Author: cptricia

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.

Losing friends to this disease is the most difficult component of being part of a Parkinson’s support network.

It happened again, we lost a friend from our support group. I grieve for our loss and my heart goes out to his wife, one of the most compassionate and caring Partners I have met. I hate these goodbyes because they remind us of the inevitability of the diagnosis. At the same time, had it not been for my husband’s Parkinson’s Disease we would never have had the chance to know this wonderful couple and share in their journey. I am so grateful for that opportunity.

We first met this gentleman at a movement and speech class. He was a constant in the group working to overcome an already soft voice. He and his wife joined us in other support group activities sharing meals and workshops. She brought much grace as his Caring Partner and often showed me ways I could be more patient and kind through her example. It was this wonderful woman who introduced me to the concept of the tiny cuts we experienced every day watching our husband’s disease progress.

When we first started attending PD support groups my expectation was to learn more about what was ahead for us. I was hesitant at first not sure I really wanted to know our future. I now understand that it is not our future that I found but our present. Fellow travelers on this journey who were able to share their stories of meeting the challenges we all faced. These folks actually understood us more than our family ever could. Yes, it’s difficult to say goodbye, but without the loss we wouldn’t have memories of the good times we shared together. And they will always be a part of every group gathering even if it is just in my heart.

Don’t blame yourself or look too hard for solutions when your loved on is having a bad day. Blame the disease.

My husband was having what he referred to as a “low energy” day. He was tired and not interested in anything. His balance was off and nothing seemed to be working well. He didn’t feel good enough to exercise and spent most of his day on the couch napping. It was difficult for me to leave him alone, I kept checking in to make sure he was okay. I wasted a lot of my energy trying to figure out why he was feeling so exhausted. When he woke up the next day feeling okay again I realized that it was nothing we had done, his diagnosis of Parkinson’s Disease was the culprit.

If it isn’t enough that this disease makes him tired, the medications he takes also play a part. He has always said that carbidopa levodopa makes him sleepy about 45 minutes after he takes it. The dosage doesn’t seem to matter, even with only one or two pills he gets drowsy when the meds should be kicking in. He can’t skip those meds until he’s feeling better, so we always get to add that to already low days.

My husband’s condition can drain me if I let it. I am finding the best solution for those bad days is to let him be. It may be difficult for me to step away, but if it is something more serious we will know soon enough. If it’s a lower energy day for him, rest is always the quickest way through. My hovering, trying to fix something that isn’t really broken only serves to make things worse. Evidently there are days when the best thing I can do as his CarePartner is to let things go and understand it’s just his PD, even though that’s really hard for me.

You are going to be told at the beginning of this journey that the most important thing you can do for your loved one is create a medical team. It’s not that easy.

We have been on this journey for over 15 years now and I have written before on the topic of creating our team of providers. It is a concept that I have never understood but have finally made peace with. I do think it would be wonderful if all of the professionals working with my husband communicated with each other or perhaps had team meetings where they would discuss his challenges. I know that this is a totally unrealistic expectation and congratulate anyone out there who may have found some semblance of this on their journey, we certainly haven’t.

What we have found are professionals who are able to provide different pieces of his treatment. He has had multiple physical therapists over the years, they keep moving on. He has had a couple of different occupational therapists but they never really clicked with us. The only constant people on his “team” are his Primary care physician and his Neurologist but even those people are the second versions when his first folks retired. The connection between these two is that they both work for the same health organization but I’m pretty sure they’ve never discussed my husband’s care in any way.

What I have finally concluded is that his “team” is simply a list of phone numbers for medical practitioners, or at least their offices, I can call when things go haywire. We keep records of all his contacts with each of them and can share as needed with other professionals he sees. He is the connecting factor on this team and the rest of them are simply extras brought in to play when it is their turn. Asking for more than that is simply an exercise in frustration and futility.

Trying to stop someone from falling is like trying to stop a moving train. It might be better to simply stay out of their way.

Once my husband begins the downward descent, there’s a much better chance he’ll take me down with him than I’ll be able to keep him upright. I have learned that it is better to stand by and watch as he goes down because at least one of us is still able to call for help if needed. It may sound cold, but it doesn’t do any good for me to intervene and get hurt myself. Once he’s down, I still need to refrain from jumping in as we see if he can get himself up off the floor. When I start grabbing arms and pulling on him I may cause more injuries than he had from the fall itself. If he is down and can’t get himself up, I need to call 911 for assistance.

Twice when he has fallen, he was in the bathroom and there was no way I could have stopped it from happening. We looked afterwards at what may have caused the fall so we could adjust the environment to keep it from happening again. He falls in slow motion, perhaps that’s the muscle stiffness he experiences thanks to his Parkinson’s diagnosis. After both of the these falls, I was able to help him maneuver into a position where he could pull himself up. So far he’s only had bumps and bruises, no serious injuries.

It’s instinctual to try to help when I see him falling. I have had to reteach my responses, slow them down so I act appropriately rather than react in haste. I also have had to share this with any guests in our home who might be there when he takes a fall. We certainly don’t want anyone getting hurt while trying to be helpful. Thank goodness there are a lot of adaptive tools that help him stay upright from strategically placed grab bars to transfer poles, even his cane and walker. We haven’t had to deal with a fall for several months now, I hope we can keep that stretch going.

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.  

When you begin this journey your loved one will be the primary contact with the medical team but know that at some point you may need to step up and take on that role.

