Tips for Young Onset Parkinson's Patients
Who is Mariana Moscovich MD PhD?
Mariana Moscovich is a movement disorders neurologist from Brazil who practices in Germany. She was a fellow at the University of Florida Norman Fixel Institute for Neurological Diseases. Dr. Moscovich is an expert in the care of Parkinson’s disease patients and was excited to sit down with us and offer some tips for the treatment of Young Onset Parkinson’s disease (YOPD).
1. Is there any difference in the approach to diagnosing young onset PD from “older” patients with PD?
Young Onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Most people with idiopathic, or typical, PD develop symptoms at 50 years of age or older. YOPD affects about two to 10 percent of the one million people with PD in the United States.The diagnosis of PD in any age group remains clinical, however YOPD patients are more likely to have a genetic contribution and in many cases genetic tests may be ordered. People who have both early-onset PD and a strong family history of the disease are more likely to carry genes linked to PD, such as SNCA, PARK2, PINK1 and LRRK2. In fact, a recent study found that 65 percent of people with PD onset under 20 years old and 32 percent of people with onset between 20 and 30 had a genetic mutation believed to increase PD risk. Genetics does not change treatment for PD patients in the current treatment paradigm; however genetics could change treatments of specific patients carrying specific gene defects in the future. There is currently a lot of research in this important area of study.
Doctors who are not familiar with PD in young people may miss the diagnosis. Many YOPD patients have dystonia and neuropsychiatric symptoms but may lack the classical tremor. People may say “the patient is too young to have Parkinson. Disease”. We must work together to dispel this myth and to raise awareness of the wide age distribution in which PD can manifest and that it is not just a disease of the elderly or geriatrics populations.
The MJFF website has an excellent resource including interviews with YOPD patients and information for the Fox trial finder.
2. Does the clinical presentation for young onset Parkinson’s disease differ from the presentation in older patients?
The cardinal Parkinson’s symptoms may in many cases be the same: bradykinesia , resting tremor, rigidity and gait/balance issues. YOPD’s tend to experience more dystonia and more dyskinesias and motor fluctuations. Also, it is important to say, that patients with YOPD normally have a longer duration disease, with a slower progression. Anxiety and neuropsychiatric symptoms are particularly common in YOPD.
There is a great website at Parkinson’s Foundation on diagnosis and treatment of YOPD.
These are some of the helpful tips from that website:
YOPD Symptoms
Young-onset PD presents similar to late onset PD with symptoms including:
Tremors of the hands, arms, legs, jaw and face
Rigidity of the limbs and trunk
Bradykinesia
Postural instability or impaired balance and coordination
People with YOPD may experience the same non-motor symptoms as others with PD, including:
Depression
Sleep disturbances
Changes in memory and thinking
Constipation or urinary problems
3. If I have YOPD and I want to get pregnant or am pregnant, what issues may be important to consider?
If you are a woman with PD and you are pregnant or are considering getting pregnant it is important that you discuss the situation with your physician as soon as possible. There are not many reports with pregnancy in PD in the literature but many woman with PD have had uncomplicated pregnancies and delivered healthy babies. Patients who are contemplating pregnancy or who are pregnant with PD should discuss which anti-parkinsonian medications should be continued and which medications should be potentially discontinued and weigh the risks of benefits carefully with their treating provider. Decisions are made on a case by case basis.
Most experts DO NOT stop PD medications altogether during pregnancy- It is important that you consult with your treating physician about your specific case and not make any changes in your medications without supervision as sudden discontinuation of PD meds can be harmful to you and your unborn child.
An excellent recent review by Seier and Hiller stated that PD presents before the age of 40 in approximately only 5% of cases, and it is estimated that around 400 women less than 50 years old are diagnosed with PD each year in the United States.
The highlights of this article were:
About half of women experience worsening of PD symptoms during pregnancy. '
• Use of anti-PD medications reduces worsening of symptoms to only a third of patients.
• Women with PD do not have higher rates of birth or fetal complications.
• Levodopa has the most use and safety data to recommend its use during pregnancy.
• Amantadine should be avoided in women trying to conceive or those who become pregnant.
4. Why are my Parkinson’s symptoms worse around menstruation (my period)?
Women with PD commonly report that during menstruation, their motor fluctuations can worsen and that their non-motor symptoms flare. More research is desperately needed in this area. Infact, there is a lack of good research including women with PD in general as many trials largely include older men with PD as the main demographic of study. There is a significant effort to address this unmet need currently in the field of PD research but more work needs to be done. Many women describe that their PD symptoms change around times of hormonal shifts including menses and menopause. A discussion about possible peri-menstrual changes in dopamine should be pursued with your provider as sometimes the addition of a serotonergic medication such as a serotonin re-uptake inhibitor may be helpful.
Stress, anxiety and sleep deprivation can worsen PD symptoms— as can menstruation. Good self care with establishing a healthy lifestyle approach incorporating restful sleep, exercising regularly and mind-body approaches such as yoga or mindfulness may be helpful. The Davis Phinney Foundation has a link to some helpful tips for YOPD.
5. Does treatment differ between YOPD and
idiopathic PD?
The treatment of every patients with PD should be individualized- whether young or old. Cognitive performance may be better in YOPD. Since there are more motor fluctuations and neuropsychiatric symptoms in some YOPD patients, these symptoms should be proactively addressed and aggressively treated as they can affect quality of life significantly. Dystonia may also be more common in YOPD and should be specifically managed as it can often limit exercise or be exercise-induced. The EarlyPD DBS ( Deep Brain Stimulation) study revealed that YOPD patients did better with DBS than controls when DBS was utilized within the first two years following the onset of motor fluctuations. It should not be concluded however that every YOPD patient should receive DBS. Again, customizing therapies for each patient including lifestyle approaches, medications and surgeries is key.
There are issues related to parenting, marriage, work-place stressors that are unique to YOPD. It is important to connect with support groups that can cater to these specific needs. There are many YOPD support groups throughout the world that are doing amazing work connecting and supporting patients that are younger with PD and the people that care about them.
This blog is brought to you by Michael S. Okun and Indu Subramanian.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #EndingPD #ParkinsonPACT #Parkinsonsecrets and https://www.tourettetreatment.com/
He also serves as the Medical Director for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance