parkinsons-disease

Give yourself permission to have a bad day but not to take it out on your partner. Talk with them when you’re feeling low so they know it’s not about them.

Some days are going to be tougher than others, it’s just the way things are and would be that way even if I wasn’t a Parkinson’s CarePartner. However, being on this journey does complicate my life when I’m having those low days because I still need to be present and do the best I can for my husband. And there’s the key, understanding that my best may not always look the same. On a day when I am tired or struggling to keep up, I need to remember I am still doing my best in that moment and accept that it’s okay if I don’t get as much done.

It is especially helpful for me to tell my husband how I’m feeling rather than simply be quiet or cranky because I’m not at 100 percent. I may say something like, today we’re going out for dinner because I just don’t have the energy to cook. Or maybe I tell him that I need some time alone, I’ll be in the back for a while please don’t call unless you really need me. I have a friend who simply tells her husband she needs a day off and then takes it.

My husband never asked for this diagnosis and he never expected he would have to depend on me for so much support. When I’m having a tough day it is vital that I remember this. He often recognizes better than I do when I need to rest. He will be okay if I’m not the one who does everything that needs to be done every day. Or if somedays, things simply don’t happen. He just needs to know what’s going on with me so he doesn’t think it’s all his fault.

The road ahead with Parkinson’s is uncertain and challenging. Having conversations about possible upcoming decisions can smooth the pathway later when they become real.

Looking back on our early years, I was not sure what to expect after we received this diagnosis. My father was diagnosed with Parkinson’s way back when so I thought I had a clue. I was so wrong. Our journey, my husband’s presentation of the disease, has been completely different from what my father faced. What I did know, however, was how ugly it could be and we talked some about that. I had watched my parent’s struggle and wanted better for us. Thankfully, our relationship was already based on regular communication and weekly check-ins so discussing his PD was folded into those conversations.

We discussed how his tremor and stiffness might impact his driving before it became an issue, always focusing on the physical ramifications of this illness. When it came time, it was an easier decision for him to stop driving because we had talked about safety concerns and alternatives. When he needed to stop climbing ladders, cooking, using electric tools, he was open to these limitations because we had already discussed them. Safety and the restrictions of his Parkinson’s Disease were always the reasons, never personal deficiencies. He was not to blame for the challenges we were facing.

Our latest conversations are around how to make sure he is receiving the care he needs. What will happen if we reach the stage where I am not able to care for him or, heaven forbid, if being at home is not the safest option? Parkinson’s Disease brings difficult decisions for both of us. Talking about them before actually having to make them puts us on the same page. It also lets me know what he wants moving forward as well as gives me permission to make those decisions alone should that time come.

Sometimes it’s okay to take a chance to see what works for you and your loved one. You may be surprised by the results.

I had convinced myself that my husband couldn’t be safe on his own. If I had to leave him at home alone, I worried every moment I was away that something was going to happen and I’d come back to find him on the floor or paramedics at our door. At the same time, I was feeling frustrated by being tied to the house when I have things that I need or want to do because I was so certain he needed this constant supervision.

It came to a head recently when he told me straight up that he can be okay on his own. In his opinion, I was underestimating his ability to care for himself. We talked about what it might look like for me to go out for an hour or two and gave it a try this past week. I scheduled a couple of outings for myself at times when he would normally be resting and both went really well. Now I feel like a fool because I have been so protective and so careful that I let his diagnosis completely take over my life too.

This doesn’t mean that I am going to be leaving him for extended periods or that we are going to cancel our in-home care. It does means that with mindful scheduling and the understanding it might need to change, I can get out and do some of the things I have been putting off. I can have a life of my own without taking away from caring for my husband and our home. As a matter of fact, it may be good for both of us to have a break from my constant presence (and nagging) to refresh our relationship. On days when he feels he can be safe and is able to manage, I think getting away may be a good addition to my CarePartner routine.

Please note- my situation is not yours and I would never suggest you try what works for me because it may not be safe for you and your loved one. Always make choices based on what is best and safest in your home.

Stay abreast of advances in treatment, you never know when they might be beneficial for your loved one.

When my father had Parkinson’s 40 years ago, we didn’t hear much about research. The only time my mother was approached about it was after his death when a local medical school asked if they could autopsy his brain for research purposes. Of course she said yes. My husband and I, on the other hand, have been watching and participating in research ever since his diagnosis nearly 16 years ago. There have been many exciting changes in detection and even some in treatment of this disease and a few have actually impacted our journey.

It started with my husband participating in a couple of medication trials. His symptoms were recorded and then progression was tracked for years through other studies. I have occassionally been able to take part as part of a non-PD control group. We have seen medications developed to help slow the progression of his disease, we have seen gene therapies and tests developed that can detect the illness before symptoms even show. We have seen more effective and easier ways to deliver carbidopa levodopa, the basic treatment for most Parkinson’s patients. My husband’s new controller for his deep brain stimulator has the capability of adapting delivery to need based on biofeedback it can gather from sensors in his brain. We aren’t using that feature yet but maybe in the future?

Much of this research is driven and funded by individuals who were diagnosed themselves. Perhaps that is why things are happening, the people who are in charge understand PD challenges because they are living it. Whereas federal interest in funding can come and go with elections, the foundations created by people like Mohammed Ali, Michael J Fox, and Davis Phinney to name just a few, keep doing the work for all of us. I am sorry that these people were afflicted with this disease, but will forever be grateful for their contributions to finding treatments and, hopefully, one day a cure.

Knowing when and how to treat your loved one with Parkinson’s for a non-Parkinson’s condition can be tricky.

