health

A good night’s sleep is one of the most elusive desires in a CarePartner’s life.

I am so tired, excuse the pun, of people telling me how important it is to get a good night’s sleep. I totally know this. What I don’t know is how it can be possible while I am living with a husband who has Parkinson’s Disease. I remember the good old days when I would go to bed at 11 and not wake up until 8. It was wonderful. Now I try to be in bed around 10 and, while we still don’t get up until 8, I am lucky if I get 4 or 5 hours of uninterrupted sleep during that time.

He would tell you that it is not all his fault, and he would be right. I have a bladder that wakes me at least once every night and we both have medications to take that get us out of bed briefly at 6. Menopause, in all its glory, has left me with night sweats that randomly interfere with my sleep. However, when he needs to get up at night, whether to use the bathroom, get into a new position, or adjust his side of the bed, I get to help and then I am wide awake. Regardless of which one of us wakes me, I am losing that deep restful sleep we all need.

I have spoken about this to medical doctors, therapists, an acupuncturist, a massage therapist and a chiropractor. They were all very “helpful” and had lots of the same suggestions about creating a healthy sleep environment, yet none of it worked. My only solution has become to let the bad night happen and then take naps during the day whenever I can. My chores for that day may not get done but so what. I make it through and, hopefully, the next night goes better and gives me a chance to catch up.

Stay abreast of advances in treatment, you never know when they might be beneficial for your loved one.

When my father had Parkinson’s 40 years ago, we didn’t hear much about research. The only time my mother was approached about it was after his death when a local medical school asked if they could autopsy his brain for research purposes. Of course she said yes. My husband and I, on the other hand, have been watching and participating in research ever since his diagnosis nearly 16 years ago. There have been many exciting changes in detection and even some in treatment of this disease and a few have actually impacted our journey.

It started with my husband participating in a couple of medication trials. His symptoms were recorded and then progression was tracked for years through other studies. I have occassionally been able to take part as part of a non-PD control group. We have seen medications developed to help slow the progression of his disease, we have seen gene therapies and tests developed that can detect the illness before symptoms even show. We have seen more effective and easier ways to deliver carbidopa levodopa, the basic treatment for most Parkinson’s patients. My husband’s new controller for his deep brain stimulator has the capability of adapting delivery to need based on biofeedback it can gather from sensors in his brain. We aren’t using that feature yet but maybe in the future?

Much of this research is driven and funded by individuals who were diagnosed themselves. Perhaps that is why things are happening, the people who are in charge understand PD challenges because they are living it. Whereas federal interest in funding can come and go with elections, the foundations created by people like Mohammed Ali, Michael J Fox, and Davis Phinney to name just a few, keep doing the work for all of us. I am sorry that these people were afflicted with this disease, but will forever be grateful for their contributions to finding treatments and, hopefully, one day a cure.

Physical support for your body is just as important as emotional support for your soul.

“Listen to your body whispering before it starts to yell.” I was participating in a Parkinson’s Foundation Mindfulness session the other day and the presenter shared this with us. She was introducing the session for the day and shared that taking time to check in and listen to our bodies can sometimes help us avoid mental burnout. It was an interesting “aha” moment for me as I realized that she was right. If I don’t listen to my body and make sure its properly supported, how can I possibly expect to find the emotional support I need on this journey?

Getting in touch with my body is not an easy thing for me to do. Ask me about my husband and I’ll tell you all about his medical complaints from a sore knee or shoulder to stiffness and swallowing issues. Ask me how I’m doing and I reply “Fine”. It was so nice when the instructor asked us to think about our feet and how they were connecting with the floor. We worked our way up considering all the parts of our bodies and how they were supported, relating to them without judgement. We were passively listening for messages about tension, tightness, stress or pain.

My emotional state is absolutely tied to how I am feeling physically. Relaxing my body releases my mind to let go, even if just for a few minutes. This is also why I enjoy yoga. When I’m focused on my physical state, my mental state can take a break. But, and this is a big one, my body needs to be properly cared for in order for me to be able to truly surrender. That’s why I must find time to listen for the whispers and act appropriately to support not only my body, but also my spirit and my soul.

You can find the Parkinson’s Foundation’s Mindfulness Monday series on their U-Tube channel by clicking here.

Sometimes the challenges I face are all about my husband’s diagnosis of Parkinson’s but most of the time they are based in my role as his primary caregiver.

It’s interesting to me that ever since my husband was diagnosed with PD, we are on the same journey yet we are not. We share much due to his disease but our responses to the changes it has brought to our lives are obviously different. He faces the actual loss of physical and mental capacity, I face the loss of my partner in life. He struggles daily with survival, I struggle to pick up the pieces left behind. His battles are direct while mine are more behind the scenes, yet all are just as important in managing our daily routines.

It is important that I recognize these basic differences in our needs. Support in his journey will come from the traditional Parkinson’s organizations but for me it can also come from caregiving networks. I have much in common with other Caring Partners struggling to make it through their days whatever their loved one’s diagnosis might be. While the actual work we do may be different, the emotional toll of caring for a loved one with a chronic or terminal illness is going to be universal. We all face frustration, exhaustion, grief, and loss and can be a valuable resource for each other.

