Spring is finally arriving and that always means new things for me to do. I love to be outdoors, just not necessarily gardening. I also have windows that need cleaning, a patio and driveway that need power washing, all necessary tasks when preparing our home for the coming season. It makes me tired just thinking about it, let alone getting any of it done. My role of CarePartner keeps me pretty busy regardless of the season, something I really need to keep in mind as I start trying to take on more. Perhaps that’s why, when faced with the choice between buying a new garden hoe and hiring someone to take care of it for me, I chose the latter.

I won’t give it all away. The bigger jobs like spring clean-up of the flower beds and mulching in the front of my house would be best done by a professional. I’m also having someone else cut my lawns. I will take care of the back garden beds myself, perhaps grow a few vegetables and flowers. I have a solid plan for what I can do and what I need to let go of this year; I just hope the plan works.

The advantage of having someone helping out on a regular basis is that if at any time I realize I have taken on more than I can handle, I can simply ask them to take over. This also works as a safety plan in case something happens to me or my husband and we need an assist in an emergency. Having an established relationship with helpers is essential in times of crisis. This spring I am looking carefully at what I think I can and want to manage myself. I’ll let the professionals take care of the rest.

I love Cirque du Soleil shows, we have seen several and they are always great fun. This year, for my birthday month, I purchased tickets for their travelling show 6 months in advance to be sure we got to go. It was a wonderful gift to me. I was telling my husband about it when the reality set in. This was going to be a challenge.

First let me say that I don’t like to drive in city traffic and these shows are very popular. Lots of people means lots of cars and parking garages to deal with. We would be in an auditorium setting we have only visited once or twice before, and it has been years. What barriers might exist in getting my husband to his seat? The time frame was not good, the show starts at 1 pm which is in the middle of napping. Added to that is the fact that it is on the first day of daylight-saving time, how would that change in schedule impact us both? The “what if’s” of things that could go wrong kept growing in size until I was on the verge of canceling when common sense and reason finally returned.

We are not the only people dealing with disabilities who attend events at this space. I looked on-line and made a couple of calls to learn about their accommodations. I invited my son and his wife to join us at the show and they happily agreed to drive. I had a conversation with my husband around what our schedule might need to look like on the day of the show and we put a plan in place.

I would like to say that all of this planning alleviated my stress but I would be lying. I was awake the night before the show wondering what could happen and envisioning the worst. I am happy, however, to report that the event went off without a hitch. We found parking within 50 feet of the ADA entrance. We waited there just a few minutes before a wheelchair attendant arrived to take us to our seats. After the show, another person was there to help us back to our car. The afternoon turned out to be so much better than I had expected and we both had a great time.

I regret the time I spent anticipating what could go wrong and am so thankful that I didn’t let my worries overwhelm me. This experience shows me that we can still live life fully if I let go of my protectiveness and anticipation anxiety. Life can go on, it can even be great if I just relax and let it.

Misdiagnosis, missed diagnosis, premature diagnosis, just some of the things I have witnessed in our journey with PD. We personally have experience with misdiagnosis. My husband’s tremor was labelled Familial Essential Tremor for years before he was referred to a neurologist who realized it was actually Parkinson’s. In my father’s case, his diagnosis was missed. His family doctor apologized to him for not seeing the signs, as he put it, at least 10 years earlier. And, we have many friends who are prematurely diagnosed with PD only to later learn that they actually have something else, and often more serious. There are several neurological disorders such as Multiple System Atrophy that are similar in symptomology but different in progression and treatment.

How did a neurologist finally decide that my husband had Parkinson’s Disease? There is no definitive bloodwork that can be done. There is a test called a DaTscan, similar to an MRI, that looks at the brain’s dopamine system, but it is expensive and normally only used to verify a diagnosis. In my husband’s case, the doctor looked at him, watched him walk and then told him he had PD. To confirm the diagnosis, he was prescribed carbidopa-levodopa. The doctor said that if the medicine worked, we would know for sure he had the disease.

There are many exciting research projects out there looking at everything from early detection through facial cues or sense of smell to genetic biomarkers that indicate propensity for a PD diagnosis. Until we can better understand the brain, however, the best tool is still going to be that personal, one-to-one visit with a neurologist, preferably a Movement Disorder Specialist, who is trained in recognizing the symptoms. We can’t blame the doctors if they are confused and miss or mis-diagnose because they are only working with the tools they have available at this time. Let’s hope it gets better soon.

Visit How Parkinson’s Disease Is Diagnosed | Johns Hopkins Medicine to learn more about what is currently being done. Visit the Michael J Fox Foundation and initiate a search for research into early diagnosis to see what may be coming soon.

