My husband’s birthday is this week, and we have simple plans to celebrate. We’ll have dinner together at a favorite restaurant, just the two of us. It’ll be lowkey compared to prior years, but it is just what we need now. It doesn’t mean that I am not eternally thankful for each passing day, let alone year, that we get to spend together.

I have mentioned that my father had Parkinson’s Disease. His trajectory was very different and he was only 73 when he died. I was terrified the year my husband turned 73, I felt that we were against the odds and so afraid I would lose him. That was several years ago now and we are still here, stronger than ever in our battle. His symptoms may have increased some, but so has his resolve to fight back. He remains steadfast in his motivation to exercise and it is working.

I can’t know how much longer our journey will last. I also can’t let worrying about that interfere with living fully each day. The months, the years will pass and there may come a time when I am alone. When that happens and I am looking back, I want to know that I spent every moment engaged in our life not thinking about what could go wrong but building positive memories. It will be those wonderful memories that sustain me if, or when, our journey together ends.

I did all the right things, asked for wheelchair escort at the airport, called the hotel ahead of time to make sure we had ADA accommodations in our room, requested an SUV instead of the economy rental car so he would be comfortable. I packed appropriate clothing and personal grooming supplies we might need. I didn’t make an agenda, knowing that we both need a lower energy trip with minimal activities. I was ready for a vacation. There were a couple of challenges I hadn’t expected, however.

Challenge number 1- getting from the parking garage to the ticket counter. Wheelchair escorts don’t start until you get into the airport lobby, sometimes even the ticket counter. That can be a long walk. We also learned that the ticket agents at some airlines work limited hours. This was most difficult on our return trip from Reno because we had to wait at the counter for almost an hour until someone finally arrived to call for the wheelchair. I think next time I will find a way to bring our own wheelchair and check it at the gate.

Challenge number 2- no matter how accommodating a hotel room is, it won’t be as good as your home setup. ADA accommodations vary by location and interpretation. There were grab bars by the toilet, they were being used as towel racks. Furniture in the room was definitely not designed for someone with a handicap, the bedside table was wobbly and held a tall lamp with a control at the top, out of reach for anyone lying in bed. They did have heated tile floors in the bathroom, that was a treat. Our room opened out onto a small patio with a great view of the lake, unfortunately there was a large chair at the foot of the bed and, had my husband been in a wheelchair or using his walker, he wouldn’t have been able to negotiate around it. It was obvious that the people who designed and decorated the room don’t really understand what accommodations should look like. 

Even with all the challenges, I am glad we went. I am also happy to be home. It strikes me that I don’t realize just how accommodating our home has become. We have grab bars where we need them, furniture is placed appropriately, my husband has a transfer pole to help him get in and out of bed. The trip was a nice reminder that life in our home works well for us, something I don’t always appreciate. Vacations are good, home may be even better.

I grew up in the “just say no” age and have to admit to trying pot back in the day but I never really enjoyed the way it made me feel. Perhaps that is why I am ambivalent, even reluctant, to embrace the CBD oil craze. If I can put away my old ideas and look at things from a new perspective, perhaps I can find a solution for problems I never faced back then, physical aches and pains associated with aging and difficulty sleeping. And it might be a miracle medication for my husband on his journey with PD.

It is important to understand the differences between Medical Marijuana and CBD. Marijuana gives you a high, CBD is extracted from the plant and has minimal amounts of THC, the chemical responsible for that sensation. CBD comes in different forms including pills, oils, vape pens and creams that you can rub on sore muscles. It has been legalized somewhat in all 50 states now and is available at many retail outlets. Only one version of CBD Oil has been approved by the FDA and it is limited to the treatment of epilepsy. There are still strict federal limitations on studying the medical effectiveness of this compound. While some international studies have been done, much of the data on whether it works or not is anecdotal coming from people who have tried it and found success.