While I am active in PD support groups, I also seek other options. It is vital that I remember PD supports are there because of my husband and his diagnosis, Caregiver supports are there just for me. There are a couple of on-line resources that I use regularly. The help available on these websites is more relevant for what I need, rather than a response to what is happening with him. It is much appreciated advice for me because of what I am facing and not as an extension of his diagnosis.

On-line resources I find helpful as a CarePartner include Family Caregiver Alliance; Caregiver Action Network; even AARP.

Knowing when and how to treat your loved one with Parkinson’s for a non-Parkinson’s condition can be tricky.

We have been dealing with chest colds at our house That means congestion, coughing, and feeling pretty lousy over-all. Neither of us developed a fever so it doesn’t appear to be anything more serious. We tested for covid early in the process and those were negative. To care for ourselves, we’ve been resting and hydrating. I researched Parkinson’s websites to find safe over the counter solutions for chest colds and found guaifenesin for congestion. We are both drinking lots of hot tea and using acetaminophen for body aches. It’s taking a while but we do seem to be showing signs of recovery.

Should we have gone to the ER or Urgent Care? That’s a difficult and personal decision. I know from past experiences, trips to the ER can be more damaging than helpful. And, I anticipate that the only advice they would give us after waiting hours in an unhealthy environment would be “go home, rest and hydrate”. Exactly what we are already doing. They could possibly provide us with a more definitive diagnosis, but does it really matter if it’s a chest cold or bronchitis? Both are treated in the same manner. Heaven forbid they would want to keep either of us in the hospital, I have seen too many of our friends go in with congestion and not come home.

My gauge on whether to seek further treatment is based on something I learned as a young mother. When I see lots of blood, broken bones, fevers, difficulty breathing or unconscious, we head straight to the ER. Falls that we can’t get up from, I call 911 for assistance. Otherwise, I do my best to provide home care and PD safe OTC remedies. Chicken soup and love are still the best cold treatments I have ever found.

Click “What Cold Medicine can I take with Parkinson’s” to see the article I found that talked about safe cold meds for people with PD.

Constant stress is a component of the journey. Be mindful of the tools you use for relief.

I have mentioned this statistic before, more than 60% of spouses caring for their partner with a chronic illness die earlier than their non-caregiving peers. The constant stress we face is a huge contributor to our higher mortality rate. I am on duty with my husband 24 hours a day and, other than the hours when we are both sleeping, I am checking to make sure he is okay. I even sometimes wake in the middle of the night and listen for his breathing. This continual state of alert takes a toll on my health.

My stress reduction plan includes exercise, deep breathing, taking breaks to read a good book and journaling. Weekly yoga classes provide an opportunity for meditation, neighborhood walks are great for clearing my head. Reading alongside my husband allows for a mental escape and gives us something to talk about. In those moments when I feel like I’m about to explode, nothing calms me faster than to step back and take a couple of deep breaths.

I often joke with fellow CarePartners about the value of a good glass of wine on a long and difficult day. Or even on a normal day, come to think of it. Those single glasses of wine are acceptable as long as they are only one piece of my stress relief program. Chocolate and other sweets are also options for dealing with the daily pressures. Again, not a problem when eaten in moderation. I just need to remember that sticking with my healthier choices like exercise and journaling keeps me present in the moment, which is always better for my husband and for me.

For more on the stress we all face as CarePartners, visit “Caregiver Health” on the Family Caregiver Alliance website. To learn more alleviating some of that, visit “Caregiver Self-Care: Caring for You” on that same website.

Research into Parkinson’s continues but don’t wait for a cure. Encourage your loved one to do everything they can now.

I get often get information on new research breakthroughs for Parkinson’s Disease in my daily newsfeed. It is good to see so many scientists are working on this topic, however, it is still doubtful anything will lead to a cure for my husband. The latest note I received talks about a new imaging technique to see the smallest alpha-synuclein clusters with the hope they will be able to detect a pathway for early development of the disease. An exciting development, but they are only able to detect these in a post-mortem brain. This is not really helpful for those living with PD. It reminds me of when my father was diagnosed in the 1980’s and the doctors told him they felt he had Parkinson’s but couldn’t be sure until after he died so they could autopsy his brain for confirmation.

In the meantime, the only proven method of slowing this disease is exercise. Movement of any sort helps, the more the better. Funny since movement is often the thing PD targets first. Thankfully my husband has taken this advice to heart and tries to work out 6 days a week. He likes structured classes and does 2 days in-person plus 3 days on Zoom. We both go to the gym on Saturdays so he can get in some cycling. I think it is working for him because he was diagnosed 15 years ago and is still with me.

I am grateful for all of the research being done, but would like to see more of it directed towards reversing the effects. Until they do, I will keep encouraging him to do his exercises, keep taking him to his classes, keep going to the gym with him. It’s what I can now do to help him slow things down and preserve more of what we have. And with his focus on exercise, I’m also getting healthier. It’s a positive consequence for us both.

