Being part of a Parkinson’s support group often connects you to people at different stages in their illness. We lost a friend from our PD community this week. He was younger than my husband but they had both been diagnosed for a while. It is the third person we have lost in the past year and is always difficult. We were told that Parkinson’s Disease is not terminal but we do know that it can complicate other illnesses making my husband more susceptible, especially to respiratory issues.

When this happens, we remind ourselves of the saying “When you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s”. The friends we have lost were all on a similar yet very different pathway. One of them suffered greatly from dementia along with his PD, another was having extreme physical challenges. Just as I am sure that their diagnosis of Parkinson’s Disease was a factor in deaths, I also know that it doesn’t mean that the same thing is coming for my husband.

We can never truly know where we are headed on this journey so all we can do is work to maintain a positive outlook. If he continues to exercise, eat well, and be conscious of controlling his symptoms, then we can hopefully keep on fighting for many more years. 

If you ask me how my husband is doing, I can respond immediately with details about his treatment and his current condition. Ask me the same thing about myself and chances are you will get a simple “fine”. I don’t intentionally ignore my own health, I just don’t always remember how important it is in relation to what my husband is facing. My minor challenges seem so insignificant compared to what Parkinson’s brings to him, I tend to stuff them away rather than deal with them. My life has become secondary to his because somewhere I got the idea that this is how it needs to be.

The reality of being a CarePartner is that if I am feeling at all under the weather, I cannot provide the level of care that is needed. So, when I ignore pain in my joints or mild headaches, I am not only hurting myself, I am also hurting him by not being fully here for him. I am also putting us both at risk because one of us needs to be fully functioning at all times to keep us healthy and safe. PD impacts his functionality so I need to make sure that I don’t let anything impact mine.

As CarePartners, we often have conversations about how to motivate our People with Parkinson’s to take care of themselves through exercise and diet but how many of us take those messages to heart? One of the benefits of my husband’s diagnosis is that we are both exercising more now and we are both more aware of what healthy living looks like, not that I always do it. I need to keep an awareness of my own care and be as diligent about how I treat my body as I expect him to be about his. Staying active through exercise, choosing and eating healthy meals and working to keep my brain sharp makes me the best I can be and that makes me the best CarePartner for my husband.

I have been feeling isolated lately. Our support groups haven’t met for months, we aren’t able to go out with friends and life at home with just my husband has become the norm. We get excited about our weekly trips to the grocery store. Our 1700 square foot house has never felt smaller.

Thankfully, we are in a couple of on-line groups, they provide some contact but sometimes I just need a hug from a friend. Zoom meetings are great but are not a real substitute for being able to interact with others in person. The internet does allow me to maintain relationships with others in anticipation of better days ahead when we can be together again. What I have found is that I need more from on-line support than I did when it was in-person. I was having breakfast once a month with a group of CarePartners and then every other month we would have a larger support group meeting. Since everything has shut down and moved on-line, what started as one zoom partner meeting a month quickly became two and now I have added a third. I was just invited to participate in a weekly group that would bring the count up to 7 zoom meetings a month just for CarePartners. It is terrific that there are so many options out there yet I would trade them all for just one of our breakfast meetings. I miss the smiles, the connections, the hugs. Maybe soon?

I have found that if I want a problem to get bigger, all I have to do is sit for a while and worry about it. Procrastination, avoidance and yes, even fear of failure all come into play as I sit and wait for a solution to the situation to magically appear. This process especially doesn’t work well now that I am a CarePartner and in charge of many of the day-to-day activities necessary to support our home.

A learning opportunity happened this past week which has given me a chance to practice dealing with difficult situations. A tree fell on our garage during a wind storm. In the past, my husband would have been the one making the calls and dealing with the tree guy, roofer, and insurance adjuster but thanks to PD he has a hard time making phone calls or sending emails. So, if it is going to get done, I need to do it. A lot is handled through conference calls allowing him to participate in the conversation if he chooses, but I am the one who has to initiate the contacts and complete the transactions. This is not normally my job and is definitely stretching my comfort zone.

 I don’t mean to say that when faced with a difficult challenge it is bad to take a moment to think about what you should do, but creating a plan for success is different than wallowing in the negative swamp of “how on earth can I do this?” or “what if I fail?”. I need to understand and accept that anticipation anxiety is real, then go ahead and act to get us started towards resolution. Rather than waste my energy on worry, I find that if I spend it doing what needs to be done the problem can be resolved, and often with much less stress than I expected.

Sleep matters, I know that and my husband knows that. I sleep best in a dark room but he needs to be able to see where he is going if he needs to get up at night. We have night lights in most of our rooms, including the master bed and bathroom. I learned in a recent Davis Phinney Foundation webinar that red night lights are less disruptive to sleep. We are working to replace our current night lights with red to see if it helps. It’s a little change that could have a big impact if I’m able to sleep better. 

Speaking of sleep, as my husband’s symptoms progressed it became more difficult for him to roll over in bed at night. We had heard that satin sheets helped so we bought a set. The challenge then became staying in bed and not slipping out when trying to turn over. His solution became what we call his slip and slide. He places just the satin pillow case on the bed under his midsection. It gives him the smoothness he needs to be able to move and yet has the rest of the bedding to provide stability.

When brushing his teeth became difficult, we both bought simple $10 battery operated toothbrushes to see how they would work. Now, all my husband has to do is basically hold the handle in his mouth, the brush heads do the rest of the work. It seems to be helping.

