Your Questions Answered on Tremor, Prognosis & More

On a recent episode of APDA’s Dr. Gilbert Hosts, Dr. Drew Falconer joined me to answer your questions about Parkinson’s disease (PD). We covered a lot of ground during the broadcast and answered many questions from the audience.

It was a very informative conversation, and we encourage you to watch the full broadcast of Dr. Gilbert Hosts: Ask the Doctors Anything! You’ll see that the episode is time-stamped for your convenience.

But there were many questions that we did not have time to answer. In our recent blog: Parkinson’s and Nutrition, Exercise & Physical Therapy: Your questions answered!, I answered some of the additional audience questions related to nutrition, exercise and physical therapy.

In this blog, we will answer questions about tremor and motor symptoms, as well as prognosis and disease progression. Keep an eye out for future blogs in which we will get to your questions about medications, testing for PD, deep brain stimulation, and more.

Tremor & Parkinson’s Disease

Q. Can essential tremor progress to Parkinson’s disease (PD)?

A. Usually, these two disorders are quite distinct, and one does not lead to the other. A neurologist can distinguish between these two conditions based on neurologic exam. In some people however, the symptoms can overlap, and the diagnosis is not clear. In those cases, a DaTscan, which is an imaging test of the dopamine system, may be helpful in figuring out the diagnosis.

Q. I only have rest tremor and no other symptoms of PD, could this still be PD?

A. To meet criteria for Parkinson’s disease you need other symptoms besides rest tremor. I would recommend a visit with a neurologist who will do a complete neurologic exam to determine if you have other symptoms of PD that perhaps are too subtle for you to notice. However, rest tremor is seen in virtually no other illness besides PD, so if a neurologist sees rest tremor, even without any other symptoms, they will be concerned that PD is developing.

Q. My husband has tremor-predominant PD. Medication is not that effective. Is there anything we can try that is less invasive than DBS?

A. For many people, PD medications suppress tremor. However, for a significant minority of patients, medications may be effective for the slowness and stiffness of PD but are not effective at controlling the tremor. For those people, deep brain stimulation (DBS) can be very effective at suppressing tremor.

If DBS is not something you want to explore at this time, there are some wearable devices that have been designed to suppress tremor that may be worth a try.

Focused ultrasound (FUS) is a procedure in which beams of ultrasound waves are focused on a designated target in the body, thereby concentrating enough energy to create a small lesion. Individual ultrasound waves do not contain enough energy to do damage as they pass through the body’s tissue, but when multiple ultrasound waves are all focused on a particular spot, a lesion is formed. Performing FUS which targets a particular part of the thalamus in the brain can be very effective at treating tremor. Although a lesion is created in the brain, FUS does not involve standard surgical risks, so it might be something you would be more willing to explore. You can read more about FUS in our article Focused Ultrasound for Parkinson’s disease which also addresses how to choose between FUS and DBS.

Motor Symptoms of Parkinson’s

Q. Do you have any advice for toe curling?

A. Toe curling is likely a form of dystonia, in which there are involuntary and repetitive muscle movements that cause a part of the body to twist or assume a particular posture. Various body parts can be affected by dystonia in Parkinson’s, including the toes or foot. It is important to work out how the timing of the dystonia relates to medications doses, since it is possible that the dystonia comes on when there is too much or too little dopamine in the brain. If the dystonia seems to occur at the end of a dose, then it is likely due to too little dopamine. If it seems to occur in the middle of a dose, then it is likely due to too much dopamine. Depending on what the relationship is between medication doses and the dystonia, your neurologist may adjust your medication to help the dystonia.

Other possible treatments for dystonia to consider include:

1. Botulinum toxin injections of the affected muscles
2. Physical therapy to loosen and strengthen the dystonic body part
3. Trying other medications that target the dystonia directly such as muscle relaxants or anti-cholinergic medications
4. Deep brain stimulation can be considered in difficult-to-treat situations

Q. I am particularly stiff in the late evening. How can I remedy this?

A. Typically, stiffness in PD is a sign that you do not have enough medication in your system. It is possible that you are stiff at the end of the day because your doctor has advised you to take your doses when you are active, and at the end of the day you are left with little dopamine in your system. Talk with your doctor about whether you need more medication to get you through the evening.

