5 Common Warning Signs Pointing to Poorly Controlled PD

Over the years, I have noticed as a physician and a patient that many of us don’t pay close attention to what our bodies are telling us until it is blaring WARNING, WARNING, WARNING! Unfortunately, by the time it is so blatantly obvious that something is wrong, we have typically veered off the path for so long that it may take weeks if not months to recover and regain control. I have never met a more stoic group of people than those with Parkinson’s disease; subsequently we as a group tend to push through physical pain, discomfort, malaise, and fatigue, not to mention the ever-present mental exhaustion.

We sometimes think that we are stronger than our present discomforts - I know I'm guilty of this! We tend to rationalize present problems, convincing ourselves that if we muster enough willpower and repeat the mantra "mind over matter," we will be able to overcome any type of adversity. This thinking, although very necessary to continue striving in dealing with a chronic illness, needs to be weighted frequently to make sure we are not causing long term injuries to ourselves.

Let's start by being proactive and recognizing some of the warning signs.

1. Tripping and stumbling

One of the biggest warning signs that we are overly stressed or have poorly controlled PD symptoms is frequent tripping, and stumbling even if we don't fall. This is something I started doing more often since I switched medicines – a sign things are not as they should. Talk to your physician about possible changes in PD medication dosages or frequency. However, there are other reasons why this could be happening, such as neuropathies.

Causes and treatment

One of the common causes in those with PD is B12 deficiency which can also result in balance issues. If your doctor has never checked your levels, ask to have them checked (normal people usually have levels upward of 900ng/L). Although, lab range is 150-900ng/L, neurologically speaking, anything less than 400ng/L can cause severe neurological symptoms such as paralysis, neuropathies, balance issues, and dementia. Replacing B12 is usually done intramuscularly or intranasally. Of course, diabetes is the number one cause of neuropathy.

Poor vision is another cause of tripping, falling, and stumbling because of age and/or visual deficits caused by PD. Visual deficits can obscure objects and depth due to poor contrast visibility especially at night or in low light. The other day, I nearly fell because there was a small step that blended into the walkway causing me to misstep. Besides getting a full visual exam routinely to rule out cataracts, glaucoma, retinopathy, and other age-related visual deficits, talk to your neurologists about possibly increasing your levodopa to see if it corrects the issue. In my experience, Azilect works well for visual deficits due to PD. Sometimes we may require special optical devices such as prisms which helps with contrast issues and depth or tinted glasses to help with depth and contrast as well. I have used both in the past prior to discovering that all I needed was to increase my levodopa. Whenever I start having visual issues, it's usually a sign to adjust my levodopa. Also, I can't forget to illuminate my halls and walkways at home particularly in the middle of the night when a lot of falls occur trying to go to the bathroom. I try to walk on even and lighted paths, and I use a walking device if I'm unsure.

Dystonia can also be a culprit, either in the feet or in the neck, decreasing our range of motion and limiting us from truly judging depth. We might not realize our heads are fixed when we're walking. This causes us to be unable to fully see the path ahead of us. Having feet that are not fully planted on the surface can also make us more unstable when walking. Botox works great for torticollis (dystonia of neck) as well as for lower limb dystonia. There are also medications that might be helpful such as dantrolene, baclofen, and klonopin. Finally, adjusting medications or deep brain stimulation (DBS) may also play a role. But an important easy and cheap treatment is to make sure to stay rested and take a break to avoid falls especially when feeling worn out. I've also learned not to push myself. Many falls and complications can be avoided by listening to our bodies.

2. Muscle cramping

Muscle cramping is another typical sign that PD motor symptoms are not well controlled.

Causes and treatment

Muscle cramping can be caused by multiple things from dehydration to poor nutrition lacking potassium or other electrolyte abnormalities, such as low calcium. Medical problems, like thyroid issues and diabetes, could also be a factor. Drinking lots of water and staying hydrated helps, especially in severe hot or cold weather. Also, eating a balanced meal and increasing dietary intake of minerals found in foods like avocados, strawberries, and popcorn help. I found that a quick treatment for cramps is a spoonful of yellow mustard or a gulp/sip of dill pickle juice!

Muscle cramping could be a side effect of medications such as Neupro. When the patch is suddenly discontinued for a few days after long use, one can experience restless legs and cramping in lower extremities. This should wear off on its own in a day or two.

Wearing inappropriate shoes, like high heels or mules, can also cause foot cramping. Frequent stretching exercises should help decrease this problem. I make sure to wear proper fitting shoes with support, and I don't walk barefooted or use flip-flops.

