My husband is seeing an orthopedic specialist, or “back guy” as he likes to call himself, for chronic pain. He is also seeing an Ear, Nose and Throat specialist for vertigo. This is all in addition to his normally scheduled care with his Neurologist and his Primary Care Physician. We had 3 appointments last week alone, it can easily become overwhelming trying to keep up with his care needs. How do I prioritize it all to make sure he is getting the best care possible?

First, I need to make sure that everyone he is seeing knows he is seeing everyone else. In simpler terms, I need to make sure the back doctor knows about the ENT and vice versa and that his Neurologist and PCP know about all of them so someone can, hopefully, be on top of his care. The reality, however, is that I am very possible the only one who is aware of everything we are doing at any given time so I need to watch for possible conflicts, complications and opportunities.

Which leads me to my dilemma, how to decide which comes first? My solution is really quite simple, I attend every appointment with him and ask stupid questions. Okay, maybe they’re not so stupid but more simplistic. As an example, we were at the orthopedic office and I asked whether PT might help since he has been referred by the ENT for balance issues. He gave us a referral for back issues and suggested talking to the PT so they could figure out a plan that might address both. This was something he hadn’t even thought about until I mentioned it, an opportunity almost missed.

There are a lot of decisions that I face on this journey, finding good treatment options may be one that should be handled by professionals. Obviously my husband and his comfort level will always be a factor in determining what comes next, but it might be useful for me to step back and let the medical team do their job. My role may be simply to keep them informed and ask the right questions so that we can all be working together on the best possible plan moving forward. Maybe this is a decision I can provide input on, but don’t actually need to be making.

At this point in my husband’s journey, I figured we were pretty well set. I have been studying PD for the past decade and thought I  could see the direction we were headed. His symptoms were progressing slowly but not really changing. Then he went to bed feeling a bit “wobbly” on a Saturday night and woke up Sunday with full-on vertigo. I knew how serious it was when he willingly took to his walker.

What I have since learned is that approximately 10% of People with PD will develop vertigo, mostly in the later stages of their journey. Interestingly enough, the Parkinson’s Foundation sent out a podcast on vertigo just a week after he started experiencing it. According to them, the first step is to differentiate from neurogenic orthostatic hypotension which is indicated by dizziness or lightheadedness created by fluctuations in blood pressure. My husband was not lightheaded, but had the sensation that the room was moving around him. According to the Parkinson’s Foundation article, causes can include medications, a viral infection, an inner ear disorder or even a stroke.

He has seen his Primary Care Doctor and an Ear, Nose, and Throat specialist(ENT), both suspect it is Benign Paroxysmal Positional Vertigo and have referred him for further testing. The challenge is that the treatment for this disorder involves quick movements of the head to realign crystals in the inner ear canals. At this stage of my husband’s journey with PD, nothing in his body moves quickly. The ENT also recommended physical therapy and has referred him to a PT who specializes in neurological conditions. I’ll be scheduling an appointment for him there as soon as possible.

In the meantime, he keeps his walker close by. The episodes of vertigo come and go and usually only last a minute or two. It is limiting some of his movement, but he has been able to keep up with most of his exercises with modifications. And, I remain ever vigilant, making sure that he is steady and stable and keeping an eye out for those off moments. Vertigo can lead to falls, we definitely don’t need to add that to the mix.

For more on vertigo and PD, check out Vertigo, Dizziness & Low Blood Pressure on the Parkinson’s Foundation website.

I was with a group of friends the other day and the topic of exercise came up. The general consensus was that everyone hated it. I kept quiet because, thanks to my husband’s diagnosis of PD, I have come to  understand the value of exercise and, while I may not always enjoy it I work out with him at least 4 days a week. It is one of the few things we can still do together, in many ways it replaces our dancing and the hikes we used to take.

We subscribe to a Parkinson’s program and the coaches all do their best to make the sessions fun. They play oldies music we recognize which makes the hour go by quickly. The classes are through zoom, but the coaches make a point to call out class members and encourage them individually. They share jokes, highlights of their lives and work to build community within the on-line format. They also adapt the programs to meet the needs of a broad group of people with a variety of abilities. My husband works out from a seated position, I can do the same moves standing and get a great workout too.

