I finally found a therapist and we start meeting this week. Just figuring this out has been a challenge and, if I were seriously depressed, I would have given up but that is another story. Instead, I am looking forward to the opportunity of working with someone and hope that she will be able to help me figure some things out. I think the first thing we will have to work on is exactly what it is I am looking for.

The therapist emailed me 9 documents to complete prior to meeting with her. A lot of it was basic information, address emergency contacts, insurance coverage, details she needed for the business side of things. There was a questionnaire, however, that was her first delve into the meat of the situation. She asked me why I wanted to see her, what I hoped to get out of therapy, where my strengths lie and what areas I need to develop. Then she asked what I like most about myself and I was totally stymied. Is there anything right now?

When I wanted my lawns cut, I hired a landscaper and when I needed help moving furniture, I called my son. In those cases, I knew exactly what was wrong and how to fix it, but with therapy, I am not sure I even know what I need. Perhaps that is why is has taken me so long to actually seek counseling. The questions she sent have already opened some doors, but am I sure I want to go through them? Where will this lead and will the answers I find give me the peace I need to move forward as a CarePartner? Maybe that is what I really need to ask for, I guess I will find out.

When we were looking for shoes for my husband recently, I was introduced to a whole new world of adaptive clothing. Velcro, zippers with large pulls, stretchy materials, hidden elastic panels, clothing of all types designed in ways to make getting them on and off so much easier. It was eye opening. However, I have a husband who doesn’t like change. He has had the same haircut for 60 years now other than it is getting a little thin on top. Rather than try to get him into different styles of clothing, I decided to look for ways that allow him to wear what he likes while simplifying the process of getting dressed.

One thing that immediately comes to mind is going up a size.  He likes to wear blue jeans and by going a size bigger they slide on easier. He is able to still manage a belt, so they don’t fall down or ride too low. He enjoys button shirts and had always tucked his shirttails in. We had a talk and weeded out form-fitting and longer shirts so that what he has left are loose fitting with squared bottoms or shorter tails. If I leave all but the top 2 or 3 buttons done up, he can slip the shirt over his head like a t-shirt. This works great with short sleeves, and we’ll be experimenting with long sleeves soon. He likes to wear t-shirts or sweatshirts and can manage those on his own. Socks are an issue for my husband.  He can put on ankle socks but says that his shins get cold. If I am able to buy loose fitting socks, he can put them on but then they bunch up in his shoes, so for now I am still helping him. Once the socks are on, he does his own shoes.

Being able to continue to dress himself comfortably has been important component in my husband’s journey. The minor modifications we have made help him maintain his individuality and support his dignity. I am always close in the event he needs additional assistance. Everything he is able to do for himself lightens my load, a winning situation for both of us.

This morning is a great example. We always go to the store Thursday mornings to stock up for the week. My thought was to take my shower early so my hair would have a chance to dry naturally before we went out. That was my plan and I even shared it with my husband. That’s when things started to go a little haywire.

As I headed in to take my shower, my husband suddenly (or perhaps he just remembered it) developed a sore toe that I needed to look at. That took about 10 minutes. Then the cat needed attention, another 5 minutes down the drain. I remembered an email that needed to be sent and meds that needed to be ordered. Small interruptions to the plan, yet by the time I took care of them I had lost any time advantage I might have had. I’ll still get my shower, but I’ll be going out with a wet head, something my mother always gave me grief about.

The interruptions to my plan started to irritate me but then I stopped, took a deep breath, and realized something. Those disruptions are the things that give my life meaning. I am glad that my husband asks for my help rather than letting things go until they are really bad. I enjoy having a cat and the added work is nothing compared to the comfort and entertainment she brings. The emails I send help me stay connected to the world outside our PD diagnosis.  Rather than be irritated, I need to be thankful that I have these interruptions in my life because they signify purpose, connectedness, and love. Things that are definitely more important than any personal plan I might make on my own.

I have a list of words on my desk that come from a support group webinar I attended a while back. The vertical list reads “acceptance, anger, connection, energy, frustration, guilt, irritability, openness, optimism, patience, self-compassion” in that order. As CarePartners, we were encouraged to look at these words and consider our own feelings regarding each of them. As I said, they sit on my desk where I can see them every day but at a glance, I only catch the top third usually ending at “frustration.” What I wonder is whether these words, simple as they may be, are unintentionally setting a tone for my day? Would it be better to rearrange the list so that I see only positive feelings rather than interspersed with negative ones? After all, sometimes it is the little things that matter the most.

