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You've Been Diagnosed...

I've just been diagnosed, what should I do?
How is Parkinson's treated?
Who can I involve in my care?
I've young-onset Parkinson's, what does this mean?
Does Parkinson's affect the mind?
Coping with PD
Disability & Taxation
 

You’ve Just Been Diagnosed

The term Parkinson's is used to describe a progressive, neurological disorder; the result of a loss of dopamine in the base of the brain called the substantia nigra. If you've just been told that you have Parkinson's, the shock of such news can be overwhelming. It can make you feel lost and very lonely. While it is perfectly natural to feel that way, we want you to know that you are not alone. Whether you've just been diagnosed, or you've known for some time, there are two things you should do.

You should visit your doctor again and ask all the questions you may have about your condition. Even if your doctor gave you all the information during your last visit, do not be embarrassed if you've forgotten anything or you have more questions. Your doctor understands and wants to make sure you have all the information you need. Get as much information as you can – contact us toll –free at 1-800-663-2468
 

What is the Treatment for Parkinson’s?

Always discuss treatment options with your Doctor. Medications are available to compensate for the lack of dopamine and help alleviate symptoms. Dopamine is crucial to human movement and is the neurotransmitter that helps transmit messages to the areas of the brain that initiate and control your movement and balance. These dopamine messages make sure that muscles work smoothly, under precise control, and without unwanted movement. Treatment is needed to correct the deficiency of dopamine. Replacing the dopamine alleviates the symptoms but does not halt the progression of the disorder. As symptoms progress more medication is needed. It is important to remember that taking medication on time is an integral part of treatment. While treatment does enable people to function better, it is not perfect and can cause side effects. It is important to recognize that just like you, Parkinson’s is very individual and no two people with Parkinson’s will have the exact same symptoms or the same rate of progression.
 

Adjunctive Therapies

Occupational Therapy
Occupational therapy is aimed at promoting independence and improving all aspects of functional ability by a) Assessing mobility, balance and posture and prescribing a specific exercise program, and b) Analyzing walking problems and suggesting strategies/tips or adaptive aids.

Speech Language Pathology
Speech Language Pathology is aimed at evaluating speech problems and designing a therapy program to meet individual needs.

Surgical options
There are a number of surgical options available, however, each has a very strict criteria that must be met before being considered. Check with your doctor to see what is available and if you would be a candidate.

Combined therapies for optimal treatment
Although the treatment of Parkinson’s is mainly pharmacological, the addition of various complementary treatments has been shown to be very effective at better controlling certain symptoms or even delaying their appearance. Accordingly, posture, walking, balance, rigidity, endurance and pain control are likely to be improved with physiotherapy. The maintenance of autonomy in all aspects of daily and domestic life may be improved by an evaluation and follow-up with an occupational therapist. Communication and speech can be maintained or corrected by the interventions of a speech-language pathologist. A consultation with a dietician may be useful in restoring the medication’s effectiveness or to counter side effects. A global approach greatly improves the treatment of Parkinson’s and may ensure a better quality of life for those suffering from it.

Alternative Treatments
What consideration should be given to alternative therapies and medicine?
Interest in alternative approaches to health continues to grow. Approaches such as massage, homeopathy, aromatherapy, pressure therapy and reflexology are gaining increasing consideration as alternatives to so-called traditional medicine. While it is true that there is no harm in trying to feel better, these therapies should be viewed with caution and discernment. For example, choose a type of massage that is best suited to your needs, condition and energy level.

If you have Parkinson’s, it is essential that you find out as much as you can about the quality and benefits of all these approaches as some will be better suited than others to your specific needs. The best choice of therapies, be they traditional or alternative, is one that is made in an informed manner. Which therapies to choose and which to reject should be discussed with your physician, so as to plan the interventions most likely to be effective for your well being and health.

Alternative therapies should always be undertaken on the advice of your doctor and should complement your current treatment regime. Never stop treatment/medications without consulting your doctor and be sure to always discuss treatment options with your them.
 

Who can I involve in my care?

The Health Care Professional/Interdisciplinary Team
The Health Care Professional Team is comprised of specialists who may be involved in the therapeutic treatment of specific Parkinson symptoms. Please remember not all of the listed specialists will be covered by MSI.

The General Practitioner (GP) or family doctor - is whom most people with Parkinson’s will see for general healthcare advice. This doctor will maintain all of your records. Typically the General Practitioner or the Neurologist will be the primary contact on the care team - referring the patients as needed to the appropriate specialists.

