Parkinson’s Disease

The search of a lifetime.

Ten things for the newly diagnosed

You have recently been diagnosed with the onset of Parkinson’s Disease. I wish I could start with a joke, but there is nothing funny about PD, although I have found that having a healthy sense of humor helps while traveling through the meandering path each Parkinson’s patient faces. The diagnosis can impact people differently. There are those that don’t believe the diagnosis, particularly those diagnosed with young onset Parkinson’s. And it could be that the diagnosis is wrong. Time tells the truth. I fought the idea I had Parkinson’s for two years (diagnosed at 40). I wish I could have those two years back because I could have made adjustments that would have benefited me greatly. And there was no downside to steps I could have taken.

There are also those who become super depressed, those that become obsessed by it, others who become fierce advocates. And then there are those who take it as the end of their life, which a diagnosis certainly is not. For me, while I didn’t believe the diagnosis I started taking Sinemet (L-Dopa) and it helped, which back then was the proof most doctors looked for. And I’m still here, playing pool and golf and doing things I thought would not be possible by this time. After 20 years of PD I am still functioning far better than the expectations of my doctors, therapists, family and friends and myself.

That’s not to say it has been easy. Parkinson’s over time has taken a lot from me: My job, sports, drivers license, mobility and cognitive function. But I will quickly follow up with pointing out that this has happened over 20 years, not all at once. And each patient travels their own path, no two diagnosed are the same.

So I can only offer you what my path has shown me, but I don’t think I’m too far off what the generic experience for most is like. I also will tell you that in the past 20 years there have been significant discoveries in medicine and technology developed for PD patients, and there are many new ones showing advances for the future. So with all this said, here are some things I would say would be helpful advice to a newly diagnosed patient, but again I’m not a medical professional, just a patient with 20+ years of personal experience.

Read as much as you can and educate yourself. There is an endless supply of resources for PD patients. Books, podcasts, medical journals, studies, websites and websites (PDF.org, michaeljfox.org). The more you know the better you can have informed discussions with your medical team about treatment options, studies you can participate in, and technology available to you. Your family and caregivers should do the same. While I encourage you to do all this I want to again stress these symptoms and phases happen over time, and may or may not come about. None of it happens all at once. The newly diagnosed can easily fall into a rabbit hole of despair. No need to at this stage.
Find a neurologist that has the bedside style that works for you and is knowledgeable about Parkinson’s Disease. If you can’t connect with the doctor your treatment will suffer if for no other reason lack of communication. Equally important is your Neurologist has at a minimum an affiliation with a major hospital with a movement disorder clinic. Mass General Brigham, Lahey, Beth Israel and many more all have movement disorder departments and surgical teams well versed in the latest technologies.
Exercise. Exercise Exercise. And again, and again. There are plenty of studies out there that show that patients who exercise have slower progression of the disease than those that do not. Find activities you enjoy and do them frequently.
Develop a team. In addition to your neurologist and your primary care physician you at some point may want the services of a Physical therapist, Occupational therapist , Speech and Cognitive therapist, and an Emotional therapist (talk therapy). All these should be certified in treating Parkinson’s Disease or you will find they are limited in what they can do for you. While early on you may not need all these services, when (or if) you need them you will benefit by having these individuals in place with no long waits. I do at a minimum a tune up series of PT and OT very 12-18 months. An emotional therapist (or life coach, whatever you want to call it)) is very hard to find these days in our national crisis of mental health. Find one that you can identify with and nurture that relationship for when you really need them. It took me two years to find mine and I am thankful I did. She quite literally saved my life. More than once.
Find a support group. You and your caregiver may find them both helpful and a resource. I only caution you on not letting their stories overwhelm you. Their experiences may or may not be those of your own.
Confide in your family and friends you trust. No matter how manageable your current symptoms are, sooner or later you may not be able to hide them. Most of these people will WANT to help you. In fact they will be hurt if you don’t tell them sooner. This way you can spread the wealth around and not over burden (a term I’m growing to dislike) any one individual. Most patients have a spouse who ends up being the primary caregiver. Nurture them. Do things they will find helpful. You may not be so hot on going to a support group but your spouse/partner may find it of immense help. Of utmost importance is giving them their own downtime and space to live. Being a caregiver is not easy.
Align yourself with a Parkinson’s friendly diet, and make sure it also is aligned with your medication regimen. Timing of your meds may not align with your diet. Get them in tune. Consult with a dietitian, most hospitals have one that will be eager to answer your questions. Timing of your medications is important. Take them as prescribed,
Be open minded on technological and other advances. For the first years of my diagnosis I was adamantly opposed to getting Deep Brain stimulators. By the time I did get them I was taking meds every hour to keep functioning and was miserable, after DBS I was down to one pill in the morning doing the things I liked to do. However the technology realistically gets a patient back to a longer period of the best their functioning is at that time. The longer a patient waits the lower their best functioning is. I was late in understanding this. However I now have two (a DBS for Parkinson’s and an EST for related dystonia) and they are the reason I’m still functioning like I am.
Telling your employer is tricky. On the one hand patients worry that disclosing they have Parkinson’s will have people treat them differently, be overlooked for promotions and opportunities or even cost them their job. Any of these may be true. On the other hand people can jump to conclusions. I fiercely covered up my Parkinson’s for a long time until I realized people were making assumptions that my slurred speech and movement issues were because of a drug or alcohol addiction. Choose the labels you want.
Concerns about health insurance are valid (and expensive). For myself and family we have always invested in the maximum health insurance and it has been so worth it. As we are now advancing into the Medicare phase of life we voiced our concerns about this and my neurologist tells us that she has not seen that as a problem with her patients. She is no nonsense and has always been a straight shooter so we are trusting her opinion.

I am sure there are other topics I’m not thinking about but I think this is more than enough for now, maybe too much. So remember all of this doesn’t happen in one day or one year or if at all. However, a last word about staying safe. You will at some point have balance issues and or slower movements. You need to be aware of this and take steps to protect yourself. This can take an enormous amount of swallowing pride. Remember your condition doesn’t only affect you. Your caregiver will have to deal with you if you get hurt and your family and friends will worry about you. So if balance issues cause you the need to use a cane or crutch, use it. Be self aware when using stairs. Stay off ladders. See your OT and PT for adjustments to make.

I speak of these as someone with experience. I have suffered many concussions because of Parkinson’s related falls, two put me into the hospital for eight weeks each and have caused permanent impairment. After the last one I fell into long term deep depression that has put me in the hospital for long term psychiatric care. The frustrating thing is all this could have been avoided.

I wish you the best on your journey. You may be surprised at how your view of life changes. Rather than focusing on the negative, look at how important you find the people around you are, and how much fun it can be to make time to be with them. New activities and even travel can be just as, if not more, enjoyable. Simplifying life is often the more enjoyable. As I begin rolling out this website, blog or paper, whatever it becomes, I will focus on these and so much more.

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