parkinsons-disease

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.

Parkinson’s will progress differently for everyone who has it.

Just as this illness presents differently, the symptoms will progress differently. For my father, it was a quick process into dementia and delirium accompanied by freezing and stiffness, he never presented with much of a tremor at all. My husband, on the other hand, is not showing dementia or cognitive challenges other than a slowing of his processing skills, but his tremors became unmanageable early and are only controlled with deep brain stimulation and medication. Since he is not showing any signs of dementia, a friend recently commented that he was doing so well. She was surprised when I said that I agreed especially as he is in the advanced stages of his journey. I think she questioned my judgement because, as she put it, “he still has all his faculties”. My response was that he would probably be one of those people with Parkinson’s who would die with all his faculties, it’s just how the disease is presenting for us.

There are two basic scales for determining where someone is on their journey with Parkinson’s. The first is the Hoehn and Yahr, developed in the 1960s and used to evaluate physical symptoms. It didn’t take into the account the cognitive or mental challenges many People with PD faced. In the 1980s, a new scale was designed utilizing this format to evaluate movement, but adding components that test the mental and mood changes that are taking place. Called the Unified Parkinson’s Disease Rating Scale (UPDRS), it is the one used most these days because it gives a more complete picture of progression.

At any rate, it doesn’t really matter where we are in this journey. My husband most often seems to be in stage 4 to 5 which is the highest range. On his good days, he may even appear to be back in level 3, but I know it won’t stay that way. The day is coming when, thanks to the great research being done in this arena, a medical team will be able to pinpoint where my husband is currently and where he is headed. I’m not sure that would be better, I think I like the uncertainty. It allows space for hope, dreams and imagination, something I would lose if I knew exactly what we were in for next.

Even when not actively engaged in care for your loved one, you may find that they are always present in your thoughts.

I think about the Willie Nelson song, “Always on my mind”. My husband is always on my mind, that is to say I am always on alert, listening to make sure all is going well for him. It’s not necessarily a bad thing, but it is also not always a necessary thing. Nor is it a healthy thing for me.

When I am constantly on alert, the stress causes my cortisol levels to rise. Many studies have been done with family caregivers of people with dementia, but I am here to say that the same feelings exist in any person caring for a loved one with a chronic illness. It’s like I am always in a fight or flight mode, waiting for the next disaster to happen. I love those times when my husband takes a nap or sits down to read for a while because I can let go and take a break. I’m able to step into standby mode for a little while which gives my cortisol levels a chance to normalize. And yet I will catch myself looking over to make sure he’s still breathing, how crazy is that?

As a CarePartner, I know I must stay healthy in order to provide the care he needs, but how can I do that when just being here for him may be a threat to my wellbeing? There are techniques for alleviating stress, I know them and need to use them. There are opportunities for me to get away, I must take advantage of them. Finally, I can maintain an awareness of my own feelings and do my best to keep my husband always on my heart, just maybe not always on my mind.

For more information on what cortisol is and how it functions in our bodies check out this article I found on the Cleveland Clinic website entitled simply Cortisol.

Find simple processes to help you get through the unexpected challenges Parkinson’s brings.

I wake up each day wondering what will happen today. I wonder if my husband will be having a good day or bad day and will that impact any plans we might have. I wonder if any additional challenges we had yesterday will still be present. I wonder what surprises Mr. Parkinson’s disease might have in store for us and it worries me. I have developed a simple way to alleviate these concerns that I call my Four A’s.

Assess, Accept, Adapt, Adopt, these Four A’s have become a format for moving forward in my journey. It started way back when my husband was first diagnosed and we had to Assess our understanding and abilities as changes started coming. We had to learn to Accept the new direction in our lives thanks to his diagnosis of Parkinson’s. Many of the things we now do are Adaptations of what we used to do, modifications that we have Adopted to make life easier.

It starts every morning with a simple question, “How are you feeling today?” Once I have his input, I can start looking at our schedule and we can discuss whether it is reasonable or might need to be changed. I know that things can change mid-day so I always have to keep a bit of flexibility in any plans. I Assess his capabilities today, Accept where we are in this moment, Adapt to fit the situation and Adopt the new reality moving forward. I use this on a daily basis, sometimes on an hourly basis. Other times I use this same process when bigger life changes have happened. It’s calming to know that I have a system that works to help me move forward in such uncertain circumstances.