Q. What medication can help with leg spasms?

A. This very much depends on what exactly you are experiencing that you are calling leg spasms. Muscle cramps are common in PD as well as the general population. They occur when lying down on your way to sleep or when you wake up in the morning and usually involve the calf muscles. When you first feel them coming on, best to get out of bed as quickly as possible and stand on the leg. This flexes the ankle and can abort the cramp. Sometimes these cramps are related to electrolyte imbalances. You can try a banana before bed and/or Gatorade to help replenish your electrolytes. Sometimes a magnesium supplement can help – ask your doctor whether you can take this before you try it.

You may also be describing dystonia (discussed in question 1 in this section), which is a twisting sensation at the toes or ankle, which is more likely to respond to changes in your carbidopa/levodopa dosing or other treatments as outlined above.

Q. Does TENS help with stiffness, muscle pain, rigidity?

A. Transcutaneous electrical nerve stimulation (TENS) is a non-invasive treatment in which surface electrodes are applied to the skin and a mild electrical current is generated across them. There have been numerous clinical trials of TENS for a variety of medical conditions including pain and spasticity. Although the results of clinical trials are generally mixed, since TENS is a non-invasive treatment with minimal side effects, it continues to be used extensively. There have not been clinical trials that have demonstrated the effect of TENS for the muscle pain, stiffness or rigidity specifically associated with PD. Interestingly, there were two recent clinical trials for TENS in PD, one studying the effects of TENS on bladder function and the other on sleep function.

Prognosis and Parkinson’s Progression

Q. What is the average number of years of disease progression? Does the progression change if diagnosed at an early stage?

A. People with PD reasonably want to know how fast their disease will progress over time. Unfortunately, it is nearly impossible to predict how any individual person’s PD will evolve, and neurologists often refrain from answering these questions.

Although we do not yet have a neuroprotective medication that can improve the progression of PD, there are very important elements that are in your power to control, including physical exercise, healthy diet, and other lifestyle choices. It is never too late to make positive lifestyle changes. Even small changes and adjustments can have a beneficial impact. Therefore, diagnosing PD at an early stage might change progression if you use the diagnosis as an opportunity to live a healthier life.  

Q. As I age, I am worried about how to approach the future. I am living on social security and a pension. How do I pay for my Parkinson’s care as I get older?

A. This is a complex topic, and APDA has compiled resources related to disability insurance that can help you understand your options.

Besides disability insurance, the two other ways to pay for care as you get older are independent wealth and Medicaid. You may very well be eligible for Medicaid. Ask your neurologist for a referral to a social worker who can help you get this process started. You can read more about navigating the future in this article: Navigating the Future with Advanced Parkinson’s Disease.

Q. I have young onset PD (YOPD). How do I plan for the time when I won’t be able to work anymore?

A. This is a serious concern of many people with PD, especially those who are diagnosed young. Hopefully, you have many productive years of work ahead of you. Our article on Continuing to Work with Parkinson’s Disease can help you navigate some of the important issues regarding employment and PD.

But it is certainly possible that you will need to stop working before your peers who do not have PD. If you are lucky enough to have long term care insurance through your current employer, that will become very helpful if your condition leads you to stop working. There are other avenues to access disability insurance which are discussed under Disability Benefits.

Learn more about Young Onset (also commonly referred to as Early Onset) Parkinson’s disease

Q. How do I know what stage of PD I am in?

A. As mentioned above, it is very hard to predict how any individual person’s PD will evolve. To quantify disease progression there is a commonly referenced staging scale. However, it does have significant drawbacks.

The  Hoehn and Yahr scale was developed by Drs. Margaret Hoehn and Melvin Yahr in 1967:

• Stage I – symptoms involve one side of the body
• Stage 2 – symptoms involve both sides of the body, or the midline (that is, symptoms affect structures in the middle of the body such as speech abnormalities)
• Stage 3 – symptoms involve both sides of the body, with impairment of balance
• Stage 4 – symptoms have advanced to the point that although the person can stand and walk without the help of another person, he/she has significant disability. People in this stage typically need at least some help to perform their activities of daily living, or self-care activities such as eating, bathing, dressing and toileting.
• Stage 5 – the person cannot stand or walk without the help of another person

As you can see, the Hoehn and Yahr scale focuses solely on motor symptoms and does not consider the psychiatric, cognitive, and autonomic non-motor symptoms that often cause more disability than motor symptoms as PD advances. For example, someone may be a stage 3 on this scale, but have as many difficulties as someone who is stage 4 because of dysregulated blood pressure control or a mood disorder. Unfortunately, scales have not been developed to also quantify the non-motor symptoms and therefore figuring out what stage of PD correlates with what level of actual disability is not straightforward.

