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.

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.