ABOUT THIS WEBSITE
Parkinson’s disease is one of the most complicated of all known diseases. It is hoped that this website will make it more convenient for those who feel alone and afraid with their diagnosis to under stand that they have the support of many people like themselves who will help them to get through life with hope and fellowship. The website is intended to support all aspects of the Hackensack Meridian Health Network by supplementing the ongoing efforts of its physicians, clinicians, and patient advocates and by providing a convenient resource for all People with Parkinson’s disease and those who care about them.
- To provide fellowship and moral support to people with Parkinson’s Disease (PwPs), their families and care partners
- To disseminate information and to raise awareness regarding Parkinson’s Disease
- To act as a resource center for PwPs and others who would like to know more about Parkinson’s
- To support Hackensack Meridian Health and JFK University Medical Center by enhancing communication with its patients
Get the latest PD news from Hackensack Meridian Health: PDUpdates will be e-mailed directly to you. CLICK HERE for a copy of the latest copy of PDUpdate.
From time to time, we will have important REMINDERS to share with you. They will be shared in the form of PDBULLETINS. CLICK HERE for the latest PD Bulletins.
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Parkinson’s disease is every bit as devastating to our families as cancer is, especially when it hits close to home. Nationally, Parkinson’s funding is a mere fraction of the funding for cancer research, so it needs many voices. As much as he is the defacto advocate for our Parkinson’s community, we simply cannot sit back and expect that Michael J Fox will or should get the job done on his own.
PLEASE GET INVOLVED in fund raising programs like Moving Day New Jersey, which raised nearly $500,000 for the Parkinson’s Foundation since 2018.
For information on Parkinson’s research programs, funded by the National Institute of Neurological Disorders’ (NINDS) Brain Resources and Information Network (BRAIN)
Please click on the button below to view the Research Programs:
The Editor will select a person who, through their actions, either recent and longstanding, has demonstrated a commitment to improving the quality of life for the Parkinson’s community or someone who has Parkinson’s disease. You may nominate someone that you know for this honor by emailing their name and qualifications to firstname.lastname@example.org.
Find an Event
Three of our support group regulars, all of whom have undergone DBS (Deep Brain Stimulation) surgery, will lead the discussion. They will comment on the symptoms that each had prior to the procedure……
1) I have Parkinson’s disease. Will my children or grandchildren also be affected when they are older?
The lifetime risk of developing PD is around 1%, 3% if a first degree relative is affected with PD. The risk at age 65 years and older is 4-5%
There are genetic risk factors common to certain ethnic populations such as Ashkenazi Jews (GBA and LRRK2), but more so environmental risk factors such as exposure to pesticides and herbicides, and prior head injury.
2) I have a close relative with Parkinson’s disease and was told I have a gene mutation that may increase the chance of my developing Parkinson’s disease . Is there any medication or any treatment that can decrease my chance of developing the disease?
We cannot predict who will develop PD. We do not have any medication that can prevent PD, however a healthy lifestyle, quality sleep, use of caffeine, a Mediterranean diet and EXERCISE can help to decrease the risk of developing the disease.
3) Why am I always dizzy, especially when I get up from bed? Is there anything I can do?
This phenomena can is termed autonomic dysfunction, and orthostatic hypotension. Syncope (fainting) is the second most common cause of hospitalization in PD. This is often associated with supine hypertension, or very high BP when lying down. This occurs in 60-90% of individuals with PD (20-30% with significant symptoms). This may actually precede the PD motor symptoms. Some treatments may include increased Na intake, keeping hydrated, compression stockings, use of medications and monitoring use of anti-hypertensive medication use to avoid sudden drop in BP.
4) Why are my children insisting that I am depressed even though I reassure them that I don’t feel sad?
Apathy and depression can exist in PD. Apathy refers to reduced interest or motivation in activities, but individuals do not feel sad or helpless. This can be confused with depression and cognitive decline. If not addressed, apathy can become a risk factor for cognitive decline. Although no proven treatment, medications may be helpful.
