parkinsons

Research into Parkinson’s continues but don’t wait for a cure. Encourage your loved one to do everything they can now.

I get often get information on new research breakthroughs for Parkinson’s Disease in my daily newsfeed. It is good to see so many scientists are working on this topic, however, it is still doubtful anything will lead to a cure for my husband. The latest note I received talks about a new imaging technique to see the smallest alpha-synuclein clusters with the hope they will be able to detect a pathway for early development of the disease. An exciting development, but they are only able to detect these in a post-mortem brain. This is not really helpful for those living with PD. It reminds me of when my father was diagnosed in the 1980’s and the doctors told him they felt he had Parkinson’s but couldn’t be sure until after he died so they could autopsy his brain for confirmation.

In the meantime, the only proven method of slowing this disease is exercise. Movement of any sort helps, the more the better. Funny since movement is often the thing PD targets first. Thankfully my husband has taken this advice to heart and tries to work out 6 days a week. He likes structured classes and does 2 days in-person plus 3 days on Zoom. We both go to the gym on Saturdays so he can get in some cycling. I think it is working for him because he was diagnosed 15 years ago and is still with me.

I am grateful for all of the research being done, but would like to see more of it directed towards reversing the effects. Until they do, I will keep encouraging him to do his exercises, keep taking him to his classes, keep going to the gym with him. It’s what I can now do to help him slow things down and preserve more of what we have. And with his focus on exercise, I’m also getting healthier. It’s a positive consequence for us both.

Be kind to your loved one with Parkinson’s, be even kinder to yourself because this is a shared diagnosis and it will impact your life too.

I woke up this morning and greeted my husband with a cheery “Welcome to Tuesday!” I went through a countdown of the month to determine it was Tuesday the fifth of August. Only once I had finished did my husband speak, “It’s actually Thursday”. We both had a good laugh and I then redid the morning recap and corrected it to Thursday the seventh. What a way to start my day!

That’s really just one way that his diagnosis of Parkinson’s has impacted both of us. I do the morning countdown to remind us because our days are no longer known by their names, it’s what we’re doing relative to his disease. Tuesday and Thursday are Boomerang days because that’s when and where he goes for movement classes. Monday and Wednesday are caregiver days and go by the names of whoever is coming to stay with him. Friday is either known as a support group day or named after his coach on zoom. Our lives seem to revolve around the interventions we have put in place to help us manage this disease.

As his symptoms progress, more adaptations to our lives come into play. It’s important to be mindful of the foods we eat and how they are prepared to make sure he can manage them. We modify our home, age-proofing it if you will. We don’t go out as much anymore and only to familiar locations that are easy to access. Old friends drop away when we can’t participate in the same activities anymore. Much of our time is spent doing what we must to get through the day and little on those things we actually want to do so hobbies for both of us tend to go by the wayside.

Getting back to my original premise, it is essential that I be kind not only to my husband but also to myself. I am living as a CarePartner without a roadmap on this journey uniquely based on his diagnosis and progression. Parkinson’s is changing my life in ways I never really expected so I accept, adapt, modify, endure and give myself a break when I feel angry or frustrated about what we are facing. I can only do so much and there will be moments when I feel it isn’t enough. That’s when I remember to be kind and forgiving to myself while making the best of the situation we have both been put in thanks to this disease.  

It’s necessary to have a support group for connection, advice and understanding, but remember that what works for someone else may not work in your journey with Parkinson’s.

I love the input I get from my support network. They always have stories about medications or adaptive tools that have worked for their loved ones. I can look to them for ideas on different challenges we face and know that they will share good information. It was from this group that I learned about Rock Steady Boxing, bidets, and transfer poles, all interventions that help make our daily activities easier. I even have members reach out to me with questions from time to time and I am flattered that they think of me as a resource. I always remind them that I can only speak from our experiences and that they really should consider anything I say as a suggestion not a solution.

Our journey with PD has been full of trial and error, or maybe more accurately hit and miss. We can’t really know if a pill or adaptive device is going to be helpful until my husband actually gives it a try. It doesn’t seem fair since we are all dealing with the same illness. When someone finds a medication that helps them or provides a healthy bowel routine, it should be transferable to everyone with the diagnosis. We should be able to share our knowledge and everyone within our network would benefit. Unfortunately, the pool has to be much larger than our local group of about 30 folks with the disease for any real similarities to show.

Just as everyone with Parkinson’s looks different, the way they respond to medications and the tools they find useful are going to be different. That’s why it is helpful for me to also maintain a relationship with his medical team. If my husband’s neurologist, physical therapist or PCP has tried this intervention with other patients, they may have a better handle on whether it might be useful for us. Combining the experiences of fellow CarePartners, who know about the daily life challenges of PD, with the knowledge of professionals who have studied this disease hopefully gives us the best chance of finding good interventions. Always remembering that it’s going to be 50-50 whether it will work for my husband.

Analyzing data submitted by current PD patients is giving researchers a clearer picture of the disease and may provide beneficial information for your journey.

