people who are willing to take on some of my challenges, even if it is just by listening to me whine over a cup of coffee, just as I am there for them. So, maybe it’s time I stopped being the beetle on this uphill battle and started sharing the challenges and the love that comes along with it.

My husband has balance and stamina issues. I decided that he needed a cane to use for outings. I was sure it would be safer and allow him to walk farther. We purchased one together, allowing him to try several and then choose the one he liked best. We brought it home and it sat in a corner for over two weeks before he touched it again. I suggested on several occasions that he might want to use it and even gave him a bad time when we were in public and he didn’t have it with him. I tried handing it to him once or twice as we were getting ready. It was when I gave up and stopped bugging him about it that he actually picked it up and took it on his own. When I gave control back to him, where it really should have been in the first place, he decided to give it a try.

I struggle with trying to make his life easier, even when I don’t really know what that might look like. I want things to go smoothly so I encourage him, perhaps too much, to try assistive devices that I have heard about or that we see other people using. I forget that he needs to be challenged at times so he can keep his skills intact. If everything becomes easy, there is no work involved and his condition will worsen.

I am not going to stop bringing things home that I think might help but I am going to try to step back and give him the space to explore how and when they could be useful. The cane may become something he needs all the time at some point, for now it is simply an aid for when we are going to be walking or standing for long periods of time. After all, he knows better than I do what his capabilities are, how strong he feels each day, and what tools he might need to help him get through.

My medical vocabulary has grown on a regular basis since my husband was diagnosed with Parkinson’s and especially as he develops new and different symptoms. I never knew, or really cared, what dopamine was or how it worked in our brains before. I now understand just enough about neurotransmitters and synaptic connections to know that they are not working like they should for my husband. I have learned technical terms for his symptoms and the medications that are needed to treat them, things like what agonists and anticholinergics can do in combination with carbidopa and levodopa. I have had to learn much about neuro-this and neuro-that, definitely more than I ever wanted to know.

One of my first lessons was about the loss of muscle control known as ataxia which resulted in tremors and clumsiness. In his case, this presented along with bradykinesia or muscular slowness. He can no longer multi-task thanks to bradyphrenia, a slowing of the processors in his brain. Another long-term issue is xerostomia or dry mouth. He dealt with this for years before we realized it could be a piece of his Parkinson’s. He developed microphagia, or cramped handwriting. My husband had excellent handwriting skills prior to this illness, now even his signature is illegible. He lost his smile to hypomimia, the facial masking that comes with Parkinson’s Disease but thankfully his deep brain stimulation surgery gave that smile back to us.

Then there is a whole family of “D” words. They are the ones that define some of his biggest struggles. When he gets tired he sometimes displays mild dyskinesia or uncontrolled muscle movements. He has dystonia in his feet which causes painful morning cramps. He has dysarthia which slows and slurs his speech and can interfere with his ability to swallow. Swallowing issues are also referred to as dysphagia. There’s a term we often run into called dysregulation and it can be applied to other functions to show their failure. One example is thermodysregulation, his body’s inability to regulate his internal temperature. He is always feeling either too hot or too cold. And of course there are 2 other “d”s that can be a factor in PD, dementia and depression. So far we aren’t dealing with either of those.

I never realized that I would need to have such an extensive knowledge of medical terminology when he was first diagnosed. It is essential that I understand what his doctors are saying if I am going to provide the support he needs. I am getting better at asking questions of his neurologist and the rest of the medical team but my real go-to reference is the Davis Phinney guidebook entitled “Every Victory Counts.” I keep a hard copy on my desk and look to it regularly to clarify where we are and to prepare for where we may be tomorrow. You can find a copy for yourself on their website at Every Victory Counts Manual – Davis Phinney Foundation.