Depression affects up to 60% of individuals with PD. The diagnosis may be difficult, as symptoms such as sleep difficulties fatigue, apathy, psychomotor slowing are common to both disorders. PD depression is often poorly responsive to pharmacological treatment, and may worsen motor symptoms of PD. Depression may lead to cognitive decline and dementia.
5) Why can I usually walk without problems, but at times I "freeze," especially when I have to start walking, or if I have to go through a doorway or elevator?
Waking difficulties may start a number of years after the onset of PD. Some features of gait impairments include decreased step height, decreased step length/cadence/speed, decreased trunk sway, postural changes, and en bloc turning.
Freezing of gait (FOG) is a sensation as if the feet are glued to the ground. There is difficulty taking the first step, and when turning. There may be difficulties going through doorways, elevators and narrow passages. FOG may respond to cueing strategies and sensory stimulation such as laser lights, music.
6) Why can’t my spouse hear what I say? Is it me or does my spouse need to have his/her hearing checked?
Persons with PD are often not aware of their speech difficulties. Some characteristics of parkinson’s related speech include the following. Hypophonia refers to a reduced amplitude of neural drive and speech motor that may result in reduced vocal loudness. Hypoprosody refers to pitch inflection. Hypokinetic articulation refers to reduced range of articulatory movements. Dysarthria refers to a slurring of speech and difficulty articulating words. Tachyphemia refers to fast speech producing a rapid stammering.
There are certain proven therapy related treatments that can address some of these concerns and include LSVT, SPEAK OUT and LOUD CROWD.
7) I believe I am still very sharp, and I have good judgement and wisdom, but my children think I am losing my marbles. Why?
Cognitive changes can occur in PD. These may include “tip of the tongue” phenomenon and trouble finding the right words. Problems can also occur in executive functioning, including trouble with multi-tasking, organization and planning, difficulty switching focus and tasks, as well as decreased initiation of activities
Visuospatial functioning can also be affected, manifest by worsening sense of direction, getting lost in familiar places, difficulty navigating unfamiliar places and misjudging distances and locations. Cognitive training and cognitive rehabilitation therapies may be helpful.
8) I have been taking L-dopa for a few years and now my medications don’t last until the next dose, and I feel terrible for some time until I take the next dose. At other times I have uncontrollable jerky movements. What can I do?
After prolonged L-Dopa treatment, months to years, duration of each individual dose becomes shorter and shorter (weaning OFF or ON/OFF phenomena). Excessive and involuntary movements can occur when the medication is effective (dyskinesia). Treatment of dyskinesia includes fine toning and adjusting the dose of dopamine as well as introducing other agents that may reduce dyskinesia.
9) Is there anything else I can do in addition to taking medications to remain fit and decrease disease progression?
The most compelling research shows that exercise improves PD symptoms, delays Parkinson’s progression, decreases rate of complications, and improves mood and cognitive functioning. Parkinson’s rehabilitation and physical medicine modalities can include PT, OT, ST, cognitive therapy, vestibular therapy as well as music, dance and other structural/postural treatments and movement based exercises. Various interactive and virtual technologies are also being used.
10) Should I consider Deep Brain Stimulation (DBS) surgery, and if so, what are the risks?
DBS has been approved by the FDA for patients who have severe motor fluctuations and/or dyskinesias that can no longer be controlled with medication adjustments. Indications generally are age < 75, normal cognition, and no other major medical problems. Complications (2-3%) include bleeding in the brain or infection, paralysis, loss of vision, decreased cognition, and worsening of gait and balance. Other technologies such as focused ultrasound should also be considered when being evaluated for this type of intervention.
I am grateful for the Mentor/Mentee program. It was instrumental in my transition from being a single person with Parkinson's to being a member of a community of people with Parkinson's. We are not alone.
John did a tremendous job with this website, www.jfkpdadvocate.com! As he envisioned, it truly is my "go-to" resource for all the scheduled HMH support groups and activities for people with Parkinson's (PwPs) like me. It provides the dates and links to the different events so there is no wasted time figuring out access. I hope you all give it a good try!