In my role of co-host for a PD support group, I was invited to a volunteer appreciation luncheon put on by our regional Parkinson’s Resources organization. It was held at a local hotel and included a small resource fair. I was hesitant to go because I have only been working with the group for a few months and my husband wasn’t interested in attending with me. After speaking with my co-host, we decided to go together to see what was happening and I am so glad we did.

There were probably around 150 people at the event. We were seated at separate tables specifically so we could make new connections. At first I was a little nervous but I soon discovered that it was like walking into a room of long lost relatives. We all were connected through PD, either as a person with the disease or someone who loves them. I came with one friend and left with so many more I cannot count them all.

The day was full of acceptance, warmth and understanding. Our luncheon speaker was diagnosed with Parkinson’s five years ago and now leads an international advocacy program. I sat next to a couple who have been on this journey for 26 years and was so encouraged by their resilience as they continue their fight together. I came away humbled thinking of how little I actually do and yet empowered by the strength of this community. It may be a community I never wanted to join but it is also one I am so thankful for and proud to be a part of as we all work to end PD forever.

If you are looking for an opportunity for advocacy, check out PD Avengers.

It’s listed among the non-physical symptoms and can either be caused by the autonomic dysfunction inherent in Parkinson’s Disease or is sometimes related to the medication rather than the disease itself. Many of the medications used to treat PD, including carbidopa levodopa act to lower blood pressure (BP). In my husband’s case, this was good because his BP was high and he was able to stop taking his BP meds when he started taking his PD meds. A positive trade-off for us. For up to 50% of People with Parkinson’s this is not the case and Neurogenic Orthostatic Hypotension, or nOH, is a life-threatening challenge. This challenge increases the longer a person has Parkinson’s and as they age.

People who develop nOH may experience dizziness, blurry vision, even fainting at times, all things that contribute to the risk of falls. A percentage of those having low BP episodes will also develop high BP episodes. We have a friend whose BP can fluctuate from dangerously low levels to dangerously high levels within just a few hours. Medical interventions are difficult, how do you treat high BP without lowering it too much?

There are some things that can be done at home that may help. People who have issues with low BP may find that staying well-hydrated, avoiding alcoholic beverages, raising the head of their bed and using more salt on foods can be beneficial. One suggestion that comes from the Davis Phinney handbook is to avoid exercise that causes you to sweat. This is a tough one because we all know how important exercise is in controlling the progression of PD. One thing to always remember is to discuss these interventions with your medical team, they need to know about anything you may want to try on your own. nOH is a challenging component of PD for so many people, having an awareness of their Blood Pressure is the first step, reporting it to the doctor should be your second.

To learn more check out What is Neurogenic Orthostatic Hypotension in Parkinson’s? – Davis Phinney Foundation followed by Manage Neurogenic Orthostatic Hypotension – Davis Phinney Foundation.

I shaved my legs this morning. I’m sure that is too much information to share but you need to know that it only happens once in a blue moon because I don’t normally take the time to do it. I love the way my skin feels when it is clean shaven and especially like to take a few extra moments and put on some nice lotion. It’s a really good way I can pamper myself. But is it pampering or is it simply trying to meet my need for self-recognition?

On a normal day, I make sure I am available to help my husband with his personal grooming then rush through my stuff to get on with the other things I need to be doing. I have to admit that there are days when I don’t even make it to the shower because something else seems more important. Caring for my home and my husband always sits at the top of my to do list, way above taking care of me, especially things that are simply cosmetic. I haven’t worn make-up since I quit working, my hair may get combed if I catch a glance of myself in a mirror. There must be a better way to approach my own self-care.

Getting back to my initial thought that sometimes it is the little things that count the most, it only takes a few minutes to shave my legs and put on lotion. It’s a small thing that makes me feel better and should be worth prioritizing. Recognizing the little things that I can do for myself during my day, and then acting on them, reinforces my own self-worth without taking away from my commitment to my husband. There are times when I can put myself first without endangering him or neglecting other duties. I need to take advantage of those little things and remember that it’s okay. A bit of self-care, wherever I can find it, is good for my mental health and helps prepare me for everything else that today will throw at me. It’s not pampering, it’s survival.

My husband’s Primary Care Physician sees him once a year, his neurologist/movement disorder specialist twice. He sees all the others only when something goes wrong, not on a continuing maintenance schedule. How on earth can people who spend less than an hour with him annually ever hope to know what is truly happening in his life? I need to remind myself that while they are medical experts and should have more knowledge about his physical state, I am the one observing him daily which makes me the expert on how things actually are progressing in his diagnosis.