I came across a report in Neuroscience News last week that talked about how the non-motor  symptoms of Parkinson’s appear to present differently based on which side of the body is impacted first. The study indicated that people whose motor symptoms started on the left side, like my husband, are more prone to depression and anxiety whereas patients who felt PD first on the right side reported more issues with cognitive decline and potential for dementia. Their work didn’t clarify how to know which of those patients would actually develop any cognitive challenges, it simply looked at historical data and found these relationships. Perhaps that will become clearer as they dig deeper.

There is a saying that when you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s. This report, coming out of the University of Geneva, looked at data collected in 80 studies and over 50 years and found that assertion may not be completely true. There are likenesses among PD patients, even though they may not always be obvious, and those similarities are going to help drive better treatments in the future.

I have always felt that Parkinson’s is a journey without a road map but, just maybe, these new reports will help us get there. The hope is that this information may be useful in creating more personalized treatment plans at an earlier point in the diagnosis. Even though my husband is at more advanced stages with his disease, this information shines a little light on where we have been and may be going and that may let us all know what to watch out for as we continue on our journey.  

This article was found in the Neuroscience News Newsletter dated July 7th, 2025. Click on the link but you may have to scroll down to find it.  

Being a CarePartner will be an educational journey as you learn more about the disease inflicting your loved one, develop new personal skills, and discover just how strong you truly are.

I am so tired of learning new things about Parkinson’s Disease, especially since the one thing I want to know, how to make it go away, isn’t available to me. I don’t want to learn more about fixing things around the house or taking care of my yard. I really feel like I’ve been pushed to my limits, I don’t want to have to be any stronger or more capable. I just want it all to stop and to have my husband back. That’s my whining done for the day, time to flip my perspective.

It’s time for me to figure out how to appreciate my new capabilities. There is some pride in fixing little things around the house myself and figuring ways to get bigger things done too. I find pleasure in the blueberries I am growing in our backyard. I may not enjoy all of my new skills, but they keep us going on a daily basis and there is personal satisfaction in that. Watching the man I married standing strong in spite of his diagnosis, reminds me that I must continue to be strong and capable for him.

I miss the life we had and the future we could have had. I regret conversations never shared, trips planned but never taken, all the opportunities Parkinson’s took away from us. Focusing on the losses gets me nowhere, I need to look for the gains. I feel that I have a solid knowledge base about this disease and about being a caregiver. I have become pretty competent at taking care of minor disasters around our home and property. I am more patient and compassionate than I ever thought I could be before he was diagnosed. Finally, I can be strong enough to continue this journey with him wherever it goes.

Getting to know the people in your support network for more than the Parkinson’s connection may prove to be beneficial as long as differences in values don’t derail a much needed relationship.

We were having a family dinner a while back and started discussing politics, something we mostly agree on. I shared that we have friends who don’t necessarily hold the same ideas in our PD network and it is interesting to consider how they come to their views. Someone said that they believe all of their friends are of the same mindset, that is the connection that brings them together. In that moment I discovered another reason to be thankful for my husband’s diagnosis. It broadens my world to include those who may not have the same philosophical beliefs yet who share a common enemy, Parkinson’s Disease.

This disease isn’t selective so the people in our Parkinson’s community come from all different lifestyles and backgrounds. It’s easy to discuss the common thread that brought us together which is our hatred of PD, it’s not so easy to talk about current events. I do think that topic could lead to some very interesting conversations. I wouldn’t want to see our different viewpoints split us up because I need these folks in my life. While I would like to know them better as individuals and let them know me, I’m not sure quite how to make that happen.

The greatest value of being a part of this community comes from our shared experiences. I can talk openly about challenges I face in caring for my husband and ask their advice with difficult decisions. It is great when I can pick their brain on practical issues as well. They often have knowledge that can help me with daily challenges outside the PD world. Maybe someday we can find a way to respectfully discuss our differences and, I suspect, agree to disagree. The support we give each other is based on values and compassion that go beyond thoughts of politics or religion. In this friendship, does the rest really matter?

Attending medical appointments with your loved one may lead to unexpected benefits for you.

I know that I have written about the importance of accompanying your Person with Parkinson’s to all of their appointments so you can be ready to support them in their journey, but I don’t think I have mentioned that it can actually lead to a better life for you. This happened recently for us when  I stumbled across a new treatment for things that had been troubling me for ages. Bowel issues are a constant in Parkinson’s and constipation is something I struggle with too, thanks to a faulty thyroid gland. I also learned recently that I inherited high cholesterol from my mother. At a recent visit with a member of my husband’s medical team, he was told to try Psyllium Fiber for his digestion. In my search for the best Psyllium options I found that not only is it good for him it is also good for what ails me. It has been proven to help with chronic constipation and lowers high cholesterol. So, we’re both using it daily with pretty good results so far.

In the past I have mentioned that my husband’s diagnosis encourages me to plan and cook healthier meals and to exercise more. We work to incorporate these into our daily life and it definitely makes a difference. A visit to get blood work done earlier this week also reminded both of us of the importance of hydration. The phlebotomist was having a difficult time drawing his blood and mentioned that it was really thick. We both ramped up our water consumption that same day.

