Author: cptricia

The Parkinson’s community is larger and stronger than many of us realize and includes many wonderful and welcoming people. You never have to travel this journey alone.

I first learned this concept when I finally found the courage to reach out to a local support group. My contact was a phone call to one of the facilitators, a gentleman who had been diagnosed with Parkinson’s a few years earlier. He explained that he and his wife led a monthly group and shared some of his story while encouraging us to come to the next meeting. He assured me that we would be welcomed and that we would find good support and ongoing resources. We spoke for almost 10 minutes during that call and I understood that I had found someone who could help both of us as we faced uncertain and difficult times ahead.

When we got to the meeting, his smile was warm and welcoming as he brought us in and introduced us to his wife and then to a few others in the room. His Parkinson’s symptoms were mild yet visible; some of the others around us appeared further along in their journeys. It was obvious that we had found ourselves in the midst of a like group of people. I was so thankful that I finally gathered the courage to reach out because it was obvious these folks would have much to offer us. It actually felt like we had found a new family.

These memories are close to my heart today as this lovely man passed in his sleep last week. His contributions to the local PD community were so valuable. I hope his journey ended peacefully and that he knew how much he meant to so many of us. Rest in peace my friend and know that you helped us connect with a lifeline on this journey. You will not be forgotten. 

As your loved one’s symptoms progress, so must your skills as a CarePartner. Be mindful of when you are reaching beyond your limits.

I know I can’t do it all and really shouldn’t even try, yet each day I learn I can do more than I thought I could. The only thing that I can truly depend on with this disease is that it is going to throw new and different challenges at us as my husband’s symptoms progress. My job, in addition to figuring out how to address these new challenges, is to recognize when I am hit with something beyond my capabilities or capacities and know to reach out for help. This can also apply to those things that I can do, but just need a break from. Again, I must remember that it’s okay to let others help even with the most difficult tasks because I can’t do it all alone.

Tackling new challenges means keeping an open mind and accepting that they often happen at inopportune times. Things that happen when I don’t expect them to can mean compromising to get through until a better plan comes to light. I can still try to manage things myself, simply as a temporary measure, until a better solution comes to light. Or, I may need to step aside and let someone else take the lead so I can take care of myself in the moment understanding that is okay too.

I feel like I am rambling a bit here, but what I am trying to say is that I will continue to face challenges that come up unexpectedly in the best way I can. I will help my husband get through whatever it is, wherever we are. Then I will regroup after and decide if it is something I can do well or if I need to delegate. He is the one who taught me that just because I can do something, doesn’t mean I should. He is a wise man, I think I’ll listen to him.

Cold weather is difficult for most People with Parkinson’s to tolerate due to a condition called thermodysregulation.

My husband is cold all the time these days except at bedtime when he says our comforter is too hot and throws it off. Granted, we are in the middle of winter but he is in a warm house and dressed in a sweatshirt so how can he still complain about being chilly? Then we go to bed where he only has a sheet and comforter covering him and suddenly he’s too hot? It makes little sense until I remember that thanks to Parkinson’s Disease his internal thermostats are haywire. The medical term for this condition is thermodysregulation and can actually be life threatening if not monitored carefully.

In order to understand thermodysregulation, we first need to understand what thermoregulation looks like. Our bodies work to maintain a steady temperature so our organs will function at their best. We utilize multiple physical reactions to accomplish that. When we get overheated we sweat, when we get cold we shiver to warm up. Our blood vessels dilate or restrict and our metabolism speeds up or slows down according to whether our body is too hot or too cold. In addition, we need to be able to accurately judge when we are hot or cold and make accommodations to our environment whether it’s adding or subtracting layers of clothing. This regulation is a delicate balance that is thrown off by neurologic disorders like Parkinson’s Disease which can distort my husband’s perception of his current condition and complicate any attempts he may make to overcome it himself.

Untreated dysregulation can lead to episodes of hypo or hyper-thermia where my husband gets too cold or too hot. It might be difficult for me to recognize because the signs of both include drowsiness, fumbling hands or slurred speech which are common PD symptoms. In other words, I need to pay attention when he says he is either too hot or cold because he probably is. I will keep our home thermostat at 72 and have a few throws available in case he needs more. And, I will make peace with whatever works for him at bedtime. I can always add an extra blanket to my side after all.

To learn more about this condition and how it can affect our loved ones check out Thermoregulation: Types, how it works, and disorders on the Medical News Today website.

Most CarePartners are well aware of Bradykinesia, the physical slowness that accompanies a Parkinson’s diagnosis. It is important to understand the effects of Bradyphrenia, slowness in brain processes, too.

Those Brady twins, as I have come to think of them, are the bane of this Parkinson’s CarePartner’s existence. They work hand in hand to slow down everything my husband tries to do. It is no wonder that he feels exhausted when he is having to consciously work with his brain and body to do activities that were once automatic. He pushes back on the physical challenges by exercising. Staying active has helped him slow the progression of symptoms and gives him some semblance of control of his body. We can only hope that this activity also helps speed up the processing centers of his brain, but it’s much more difficult to gauge.