In addition, there is no set timeline to how a person progresses through the Hoehn and Yahr stages. For example, many people stay at Stage 2 for a very long time, perhaps decades. Many never progress beyond Stage 3. They may develop other health issues as they age which become more prominent than PD. Therefore, although it is very understandable for people with PD to want to know what to expect in the future, in many cases, it is simply not possible to provide this information accurately.

Q. Has anyone broken down Parkinson’s into sub-categories to determine if a particular disease presentation is linked to a particular prognosis or rate of progression?

A. Yes, there have been research studies linking certain PD characteristics with different rates of disease progression. You can read more about Tremor-Predominant, Rigidity/Hypokinesia, and other subtypes within our article: What factors can predict Parkinson’s disease progression?

Q. If a person has specific pre-motor symptoms, can you be certain that they will develop Parkinson’s disease?

A. Certain non-motor symptoms of PD can precede motor symptoms, such as rest tremor, sometimes by decades. There are specific non-motor symptoms that are the most likely to appear early. These include loss of smell, constipation, sleep disorders (specifically rapid eye movement behavior sleep disorder (RBD), and depression. The tricky thing is, these four symptoms are relatively common in the population at large and therefore screening for these symptoms (for example in a primary care setting), to identify people who are at risk for developing PD will invariably capture more people than necessary and create much needless worry. However, once motor symptoms develop, it is incredibly common for people with PD to look back and be able to identify a non-motor symptom that was present first. For this reason, these early non-motor PD symptoms are also referred to as pre-motor PD.

If a person has loss of smell, constipation, RBD, and depression without motor symptoms, it is not unreasonable to make an appointment with a neurologist to determine if the person has any motor symptoms of PD that they may not even have identified that would confirm a diagnosis of PD. It is important to note that if a person has pre-motor symptoms, it means that the risk of developing PD is higher than the general population. It does not mean that the person will develop PD.

Currently, there are research efforts designed to develop clinical trials aimed at those with pre-motor PD and others who are at risk of developing PD. These clinical trials would potentially test medications or other therapies to determine if this reduces the chance of developing PD in the at-risk population.

Q. Is PD affected by a COVID diagnosis?

A. There have been several papers in the literature demonstrating that people with PD who contract COVID-19 often report new or worsening motor and/or non-motor symptoms in the setting of their illness. This is not surprising, since worsening of PD symptoms often occurs during an intercurrent illness of any type. Recovery after COVID-19 has not been studied as carefully. However, it is the experience of clinicians that if a worsening in PD occurs due to an intercurrent illness, the decline will improve as the intercurrent illness improves. This appears to hold true for COVID as well. You can learn more about COVID and PD in our 2023 Covid-19 and Parkinson’s Update

Q. Is PD fatal?

A. PD is not a fatal disease per se, and end-of-life often occurs at an old age from another medical illness entirely. However, there are symptoms of advanced PD that increase the risk of dying. These include poor balance/tendency to falling, poor swallow, immobility, and frailty. You can read more about the risk of death in PD in our article End-Stage Parkinson’s Disease & Risk of Death.

Tips and Takeaways

• The questions in this blog were asked during a recent episode of Dr. Gilbert Hosts: Ask the Doctors Anything. We encourage you to watch the full episode as we covered many additional topics not mentioned here.
• We will tackle additional unanswered questions from that episode in future blogs – stay tuned!
• You can track your PD symptoms using the APDA Symptom Tracker app, available for free through the Apple Store or Google Play.
• If you have a PD-related question, you can submit it to our Ask A Doctor portal.
• To make sure you don’t miss the next episode of Dr. Gilbert Hosts, subscribe to APDA’s YouTube channel, and check our Virtual Events Calendar.