The Neurologist - specializes in neurological disorders. Thus, they can provide the person living with Parkinson’s the most specific care in terms of the disorder. The neurologist will typically determine treatment and adjust medications as needed. A patient should see the neurologist annually. The GP might consult with the neurologist throughout the year on your care as needed.

The Pharmacist - is the record keeper of all of the medications a person with Parkinson’s uses. The patient should build a relationship with one pharmacist or pharmacy. The pharmacist can offer advice on medications, medical coverage and drug plans in consultation with your doctor. Be sure to tell your pharmacist about any supplements or over the counter medication that you are taking. Some medications do react when taken in combination with others and could cause serious adverse side effects.

The Psychiatrist - Psychiatrists/Psychologists play an important role if the person living with Parkinson’s is experiencing depression or other issues of mental health. Depression is manageable and there are effective treatments available.

The Speech Language Pathologist - can provide a therapeutic speech program to the person living with Parkinson’s if required. Based on the speech issues a person is experiencing they will be given a series of exercises to work on at home. They can also assist with issues such as excessive saliva and swallowing difficulties.

The Occupational Therapist (OT) - would assess the symptoms of the person living with Parkinson’s and make recommendations on tools and assistive devices that would make daily living safer and easier. Usually an OT is called in when medications are not fully meeting the needs of the patient. However, having an OT assessment earlier on could improve quality of life. Many assistive devices are tax deductible.
 

Young Onset

Generally, regardless of the age at which Parkinson's is diagnosed, the symptoms are quite similar, although certain differences are recognized when it starts before age forty. It seems that dystonia (involuntary muscle contraction) is more frequent in younger people and that the motor fluctuations and dyskinesia (involuntary movements) associated with Levodopa treatment appear much earlier in this group. On the other hand, trembling is less common in younger people and cognitive disorders (memory impairment, concentration difficulties) are also more rare.

Thousands of young adults around the world are living with Parkinson's . Like you, they're tackling the challenges of career, parenting and pursuing goals for the future. We understand that whether you are newly diagnosed or if you have been living with the condition for years, having Parkinson's at a young age creates very particular issues, questions and concerns, such as:

  • Relationship issues with spouses, parents, children...
  • Accurate and age-specific medical information from the experts
  • Common psychological/emotional issues
  • Career & financial planning for the long term
  • Accurate and constructive news on current medical research
  • Contact with other young people with PD
     

Does Parkinson's affect the mind?

Parkinson's is a neurological disorder, mainly affecting motor skills, however, there is increasing research to suggest that there are cognitive and behavioural changes related to Parkinson’s. In the majority of cases, it slows the body, not the mind. However, when brain cells are affected by medication, some emotional and cognitive/behavioural changes can be expected.

Anxiety and depression are very common among people with Parkinson's and may occur due to seratonin imbalance, a side effect of certain medications. This may eventually lead to loss of memory. Anxiety and depression are difficult to diagnose because the symptoms are parallel to those of Parkinson's.


Understanding Change

Living with Parkinson's takes a great deal of care and understanding. Knowledge is the key and we encourage you to learn all you can. The more you know, the better prepared you'll be to face the challenge.


Coping and Independence

Parkinson's can be very stressful to the person experiencing the symptoms, as well as the care-partner and family and friends. This stress can manifest itself physically, psychologically and emotionally. Adjusting to the challenge is not easy for anyone.

Parkinson Society Maritime Region offers support groups where you can find mutual sharing, emotional support, understanding and practical information. These groups can be of a social nature or more formal where you can learn about various coping skills. We encourage you to get involved.

 

Disability and Taxation

Considering applying for Canada Pension Disability?

If you no longer feel you can work, but are under age 65, the federal government offers a program called the Canada Pension Plan (CPP) Disability Benefits.

For more information on the details or how to apply for this program, call Human Resources & Social Development Canada (HRSDC) at 1-800-277 Ext 9914 or visit their website

CPP disability also provides a children’s benefit. If you have a child/children under the age of 18, or between the ages of 18-25, visit their website for more information.

Taxation

Want to know what you can claim as a deduction or credit on your income tax return? Call 1-800-959-8281 or visit Revenue Canada’s website.

If you consider yourself to have a severe or prolonged impairment in physical or mental function, you might want to learn more about the Disability Tax Credit(form T2201).

For a list of eligible medical expenses, review the Medical and Disability Guide RC4064.

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Parkinson Society
Maritime Region

7071 Bayers Road, Suite 150
Halifax, Nova Scotia
B3L 2C2

Toll free: 1-800-663-2468
Phone: 1-902-422-3656
Fax: 1-902-422-3797

psmr@parkinsonmaritimes.ca