FAQ


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Recently Diagnosed with Parkinson’s Disease FAQ
Living with Parkinson’s Disease FAQ
Carer and Family Parkinson’s Disease FAQ

Recently diagnosed with Parkinson’s FAQ

Q) How do I join Parkinson’s SA?
A) You can go into Parkinson’s SA on King William Road, call them on 08 8357 8909 or send in a membership form with a money order covering the $30.00 membership fee (GST inclusive).

Q) In the event that I need to be hospitalized, how can I communicate my condition to medical staff that do not know me?
A) It may be useful to obtain and carry with you a Hospitalization Forms. It requires you to fill in details that as a person with PD may affect your stay in hospital. email info@parkinsonssa.org.au
for more details

Q) Does Parkinson’s always get worse? Can it ever get cured or just go away all together?
A) Currently there is no definitive known cause or cure for PD. The most beneficial treatment to date is a form of medication known as levodopa. The aim of this drug treatment is to replace the dopamine that Parkinson’s Disease diminishes. Many patients have a very gradual progression of their symptoms, especially if they develop PD earlier in life. Other patients have a faster rate of progression to a stage where they respond poorly to their medication. There are no known cases of the disease simply vanishing by itself.

Q) How can I explain my condition to a stranger on the street that has trouble understanding my speech?
A) You may like to obtain and carry with you a number of the ‘I have PARKINSON’S DISEASE’ business cards that are available. They explain that as a person with PD you may experience trouble with speaking and writing clearly. It may be useful to simply hand one of these to someone who is having difficulty understanding you. Email young.parkinson@hotmail.com for more details

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Q) Is there any research being undertaken which may improve the quality of life for PD sufferers or even find a cure?
A) There is always research being done in an attempt to find a cure for PD, or something that may slow down it effects or even prevent it. For more information on current research projects and the results of recent ones, contact the Parkinson’s SA office. 

 Living with Parkinson’s Disease FAQ

Q) Is it true that multiple antioxidant therapy may reduce disease progression in early onset PD and increase the time before the L-Dopa drug is needed?
A) L-Dopa is the mainstay of treatment for advanced PD but severe side effects develop after about 5 years. The reasons for this are not known but it is suspected that L-Dopa generates reactive oxygen species, which cause further damage and produces the side effects. It has been proposed that multiple antioxidant therapy in combination with L-Dopa might reduce these side effects.

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Q) A parent and sibling of mine have PD. What are my chances of developing the disease?
A) Your family may have a defect in the gene used to regulate alpha synuclein. This gene is called parkin. Mutations in the parkin gene can be detected in up to 50 percent of patients who develop PD before age 40. a blood test can be performed to look for this mutation. The chances of your developing PD may be as high as 25 percent with a parent and a sibling having the disorder.

Q) I have noticed that my Parkinson’s symptoms seem to be worsening as I approach menopause. Is there a link between oestrogen and PD?
A) Evidence from research into oestrogen and Parkinson’s suggests that oestrogen may help protect the dopamine pathways in Parkinson’s. This may help to explain why men are slightly more susceptible to Parkinson’s than women, particularly in younger age groups. Some studies have found that there may be an exacerbation of Parkinson’s symptoms once a woman has reached menopause that can often be alleviated by hormone replacement therapy (HRT). However, other studies found inconclusive evidence of the positive effects of HRT. Further research needs to be done on oestrogen and Parkinson’s. As everyone with Parkinson’s is different and will experience different symptoms, it is important to discuss any concerns you may have with your GP or consultant who will be able to advise whether you may benefit from HRT.

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Q) I have Parkinson’s and I’m worried that my sexual performance is being affected by it. Would Viagra help?
A) You should contact your GP and ask about Viagra. People with Parkinson’s may be eligible for a free subscription.

Q) I have recently begun to find buttons on clothing hard to open and close. Are there any alternatives for clothing that makes dressing easier?
A) A simple solution is to replace the buttons with patches of Velcro. You may also find that small buttons, like cuff buttons, can be sewn on with elastic to eliminate the need to undo them. When buying new clothes, you might want to consider stretchy materials, like those that contain Lycra, which don’t require fasteners. To avoid buttons on trousers or skirts, look out for elastic waistbands.
Q) Occasionally I experience an extreme chill in limbs and parts of limbs. Is this part of Parkinson’s and how can I help to alleviate it?
A) Some people with Parkinson’s do report sudden fluctuations in temperature, and for many this is linked to their medication “on” and “off” periods. You may find it useful to keep a record of when the chills are being experienced and see if you can find any connection to the timing of medication. It is also important to discuss this ‘symptom’ with your doctor and/or specialist as it may not be related to Parkinson’s at all and could indicate another medical issue. A suggestion to relieve the cold is to use heat pads or hot water bottles on the affected limbs.

Q) I have PD. What are the chances that any children I may have will develop my condition?
A) Results may vary from person to person, but generally both partners need to have the defective gene for any or all of the children to develop Parkinson’s Disease. If both partners have the gene the chances are approximately 50%. For more specific information on your case talk to your neurologist.

Q) I live alone with Parkinson’s Disease and was wondering if there is anything on the market that can make my daily routine a little easier?
A) There are many gadgets that can make cooking, cleaning, bathing, or dressing easier if you have mobility or manual dexterity difficulties. For example, special bottle openers, “grabbers” to pick up objects, swapping buttons for Velcro on clothing, or using a soap mit to keep the soap from dropping. If you find domestic tasks difficult to do yourself, you may be entitled to services such as home care, meals or laundry services.

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 Carer and Family Parkinson’s FAQ

Q) I have a friend with Parkinson’s who lives alone and often seems rather depressed. What can I do about this?
A) When somebody feels lonely and depressed it may help to talk to someone – a neighbour, friend or family member. If their feelings of depression continue or become worse, it is important that they contact their GP. He or she may prescribe anti-depressants or other therapy options that may help. Try talking to your friend and if you continue to be worried about them suggest that they see their doctor or a counselor.

Q) My daughter has Parkinson’s and has recently moved out of the family home. Should I be worried about her safety? Is there anything that I can do to help make her home safer?
A) There are many things that can be done to improve safety in any home, regardless of whether the person living there has PD. The main worry with PD sufferers is the likelihood of a fall. In order to reduce the likelihood of falling, a non-slip mat in the bath or shower is a good idea, along with rearranging furniture and rugs to make moving around your house safer. You can also check that electrical leads do not cross walkways, and fix any loose carpets or floorboards.

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Feedback via Email: info@parkinsonssa.org.au

 

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