Much of the information about CBD is positive but not all. There is a grey area surrounding benefits versus long term risks, and studies that still need to be done. My biggest consideration regarding the use of CBD is that without industry oversight there are no controls on where the CBD is sourced, who manufactured it and whether they can be trusted. I see videos on the internet of People with PD who are suddenly walking again thanks to CBD. I hear stories from friends and family of how it is working for them, taking away their pain and helping them sleep. Perhaps it is the miracle drug of the future, I am just not sure I am ready to go there quite yet.

To learn more about CBD Oil and PD, check out this blog post on the APDA website- CBD for Parkinson’s Disease Symptoms | APDA (apdaparkinson.org) written by Dr. Rebecca Gilbert, MD, PhD, Vice-President and Chief Scientific Officer of the American Parkinson’s Disease Association. To get the latest on FDA approval, check this out from their website FDA Concludes that Existing Regulatory Frameworks for Foods and Supplements are Not Appropriate for Cannabidiol, Will Work with Congress on a New Way Forward | FDA.  See what the Mayo clinic has to say here Is CBD Safe and Effective? by Dr. Bauer.

I feel the need to remind everyone that I am not a medical professional and would never suggest any changes in treatment, I am only sharing our journey with PD and the things we encounter. Regarding acupuncture, I found a 2021 study that stated, “particularly during the early stages, acupuncture may reduce neurodegeneration of dopaminergic neurons and regulate the balance of the dopaminergic circuit, thus delaying the progression of the disease.” (Zhao Y, Zhang Z, Qin S, Fan W, Li W, Liu J, Wang S, Xu Z, Zhao M. Acupuncture for Parkinson’s Disease: Efficacy Evaluation and Mechanisms in the Dopaminergic Neural Circuit. Neural Plast. 2021 Jun 15;2021:9926445. doi: 10.1155/2021/9926445. PMID: 34221005; PMCID: PMC8221898.)

What a mouthful of big words but the bottom line is that acupuncture may actually slow down the progression of PD if used early enough. That is huge because we have always been told that the only thing that can slow progression is exercise. Unfortunately it may not do anything for my husband’s PD symptoms as he is in the mid to later-stages of his illness, but is it safe for him to use and will it help alleviate his pain? Great question as we are still working to gather information.

As always, my husband is hesitant to try anything different. I brought the topic of acupuncture up at his recent annual exam with his Primary Care Physician. She felt it could be beneficial, especially with his history of failed interventions through physical therapy. I emailed his neurologist to ask her opinion and to make sure it was a safe option for him considering he has DBS probes in his brain and she said it would be fine as long as they didn’t use electrical stimulation which could interfere with the controller implanted in his chest. I am reaching out to people in our community for recommendations for acupuncturists. I am practicing patience with my husband as he considers this alternative treatment.

For more about the potential benefits of acupuncture in People with Parkinson’s check out this review of studies I found on the National Institute of Health website Acupuncture for Parkinson’s Disease: Efficacy Evaluation and Mechanisms in the Dopaminergic Neural Circuit – PubMed (nih.gov).  To learn more about acupuncture as a procedure check here Acupuncture – Mayo Clinic.

We are both aging and we both have health issues including aches and pain. His may be related to his diagnosis, mine may also be related to his diagnosis as I am being asked to do more around the house and in caring for him. His regular regime of carbidopa-levodopa may alleviate some stiffness, it doesn’t alleviate pain, so we are looking at options for him. At the same time, I have developed an issue with one shoulder, not sure why, and am looking for relief there too. My sister and a good friend swear by acupuncture, and I am wondering whether it might be good for us. At the same time, I have friends who find relief with CBD oil. Perhaps we need to give that a try?