We’re sitting in the doctor’s office and she asks my husband a question at which point he turns to me for the answer. It’s not that he doesn’t have an answer for her, it’s just that sometimes it becomes difficult for him to get the words out. Especially after he had Deep Brain Stimulation surgery, speaking clearly has become a more difficult challenge. I answer for him and then turn to him to make sure I am saying what he was thinking. It’s an interesting dynamic as I find myself placed in the role of interpreting for him to the world.

I’ve always attended his appointments simply because I felt it was best for me to stay informed and I wanted to make sure his doctors were getting the full picture. It is natural for anyone to try to show our best when we are at the doctor’s office but when she is trying to understand his Parkinson’s, she needs to see his worst. She needs to know the range of symptoms he is facing and my husband may not always remember to share that information. I am there to bring a second opinion into the conversation.

Unfortunately we may reach the point where I am the primary communicator and feel it is important to build groundwork for that now. I like the fact that attending all of his appointments has allowed me to develop a good relationship with his doctors. They respect and understand my role as his Caring Partner. I also like the fact that my husband trusts me and understands any discussions or decisions I participate in while working with his medical professionals will always be rooted in his best interest. I don’t want to be in charge of his health care, but it may come to that one day. It’s important to make sure we’re all ready for that possibility.

Chronic, progressive, debilitating, terminal. Don’t let those words take over your mindset or you will never make it through another day as a Parkinson’s CarePartner.

I’ve heard them all. I particularly loved the statement that my husband wouldn’t die from Parkinson’s but would die with it. I live with this knowledge and don’t need reminders of it. Instead I want to focus on the flip side, strength, resilience, courage, the positive aspects of fighting this illness together. I want to look at what we can still do, not what has been taken away.

There are those days, however, when the darkness creeps in. I see it in the progression of my husband’s symptoms and when I catch myself doing more to assist him without even thinking about it. Changes in our lives sneak in and suddenly we’re further along in this journey than I realized. And it scares me. What am I going to do when the inevitable happens? What will life look like after? We have an estate plan that covers practical issues, but how can I plan for dealing with the loss?

In those flashes of fear, I am reminded of the importance of each interaction. We are both still here and fighting. We need to find the best way to make it through each day that we are given. Living life as a Parkinson’s CarePartner can be positive if it reminds me that every experience we get to share is precious. I shouldn’t waste any of them worrying about what might come someday. Live life for today and make it worthwhile, that’s what truly matters in this moment.

The help you want from caregivers as a CarePartner and the help your loved one is willing to accept may be different. Be open to their concerns and negotiate mindfully.

If I could ask for help with my husband based on when I need it most, it would be those first couple of hours every day. I would have someone come in to make his breakfast, help him shower and get dressed. They would help with his shoes and socks and be available if he needed additional support getting ready for his day. And while they were working with my husband, I would be having breakfast, reading the newspaper, writing in my journal, catching up with emails, taking a shower and getting myself ready for the day.

Unfortunately, that doesn’t work for us. My husband doesn’t want anyone else helping him with his more personal tasks and I can understand that. There are things that the state won’t allow his caregivers to do, like shaving him with a razor or clipping his nails, so I get to do all of those. The closest I get to taking a break with the morning schedule is on days when we do have a caregiver coming and he agrees to switch his shower for an upper body sponge bath when they arrive. It’s a compromise that we worked out so I get a bit of a break and he gets to maintain some of his privacy.

We both need to understand and agree on the role caregivers can and should be playing in our home. It is not easy for either of us to have a stranger coming in to care for him. It’s important that we are able to communicate about these things and that we are able to negotiate when we have a difference. I try to respect his need for independence and ask that he respect my personal limitations. There are always going to be times when I need more or he wants less, we just need to be open to working together and making this difficult component of our journey better for everyone.

It’s necessary to have a support group for connection, advice and understanding, but remember that what works for someone else may not work in your journey with Parkinson’s.

I love the input I get from my support network. They always have stories about medications or adaptive tools that have worked for their loved ones. I can look to them for ideas on different challenges we face and know that they will share good information. It was from this group that I learned about Rock Steady Boxing, bidets, and transfer poles, all interventions that help make our daily activities easier. I even have members reach out to me with questions from time to time and I am flattered that they think of me as a resource. I always remind them that I can only speak from our experiences and that they really should consider anything I say as a suggestion not a solution.

Our journey with PD has been full of trial and error, or maybe more accurately hit and miss. We can’t really know if a pill or adaptive device is going to be helpful until my husband actually gives it a try. It doesn’t seem fair since we are all dealing with the same illness. When someone finds a medication that helps them or provides a healthy bowel routine, it should be transferable to everyone with the diagnosis. We should be able to share our knowledge and everyone within our network would benefit. Unfortunately, the pool has to be much larger than our local group of about 30 folks with the disease for any real similarities to show.

Just as everyone with Parkinson’s looks different, the way they respond to medications and the tools they find useful are going to be different. That’s why it is helpful for me to also maintain a relationship with his medical team. If my husband’s neurologist, physical therapist or PCP has tried this intervention with other patients, they may have a better handle on whether it might be useful for us. Combining the experiences of fellow CarePartners, who know about the daily life challenges of PD, with the knowledge of professionals who have studied this disease hopefully gives us the best chance of finding good interventions. Always remembering that it’s going to be 50-50 whether it will work for my husband.