Healthy Living

Organizations that Support Parkinson's Disease Patients and their Families

Organizations that Support Parkinson's Disease Patients and their Families

Parkinson’s disease is a neuromuscular degenerative disorder that robs those afflicted of their motor functions over time. The average age of a Parkinson’s diagnosis is somewhere around the age of sixty, though at times those that are younger can also be diagnosed with the disease. Cases such as those are known as early onset Parkinson’s disease.

Patients with an undiagnosed condition will start to notice things such as slight tremors or trouble grasping and holding on to objects. They may also have tremors in the chin or lips along with uncontrollable twitching in the limbs, mainly legs. Smaller handwriting that crowds a page is usually a sign of Parkinson’s as well, along with a loss of smell, and increased mobility issues.

By far the most common indicators for Parkinson’s are a resting tremor, bradykinesia and rigidity of musculature which will begin on one side of the body a gradually migrate to the other side, eventually encompassing both regions of the body.

Life Changes After Diagnosis

Once the patient suspects that they may have Parkinson’s the first order of business is to get in touch with a physician to have themselves checked. Although there is no objective test such as an EKG or blood test for Parkinson’s, a physician will run neurological testing that looks for a few things in particular. The physician may also prescribe Parkinson’s drugs to see if there is a response to them. Once a determination of Parkinson’s has been made, patients will see changes in the most ordinary, mundane daily activities occur in their lives that they may not have anticipated and may resent.

Getting around for Parkinson's patients can be difficult, one way to avoid a spill with the onset of tremors is to employ the use of balance aids such as canes or walkers when they are needed. These can be used for just about any physical activity that the patient wishes to undertake, from walking to dancing. Balance aids increase confidence when a patient doesn’t have to worry that they will take a tumble and  people with Parkinson's have many options in the type of balance ides that they can purchase. It may be necessary to first consult a physical therapist or a doctor to ascertain just which sort of balance aid is needed.

Having an emergency plan is the first step in preparation. For those without an in home caregiver the first step would be to enlist a family member, neighbor, or close friend that is reliable and easily available who is aware of the condition and can arrive quickly on scene when the tumble happens. Barring that an emergency medical communications device preferably one that can be worn on the body, can alert emergency personnel as well as the police should be the second step in preparation.

Due to the the difficulty associated with speaking and movement of the muscles of the face, chewing and swallowing become one of the more debilitating and dangerous non-motor symptoms. Patients with dentures or missing teeth may have more difficulties as muscles freeze and without the presence of a dental dam, patients now run the additional risk of choking and aspiration of saliva and food particles which can lead to lung infections including pneumonia.

One of the major issues facing patients is that of dry mouth. Many of the medications used to manage the Parkinson’s, can cause a marked decrease in saliva production. Saliva is important for a number of reasons. Not only does it lubricate the mouth to assist in swallowing, it’s vital to taste and chewing. The enzymes and antibacterial properties present in saliva help to stop sugar from accumulating on teeth and aid in food digestion.

Dental plaque which is always present in the mouth until removed, contains bacteria that turns the sugar that is ingested into acid which then attacks the teeth causing decay. Without sufficient saliva the sugar converts faster and plaque hardens more quickly causing even more damage to dentition. Dry mouth can also lead to a propensity for gum disease. As the gums shrink and tooth roots are exposed, tooth decay becomes more likely.

Resources for Patients and Families

There are a number of organizations that can make the transition not entirely seamless, but at the very least smoother, and their help doesn’t end at the transition.

The Michael J. Fox Foundation

This is a foundation that is at the forefront of fundraising and research for Parkinson’s. It provides valuable resources for families and patients on living with the disease as well as providing help with finding facilities and physicians that specialize in the disease.

National Parkinson’s Foundation

Provides patients and families with resources that enable them to live actively and enjoy life by targeting care and treatment research protocols.

American Parkinson’s Disease Association.

Helps patients and their caregivers and family members live fuller lives through support services, education and research.

Parkinson’s Disease Foundation

Provides everything from news information about the newest therapies and clinical trials on the disease as well as introductory education on what to expect with the disease as it progresses.

European Disease Foundation

Is an advocacy agency that fights for the rights of Parkinson’s and other chronic disease sufferers.

The Davis Phinney Foundation

Supports research programs that help to give patients information and the tools to successfully navigate the disease in a way that helps with management and control.

The Parkinson Alliance

This is an organization that provides news of the lasted trials and therapies for Parkinson’s. They also sponsor the Unity Walk that takes place in New York City each Spring, which is a fundraising event dedicated to raising money for Parkinson’s research.

Partners In Parkinson’s

This program connects patients, families and caregivers to advocates that offer support in the form of counseling at no cost to them. They also offer many other services or can provide resources to these services.

This is a forum that provides support groups and resources for local support groups for both patients and caregivers.

The National Parkinson’s Foundation

This is a site for the caregivers of Parkinson’s patients and helps to navigate all the aspects of care for patients including financial, emotional and the physical. They also offer resources for counseling for caregivers.

Living With Parkinson’s

Yes, things will change and new routines and accommodations will have to be made for this new chapter in, but there is no reason why a Parkinson’s diagnosis should stop one from living their lives to the fullest. These organizations are great resources that Parkinson's patients and loved ones can use for the support they need after their diagnosis.