I have been going to medical appointments with him since we learned he has PD. We have seen multiple Primary Care Doctors, Neurologists, Physical, Occupational and Speech Therapists. I am the only constant on his team. They give him the same tests every time we visit, he’s had them so many times he has them memorized. He is usually on his best behavior at all appointments which doesn’t necessarily give any of them a clear picture of where he is in his journey. Thank goodness I am there to share my perspective and let them know what we are truly experiencing.

Along with attending appointments, I talk with friends in our PD network about things they might have heard of that could be helpful. I stay up on research so I can approach his medical team with questions regarding alternatives. I don’t worry about embarrassing him, I am honest with his doctors, because if they don’t know what I know about his condition they cannot properly treat his progression. It has taken a while, but openness with the medical members of his team has allowed me to gain their respect. Most of them are willing to listen to what I am saying, something that will only become more important as we move forward in my husband’s journey with PD. After all, I am the expert on his daily living experience which really makes me the most valuable member of his team.

I am very aware of PD, my father died with it almost 30 years ago and my husband has been dealing with it for over a decade. I have seen the various presentation in many friends who share in the diagnosis. I don’t need an annual reminder of this disease and the disruption it can cause within my home and my family. Why do we need a month to recognize it? Because there are still many people out there who haven’t had the opportunity to meet with Mr. Parkinson and his lovely disease and it is important for them to understand just what that could mean.

Sharing awareness starts within our family. I want those closest to me to see the changes this disease has brought to my husband and to our lives. I want them to know him and to love him with the disease just as they did prior to his diagnosis. And I want them to understand that it isn’t the worst thing that could ever happen. Life goes on. Along with this I want to make sure that life does go on and by that I mean we need to keep doing things. We need to go out in public and we need to interact with people who are not in the PD world so that they can see what Parkinson’s looks like to better understand. It could happen to them too and they need to be aware that it exists. One other thing I do to raise community awareness is write. I have written letters to the editor of our local paper, I post stuff on Facebook, and I write my blog. Every word I can put out there about PD helps.

Research is the only thing that will lead to a cure. I participate in research studies, one that is PD related and one that is a broader look at everyone in an effort to better understand what makes us all tick. I applaud Michael J. Fox, Davis Phinney and Brian Grant for their bravery in coming forward to do more than talk about PD. I support local and national Parkinson’s organizations to help as much as possible in the work they are doing. I live my best life possible as the CarePartner of someone with PD. Life does indeed go on and we can still make it a good one.

To dip your toe in the research pool visit the Michael J Fox Foundation and look for PPMI at https://ppmi.study.myachievement.com/ppmistudy/?utm_campaign=bg-a1b1R00000AEVPA&msclkid=e2f946561dbd110b52a622665df1a244&gclid=e2f946561dbd110b52a622665df1a244&gclsrc=3p.ds

This is an on-going discussion at our house. I think he needs mobility tools, like a cane or walker, he doesn’t agree. My husband calls it “postponing acceptance”. He fights back against using helpful tools because he doesn’t want to give in to Parkinson’s any more than is absolutely necessary. Whatever it is, I think it can be helpful as long as it is grounded in reality.

I am not the one living with this disease so I can never really know how it is impacting his body. I don’t have issues with balance or fatigue. What I do know is that the man I love struggles with what should be simple activities of daily living. There is a decline in his ability to get around and, if there are tools that can help, I want to make sure he has them. But, just like the proverbial horse to water, I can’t make him use them.

His stubbornness is a tool in itself as he continues to battle the decline. He is determined to stay as healthy and mobile as possible for as long as possible, for which I am very grateful. Maybe I shouldn’t be pushing him to use aids if he truly feels he doesn’t need them yet. Maybe what I should do is make sure they are available for the day  when he is ready and trust him to know best. He will know when it is time to stop postponing and move into acceptance of the next level. I just need to be here to support him when he finally makes that choice.

We went to an 80^th birthday party today for a friend. It was designed as an open house, come and go as you please. This works best for us since we can never be sure what kind of day my husband is going to have, and the flexibility allows us to participate as much as possible. There were about 20 people there, a comfortable number for the space, and chocolate cake. (Yum!) We got to visit a bit with the birthday boy and his wife and met some new people as well. We had one glitch when my husband needed help getting up from a chair and I wasn’t close by, but he managed. It was a great opportunity to be out and about without any expectations other than socializing.

We don’t go out as much anymore and I sometimes feel that loss. My husband tires easily and I worry too much about what might go wrong which always impacts our social adventures. It takes us more time to get ready these days. Then we go and find that we spend less time out than it took to prepare. I have to admit that there have been times when I declined invites because thinking about the effort can be overwhelming. I need to stop thinking so much and start doing more.