We have been dealing with chest colds at our house That means congestion, coughing, and feeling pretty lousy over-all. Neither of us developed a fever so it doesn’t appear to be anything more serious. We tested for covid early in the process and those were negative. To care for ourselves, we’ve been resting and hydrating. I researched Parkinson’s websites to find safe over the counter solutions for chest colds and found guaifenesin for congestion. We are both drinking lots of hot tea and using acetaminophen for body aches. It’s taking a while but we do seem to be showing signs of recovery.

Should we have gone to the ER or Urgent Care? That’s a difficult and personal decision. I know from past experiences, trips to the ER can be more damaging than helpful. And, I anticipate that the only advice they would give us after waiting hours in an unhealthy environment would be “go home, rest and hydrate”. Exactly what we are already doing. They could possibly provide us with a more definitive diagnosis, but does it really matter if it’s a chest cold or bronchitis? Both are treated in the same manner. Heaven forbid they would want to keep either of us in the hospital, I have seen too many of our friends go in with congestion and not come home.

My gauge on whether to seek further treatment is based on something I learned as a young mother. When I see lots of blood, broken bones, fevers, difficulty breathing or unconscious, we head straight to the ER. Falls that we can’t get up from, I call 911 for assistance. Otherwise, I do my best to provide home care and PD safe OTC remedies. Chicken soup and love are still the best cold treatments I have ever found.

Click “What Cold Medicine can I take with Parkinson’s” to see the article I found that talked about safe cold meds for people with PD.

It’s okay to get angry and to express your anger as long as it is positive and directed at the right target.

By target I actually mean the real reason you are angry or the problem that is causing the anger. I’ve said this before, it is okay to be angry at Parkinson’s for the challenges we face, it’s not okay to be angry at my husband for things he can’t do anything about. However there are things that happen within that dynamic that make me angry, things he does have control over. I need to be able to express those feelings or they will eat away at me.

My husband will not accept assistance with certain daily tasks unless it comes from me. I get it, he’s embarrassed or uncomfortable when asking for help. But…and this is a big one…that help is often exactly what I need. Our caregiver is trained and ready to help wherever it is needed. When all she gets to do for him is stand by, it becomes less a caregiver role and more of a babysitter role. As soon as she leaves at the end of her shift suddenly he needs the toilet or he needs a snack or he needs something else. I get angry at him when he won’t accept help that is here and waiting for him.

A quick example, it was less than 10 minutes after our caregiver left the other day when my husband called for help in the bathroom. I was in the kitchen starting dinner prep. The disease may be why he needs the help but he does have some control over the timing. I have to admit that I shouted a bit, I was angry and really needed to let it out. Plus I needed for him to understand that this was a big issue for me. I think I accomplished both of those things, we’ll see if it makes any difference.

Don’t downplay the challenges you are facing as a CarePartner. Your journey is just as difficult as that of your loved one.

When I started writing this blog almost six years ago, I wanted to share what I was facing as a PD CarePartner and perhaps be able to figure some of it out. What I am saying is that if you are reading this hoping to find answers for your loved one, you can stop now. However, if you are looking for what you might face on your journey loving someone with Parkinson’s Disease, read on and I hope you find my words helpful. Because the diagnosis your partner received will impact the relationship you share and will change your life forever.

My husband has a group of medical professionals who are all focused on keeping him healthy. I think that is great but wish that, just once, one of them would turn to me and say “how are you doing?” They ask for my perspective on him but never check in on me. They watch for anxiety and depression in my husband but no one is looking to see whether I am okay. Let’s face it, having the person I love taken away a little more every day is a classic situation for me to be anxious and/or depressed. It’s like his doctors see me as a therapeutic tool or aide, not a person with feelings of my own.

Yes, my husband is the one having to fight the symptoms on a constant basis yet I am the one who has to stand by and watch. I have to be ready to step in whenever I am needed. I am in a constant state of alert just in case something happens. Add to that the additional chores around the house that I find myself responsible for now. My life has been upended as much as his. So, I don’t feel guilty for resenting the changes this disease has brought to our lives and I don’t dismiss my pain and loss.  My story, all of our stories as Caring Partners matter too.

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.

Worry, anxiety, anticipation can be as exhausting as physical activities. Find ways to give yourself a break from these stressors.

I look back at my day and wonder why I’m so tired. I don’t recall doing anything that was physically taxing yet I feel like I’ve run a marathon. It was a day when we didn’t have any outside help, could that be the reason for my complete exhaustion? My husband was having a low energy day so I was more on alert than usual, watching him to make sure he was okay, perhaps that has something to do with it all?

Taking a break on those worry filled days would be great, but how? Most importantly I need to recognize what’s  happening. Too often I am so caught up in the moment that I can’t see the bigger picture. Taking a break has to start by simply taking that break. Give myself a moment to think about what’s going on. If my husband is having a tough day, is there anything more I can do to make it better for him? The answer is usually no. Next I need to ask if there’s anything I can do to make the day better for myself. That answer is usually yes and involves either taking a walk, sitting with a good book, or maybe just some deep breathing. Whatever will help me break the cycle of stress and anxiety. Once that’s done I can get on with my day and let him be.

It may sound self-centered, but unless I am willing to actively put my needs first, I am not able to be here fully for my husband. I know that I have said this before, yet sometimes I forget that my mental and physical health is more important to the dynamic of our journey than his. My husband is on this PD trajectory and, while we can’t control it, we can work together to fight it. My worry, anxiety, and anticipation of what is going to go wrong next are stressors that negatively impact our lives and are things I can control. In order to be here alongside him, I must take care of me. It’s not selfish, simply a fact of my life as a Parkinson’s CarePartner.

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.