The list begins with acceptance, a rather neutral concept. What if it started out with optimism? Then, I would drop the next word which is anger and replace it with openness followed by connection and energy. I would round out my top five, which is usually all I see anyway, with self-compassion. Replacing those negative words that I look at every morning with more positive ones, could it really help change my outlook?

I often hear that mindset is everything. If I am going to be happy, I need to think happy thoughts and surround myself with happy images. I am going to revisit the list of words, not to think about how they impact me but simply to rearrange them so that the positive ones are what I see most. Who knows, maybe it will help me start my days with thoughts of optimism and openness rather than acceptance and anger? I definitely think it’s worth a try.

My husband recently commented that he felt like an anchor holding me back from doing things I wanted. My immediate reaction was to convince him that it wasn’t true and yet internally I was blaming myself for making him feel that way. What had I said or done to make him feel like he was holding me back? What could I do differently? Then I took a breath and realized that I was trying to fix something that is totally out of my control. I should be aware of what he is going through, and we can have conversations, but his feelings are not something I can change nor do they necessarily indicate I am doing anything wrong.          

I get that he feels a loss over the things we used to do together, I do too. But we are doing other things together. We read the same books and talk about the characters, we work out and enjoy an afternoon aperitif, things we never did pre-PD. There are going to be times when I want to go and do and he doesn’t have the energy, something we are both going to have to learn to accept. Compromise will be key as I give up some of my outside stuff and work to help him understand that he can be okay staying behind sometimes.

As his disease progresses, I will need to be mindful of changes in his personality. Symptoms of Parkinson’s can be anxiety, excessive neediness, even jealousy, things we have never had to deal with before. I hope we don’t have to face these but know it is always possible with his disease. For now, I simply need to assure him that he is not an anchor but instead my tether keeping me grounded as we continue this challenging journey together.

We vacationed in Hawaii for the first time in years and especially since my husband had a shoulder replaced and DBS surgery. I knew his stamina and balance had changed so I asked for wheelchair assistance at the airport. I called ahead and spoke with resort staff about other challenges we might face and was assured we’d have a comfortable spot on the first floor and close to the restaurant. I wanted an ocean front room so they couldn’t give us ADA accommodations, but I felt sure we’d be okay. 

The flight went as planned; wheelchair assist was great. We shuttled to the resort where we ran into a minor problem, our room wasn’t ready, but we were hungry and my husband needed a nap. We got a light lunch at their deli and crashed on loungers by the pool to wait. A couple of hours later we got our keys, and I realized that I should have compromised on the view rather than ADA accommodations. We had an amazing oceanfront location, but the toilet seat was low and there were no grab bars anywhere including in the shower. My husband took it all in stride, but it meant more work for me to keep him safe. I was able to take solo walks on the beach and keep the room in sight so, from that perspective the oceanfront setting was great.

His PD created issues on the trip from day one. With time changes he had to adjust his med schedule simply taking his pills every three hours until it was finally bedtime. Meals were whatever and whenever we could find them. By day two we were dealing with the toilet and shower issues. I had to help with both and there was very limited space. On day three his constipation kicked in. We chose the resort we were at because everything was within walking distance however, we quickly learned that he no longer has the stamina to make it very far. I found we were able to use the resort shuttle to get around. Again, a bit of extra unexpected work for me finding schedules and pickup points. 

Even with our wheelchair assist and Pre TSA passes, airport security was a hassle. Our return flight arrived at 10:45 pm which meant it was almost midnight by the time we got home. We were both exhausted and our bodies were three hours out of sync with our home time.  Thankfully the only thing I planned for the next day was restocking the cupboards. We made a quick trip to the grocery store between naps as we recharged our batteries from our vacation.

All in all, it was a good trip, and I am glad we went. I need to remember that changes in routine and environment will always mean additional work for me. I got to leave some duties like housework and cooking behind but picked up others, often unexpected. Also, our need for ADA accommodations supersedes our desire for a good view. We can take vacations, but his Parkinson’s symptoms never will. I need to accept that reality and be ready for whatever happens. I can always come home and rest, right?