Dealing with disappointments can be really challenging for the CarePartner and the Person with Parkinson’s Disease.

According to Google, disappointment is defined as “sadness or displeasure caused by the nonfulfillment of one’s hopes or expectations.” Unfortunately, it comes coupled with anger, frustration, loss, sadness, all feelings I know well as CarePartner for my husband with Parkinson’s Disease. I know he is also facing this to an even greater degree in his daily battles. Everyone will encounter disappointment at some point in their lives, it just seems like we get to do it so much more often these days.

I continued searching my friend Google for advice on how to deal with disappointment and found some helpful information on the Harvard Business Review website. Granted it didn’t have anything to do with being a CarePartner, but the coping skills they shared seemed universal. They say that if I take the time to understand why I am disappointed, then look at what may be possible, I can adjust my expectations to look for a realistic solution that works rather than dwell on what doesn’t. This matches my husband’s approach of focusing on what he can still do rather than what PD tries to tell him he can’t. I like it.

Daily Caring, an on-line resource for Caregivers, doesn’t directly address disappointment but they do have a great article on how to deal with “The 7 Deadly Emotions of Caregiving”. They talk about the importance of acknowledgement and suggest healthy outlets for my difficult emotions. They stress the value of connecting with others and understanding that my feelings are normal. It’s okay for me to be angry, frustrated, resentful, sad, but I must find healthy ways to cope. Disappointment is going to be a part of my journey, I simply need to make sure I don’t waste more thought on it than it deserves.

Find the article from the Harvard Business Review “Dealing with Disappointment, by Manfred F.R. Kets de Vries” here and “The 7 Deadly Emotions of Caregiving: How to Cope” here.

Helping your loved one with decisions about treatments may mean also thinking about the impact any new regime could have on you in your role as CarePartner.

We visited my husband’s neurologist yesterday for his semi-annual check in. While we were there she mentioned a new process for the delivery of medication that should be approved within the next few months. It is a pump in a patch that delivers carbidopa levodopa subcutaneously. The goal is to even out the delivery of the medication into a 24 hour schedule and to make it less work for the patients as they would no longer be taking pills 5 or 6 times a day. My husband has his med schedule on his phone and it seems like alarms are always going off, it would be nice to not have to worry about that anymore. My question for her was, what is the trade off?

The process involves a patch which holds a small amount of the medication, a pump, and microscopic needles that actually are the delivery system. The patches must be changed and relocated every couple of days, and need to be monitored to ensure that they are not causing skin irritation. Some of the test subjects developed infections, or nodules at the injection site. Placement of the patches and watching out for complications would fall to me since my husband has limited ability when it comes to self-care.   

This absolutely sounds like a great break-through for delivery of his medication but is this something we could work with? Currently my husband manages his meds on his own, if we change to this new system it will require a united approach. We need to discuss the possibilities and the ramifications. Is he willing to share control of this component of his journey and how would that look? And, honestly, do I have the capacity and the capability needed to support him in this change? Finally, would it make our lives easier or more complicated? Questions we both need to answer before we meet with his neurologist again.

For more about the studies and the pump itself, check out this article “Continuous Subcutaneous Levodopa Delivery for Parkinson’s Disease: A Randomized Study” on the National institute of Health website.

Sleep deprivation is a common challenge for CarePartners.

I know I didn’t need to say it, but getting a full night’s sleep is one of the biggest challenges I face in caring for my husband. It takes me longer to go to sleep because I can’t let go of the worries of the day. My sleep is disturbed because I am still aware of any noises or movements he makes at night. We get up to take meds or use the bathroom and then my brain won’t let me go back to sleep. The reality is that I sleep less and the sleep I get is less restful which impacts my health overall.

