Exclusive: What I Tell All My Patients with Parkinson’s

You’ve been diagnosed with Parkinson’s, and may still be coming to terms with this diagnosis. On one hand, you may be relieved to finally have an explanation for the symptoms you’re experiencing. On the other hand, you may be thinking to yourself: Now what? Who helps people with Parkinson’s? The latter is a great question and leads to the big reveal of what I tell all my patients with Parkinson’s:

Build. Your. Team.

There are many different professionals that support people with Parkinson’s. Living with this progressive condition calls for a team approach. On the team you are at the helm, leading the whole thing. At least that is my opinion because it’s your body, your health, your journey– so you call the shots. You are also at the center of this team. By this I mean that you should feel surrounded and embraced by a care team you trust. Who is involved in Parkinson’s care? Well, your care team could be at a multi-disciplinary movement disorders clinic, or it can be built á la carte. It’s going to depend on what is available in the area you reside, your preferences and your insurance coverage.

Let’s jump into the discussion: Who is on the multidisciplinary team for Parkinson’s?

Neurologist or Movement Disorders Specialist

A neurologist diagnoses your Parkinson’s, monitors disease progression, prescribes medications and other interventions to manage your symptoms. You will follow this doctor over time, and together with your feedback the neurologist will make adjustments to your medicine as needed.

Primary Care Physician or Geriatrician

Even if you are being followed by a neurologist, you still need your regular doctor to. If you’re a senior, I’d recommend looking for a geriatrician. Your primary care physician is the one to see for regular checkups, typical health concerns and to help with some of the secondary symptoms that come with Parkinson’s (such as constipation).

Speech Language Pathologist

Parkinson’s can change your voice and make your speech hard to understand. It affects your ability to swallow food, drinks and medications. It can also decrease your memory and other thinking skills. All of these areas are addressed by a speech language pathologist, also called a speech therapist.

Bright Speech is a private practice in Missouri City, TX serving the greater Houston Metro. We have a certified LSVT Loud provider and expertise with respiratory muscle strength training using the EMST150 or EMST75 device. These are just a couple of the research supported treatments available to you. They can help your voice, speech clarity, strength of your cough and swallowing safety.

Occupational Therapist

Living with Parkinson’s can mean learning to use new adaptive equipment to help you complete daily tasks like getting dressed and feeding yourself. An occupational therapist helps in this area, as well as in assessing your home environment to optimize it for safety.

Physical Therapist

Research has shown us that exercise can help slow the progression of Parkinson’s. A physical therapist specializing in neurological rehabilitation can help find the ideal exercise program for you. They also help with your mobility in general, which refers to your ability to walk around with or without devices like a cane or walker. LSVT Big is a treatment that can be offered by a physical therapist to help with your movement.

Registered Dietitian

You may not initially think about having a dietitian on your team, but their role in adequate nutrition is paramount. A registered dietitian has advanced education and expertise in understanding the nutritional needs we have, particularly in the case of having a diagnosis like Parkinson’s. They can collaborate with a speech pathologist to help keep you nourished via the food, liquid, supplemental or tube feeding diet you may need.

Social Worker or Case Manager

Sometimes, you simply don’t know what you don’t know. A social worker is key for directing you to key resources in your community that can support your life with Parkinson’s. This may mean finding transportation services to appointments if you no longer drive, or locating a mental health provider if depression or anxiousness arises.

Pharmacist

A pharmacist has a key role in helping you to understand your medications. It’s important to pick one pharmacy so that you have a central place where you obtain your prescriptions, and can more easily have a pharmacist stay on top of the different medications you’ve been prescribed. If you have trouble taking certain medications, they can help recommend a different formulation, or advise you on whether the pill is appropriate to cut, crush, mix with other foods, etc.

This may seem like a daunting list of providers. Perhaps you wonder if you’ll even remember who does what and when/why you might need them. One way that I would like to ease your burden of putting together a care team for Parkinson’s is by sharing a free contact sheet with you. Use this form to organize your providers’ information. You can access it here, for free! I recommend printing it out, filling it in as neatly as you can, and perhaps keeping it in a folder or clear sleeve in between use.

When you need to schedule an appointment, you can simply refer back to your contact list and easily find the provider that you need. When you’re at an appointment and have to complete intake documents, you can reference the contact information as needed to help you fill out those forms.

Any questions about building your team? I’m here to help. Feel free to email me at your convenience.