These ideas aren’t huge but are making a huge impact on the quality of our daily living. Don’t let the challenges of PD become overwhelming, instead look to the easiest solutions first. So often it is the little changes we make that can help the most. 

When we bought our home almost 20 years ago, thankfully we recognized the fact that we were both getting older and decided we didn’t want to have to negotiate stairs. We didn’t know that within a few years one of us would be diagnosed with Parkinson’s Disease and we would be looking at a different scenario as we try to safely “age in place”.

What does it look like to age in place with PD? We aren’t really sure because this disease can strike people differently. When my father had Parkinson’s, he needed a walker early on and was in a wheelchair for the last 2 years of his life. If my husband reaches that point, we will have a problem because our house is not really walker or wheelchair friendly. The only accommodation we actually have made to our house so far is putting grab bars in our shower to prevent falls. We are in the process of buying a new bed with an adjustable base to help provide the support he may need as things progress.

The thing that matters most is that any changes we make have to be livable for both of us. I am his chauffeur so the car we bought had to be something I could easily drive. We use the same shower so the grab rails need to be placed out of the way but there when we need them. My sleep is as important as his, so the bed we choose has to be one we can both be happy with. Our home needs to be safe but usable as we both navigate the challenges PD and general aging bring.

I am not a patient person. When there is something to be done, I would rather tackle it myself and get it over with than wait for someone else to do it. I don’t have patience with myself and struggle to have it with those around me, which means I get easily frustrated. My husband says I am a control freak. This is not a good mindset to have when caring for someone with Parkinson’s Disease.

Sometimes the frustrations come from outside our home. A lot of things have been happening in the world lately that frustrate and upset me. I am working on remembering that the only thing I can control is my reaction as I attempt not to become upset, which in turn upsets our home. I am trying very hard to create boundaries around the outside challenges we face to separate them from our everyday existence. I need to have an awareness and concern about national and world events without letting them overtake my emotions or I cannot be effective in caring for my husband.

I don’t know why the universe is testing me so much lately, but I will remain vigilant about being patient and loving both in and out of my home. I will strive to not let the negative energy that seems to be everywhere overwhelm me. Our world needs more love, patience and understanding, I can be a conduit for that if I am only willing to try.

Life has gotten a little easier since my husband had Deep Brain Stimulation (DBS) surgery. He is now able to do more things for himself and helps more with tasks around the house, it is really nice. However, there are times when the stiffness and tremors return as if to remind us that the disease is still there.

And yes, while some of his symptoms have improved, we continue on the Parkinson’s pathway. I now have to try to watch to see that he doesn’t push things too far and get hurt. As excited as I am to see some of his abilities return, I am sure he is even more excited to feel himself again. It would be easy for me to back off completely and let things go, yet I know that while he is greatly improved it is unrealistic to expect him to be where he was pre-PD. After all, while DBS can positively impact his movement and mobility, there are other issues that the past 10 years have brought that cannot be ignored.

So, my new challenge moving forward will be to keep an eye on what is happening to him as he tries to relearn skills that he hasn’t used in a while. There will be a certain amount of trial and error as his body and brain learn to communicate again and muscles that have been dormant for a while are woken up and asked to respond. It will be my job to support his safe recovery and encourage thoughtfulness as we figure out together what this portion of our journey will look like.

My husband recently had Deep Brain Stimulation (DBS) surgery which involves placing probes in his brain that are attached to a battery pack in his chest. It is similar to a pacemaker and stimulates the areas in his brain that are negatively impacted by his Parkinson’s Disease. It has been mostly good, his body seems less stiff and he is able to do things more quickly and with less effort, but there are some concerns. He tells me that he feels a little less steady on his feet at times and complains that his equilibrium is off. I try to stay close to make sure that he is safe, but not hover as we learn what these new changes might mean for him.

The most challenging thing for me is figuring out how to react to the changes. As his symptoms were progressing, I simply started doing more for him. Right after the surgery, his tremor was gone and it was amazing, he could hold me without shaking and there were no night tremors. Now, as the doctor works with programming the device, his tremors are occasionally back but much less prominent. Daily activities like dressing are easier for him and yet I find myself still trying to do things that he should probably be doing for himself. It is like we have stepped back 5 years and I need to be mindful of the help I offer, not to do too much.

I expected adapting to his illness to take me in one direction, now I find it may be something totally different. Just as he has to rediscover control of the movements he had lost; I need to relearn my partner role so I can stand beside him and help him reach his full post-surgery capability rather than stand in his way. It will be an exciting time for both of us as adapt to the new reality DBS has brought to us.

There are days when it feels like hope is all I have. My husband is having a bad day, I am tired and cranky and things are just not going the way they should. Those are the times when I wonder why we have to face this challenge? I watched Parkinson’s Disease take my father away from us, why should I have to go through it again with my husband?

Then, I stop and take a breath. It is not fair that anyone should have to deal with chronic illnesses, it is simply life. There are alternatives, I could have lost him entirely as I have seen with some of my friends. Instead, we are still here and we have time together. We can have a good future together regardless of PD, if we are willing to try.

So, I will keep looking forward with hope. If I continue to hope for better days and fun times together, I know we will find opportunities to share them. I will also hope for new treatments to minimize the impacts of his illness. Finally, I will hope that, with my support, he always wants to keep fighting the daily PD battles so that we can have many more years together and share in the joy they may bring.