Worry, anxiety, anticipation can be as exhausting as physical activities. Find ways to give yourself a break from these stressors.

I look back at my day and wonder why I’m so tired. I don’t recall doing anything that was physically taxing yet I feel like I’ve run a marathon. It was a day when we didn’t have any outside help, could that be the reason for my complete exhaustion? My husband was having a low energy day so I was more on alert than usual, watching him to make sure he was okay, perhaps that has something to do with it all?

Taking a break on those worry filled days would be great, but how? Most importantly I need to recognize what’s  happening. Too often I am so caught up in the moment that I can’t see the bigger picture. Taking a break has to start by simply taking that break. Give myself a moment to think about what’s going on. If my husband is having a tough day, is there anything more I can do to make it better for him? The answer is usually no. Next I need to ask if there’s anything I can do to make the day better for myself. That answer is usually yes and involves either taking a walk, sitting with a good book, or maybe just some deep breathing. Whatever will help me break the cycle of stress and anxiety. Once that’s done I can get on with my day and let him be.

It may sound self-centered, but unless I am willing to actively put my needs first, I am not able to be here fully for my husband. I know that I have said this before, yet sometimes I forget that my mental and physical health is more important to the dynamic of our journey than his. My husband is on this PD trajectory and, while we can’t control it, we can work together to fight it. My worry, anxiety, and anticipation of what is going to go wrong next are stressors that negatively impact our lives and are things I can control. In order to be here alongside him, I must take care of me. It’s not selfish, simply a fact of my life as a Parkinson’s CarePartner.

Aspiration Pneumonia is a leading factor in the death of up to 70% of People with Parkinson’s Disease.

Swallowing is kind of an important skill to have. The ability to get foods and liquids past the windpipe or trachea and into the esophagus is complicated and involves different muscular contractions that do not work as well with PD. This difficulty is known as dysphagia, for Parkinson’s patients it is usually oropharyngeal dysphasia, which refers specifically to the transfer process. That muscular process that my husband uses to get food and water into his body is wonky and causes him to aspirate or allow substances to enter his windpipe. This often leads to aspiration pneumonia which can kill him. I had never heard of this before it was listed as a contributing factor in my father’s death from Parkinson’s.

We are working on a few different things that help but unfortunately my husband still has episodes of aspiration. He is in speech therapy, recognizing that the muscles that help him speak are also the muscles he needs to chew and swallow. Another technique he uses is breathing practice which he does on his own, he calls it his huff and puffs. We ordered a tool called an EMST150(Expiratory Muscle Strength Trainer) that he uses several times a week. Blowing short puffs into the device helps build muscle strength in his throat. My task is to have an awareness of the foods we eat. I work with him to make sure that anything I put in front of him is easy to chew and swallow.

He has undergone 2 swallow tests in the past few years, his most recent showed that he appears to be aspirating small amounts of liquids even without the cough or choking. Our next step may be to thicken his drinks but I don’t think we’re quite there yet. In the meantime, I try to be present whenever he is eating or drinking and he does his part by exercising those muscles.

Find more about the connection between aspiration pneumonia and PD in this study Risk and mortality of aspiration pneumonia in Parkinson’s disease: a nationwide database study.

Be kind to your loved one with Parkinson’s, be even kinder to yourself because this is a shared diagnosis and it will impact your life too.

I woke up this morning and greeted my husband with a cheery “Welcome to Tuesday!” I went through a countdown of the month to determine it was Tuesday the fifth of August. Only once I had finished did my husband speak, “It’s actually Thursday”. We both had a good laugh and I then redid the morning recap and corrected it to Thursday the seventh. What a way to start my day!

That’s really just one way that his diagnosis of Parkinson’s has impacted both of us. I do the morning countdown to remind us because our days are no longer known by their names, it’s what we’re doing relative to his disease. Tuesday and Thursday are Boomerang days because that’s when and where he goes for movement classes. Monday and Wednesday are caregiver days and go by the names of whoever is coming to stay with him. Friday is either known as a support group day or named after his coach on zoom. Our lives seem to revolve around the interventions we have put in place to help us manage this disease.

As his symptoms progress, more adaptations to our lives come into play. It’s important to be mindful of the foods we eat and how they are prepared to make sure he can manage them. We modify our home, age-proofing it if you will. We don’t go out as much anymore and only to familiar locations that are easy to access. Old friends drop away when we can’t participate in the same activities anymore. Much of our time is spent doing what we must to get through the day and little on those things we actually want to do so hobbies for both of us tend to go by the wayside.

Getting back to my original premise, it is essential that I be kind not only to my husband but also to myself. I am living as a CarePartner without a roadmap on this journey uniquely based on his diagnosis and progression. Parkinson’s is changing my life in ways I never really expected so I accept, adapt, modify, endure and give myself a break when I feel angry or frustrated about what we are facing. I can only do so much and there will be moments when I feel it isn’t enough. That’s when I remember to be kind and forgiving to myself while making the best of the situation we have both been put in thanks to this disease.