If I approach outings with a positive attitude, we can both enjoy the experience. Yes, it may take more time to get out the door but it is definitely worth the effort. Any interactions we can be part of expand our world and give us a different perspective on life. Isolating at home is debilitating, connecting with others is invigorating. My husband may not engage in conversations as easily as he once did, however he needs the opportunity to try. And, if I can keep an eye on how things are going, I will see where he needs help and signs when he has had enough. We may only be there for 30 minutes, but that is 30 minutes of intensive engagement in a social setting, an informal therapeutic intervention neither of us can get at home.

When my son was young and learning about making decisions, I was taught to only give him a couple of choices and to make sure that both choices were things that were acceptable to me. As my husband’s disease progresses, I see that this same principle may apply for a couple of reasons. First, Parkinson’s Disease slows the processors in my husband’s brain. He struggles when asked to do two things at once and, I would assume comparing and contrasting multiple choices would be just as difficult. My second reason is more selfish, I usually know the outcome I hope to achieve, therefore I just need to present it to him in a way that makes it agreeable to him in the moment.

Let me share an example. We have been talking lately about how important it is for him to get outside and get some fresh air. Yesterday was a sunny afternoon and seemed to be a perfect opportunity. I made the mistake of asking him if he wanted to go for a walk. I could see the “no” in his eyes when I quickly realized my mistake and said instead, “Would you like to go for a walk to the stop sign or do you want to try for the little library today?” We both had a good laugh and then  wound up taking the shorter of the two walks.

PD has taken much of my husband’s control away from him. I want him to still be in charge of as much as is possible and giving him appropriate choices allows for that. Communicating effectively on my part can help him make positive decisions for himself and can alleviate some of the load for us both. Yesterday’s interaction could easily have turned into a disagreement, an argument, or simply a failure where I was disappointed and he didn’t get the exercise we both know he needs. Instead, by revising my initial question, I was able to encourage him to make a positive choice for himself. We were both rewarded with a nice walk in the sun.

The thought of downsizing always puts me in mind of my husband’s mother who moved from her house into a senior community. She started out in an apartment, then moved into assisted living and even a nursing facility as she aged and her needs changed. All were in the same location, within blocks of each other. She never lost her community connections and the staff helped her through all of the transitions. It was especially valuable for us because she lived over a thousand miles away and we couldn’t be there to help or visit as often as we might have liked. 

My mother also moved into senior housing a few years after Dad passed and when she couldn’t manage on her own anymore. It was a good placement for her as she found companionship and support. There were people who would do her laundry, clean her apartment and prepare healthy meals for her. She was able to participate in activities with the group and there was a small outdoor space where she could help care for the flowers. It was a safer alternative to living alone in a single family home. There was even a nurse on-site for emergencies, it was a very good fit.

The idea of moving out of our house is terrifying because we have been here for over 20 years. I have to admit that sometimes it would be nice to have someone else taking care of things. Then I look at the huge senior facilities being built in our community and am reminded of beehives. I picture the residents as queen bees and the staff as their workers. There doesn’t seem to be any space for privacy or individuality. Perhaps that is an okay trade-off, but would it work for me? What about those days when I just want to hang out in sweats, would I fit in?

Am I, are we, ready for a change? I don’t think so, not yet, but the day may come’. I need to keep an open mind about all our options. We never know where my husband’s diagnosis will take us, the day may come when a hive is the right fit. And my husband says I’d make an awesome queen bee….bzzzz.

We had opportunities to celebrate a birthday and my son’s anniversary both within the past week. It has been nice to be with friends and family as we mark milestones. As I age, I am reminded of the importance of celebrating every day we have together. This is also brought home to me as I watch my husband’s abilities change thanks to his diagnosis of Parkinson’s Disease. We just can’t do some of the things we used to do, and I wish we had done more while we still could.

Rather than think about what we can’t do, which leads me down a dark road, I like to think instead about what we can do to make sure each day matters. Being retired gives us a lot of time together and we want to do our best to keep that time pleasant. We greet each other every morning with a kiss and an “I love you” and end each day in the same way. Breakfasting together gives us a chance to read the newspaper and look forward to our day. We make time every afternoon for an aperitif, a light snack often accompanied by a small glass of wine as we check-in to see how our day is going. It’s a small yet meaningful celebration we do each and every afternoon. We dine by candlelight in the winter months and make toasts to something that has happened in our day. Every day has a purpose and a name, grocery shopping happens on “WinCo Day” and we try to pick up something special for lunch as a reward for completing the task.

We didn’t expect to be dealing with PD in retirement. We could let it take over and control our days or we can take control back. Too many of my friends have lost their partners, I still have mine and want to enjoy whatever time we have together. All the things we do may seem silly, but they help us stay on a positive track. Celebrating everything, no matter how small or seemingly insignificant, makes our days lighter and our journey with PD easier. I will celebrate during good times, celebrate during bad times, rejoice all the time simply because I still can.