I used to work with families, particularly families whose children were having difficulties and had become involved in the local Juvenile court system. One piece of advice that I shared often was something I learned as a parent. How we see our children has a serious impact on how they see themselves and can shape their behaviors. I am in no way saying that my husband has entered his second childhood and needs to be treated as such, but what I am trying to say is that this same principle can apply. How I see my husband changes how I treat him and can change how he decides to act in his battle with Parkinson’s Disease.

My husband still showers and gets dressed mostly on his own. Would it be easier and faster if I were there to wash his back and feet? Certainly. I could also be there to help him dry off afterwards. Then I would shave him and brush his teeth and hair for him. Would any of this make a difference in how he looks? That is doubtful. It could, however, make him feel less capable, less competent, more dependent on me. My husband says that he needs to do these things for himself to maintain his skills; I think it also helps him maintain his dignity and independence. The day may come when I have to do more, I don’t want to go there until we absolutely have to.

If I see him as an invalid and treat him as such, he will accept that and become an invalid. I speak from experience; I saw this with my parents. If I see my husband as capable and encourage him to keep on trying, I believe that he will feel positive reinforcement and work harder to fight this disease. I learned long ago that giving too much help can lead to a sense of helplessness. Instead, I strive to provide just the right amount of support and encouragement so my husband can feel he has a partner in this journey, not a nursemaid. I want him to know that I believe he is capable, competent and amazing. Especially, I want him to feel and know that I love him and am proud to be walking alongside him during what is probably the most difficult period of his life.

There are a group of us in my PD network who get together for breakfast once a month. It’s an unstructured gathering, no topics other than being a CarePartner for someone with PD which is always the elephant at the table. I sit at one end of the room with my fellow Partners, our People with Parkinson’s are at the other end so we can speak freely about challenges without upsetting anyone. What always amazes me is how different this disease presents in each individual afflicted, yet how similar all of our responses are when caring for them.

There is such a wide spectrum of symptoms in Parkinsonism and this small group represents many of them. Some of our loved ones have developed mobility issues and arrive sporting canes, walkers, even wheelchairs. Some have cognitive challenges including hallucinations and delusions. My husband has to deal with speech and balance issues. No matter how the disease presents, what all my CarePartnering friends express primarily is a sense of loss. It is actually a progression of little losses that continue taking away more of our loved ones each day. I see it as an impossible battle with an unrelenting enemy and all I can do is keep on fighting, hoping for the best. 

I am so lucky to be a part of this amazing group as we share our journeys with CarePartnering. I don’t know how I would make it through without them. I have found answers to questions about Parkinson’s Disease, about being a caregiver, about the household problems we all get to take over when our husbands are no longer able to do them. Most importantly, I am learning about self-care. The breakfasts themselves are positive and therapeutic as we come together to share stories of our lives. Our table rings with laughter, we leave the tears and fears at home. Belonging to this wonderful community of supportive women is the best tool I have in my CarePartnering kit, and I am so thankful for them every day. 

This group formed when a fellow CarePartner and I decided we needed a time to just get together and talk. The next month we invited two more to join us and then two more, I think you get the idea. If you don’t currently have a group, start your own. You won’t be sorry!

Many of the challenges we face are difficult to discuss, things like toileting and personal grooming. How do we tell friends and family that our person with PD may need to be accompanied to the bathroom and may need assistance cleaning themselves? Or that they need to be mindful of his balance and help him out of chairs? How do I help them understand that his verbal communication has been impacted by his illness, but he is still there and needs to interact regardless of how difficult his speech may be to understand. One of our biggest issues is that my husband has difficulty walking distances or simply getting out of the house. How do I explain these things to those who have never experienced them? What help do I really need to get through the day?

Thankfully, we have a supportive group of friends within the PD network and I can tell them anything. They get it because they live it alongside me. They don’t, however, have the ability to assist me because they are so busy surviving themselves. Talking with them, however, is extremely helpful because the conversations we have helps me recognize my challenges. Once I have verbalized the challenge, it is so much easier to brainstorm solutions.

One thing that I came across recently was the idea of writing my challenges down. Defining specifically what needs to be done allows me to figure out where I really need help. I use this list to create another one, a “help wanted” list. It might include covering chores, or it might be something bigger like exercising with my husband to give me a break. Then, when I am talking with friends or family and they ask how they can help, I just pull out my list and actually ask for something tangible. Difficult conversations about challenges would become more useful and create positive outcomes. I’ll be writing my list and posting it on my phone later today, ready for when that opportunity arises.