One of the questions his neurologist asks is whether he can do complicated or multi-step tasks and the answer is no. He used to be able to handle multiple challenges easily, but now has to have directions broken down into smaller steps. It isn’t that he doesn’t have the capability, it’s that his brain must work through each step and send instructions to his body before moving on. It becomes a difficult and tedious problem for both of us as I try to help him and often just make things worse.

I am learning to practice patience and step away so he can complete things in his own way and his own time. I am learning to ask single questions and wait for his response before adding to the conversation. I am learning to let him know when we need to hurry and ask if I can help or take over a particular task to get it done. I am trying to be respectful of the man who is trapped in a body that becomes more difficult for him to manage every day thanks to Mr. Parkinson and those darn Brady twins.

When introducing your loved one to a new caregiver, be sure to discuss their strengths as well as the challenges they face.

We have been dealing with changing caregivers and I have designed a spiel to share with them on that first day because what you see when you meet my husband is not necessarily what you get. His appearance can be deceiving and they need to understand his strengths and capabilities which outweigh areas where he may need help. His Parkinson’s symptoms often mask his true persona and I don’t want them to get stuck in a first impression that may not be great depending on the day and what is happening with his medications.

I like to learn about their experiences while also letting them know what they may face in our home. One thing I always ask is whether they have ever worked with someone diagnosed with Parkinson’s. This gives me the opportunity to remind them that everyone with this disease presents differently. The conversation usually starts in our kitchen and moves through the house as I explain the tasks I need help with. We finish in the living room where so we can include my husband in the discussion.

After a brief overview of what we have covered so far I ask my husband if there is anything he would like to add. If he doesn’t mention it, I will share specifics about his situation as they relate to his physical and cognitive challenges and remind the helper that he really prefers to do things for himself. I work to make sure any words I say are respectful and reflective of where he is in this moment while acknowledging the changing dynamic of his condition. I then walk away and give them a chance to figure things out. After all, he is the reason they are here and he is the one they really need to please as they figure out what this job truly entails.  

Low energy days can be a part of the Parkinson’s journey for your loved one. Don’t let them negatively impact your day.

My husband keeps a pretty set routine so when he says he doesn’t feel like participating in his exercise or PT, I know something is up. We understand that he sometimes has what are referred to as off or low energy days. There doesn’t seem to be a reason for them, they just randomly happen. When one of these hits, it is all he can do to get out of bed. He often recovers by mid-afternoon, occasionally they last the entire day. My challenge is to make sure he is okay while I continue with whatever I have planned for the day. It’s not always easy.

My emotions appear to be keyed into him. When he is off in any way, my anxiety levels go up. He is resting, recharging, and I am amping up from the stress of wondering what I can do to help him. I don’t like to see things going wrong for him without knowing why. The energy drop probably is caused by his Parkinson’s but what if it isn’t? Should I be doing something more? We actually did head out to the Emergency Room once and that turned into a bigger issue for us both. After several hours waiting, it was determined that his PD was to blame. It took him days to recover from the ER visit.

I have found that simply providing a good meal followed by a nice long nap can sometimes reset his body. In the meantime, I try to detach from my worries and move ahead with any chores or plans I have for the day. I don’t leave him alone when he’s feeling like this and may check on him a bit more. If he isn’t better on day two, I call his doctor or take him to urgent care. So far that has only happened once. They were able to determine that he had a mild viral infection and sent him home to rest. Most of the time he is able to acknowledge it as a low energy day and move on. It’s all just another part of our uncertain journey with PD.

When your loved one is first diagnosed, don’t waste time or energy asking why this happened, instead ask what you can do to do support them as they figure out how to continue living with this disease.

I used to wonder why my father and then my husband were afflicted with this disease. It’s a typical response, when bad things happen to yourself or people you love you want to know what caused it. I finally came to the realization that knowing why wouldn’t help us get through. I needed to know how we keep on going, what it takes to fight Parkinson’s, and what they might need from me as they try to live life as fully as possible. The why is something researchers can ponder, the how to move forward is what guides my daily activities and gives me purpose on this journey.

The most important thing for me to accept about this diagnosis is that he didn’t do anything intentional to bring it upon us. It is a disease, it happens, there is no blame or shame here. Was it caused by something my husband used while working in orchards as a young man? Maybe, and we can advocate for pesticides to be banned so that no one else will be exposed. It doesn’t change his trajectory. At this point in time, knowing where it came from is not going to change how his symptoms present or define his treatment plan.

It doesn’t matter why we are facing this challenge, it only matters how I respond to it. My focus needs to be on today, where we are on this journey, and what I can do to make it as good as it can be for both of us. My job as his CarePartner is to remain positive or as my husband says, “focus on what we can do, not what we can’t,” and be grateful for every moment that we have together. I have to keep moving forward with purpose and not let myself get lost wondering why it happened. That train of thought takes me nowhere.

