My husband had his annual eye exam recently and I was so excited because his ophthalmologist was able to answer my questions regarding PD. She spoke about potential dry eye issues and explained that some people experience double vision. She suggested blinking exercises to help lubricate his eyes. Then she gave him a prescription for bi-focals and sent him on his way. I don’t think she knew, even as we didn’t, that bi- or multi- focal lenses create a unique challenge to his brain and can actually increase his risk of falling.

According to Ali Hamedani, MD, MHS, Professor of Neurology, Divisions of Neuro-Ophthalmology and Movement Disorders, Perelman School of Medicine at University of Pennsylvania in her article How to Spot Parkinson’s Vision Changes on the Parkinsons’s Foundation website, my husband’s diagnosis of PD slows his eye movements just like everything else in his body. The lack of dopamine in his brain means he struggles to move his eyes within small spaces such as the focal points on corrective lenses. Most neuro-ophthalmologists recommend people with PD use single focus lenses, a separate pair for reading and walking. Perhaps more of a hassle but a safer alternative.

He can use the bifocals for reading and watching tv. He is safe with them as long as he stays seated and says he will be keeping the glasses. I plan to share the articles listed below with his opthalmologist to better educate her on the issues he faces. We are also going to be looking for a pair of single focus lenses that will work for him while walking so he can once again enjoy the scenery around him rather than just see a blur.

To learn more check out https://www.parkinson.org/blog/awareness/vision-changes; Parkinson’s and Vision: 6 Things to Know (davisphinneyfoundation.org).

The first and most obvious place where I need boundaries is in my home. What are my boundaries with my husband? Letting him know when I am tired and cannot handle anymore. I set boundaries around what I am willing to take on as a chore and what needs to be delegated to someone else. I have established time and place boundaries that allow me to have some privacy during our day. The key in keeping these boundaries is communicating clearly, concisely and sticking to them.

In addition to boundaries with my husband, I also created boundaries with my family. I love my grandchildren but don’t babysit them anymore because I have found it is too much for us to deal with. I realize this is not true for everyone and am jealous of those who can do both, I have accepted that I just can’t. I like to host all family events at our house because it is less stressful for us, my husband feels more comfortable and can rest when needed. I ask for help from family members when I need it and try to communicate clearly regarding our situation in living with PD.

I also need boundaries with the outside world. Everyone knows that my husband and my home are my priority. I volunteer at a local museum with the understanding that I can be there as long as all is well at home. I help out with our local support group but do it on my own schedule and around other things that I need to do for my husband.

It has been important for me to actually think about these issues and mentally create boundaries. Once I had the basics figured out, I was able to share them with the appropriate people in my life. It has gone well for me as most understand and want to be supportive. These boundaries will need to be reassessed on a regular basis as our journey progresses. They are working for now and that is all that I can ask for.

Some days it is all I can do to make it to bedtime. More often than not, that has more to do with the things I am trying to do outside of my role as CarePartner. It’s the extra things that I do for our house or for myself that add additional burdens to my day. I forget that if I already have a full load, I need to let go of something before I add something more to it. It’s common sense that a full bucket can’t hold any more water, so why do I keep trying to pour more into mine?

Which brings me to the real challenge I face, how to prioritize my day so I can get the most done and not wear myself out. If I am honest, that often means leaving out things that I want to do and just getting through what I have to do. I forget that those things I want to do are important too. The “want to do”s are where much of my self-care lives. If I am choosing between doing a load of laundry or sitting quietly in the sun for a few minutes, the laundry always wins.

I have the capacity to accomplish a lot in my days, I just need to make sure what I am doing balances those things I have to do with the things I want to do. Yes, my days can get tough but I am resourceful and resilient. If I am mindful about the things I choose to do, more will get done and I won’t exhaust myself doing them. By being intentional, I can and will make it through.

When my husband was first diagnosed we didn’t realize that his Primary Care Physician was familiar with Parkinson’s Disease because his father-in-law had it. Even with his personal knowledge, the doctor didn’t recognize the signs in my husband, and we lived with a missed diagnosis of essential tremor for years before being referred to a neurologist. The PCP would later admit that he should have known. I wound up gifting his office with a copy of “Every Victory Counts” from the Davis Phinney Foundation, I hope they use it to make themselves more aware.

At least they weren’t as uneducated about Parkinson’s Disease as the staff at a local urgent care facility. My husband wasn’t feeling well, could barely stand on his own, so I took him in thinking he had a viral infection. The staff at the facility hooked him up to a heart monitor and decided he was having a heart attack because they didn’t recognize that his tremor was triggering the sensors. They called an ambulance and sent him to the ER which nearly gave me a heart attack all because they didn’t know how to properly evaluate someone with PD.

We were pleasantly surprised recently when my husband had his annual meeting with his ophthalmologist. Normally she is very robotic and the appointments are routine. This time I decided to change things up and asked what we should expect because of his Parkinson’s diagnosis. She dropped the doctor persona and immediately responded with a very concise and friendly answer. It was obvious she was informed about the complexities of treating someone with this disease.

I have decided that the best thing I can do as his advocate is be prepared for any alternative we may encounter. I need to have information that I can share or that is easily accessible. It is important for me to take advantage of every opportunity to share our story and educate others about life with Parkinson’s Disease. Let’s face it, most people are going to know someone who receives a diagnosis of PD in their life. I might even be giving them a heads-up on what is coming in their future and it never hurts to be aware.

There is a great tool put out by the Parkinson’s Foundation called the Aware in Care Kit. Click here to learn more.

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.