However, if cramps in any body part last for awhile, this may also be an early sign of dystonia or the medication effect – medications wearing off, or peak dose dyskinesia. If this could be the case, it's best to talk to a physician about treatment adjustments and discuss if other treatment options are available. Physical and occupational therapy along with custom braces and regular deep massages may also be considered.

3. Sweating or night sweats

Certain medications might be the culprit in this case.

Causes and treatment

It's helpful to discuss medications with your physician and rule out other medical conditions. I like to keep track of when sweats occur in relation to food and medication intake. I keep room temperature lower and/or use fans plus moisture ‘wicking’ sleepwear and sheets. I like things that are made of bamboo. They tend to be expensive, but well worth the money since they are comfortable, breathable, and best of all, odor deterrent because a lot of the materials used in exercise clothing absorb odors that are difficult to eliminate even after several washes.

In my experience, levodopa tends to cause sweating mostly when it wears off. This is why is most common at night. Amantadine may also be a culprit, usually causing symptoms within an hour of taking the medication. Some SSRI antidepressants may also be to blame.

Additionally, medical conditions like menopause, diabetes, thyroid disease could be associated with increased sweating. Menopause, diabetes, and high blood pressure tend to cause symptoms at night frequently as well. I have to remember that having PD does not exclude me from other medical illnesses or normal aging effects either!

4. Itchy skin

Itchy skin is not uncommon in Parkinson's.

Causes and treatment

I would seek out a dermatologist if itchy skin occurs and lasts for a while. Doctors can make sure the liver and kidneys are working well because one of the first signs of liver and kidney dysfunction is itchy skin from toxins spilling over. Since Parkinson’s patients take many different medications, we might be more likely to develop fatty liver and liver disease, especially if taking certain medications like antidepressants which can elevate liver enzymes.

Another reason that some experience dry skin is because of underlying autoimmune dysfunction that causes skin to dry because of a lack of oils being produced. In my experience, an easy and effective thing to do is moisturize and hydrate my skin on a regular basis. I use heavy, oily creams. I also don't forget to drink lots and lots of water to flush out my system and to prevent dry, scaly skin. If this problem persists, it's helpful to discuss treatment options with a dermatologist.

Another common cause of itchy skin, especially in the hands, is a flare up of inflammatory bowel disease, like ulcerative colitis, which many of us who have the LRRK2 gene also have this problem.

5. Chest pain

Chest pain can also be seen as a sign of poorly controlled Parkinson's symptoms.

Causes and treatment

Chest pain can sometimes be seen in people with PD due to poor GI motility, which may cause frequent heartburn and reflux. The heartburn and reflux is usually treated with antacids or protein pump blockers. However, in my experience, if you feel pain in your chest, you should go to ER ASAP or contact your physician immediately to rule out heart disease. Unfortunately, having PD does not exclude us from also having vascular disease.

Some atypical Parkinson's plus syndromes, like multiple system atrophy (MSA), can have more autoimmune dysfunction causing arrhythmias which can cause chest pain.

Some of the dopamine agonists, MAO inhibitors, and levodopa formulations may cause chest pain as a side effect as well. If your having chest pain, seek immediate medical attention. This may require a cardiac workup by a cardiologist, as well as adjustments of PD meds and heart and blood pressure medications if required. When I upped my Rytary, I experienced severe hypertension causing me to develop chest pain. This was resolved once I spoke with my doctor, and we decided to decrease my medication.

Although most people talk about low blood pressure in PD, as a physician, I've seen many people with Parkinson's develop or have a rapid increase of blood pressure from autoimmune dysfunction, especially in women. When blood pressure readings become urgent (> 180mmHg systolic and > 110mmHg diastolic), a number of symptoms might occur included shortness of breath, headaches, chest pain, and visual problems. I found that monitoring blood pressure routinely, particularly if there is a family history of high blood pressure, is helpful. Discuss with your physician immediately if blood pressure is high or you're having symptoms.

In the end, we must learn to listen to our bodies.

A healthier you begins with three steps

1. Self-awareness - First identify potential problems and be proactive about it. Don't ignore any issues!
2. Say no to things that may exacerbate symptoms or lead to poorly controlled PD symptoms.
3. Find support - Always ask for help if you're not feeling well and have lists ready which can be easily accessed with things you need help with. Don't push yourself to do things that you know are not good for you in the long run!