Questions to ask when newly diagnosed

[Trenny]

I had a DATscan a few weeks ago and understand from my GP that it shows signs "consistent with Parkinson's Disease or the Parkinsonian syndrome".

What questions should I be asking the neurologist when I finally get an appointment with her?

[Hidden]

I am making too many posts but it has been 18 hours and no one has responded. Now others will disagree with me and you can get some information and then I will just lurk and read for awhile and refrain from posting.

I suggest that you take a note pad or better still a spouse , or mature son or daughter or very close friend with a note pad into the meeting with you. Listen carefully to what she has to say and take notes. She has probably done this before and knows what your concerns will be. Let her talk and listen carefully and if you do not understand then ask a question. There are lots of places you can get information about the decease later and time is at a premium in these meetings.

Ask her what lead to her decision to make that diagnoses and how certain does she feel or is there still a chance that it is something else. Ask her if she can try to predict how fast this might come on and get worse. Ask her if you should continue to see her or should you see a movement specialist. Get an email address or telefax # that you can later use to send a written request for assistance should you need to see her before the next appointment or are having other problems or things get worse or you have new questions. (difficult to get sometimes). Strike up a friendly relationship with the secretary, she is the one who will pass your requests to the doctor and fit you in for earlier appointments. Write down the secretary's name and use it.

My first appointment where I was diagnosed I forgot everything he said and could not answer any of my wife's questions when I returned home. In later meetings I guess I misinterpreted his instructions. That caused me a pile of grief, so now my wife goes with me into the meetings. She always has a few good questions while he talks. I just answer his questions and listen.

I just noticed this for the first time. This is very good "Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them."

Best of luck

[charsie]

I have created the most complete list of PD Symptoms. It will help you better understand the disease and be able to communicate with your neuro doc. Send me an e-mail with "PD Symptoms" at the top. I will send you the list of 100+ symptoms and a "How to use the list. The form has many features so please read the 'How to use...

Send to: [e-mail] Note: All of you that read this are welcome to make the same request....

[Hidden in reply to charsie]

Can you send me ur list of parkinsons symptoms. Thank,u.

[charsie in reply to Hidden]

I need for to send an e-mail directly to me as HealthUnlocked does NOT identify your e-mail. Send to: [e-mail]

[Hidden in reply to charsie]

Can you send me ur list of parkinsons symptoms. Thank,u.

[Hidden in reply to charsie]

Can you send me ur list of parkinsons symptoms. Thank,u.

[kaykoch in reply to charsie]

Please send me the list. I think it would help me and my husband understand what is happening.

Kay

[charsie in reply to kaykoch]

I need you to send me a direct e-mail to: [e-mail] in the Subject area just

say 'Symptoms'

[Trenny in reply to charsie]

I never received your list of symptoms. Can you send one to me, please: sheila_34 at tiscali.co.uk. Many thanks.

[charsie in reply to Trenny]

Try again... Send me an e-mail @ [e-mail] and I will send the form.

Charsie

[julieju in reply to charsie]

Could you send me the list of Pd symptoms. Thanks.

[charsie in reply to julieju]

Just send me an e-mail to: [e-mail] and I will send the form.

Charsie

[soup]

Dear Trenny, from the use of the term "GP" I suspect you are in the UK. Is this correct?

I think you should go to the appointment with somebody who can help you listen to what is being said, help you remember it (because there is always something you forget), and then discuss what is meant when the next load of questions pop into your head.

Ask for a copy of her/his notes to be sent to you.

You will not get anybody to commit to a timescale for your disease progression or even to say what to expect next. Be prepared for that because it is a bit of a shock. This may be the first time you have heard it but each person's condition, symptoms and progress is as individual as they are themselves.

Once the neurologist has named the disease or explained why he/she can't be sure yet what it is, you will want to ask about treatment. Several drugs can be tried if and when you feel that the symptoms are interfering with your way of life. It might be useful if you do a little bit of research on these because the names will be confusing to start with and if the neuro gives the information quickly or wanting a quick decision, you may as well be prepared.

There is an excellent plain English guide to the drug treatments which you either view online at parkinsons.org.uk/content/d...

or you can order it, free of charge from 0845 121 2354. the catalogue number is B013

It is a large booklet but the bits you want will come under Monoamine Oxidase inhibitors, Dopamine Agonists and Dopamine Replacement (So up to page 35 really)

You should be told about the Parkinson's Specialist nurse service in your area and if you are not told about the local support groups you can find them on the web site.

To summarise

1 What have I got?

2 What treatments are there?

3 Where can I get support?

4 When will my next appointment be and what do I do if my health changes drastically in the meantime?

Best wishes

Sue

[kmxsoft]

I'm in the UK and had a DaTSCAN last year.