We went out recently and since there were no handicapped spots available, I parked under a light being sure to leave plenty of space on the passenger side for my husband to get out. I didn’t realize that put the driver’s side next to a ditch. I was so busy watching my husband struggling to get out of the car that I didn’t pay attention for myself. My left foot landed on solid ground; my right foot followed finding nothing but air. I fell backwards about three feet into the ditch. I guess I should be thankful that it was dry hard dirt and not mud. I landed on my hip and left butt-cheek, thank goodness for the natural padding there. My head hit the concrete barrier on the other side.

As I was lying there trying to assess the damage, my husband rushed over to help and lost his balance. He fell into the ditch on top of me scraping both shins on his way down. Thankfully a young man saw what happened and came over to help us get out. We were pretty shaken up, but no major injuries.

Looking at this afterwards, a couple of things come to mind. If I had taken a moment to look around, I would have seen the drop and could have avoided it. I tend to overcompensate on safety for my husband, I need to be more mindful of it myself. The second thing that comes to mind is that I have been taught what to do if my husband falls, we have never talked about what he should do if I fall, namely leave me alone to get up by myself. I know he was trying to help and yet it made the situation worse. Now that the bruises are healing and we can look back and laugh, we agree that the new rule is “Don’t follow me into a ditch.”

We are taking a five-day trip to Hawaii next week and have started to get ready. As I am packing, I realize that there are things that we use on a daily basis that have become essential components to my husband’s care that won’t be coming with us. This means that I need to be prepared to step back and remember what we were doing before we found these tools and take those things along. It’s going to take some thought.

One of the biggest things that won’t be accompanying us is our bidet toilet seat. We have both come to depend on that and, unfortunately, the hotel we are staying in won’t have one. Personal hygiene will be challenging and so I am packing some additional aids such as wet wipes. Another tool we won’t have with us is furniture that accommodates his challenges. Our couch sits higher, our bed has an adjustable base, our shower has a low threshold. I will need to be more alert and ready to help when the need arises.

The change in location itself is going to be a challenge. There will be a time difference to negotiate with medication schedules, there will be a relatively long flight and time spent in the airport. Meals will be off schedule and life will be a bit chaotic. I have no plans for anything on either the day we arrive at our destination nor the day after we return knowing that it will take my husband at least that long to recover from the flights.

There is nothing I can take with me to ease this other than a sense of calm myself. I need to be positive and know that the trip will be what it will be. We can do this, I can do this, and we will both be thankful we did once we are sitting on the beach in the warm Hawaiian sun.

My husband needed a new pair of shoes. We knew the importance of good shoes that provide a stable base and support his balance. His old shoes had soles that allowed his foot to rock through each step, making him feel even more unbalanced. He felt he needed something flat on the bottom so when he is trying to get up from a chair, he has a solid foundation. He can still tie his shoes and it is good exercise for his fingers, so he didn’t need to look at slip-ons or Velcro closures.

I turned to Google for help and found that there are many different approaches to appropriate shoes for Parkinson’s Disease. Most of them look at the challenges associated with putting them on but there are also a few that look at balance and stability. I found one study done in 2013 that addresses the soles and suggests that textured soles might help with postural stability. Another website touted insoles that stimulate the bottom of the foot when walking to encourage balance and a better gait. The internet agreed with my husband that the sole needs to be flat on the bottom; contoured heels can decrease stability, especially when getting out of a chair. Finally, the toebox, as it’s called, must be big enough to accommodate my husband’s toes when they sometimes choose to cramp. It’s a lot to look for in a shoe.

There aren’t many specialty shoe stores in our community and, even though I saw some nice examples, I wasn’t ready to order shoes on-line. I tried that once before and learned that he really needs to try the shoe on to make sure the fit is good. We went to a local shop and found some Dr. Scholl’s that have the flat soul, a cushy and supportive insole and are wide enough for his toes to move. He tried them on and then tried doing a sit to stand in the store before we left, it all seems to work. The new shoes are very lightweight which is another bonus. He is a bit clunky in them as he adjusts to the change, but I think they are going to be okay and give him a greater sense of safety and stability and me the knowledge that he is less likely to fall.

For a look at the science behind this check out Effect of Foot Orthoses and Shoes in Parkinson’s Disease Patients: A PRISMA Systematic Review – PMC (nih.gov) on the National Institute of Health website.