It’s my Birth-month! For those of you who aren’t familiar with this concept, the more birthdays I have the more I feel the need to celebrate. One day, even one week just isn’t enough so I have decided to make it a monthlong party. Why not? After all I am getting older and feeling it. I can and do fight aging, but ultimately, I must accept and live with this fact so I might as well make it fun.

Our celebrations have changed. What used to be weekends away at different surprise locations have become carefully orchestrated daytrips within reasonable driving distance. What might once have been a day at a spa is now an hour getting my feet massaged and my nails trimmed by a registered nurse. What might once have been dinner out and a Broadway show is, well maybe that hasn’t changed so much other than we skip the meal and do a matinee so we’re home by nap time.   

It is so easy to get caught up in being a CarePartner that I forget I have a life too. Doing different things and having fun is good for both of us. It changes up our routine and creates new challenges that expand our lives. I owe it to myself to remember my milestones and celebrate them. Sharing those times with my husband gives me the chance to take some of the emphasis off his diagnosis for a while. I hope that sharing it with you helps us all remember that we are so much more than CarePartners. Happy Birth-month to me!

When my husband was first diagnosed with Parkinson’s I was frightened. I thought I knew what to expect based on what I had witnessed thirty years ago when my parents struggled with this same disease. My father developed cognitive problems early, I wonder now whether he actually had Lewy Body Dementia. He shut down emotionally and physically and spent his final years in a wheelchair. They had an ugly journey with PD and I was terrified that was what we were facing too. No one had yet told me the adage, “If you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”. I was preparing for the worst, and I spent a lot of time worrying.

What I have learned since then is that when I spend my time worrying about my husband and our future, it takes me away from what’s happening in the current moment. While some negative anticipation is normal, there is a huge difference between dreading what might be coming or finding ways to live fully and enjoy with what we have right now. If I am caught up in all the things that can go wrong, I miss all the things that are going right.

We are over a decade into this battle, and I finally accept that whatever Parkinson’s Disease has in store for us will come whether I worry about it or not. Instead, I am doing my best to encourage and support my husband as we meet and overcome the daily battles. When those new challenges come, we will face them with courage and positive motivation. Living for today, not worrying about tomorrow, and loving all the way, will help us make it through together.

As a CarePartner, I seem to have taken on a greater sense of responsibility to make sure we are ready for whatever comes our way, even those things that have nothing to do with my husband’s diagnosis. For instance, we are currently undergoing some inclement weather. It has been cold and snowy in our neighborhood for several days now and we haven’t been able to go anywhere. If it hadn’t been for my back-up supply of frozen foods, we would have gotten hungry. I did run out of almond milk, so my coffee has been black for a couple of days, bummer. We finally made it out to buy groceries yesterday and now they are predicting another round of snow for tonight. When is it going to end?

We always try to keep up with medications, making sure we have at least a 2 week reserve. I am not as good at keeping an eye on my supplements and one of them ran out in the middle of this storm. I have been doing without it, a reminder of the value of tracking my entire medication regime as carefully as my husband’s. There is a refill on one of his medications waiting at a local pharmacy, we’ll pick that up today before the next round of weather hits.

We have been lucky this time, our power has stayed on and we did have food to eat, albeit frozen leftovers. We keep a stock of candles and wood for the fireplace just in case we do lose power. We didn’t need to leave our house this time so we stayed put. We had almost everything we needed and now have a chance to restock before the next wave hits. Preparedness matters, whether it is for something health related or something totally outside that realm. As Bob Dylan once said, “You always got to be prepared but you never know for what.”

When I am sitting at my desk writing about the challenges of being a CarePartner, I can often work my way to solutions for difficult situations. I have my friend google to help me with options and can really dig deep to figure out what needs to be done. Unfortunately, that doesn’t always work in the real world because ‘knowing’ is a passive state, ‘doing’ takes motivation to act and is often much harder.

A great example is when someone tells me how much they enjoy reading my blog and how they are doing something I suggested. I think about the time a friend told me she moved her husband’s Aware in Care kit into her car so they are ready in case of an emergency trip to the hospital. I had suggested this in a blog after realizing that my husband’s kit sits on a bookshelf in our house and has never been used. Would you like to guess where our kit still is?

It is easy to dissect a problem when we are not in the middle of it. It is possible to devise a plan that could alleviate issues when I have the time and am in a quiet place. What too often happens, however, is that once I finish writing and step back into the busy-ness of my life, I forget all about that great solution I just created. I get caught up in the moment and never quite get beyond that. I may be able to come up with the good ideas in my words, now I need to make sure that my actions follow through and back them up.