The non-motor symptoms of Parkinson’s Disease are more difficult to understand and treat.

My husband presents with mostly motor symptoms. He has tremors, stiffness, freezing of gait, balance and speech issues. He does have mild cognitive impairment, which may be related to his diagnosis of PD or to his age, he is in his 80’s now. The physical challenges are easier to diagnose and treat. He controls many of his challenges with medication and through deep brain stimulation. However, my father was a classic example of what the non-motor symptoms of Parkinson’s can do to the thought processes of the brain. He was fully engulfed in hallucinations, delusions and paranoia early on. There were no medications to help him find reality in his days and it was extremely challenging for all of us as we tried to make sense of what was happening.

Thankfully, much has happened in the world of dementia and Parkinson’s research since my father was diagnosed back in the 1980s. A lot has been done looking into Alzheimer’s Disease and much of that applies to PD Dementia too. Some of the best work is in recognizing, understanding and supporting mental health for everyone with Parkinson’s and their loved ones. There are medications and behavioral treatments that can be useful for some. Life with PD Dementia or Lewy Body Dementia does not have to be the same nightmare it was for my parents.

The essential component here has to be communication. Even though I know it must be terrifying for my husband to consider what might be coming, I have to be willing to talk honestly with him about his mental health whether it’s anxiety or more serious concerns about dementia. He needs to know that it scares me too. If he does develop hallucinations or delusions, it is not my job to keep him connected to reality but instead to walk alongside him in whatever reality he is experiencing to make sure he is safe and calm. It is my responsibility to let his medical team know what I am seeing. He may not always be able to accurately assess his cognitive challenges, I need to watch and report so the best treatment plan can be created. Then I need to try my best to be patient and understanding as I help him follow it.

For  more information, see the section of the Parkinson’s Foundation website simply entitled Dementia.

Medical care for the CarePartner is just as important as medical care for the Person with Parkinson’s.

I have been dealing with some medical concerns of my own the past couple of weeks and it reminds me that I need to have a good medical team that I can trust just as my husband does. My current Primary Care Provider is a Physician’s Assistant. She is competent but she only works 3 days a week and has coverage from other members of the clinic team when she is not there. It creates a rather piecemeal approach to care and is not really working well for me, yet I don’t know quite what to do.

This situation came to a head last week when I was having a problem with one of my medications and reached out for advice. My regular PCP was not there so I got to speak with one of her covering professionals, a Nurse Practitioner. We had a great conversation and created a treatment plan that included blood tests. When the test results came in, a different Nurse Practitioner interpreted them and made recommendations of her own that were contrary to what I had been told just 2 days before.

I spend a lot of time and effort attempting to make sure my husband has the best care available which can mean that I often don’t have the capacity left to face my own challenges. Yet, if I am not taking good care of my medical needs then how can I be at my best when he calls for help? It has been over a week now and I still haven’t heard a word from my actual PCP. I’ll be reaching out to the office manager later today to see if she can help me sort this out. If not, it may be time to step back and address building a new team for myself, if only I can find the time and energy.

Parkinson’s and Pro-biotics can be a useful combination when trying to manage gut issues.

My husband recently had a bout of intestinal upset accompanied by about 2 weeks of intense diarrhea. We worked to keep him hydrated and, since he never exhibited a fever, he didn’t visit urgent care until it was too late for them to be able to detect what was causing the problem. As things started to settle, his caregiver mentioned that probiotics might be helpful in getting his gut back to a normal state. Knowing that my husband is not good at eating lots of green vegetables nor does he like yogurts or pickled foods that might contain live cultures, I decided to try a probiotic pill. We spoke with his neurologist about this and she agreed that it couldn’t hurt.

Let me back up a bit to say that before this episode my husband used Miralax regularly to keep things moving. He went off it when the diarrhea hit and hadn’t started it again. The probiotic we chose was a generic version from the local drug store. He took one a day with his breakfast. We saw a change in his movements within about a week, the consistency was easier to control and he was more regular. We decided to try adding the Miralax back into the mix, but it seemed to make things worse so are now stopping the laxative to see what the probiotics can do on their own. 

Studies have been done on the gut microbiome and how it influences Parkinson’s Disease. I really didn’t look into that topic choosing to focus instead on the impact to his bowels and issues with constipation. So far things are looking good, if he also gets better absorption of his carbidopa levodopa, then that will make it even better. Anything that makes our daily lives even a little bit better is a win in my book.

My information for this blog came from observing my husband’s experience and the following two websites: https://www.apdaparkinson.org/article/probiotics-and-parkinsons-disease/ and https://www.nccih.nih.gov/health/probiotics-usefulness-and-safety. I am not advocating for the anyone to use Probiotics but do encourage everyone to research this topic.