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Answers from "Ask The Expert"

Alison Cashell, our Parkinson's Disease Nurse Specialist, answers all questions that come in from the website. It would be appreciated if your questions were as specific as possible to avoid any misinterpretation. Personal details such as names or addresses are not required and will not be included here, and your question will be answered as soon as possible.

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Questions & Answers

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**No action should be taken after your question is answered without consulting your own doctor or nurse specialist.

Question

Why does my voice go down when  do a little work and get tired.  is ther something wrong with my voicebox

Answer

Parkinson’s can affect your speech, and it would be common enough at times of stress or tiredness, that you could experience problems with your speech volume. The good news if, that there are things you can do. We have some information on speech and language problems, and what can be done. You may need to seek some advice from a speech and language therapist. You can do this through your consultant, your GP or your Public Health Nurse, or you can seek one out privately. There is a full list of therapists here ... www.iaslt.ie

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Question

My father (almost 85) was diagnosed with early-stage Parkinsons a few years ago, and the symptoms are slowly but surely progressing. My mother (79) lives with him and, although he is great at maintaining his independence, she is having to help him more as time goes on. I'd like to check out home care help options to discuss with them both - to boost his confidence and take pressure off her. They live in the Rathfarnham/Templeogue area.

Does the Parkinsons Association have a list of recommended home care service providers that are in tune with PD symptoms and requirements? He has already received home sessions with a physio, which really boosted his confidence and ability to do simple things better - his GP organised that.

Any advice would be welcome

Answer

Unfortunately the PAI do recommend one service agency over another. There are many home care providers in the greater Dublin area, so you should have no difficulty finding one. I would also suggest that you get in touch with your parents Public Health Nurse – they are the link to all community services, may be able to recommend a local care provider, and may be in a position to supply a few hours of home care from the HSE. To contact the PHN, simply call their local health care centre, and ask who covers your parents area, then request a home visit. Another option you could explore is the Carer’s Association – they can provide a carer for 4 hours a week, and ask for a donation of €2 per hour. Their number is 1800 247 247.

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Question

My mum suffers from Parkinsons and we are due to travel to the USA in two weeks time.  Is there any way we can avoid her having to undertake the security checks at the airport such as taking her shoes off?

Answer

I am afraid there is no way around airport security, especially when it comes to travelling to the USA – they are particularly strict. I would be happy to send you out an Parkinson’s identity card, which your mother could wear on a lanyard and show to the security guards.

If you wish, you can request assistance for your mother from OCS (One Complete Solution). They offer a free service for people with reduced mobility, and they operate out of Dublin, Cork and Shannon. It may make life easier going through security, as they will allow her more time.

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Question 4

hi,i was diagnosed with PD two years ago.i am 62 years old and am showing only minor symptoms as of yet.i am on azilect 1mg once a day and am currently cutting down on mirapexin and am at .18mg three times a day with only minor withdrawal symptoms this is with a view to cutting out mirapexin totally, this is being done under the supervision of my consultant.i am still driving and have recently found out that PD is a notifiable condition since 2013,my licence expires in 2020 should i wait until then or should i notify them now and what is the likelihood of me not being permitted to drive.

Answer 4

Yes, you need to inform your local licensing authority and you insurance company. As your license is relatively new, they should replace it at no extra cost. However, you will need to complete the medical report form, and have your GP or consultant stamp it. It will be their decision about whether you are fit to drive, but the majority of people with PD have no problems and can continue to drive without difficulty.

You can download the form here... http://www.ndls.ie/images/Documents/DrivingLicence/155076_NDLS_Med_Rep_V9_Online_FA_BD_PDFX.pdf

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Question

A member of my family has been diagnosed with Parkinsons. It would now appear that with a wider number of symptoms that they may well be suffering from Lewybodys. Does Lewybodys come under your umbrella ? If not can you let us know who to contact for diagnosis etc

Answer

It can be happen whereby a person can be diagnosed with Parkinson’s and then develop a number of other symptoms, which would be what we call “red flags”, and have their diagnosis changed. Conditions like Lewy Body Dementia/Disease (LBD) are known as a “Parkinsonism”, so looks very like PD in many ways, which is why this happens. The more common red flags in LBD are sensitivity to medications, visual hallucinations, fluctuating problems with memory and difficulties with spacial orientation.