What can I do? GREAT question and there are lots of answers available but do any of them really work? AARP shares 4 tips and their resources for caregivers that I can try. Their suggestions include creating a restful space for yourself to sleep which may be in another room, I don’t want to leave my marital bed to get a good night’s sleep. They suggest setting aside a time each day for worries, but then how do you keep them from creeping back in the middle of the night? I already have a bedtime ritual that is supposed to promote sleep and it works on occasion. Their final idea is to use relaxation techniques to help me transition into a more peaceful state of mind, something that has never helped.

It seems like I am being negative in this blog and that isn’t my intention, I’m just being realistic. One thing that has helped me is talking with fellow CarePartners and knowing I’m not alone in this challenge. Some of them have found success with melatonin supplements, others use cbd drops. I have spoken with my Primary care doctor because she needs to know that I am facing this challenge and has been working to help me eliminate any physical reasons that might be causing insomnia.

I have decided to look at those middle of the night awakenings as opportunities to get up and have some quiet time for myself. A piece of toast and some warm milk, a good book and my cat. I know I’ll pay for it tomorrow, but hopefully there’ll be time for a nap. If not, there’s always tomorrow night and maybe I’ll actually be able to sleep it through.

For more on sleep and caregivers, check out this NIH article “It’s Been a Hard Day’s Night”, Sleep Problems in Caregivers for Older Adults. The AARP article I reference can be found at Tips for Better Sleep While Caregiving.

People do not knowingly bring Parkinson’s Disease on themselves and shouldn’t feel blame, or be blamed, for the challenges it brings.

My husband and I were talking the other day when he mentioned that maybe I should write about how people get Parkinson’s in the first place. I asked him to clarify and he said that sometimes people with PD feel that they have the disease based on choices they made in life. It’s not that they think they’re being punished, but that career or perhaps lifestyle choices may have given them this illness. While there may be some truth to that concept, no one in their right mind would ever choose this pathway in life. It’s just unthinkable.

There isn’t a test that can tell us when my husband first “caught” PD. Was it exposure to pesticides when he was working in the orchards as a young man? Or, was it an injury he sustained while in the National Guard that led to this diagnosis? Was it something he did, something that was done to him, something he accidentally experienced along the way? My point is, he didn’t ask for this diagnosis and would never have made an intentional choice with a known risk of Parkinson’s Disease.

I get angry at times when I see how his diagnosis has impacted us and the changes it continues to bring to our lives. We both say freely that this isn’t how we pictured our retirement years, yet I never blame my husband for what we are missing out on and, more importantly, he shouldn’t blame himself. He did not choose PD, it chose him. I chose him too, and if that means we live with PD then so be it. All blame for the difficulties we face falls on the disease itself, not on my wonderful husband who lives with it.

One of the biggest challenges about Parkinson’s Disease is the uncertainty of where it will go and what might happen next. That may also be a blessing in disguise.

As research continues and tests are being developed that can detect Parkinsonism, my question becomes when will it be possible to define the actual type of PD someone has? Will this new research allow medical teams to tell us whether our loved ones will be facing more physical or mental challenges as their disease progresses? Will we finally have a roadmap for the journey we are on? More importantly, would I want one?

One of the things I often complain about with this diagnosis is the lack of clarity for our future. We are told that the disease is progressive and that there are many possible outcomes, but no one can actually predict what will come next for us. Now, it appears that the body of research is finding similarities in the physical makeup of people who develop the different variants of Parkinson’s. Further research should lead to a better understanding of the disease, new and better treatments and even a cure. As they distinguish between characteristics of patients showing different symptoms, it seems that neurologists may one day be able to give a clearer prognosis to individuals when the disease is first detected.

My husband was diagnosed 14 years ago and we were given lots of frightening information about possible outcomes. It might have been helpful for us to know that he would face mostly physical challenges rather than cognitive, but I’m not sure that it would have changed anything. I don’t think I want to know if cognitive challenges beyond normal aging or hallucinations are in his future unless it comes with a proven plan for treating those symptoms. I guess what I’m saying is that not knowing is tough, but knowing might be tougher. Perhaps there’s truth in the old saying “what you don’t know can’t hurt you.” I think, for now, I like not knowing every turn in the road ahead as we continue our journey with Mr. Parkinson’s Disease.