Before I suggest any “trials” for either of us, I want to do my research. I know the internet is only as good as the sites I visit so I always stick to the ones affiliated with well-known sources. I like to look at WebMD, the Mayo clinic, the National Institute of Health, and of course my basics for his situation, Michael J. Fox, Davis Phinney, The Parkinson’s Foundation and American Parkinson’s Disease Association. I feel that I can trust what I read on their sites because they are based in proven scientific research. If research doesn’t exist, as can be the case sometimes, that is clearly stated along with the reasons why. I appreciate that they strive to provide as much information as they can without bias or judgement.

Once I have done my research, I can sit down and have a conversation with my husband about what I have found and how we should proceed. His diagnosis has not impacted his cognitive skills, thank goodness, and I need to make sure that I listen and respect his input. He is cautious in treatment and never makes changes to his plan without first consulting his medical team, so that would be his next step before making a final decision. We are on a marathon journey with PD so we can take our time to make sure that any interventions he tries are safe and potentially effective. I, on the other hand, will be trying whatever might fix my sore shoulder now. I will consult with my Primary Care Doctor and then proceed with treatment. I have things to do and don’t have the time or patience to wait for it to get better. Watch for updates on healing for both of us in future blogs.

Let’s face it, my husband’s neurologist doesn’t have the time to be following every advancement being made in the struggle to find a cure for PD. I, however, do follow what is happening as much as possible and want to be able to ask her if something comes up that I think might be helpful. I recently heard about a vibrating glove developed by a team at Stanford University that is giving relief to some people with PD. Wearing it just a few hours a day seems to alleviate not only physical but some cognitive challenges as well. This is definitely going on the list for our next appointment. 

Just this month, I learned that a research team using data from the Michael J. Fox Foundation’s PPMI (Parkinson’s Progression Marker Initiative) study have identified a biomarker for Parkinson’s. This breakthrough represents a way to diagnosis Parkinson’s earlier and more specifically by type. Currently patients must undergo a spinal tap, but as the work continues the hope is that it will one day be as simple as a blood draw or skin test. The research team believes that this will lead to better treatment for those already diagnosed because they will be able to suggest differentiated treatments based on the actual amount of biomarker found. It is amazing and another thing to talk with our neurologist about.

I have always supported research with the thought that it won’t help us but may help someone else down the road. These developments have proven me wrong. My hope has been renewed that, while my husband may not see a cure, he may very well see a more personalized treatment that limits the impact of his diagnosis. This is all thanks to research teams and individuals, like my sister, who have come forward to participate in the study. I hope they understand just how much their contribution means to so many of us. They are truly giving us back hope for a life fully lived regardless of a PD diagnosis.

Check this out for more about the vibrating glove Good Vibrations, Can Parkinson’s Symptoms be Stopped? , and for more about the biomarker Assessment of heterogeneity among participants in the Parkinson’s Progression Markers Initiative cohort using α-synuclein seed amplification: a cross-sectional study – PubMed (nih.gov) .

My husband is really quite capable for someone who has had Parkinson’s Disease for probably 15 years now. He is still able to do many of his daily activities with minimal assistance and, when he starts to struggle, he is open to encouragement which can often keep him on track to success. I can usually tell when he feels that my encouragement has slipped into the nagging stage and back off. My use of encouraging words and just the right amount of support empowers him to keep trying no matter how difficult the task.

Encouragement is also useful in my role as CarePartner, even though it is usually me encouraging myself. I tend to be more negative about new challenges and don’t always have faith in my own abilities. When my husband is there, he encourages me to give things a try anyway. If not, it’s up to me. I start by taking a moment to remember similar challenges that I have completed, it reminds me that I am more capable than I give myself credit for. By envisioning myself successfully doing the task, I feel empowered to tackle it. My work may not be perfect or even close, but if it gets done, I consider it a positive outcome.

Encouragement is empowering. “You can do this”, “I think you’ve got it”, “wow, that was tough” are all great ways I use my words to help my husband and myself face whatever PD and life want to throw at us. I believe in our abilities because I know that together we are strong and capable. We can do this, we’ve got this no matter how tough it gets, we’ll make it through.

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.