I had one of those nights last night. We have a big project we are working on here at home and then there are always other things going on. My “what-if” brain was working overtime and wouldn’t let me sleep. By 2 am I had exhausted all rational thoughts and moved into the ridiculous, but it did give me an idea for this blog.

The thing about “what-ifs” is that they either are or are not going to happen, worrying about them doesn’t change that fact. It is good to accept them as possibilities, maybe even consider alternatives should they happen, then let them go. The letting go process, for me, is to write them down along with potential solutions. Making a “what-ifs” list gives me the opportunity to see the challenges more clearly and enables me to put things aside knowing I have addressed them and can revisit should they become relevant.

Moving forward in life is not always going to be easy, smooth or predictable, but trying to outsmart the world will only give me sleepless nights and ulcers. It is also impossible to define every variable for every issue life throws at me. I create lists for work that needs to be done and, within that list, I will add my “what-ifs” column. Life may give me challenges but “what-if” I can prepare for them in advance?  I think that’s a much more useful approach to the challenges I know I will encounter and will keep my brain from circling the “what-if” drain in the middle of the night.

This is tough and can be a potential disaster for you especially if you choose to do things differently. My approach to tasks is to get them done in the quickest and most efficient manner, my husband is much more driven by perfection. I am learning not to try to do things when he is watching because he likes to tell me the “correct” way to do them. He is learning that once he turns something over to me, he needs to back off or he is going to get grumped at. These are simple facts that we are both learning to accept in our changing roles.

We are in the process of hiring a contractor to redo our drive and entryway. I am the one who has to make the contacts and will probably be tasked with supervision of the work as it progresses. Our first disagreement came when I scheduled for a contractor to come and give me an estimate during my husband’s exercise class. He wanted to be there even though being there was simply standing by watching someone take measurements. I convinced him to skip this one because his exercise class is more important and scheduled the next one at a time when he could be with us. Sometimes it’s just not worth the battle.

I have no intention of choosing a contractor or accepting an estimate without first discussing it with my husband. The final decision, however, is going to be mine. While I know how important it is for him to know that I respect his input, it is equally important for me to know that he trusts my judgement. We will have many more opportunities where I will need to take the lead and he will have to let me and it will be with decisions that are a great deal more important than who pours our concrete. We both need to believe that I am capable of making those choices when they come up and be able to trust that I will make them well.

Perhaps I should have listed that third thing first since it is so basic and vital to the role. If I don’t take care of myself, I am unable to do the other 2 jobs. So, this week I am seeing my doctor to check out some pain I have been having in my shoulder. It hasn’t kept me from caring for my husband yet, but I know it is impacting how we interact. I get cranky when things don’t work right and my left arm isn’t working the way it should, I need to get it fixed.

My role of providing care varies  based on how my husband is feeling. On a good day, he needs minimal help because his symptoms are mild and the meds are working. However we do have bad days when he seems to be tired or off and I need to step up my support. It would be great if we could predict when those bad days are going to strike but there really doesn’t seem to be a reason, they just happen. We deal with them and move on.

Being a loving partner is the easiest component of this journey because I loved this man before PD and I will love him no matter what happens. I just have to remember to take the time to let him know how I feel. Parkinson’s Disease may try to come between us at times but I won’t let it. PD will be a challenge for the rest of our time together, the love we share will help us overcome it.

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.