At a time when my husband and I seem to be losing so much of who we were, it is nice to have something new that connects us. We box together and lift weights. We can talk with and about the coaches, we can complain about sore muscles when we’ve tried too hard. We are both exhausted after a really good session. It’s an activity that we share that is healthy and adaptable. I don’t love exercising, but I do love spending time with my husband. When I look at it from that perspective, I really don’t mind it so much at all.

I was reminded of this just this morning. I went outside to check on something and my husband followed me. Not realizing he was there, I turned quickly and almost knocked him down. We then got stuck in the doorway trying to maneuver backwards to a safer location. It is amazing how many new potential falling hazards are located just outside our backdoor. The warmer weather draws us both outside where the ground is not as even nor as familiar to either of us, and that is just at our home.

In addition to an increased risk of falls, the sun is more intense and the medications my husband takes for his Parkinson’s Disease make him more susceptible to burns. This disease interferes with his ability to regulate body temperature and he overheats very easily. His challenges with swallowing often mean he doesn’t drink enough water and, as things heat up, dehydration becomes a greater concern. I love the long days of summer, however, the prolonged light does seem to impact our sleep patterns. We close the blinds around 8 pm to give our brains the idea that it’s getting dark outside, I’m not sure that is going to work. And, our cat is very much dependent on the rising sun so she comes in to wake us around 5 these days.

We are finding ways to enjoy our summer without overdoing it. We have set up two separate areas on our patio, one in the sun and the other in the shade so we can enjoy being outside regardless of the time of day or weather. I minimized obstacles outdoors and strategically placed seating so my husband can easily access it. We try to take short walks in the evening, once the heat of the day has passed. Summer can still be fun as long we keep it hydrated, keep it cool, and always keep it safe.  

It has been a tough week at our house and we are finally getting back to what feels like a more normal space. The reality, however, is that our current normal is very different from what it was just a year or two ago. It feels like each time we go through a tough time, we come back just a little bit further down the road. We adjust to the new routine and keep on going. It’s like we’re on a roller coaster and each time we come down from the highs, we go just a tiny bit lower. The changes are so small, I don’t even notice until I stop and look back at where we’ve been.

We were talking about this at a recent CarePartners breakfast. We all do what needs to be done to keep things going. We step in and help with personal care, with home care, with finances and medical care. When my husband got sick or had a fall, I was suddenly called upon to do even more. As he recovered, those extra duties often stayed with me. I adapted to the new normal and what had been a bad day became just another day.

It’s hard to remember the days before and perhaps that’s okay. If I don’t reflect on how it was, then I don’t feel the loss. It is easier for me to focus positively on what we still have as we move ahead. My role is changing, I feel I am spending more time these days as a caregiver than as a wife, but that may be how it has to be. One of the CarePartners at the table had a great perspective. She talked about “good” days and “not quite so good” days. I think I need to adopt her perspective as I accept and appreciate the new normal in our lives.

Which is a reminder that, when I am seeking support for myself, there is value in looking beyond the Parkinson’s world for help. This isn’t to say that the many organizations created to help my husband in his journey don’t also have information for me, it is simply that their focus is on him first. If I am looking for someone who understand my challenges, I need someone who is facing them with me. I deserve to be supported in my role and my journey, not simply because I am his caregiver but because I am trying to live my life fully too.

In a group of CarePartners, it does not matter whether my loved one has PD or MS or ALS, it simply matters that I am caring for someone with a chronic and progressive illness. I can share with my peers as we experience similar feelings of loss, frustration, anger and guilt. We can connect over the challenges we face and the difficult situations we find ourselves in. We can learn from each other as we talk about our lives and find better ways to make it through each day.

There are too many websites dedicated to people who provide care for others for me to mention any here. I just googled CarePartner and found 100s of entries and even an on-line radio station that plays music and inspirational podcasts. I have to be careful because the search itself could easily be overwhelming. I simply need to remember that there is help available when I need it because I can always find something that is uplifting, encouraging and written just for me.