We do support people with LBD, but you may find more appropriate support from the Alzheimer’s Society of Ireland. They have a helpline, support groups and also have day centres and respite services for people with any form of dementia. Their website has information on LBD, and the link is below.

http://www.alzheimer.ie/About-Dementia/What-is-Dementia/Types.aspx

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Question

Hi, my husband was recently diagnosed with Parkinsons. He is only 53 years old. As it's early days we are still only learning about it. My question is:....is it better for the patient to go down the public route of care rather than privately. ?

Currently we have private insurance, but we have been told that if he goes public he has greater access to a team of people, ie. Parkinsons trained nurses, social workers, people on hand at the end of a phone to answer questions,. Whereas when you go private you don't get this level of care Can someone please come back to me and let me know as we want to get the best treatment and have help on hand when needed.

Answer

I would generally advise people with Parkinson’s to get into the public system, for all of the reasons you listed. Some people in the early disease prefer to see a doctor privately, but as you generally only need to be seen once a year, it’s completely at the discretion of the person themselves. Just bear in mind that not all public consultants will have a Parkinson’s nurse – there are only a few around the country, and that you are unlikely to see the consultant, or even the same doctor each time you go for a clinic visit.

Ultimately, at the early stages, it’s really about whatever works best for you, but as the condition advances and you need a little extra support in the future, it would be my opinion that you would be better off in the public system.

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Question

Hi, my Mam was diagnosed Parkinson's 2012 and since her medication of Sinemet was increased in the last 2 months her symptoms have got worse. Her legs refuse to work for her, her feet seems to stick to the floor. She has gone from using a Walking Aid to a wheelchair. She is back to the Mater Hospital next week, and her Doctor was saying he may put her on Stavos.

I was told about a pacemaker attached to the Brain that can alleviate the Symptoms? I researched it and most of the sites are American. Has this type of Surgery ever being done in Ireland?

Answer

Sorry to hear that your mum hasn’t been doing well. Her feet sticking to the floor is known as “freezing”, and it is very common in Parkinson’s but ordinarily wouldn’t render you into a wheelchair, so she may need some physio. The medication the doctor mentioned is probably Stalevo, which is essentially Sinemet with an added extra to help it to work better, so you can get a better result.

Deep Brain Stimulation (DBS) which is the pacemaker for the brain which you mentioned in not currently available in Ireland. However, consultants can refer patients over to the UK for assessment and surgery. We simply don’t have the resources or expertise here. There is a link below to the Parkinson’s UK website which gives details on DBS. http://www.parkinsons.org.uk/content/deep-brain-stimulation

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Question

my doctor feels that i have parkinsons disease. From what I have read I agree with this diagnosis. I started off with a sore leg which was worse in bed. I now have developed a tremor in my hand on the same side as the sore leg. When I am active like dancing or walking fast my hand shakes worse. I will have to wait for a long time to see a neurologist and in the meantime I feel that this is moving very fast. I am scared and confused and need somebody to talk to. I dont want to talk to my family because they are scared too. My husband doesnt want to talk about it.

Answer

I am sorry to hear that you feel you can’t talk to your family, as often they are of great support, particularly around the time of diagnosis. If you would like to talk to someone, Pauline, our helpline manager is always happy to chat. She’s on the Freephone number 1800 359 359.

If you wish, I could post you out some information about Parkinson’s and the various aspects of it. It can take a while to be seen by a neurologist, sometimes a couple of months, but thankfully Parkinson’s isn’t too time sensitive, in that it does not progress rapidly, and if starting treatment is slightly delayed, it should not have a big impact on the course of the disease. Anxiety and stress can make the symptoms appear worse, including a worsening of the tremor, stiffness and slowness, which are all temporarily worse during the stressful period. If you feel that you are anxious and worried, please try some relaxing techniques, such as mindfulness, or deep breathing exercises, or even try something like Yoga, which has proven to be very effective for people with Parkinson’s for improving mobility as well as reducing stress levels.

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