There are a lot of great ideas floating around regarding how to better care for your Person with Parkinson’s. I have been particularly interested in diet and supplements that might help him move more freely and minimize tremors. We hear that dairy is bad, fresh fruits and vegetables are good, fish is healthy for him and that he needs to eat nuts and seeds. I have been trying to work many of these ideas into our diet and encouraged him to start taking fish oil capsules twice a day thinking I was doing the right thing. It never occurred to me to contact his Primary Care Physician or Neurologist before making these minor dietary changes.

My husband went in for surgery this past week. When I met with the doctor following the procedure, he mentioned that there was more bleeding than he expected to see. As we talked about it, he asked whether there were any new supplements and I mentioned the fish oil. It turns out that in my desire to help my husband I had actually added an additional risk factor, fish oil can hinder blood coagulation.

Things turned out okay this time but we have discontinued the new supplements until he is cleared by his surgeon. I am also doing what we should have done in the first place by contacting his PCP to get her advice and check on any other potential side effects these changes might cause. It was a reminder that, while I always have his best interest at heart, I am not the only person on his team. We have experts working with us for a reason, I need to let them do their jobs and make sure we are all on the same page to create the best outcome for my husband.

I am in this journey because 20 years ago I fell in love with an amazing man. That loving relationship included a spontaneous and fulfilling physical component. If I let that go, I am cheating myself, and my partner, out of some the wonders that our togetherness has to offer.

When thinking about the physical relationship we share, it is important that we take the time to explore options that age and PD provide. There are changes but they are not all with him nor are they all PD related. It is important to remember that I am getting older and that my body and needs are changing too. It may be that we need to slow things down and take our time or that we need a little assistance to get things going at all. Maybe spontaneous intercourse isn’t possible, can we still find other ways to fulfill our needs and find mutual satisfaction? Sometimes a naked cuddle can bring as much pleasure as a wild night together used to bring. We work to find ways to connect and let our love hold us together.

As the disease progresses and we both age, the challenges will get greater. I spoke with a woman recently who talked about how they have adapted their cuddles to be more comfortable for her husband. She spoons from behind and it gives them the opportunity to be close without pain. When my parents reached the point that Dad was in a wheelchair, they used to put his chair next to the couch so they could hold hands while watching television. Sometimes just touching each other is enough to maintain an intimate connection.

There are many great articles on sexual health with PD and I particularly liked this page on the Michael J. Fox website entitled Sexual and Reproductive Health.

The value of this came home to us this week when my husband entered the hospital for surgery and we had everything he might need together in one binder. Of course, I still haven’t made one for myself-

Isn’t it interesting that is this time of electronic medical files, the professionals working with my husband still don’t seem to be able to share information in a timely and useful manner?

We started keeping a notebook that houses all of his medical information and appointments. All of his doctor’s business cards are in the front followed by a listing of his current diagnosis, medications and schedule. Then there are different sections for his various medical concerns. For example, he has one section for his appointments with his neurologist and another for his visits with his primary care physician. There is a section for the surgeon who operated on his shoulder and another for the physical therapist he sees. I know that all of this information is accessible on-line but not all of the doctors share files. By keeping all of the after-visit summaries in one place, we make sure the information is always available. All we have to do is grab the binder and head to the appointment.

We include copies of legal documents such as his POLST form, his Medical Advance Directive, and the Power of Attorney that allows me to make medical decisions for him. It is challenging enough to know I might have to make difficult decisions without having to try to find the correct document in the moment. Again, it is all in the binder ready for any emergency.

Now, if I just had a binder for myself….

I am revisiting some earlier entries and this one seems particularly relevant this week as my husband undergoes DBS (deep brain stimulation) surgery. I hope you find it meaningful-

What is really interesting about this journey with my husband is that, while we are both impacted by his diagnosis of PD and headed in the same direction, our paths are still so different. They will intersect and intertwine, but they are independent roads that we each must follow with unique twists and turns. The scenery is very different based on the perspective you bring to the route.

There are times when it feels like we are on a ship and I have to be the cruise director planning activities to help us get through every day. I am called upon to the be ship’s engineer to make sure things are all functioning properly to propel us forward or the communications officer handling all official correspondence like phone calls and appointments. I like to wear the Captain’s hat the least because that means I may have to make major decisions that could have negative impacts on our lives.

The most difficult component of this journey together are those times when I realize I am basically a passenger watching his struggles. We did not buy ticket for this ride, nor do we have a map for the road ahead, so we can never know when we will encounter sharp curves or rough waters. What I can try to do is recognize and respect the differences between the challenges we each face and then work to provide support he needs at the appropriate times. I can also remember that I am not in this alone, I have a crew of people who are ready to help me when I need it.

Our journey will be difficult at times but it can also be an adventure as we explore what life still has planned for us. Let me embrace a positive attitude as we move forward with adventuresome spirits today!

This was written in pre-pandemic times but can still hold true as we are forced to rethink things. How much can we actually do without while still connecting with loved ones and what traditions will we be changing in the future?

Holidays and family celebrations should be fun for everyone. If you and your partner are not enjoying yourselves, figure out why and then work to fix it.

“Just because we always have” or “because it’s a family tradition” are horrible excuses for continuing activities when everyone comes simply because they feel obligated to participate. If you are still doing things that you did 10 or even just 5 years ago, why are you doing them? Do they bring you joy or are they just a lot of work for nothing? These are questions that I had to face over the past couple of years and the answers have been surprising.