Earlier advice given about taking someone along with you would be a good move. Personally sensitive information may be discussed (sex life, constipation etc), so you want to take someone that you can trust. I took my wife with me, having been married 35 years she wasn't going to get any surprises revealed.

Note that you can ask for a copy of the DaTSCAN images (also MRI). These won't be of much use to you, however I got mine because as I am doing my family history I thought it might be something that a future generation might find useful - it is highly probable that those images might reveal something which a neurologist doesn't currently look for.

[JohnPepper]

Hi Trenny. I think the obvious question would be, "Why did I have a Dat Scan in order to diagnose Pd? If you would like to know what the common symptoms of Pd are, then go t my website - reverseparkinsons.net and see whether you have several of these symptoms. If you have, then tell her about them, it will help her to formulate her diagnosis.

If you don't have any, or you have just a couple, most of which are fairly common to other health conditions, then that will also help her to make her diagnosis.

Good Luck

John Pepper

[Hidden]

Ask: "Do I have Tremor Dominant form or is it the dreaded, Postural Instability Gait Disorder (PIGD) ?

[anna1060 in reply to Hidden]

RoyProp, Your advice to Trenny to ask what form of Parkinson's she has was like a clap of thunder to me. I had not encountered this basic distinction between TD and PIGD in my few weeks of reading about Parkinson's. I was diagnosed 20 days ago after a DaTscan and then sent on my way until December with a prescription for Azilect. I experience only gait and balance issues and so, I fear, I fall into the dire PIGD form with its non-motor afflictions. My doctor, a movement specialist, did not volunteer much information and no specifics about the DaTscan but I am emboldened now by you and "kmxsoft" and "soup" to ask probing questions and to get copies of important tests.

Thank you kind friends from this thread and others.

[Hidden in reply to anna1060]

Review/read my Posts

[laglag]

I think it's very important to go to a movement disorder specialist, take someone with you (at least the 1st time), and start exercising as soon as possible. I think it's also important to see your movement disorder neurologist every 3 months for at least the 1st year to make sure both of you think that the meds and/or exercising is working and is the correct combination.

[Trenny in reply to laglag]

I am in the UK. Do they have movement Disorder Specialists here?

[quirkyme]

If you are truly diagnosed with PD, please know that exercise is the only thing thought to have a neuro-protective effect, that is, it can slow the progression of the disease. At a PD conference yesterday, my husband and I heard Dr. James Friedman, movement disorder specialist from Providence say this, as well as exercise gurus. So if diagnosed, get involved early with an exercise program. Start a program and work your program.

[cabbagecottage]

At our appointments I use to keep a written record / diary of the things that had been happening since the last appointment . I would make it too long winded but very

pointed . I would hand it to the consultant to read through first and then go through it with him .

That way I didn't forget anything I wanted to tell him .

[redread]

Several comments mentioned a movement disorder specialist and I would say that is very good advice for several reasons. Many neurologists are generalists who see a wide range of neurological symptoms across across the age spectrum. Neurologists who specialize in movement disorders see patients with disorders such as Parkinsons, Muscular Dystrophy, etc. They are very familiar with symptoms that are "typical" and "non typical." Just call your local Parkinsons Foundation and they might refer you to a list. My husband was told that his symptoms looked like Parinsons. Later, they changed the diagnosis to Super Nuclear Palsy, followed by a different diagnosis, "Parkinsonism." The latest neurologist, four years later, is still trying to "diagnose" exactly" what the problem is. Since it looks like Parkinsons, that is how he's being treated. So, you really ahould take someone with you and record notes. Ask the doctor to refer you to physical therapy for gait and muscle movement so you can get a regiman of exercises to do at home that might help with flexibility and balance. My husband was approved for several weeks and the training has proved invaluable.

[Trenny in reply to redread]

Many thanks, all. Some very useful suggestions. I'll report back. I was a Pharmacist many years ago, but things have moved on since then, although I am not sure that knowledge about PD has changed much.

[charsie]

The "List of 100+ Symptoms" is available by e-mailing me @: [e-mail] with "Symptoms" in the title. This will surely help identify specific symptoms.

[Hidden]

Always be clear on what you yourself are going to say tol the neurologist about your symptoms before a consultation. About a week before my consultations I ask my wife for a candid objective assessment on how I've progressed since the last time. Keeps notes, perhaps a diary. There can be a long time lapse between appointments as time goes on. Be in touch with your feelings too. Some neurologists or Parkinsons nurses are good at lifting the spirits, some are not. I was offered voice training early on and a physical exercise course. They also brought me in on some research work that was being done locally. It made me feel I was being taken care of. That was good.

[victoria54]

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