It’s so easy to get caught up in the negative aspects of this disease but in the long run, which PD is turning out to be, we are both more health conscious than ever before. I know that I am aging better thanks to suggestions for him from his medical team. One thing I hope his doctors understand is that his care is dependent on my health. Whenever they can share something that is good for both of us it’s a real bonus. I need to remember to mention this and thank each of them for the support they give me at his next appointment. Perhaps they’ll do it more?

Sometimes unexpected symptoms of Parkinson’s appear to be weather related. Be sure to discuss any physical changes, no matter how minor they seem, with your medical team before treating them yourselves.

My husband has dealt with a perpetually runny nose forever thinking it was allergies. What we learned following his Parkinson’s diagnosis was that Rhinorrea, the medical term for excess clear nasal drainage, is three times more common in people with PD than it is in the general public. Additionally, studies have been conducted on PD and seasonal allergies and the jury is still out. Regardless of whether the drainage is caused by PD or pollen, it was annoying and needed to be treated. Thankfully his neurologist agreed and was able to prescribe a nasal spray helps some.

We could have gone to the drug store and picked up something off the shelf, but most over the counter medications warn against long term usage. One drug in particular, Diphenhydramine (Benadryl) is no longer used with those of us over 65 due to the possible connection to dementia. Many allergy medications list drowsiness as a possible side effect so we felt it was essential to ask my husband’s neurologist what she could recommend as a safe, long-term treatment for this condition.

My husband was prescribed a nasal spray called Ipratropium Bromide that he uses twice a day with some success. I am not mentioning this as a recommendation, but as a potential question you could take to your medical team. Being an old fashioned guy, he also carries a handkerchief in his pocket at all times to catch those drips. Unfortunately we have had to accept that runny nose is just another component of his journey with Parkinson’s.                                                          

For more on runny noses see this fact sheet on the APDA website uncommon-non-motor-symptoms-of-pd and to read more about studies regarding seasonal allergies visit Quality of life: Seasonal fluctuation in Parkinson’s disease – PMC (nih.gov).

Most CarePartners are well aware of Bradykinesia, the physical slowness that accompanies a Parkinson’s diagnosis. It is important to understand the effects of Bradyphrenia, slowness in brain processes, too.

Those Brady twins, as I have come to think of them, are the bane of this Parkinson’s CarePartner’s existence. They work hand in hand to slow down everything my husband tries to do. It is no wonder that he feels exhausted when he is having to consciously work with his brain and body to do activities that were once automatic. He pushes back on the physical challenges by exercising. Staying active has helped him slow the progression of symptoms and gives him some semblance of control of his body. We can only hope that this activity also helps speed up the processing centers of his brain, but it’s much more difficult to gauge.

One of the questions his neurologist asks is whether he can do complicated or multi-step tasks and the answer is no. He used to be able to handle multiple challenges easily, but now has to have directions broken down into smaller steps. It isn’t that he doesn’t have the capability, it’s that his brain must work through each step and send instructions to his body before moving on. It becomes a difficult and tedious problem for both of us as I try to help him and often just make things worse.

I am learning to practice patience and step away so he can complete things in his own way and his own time. I am learning to ask single questions and wait for his response before adding to the conversation. I am learning to let him know when we need to hurry and ask if I can help or take over a particular task to get it done. I am trying to be respectful of the man who is trapped in a body that becomes more difficult for him to manage every day thanks to Mr. Parkinson and those darn Brady twins.

Parkinson’s will progress differently for everyone who has it.

Just as this illness presents differently, the symptoms will progress differently. For my father, it was a quick process into dementia and delirium accompanied by freezing and stiffness, he never presented with much of a tremor at all. My husband, on the other hand, is not showing dementia or cognitive challenges other than a slowing of his processing skills, but his tremors became unmanageable early and are only controlled with deep brain stimulation and medication. Since he is not showing any signs of dementia, a friend recently commented that he was doing so well. She was surprised when I said that I agreed especially as he is in the advanced stages of his journey. I think she questioned my judgement because, as she put it, “he still has all his faculties”. My response was that he would probably be one of those people with Parkinson’s who would die with all his faculties, it’s just how the disease is presenting for us.

There are two basic scales for determining where someone is on their journey with Parkinson’s. The first is the Hoehn and Yahr, developed in the 1960s and used to evaluate physical symptoms. It didn’t take into the account the cognitive or mental challenges many People with PD faced. In the 1980s, a new scale was designed utilizing this format to evaluate movement, but adding components that test the mental and mood changes that are taking place. Called the Unified Parkinson’s Disease Rating Scale (UPDRS), it is the one used most these days because it gives a more complete picture of progression.

At any rate, it doesn’t really matter where we are in this journey. My husband most often seems to be in stage 4 to 5 which is the highest range. On his good days, he may even appear to be back in level 3, but I know it won’t stay that way. The day is coming when, thanks to the great research being done in this arena, a medical team will be able to pinpoint where my husband is currently and where he is headed. I’m not sure that would be better, I think I like the uncertainty. It allows space for hope, dreams and imagination, something I would lose if I knew exactly what we were in for next.