I started by thinking carefully about the things I was inflicting upon myself and my husband in the name of celebrating holidays and family milestones. While it is nice to get everyone together, could we do it in a simpler or less stressful way so as to not exhaust ourselves? Does it need to be a family dinner at our house or can we just get together in a nice restaurant for lunch? If I really feel that the family dinner is essential to stay connected, can someone else be the host? Most importantly, do my husband and I have the energy to do this? Maybe the time has come to pass on some of the duties and to let go of some of the others that no longer have meaning.

Traditions are wonderful and well worth preserving when they bring value to family relationships. I have realized that they can also make for wonderful memories when participating in them is no longer a reasonable expectation for us. In this world of Parkinson’s, we are working to live more meaningfully each and every day. Let us also work to find new ways to celebrate so we can all enjoy those special times in our lives.

I have decided to take a short break this month and rather than writing new messages will be revisiting some of my older blogs. I hope you enjoy reading them again and I will be back with new thoughts soon. This was blog number one-

It takes a positive mindset to continue the fight. We have to get up every morning ready to take on any challenges and know that we can overcome them together.

This is where it starts, knowing that you are partners in the journey and that whatever battles you face with PD, you can overcome them. For us, it hasn’t been so much a battle as a learning experience. We both have had to make changes in how we live and have seen a shift in our roles. I have taken on more of the work around our home, something that has been a struggle for him as he wants to do things but his symptoms won’t allow it. He has lost some of his independence due to the physical challenges but still maintains a strong individuality as we move forward together in this journey. He may be the one with the diagnosis, but we are both learning to live with the disease.

My husband is chilly all the time. Parkinson’s Disease has made him more susceptible to changes in the temperature and adding layers isn’t always the answer. I have to admit there are days when I follow him around turning down the thermostat when I think he isn’t looking. This is one of those things we didn’t really expect when he was diagnosed.

As his disease progresses and he loses his sense of smell, his tastes in food are changing. I try to make things that are healthy for both of us but he really prefers a simple diet of meat and potatoes. His tremor makes it difficult for him to navigate a knife at the table to cut his food, and leads to another adjustment we are having to make thanks to PD. I try to provide meals with all foods into smaller chunks so that it can be easily eaten.

We expected that his tremor and stiffness might result in difficulties walking, which hasn’t really happened, instead we are seeing other challenges thanks to his diagnosis. Parkinson’s Disease impacts all of the brain-muscle interactions in his body. Disconnects in thought processing can make it difficult for his body to respond correctly to instruction, for example getting in and out of a chair can be very difficult at times. These disconnects can even lead to a false read at times as his ears tell him that he is speaking loudly but no one else can hear his words.

What I have learned is that I can’t know where this diagnosis will take us or what might come next. I can best support my husband by looking honestly at what is happening in the moment to help him accept and understand that whatever is going on is not him, it is his Parkinson’s Disease.

I wish that I could make all the negative issues go away simply by smiling, but I’ve tried it and it just doesn’t work. What I can do with that smile is take a moment to remember that I am stronger and more resilient than I often give myself credit for and know that I can face whatever comes in my life as a CarePartner.

There were times early on when I wondered what I would do when my husband’s Parkinson’s Disease progressed. How exactly would his diagnosis impact our lives together? How would I cope when my husband needed more care than I felt I could provide? I watched my mother care for my father when he was diagnosed with PD, was I facing the same difficulties and would I have the strength to meet them?

My mother struggled with depression most of her life and so Dad’s diagnosis was just one more burden for her to bear. As I thought about her approach to partnering, I realized that I had a choice to make. I could follow in her steps, or I could try to look at the whole thing differently by using a positive focus and attack it as a new adventure in our journey. If I choose to face the challenges of CarePartnering with hope, love and the knowledge that I can do this, it will be a better outcome for both of us. My husband deserves to be treated with loving kindness and to have the best life possible and so do I. We will face difficult and uncertain times, but if I am strong and thoughtful, I am positive that I can make it through.

It has been a difficult year with a global pandemic, massive wildfires and societal tensions that raged around race and equality. Many times it felt like there was only ugliness and pain surrounding us. How can I continue being positive and what will it take to make it through another day? I will do it by looking for the happiness that is still here, the underlying good that supports us no matter what happens.

We have lost friends to the pandemic, in some cases because we can no longer see them and others because they have actually passed on. I miss those friendships, yet I can hold tight to the good times we had together and be thankful that I was able to share a part of my life with them.

Was there any happiness in the wildfires? I found joy in being able to go outside once the smoke had cleared and in seeing the strength of the people who lost their homes but are still going on. Seeing the stories of love and hope that poured out to those communities was heartwarming. And yes, it may be selfish, but I was happy knowing that we and ours were safe and that the fires didn’t destroy our homes.

Finally, it is tough knowing that my loved one has a progressive and debilitating disease but I find happiness when I see him fighting back. I was worried when the governor ordered the closure of in-person gyms earlier this year, but we have found a new on-line program and he is more motivated than ever. Seeing him working out on an almost daily basis encourages me and gives me hope for our future together.

If there is one takeaway from this difficult time it is that when my day seems darkest, I need to look around. There is always a light somewhere, something that I can find to smile about and those little smiles will bring me through.