Michelle answers:
I think you can help your Mum by loving her and telling her so often.
I am puzzled by your first sentence of diagnosis by GP. In the US and in Canada it is customary for the GP or Internist to make a referral to a Neurologist for the actual diagnosis. These are the motion disorder or motor neurone specialists who make a diagnosis by listening to the patient, observing, asking questions and eliminating other possibilities often through testing.
From the NICE (National Institute for Health and Clinical Excellence) Parkinson’s disease guidelines:
Table 3.2 Audit Criteria
Referral to expert for accurate diagnosis (no exceptions)
People with suspected PD should be referred quickly and untreated to a specialist with expertise in the differential diagnosis of this condition.
*In suspected mild PD people should be seen within 6 weeks, but new referrals in later disease with more complex problems require an appointment within 2 weeks.
You can read this 242 page document in PDF format here:
http://www.nice.org.uk/nicemedia/pdf/cg035fullguideline.pdf
But rather than waste time with that now – wait until later to look through that book.
Did your mother actually see a neurologist? Did the GP just relay the information from the neuro to her? Did they discuss a line of treatment with her? Did the doctor prescribe for her yet? When is her next appointment? What symptoms took her to the doctor?
What is so important at the onset of Parkinson’s disease is deciding upon a course of treatment. That is usually done with a doctor. A wise doctor discusses the options available, explains the positives and negatives of each treatment line and explains some of the alternative therapies which can be done concurrently. What did your mum’s GP do?
I’m going to suggest that you and your mum go online together and read from several sites below about possible courses of treatment open to her, supplements, exercise therapies, dietary changes or additions that can be made to complement the course of prescribed medication.
Here are some links to begin your journey of discovery:
The Parkinson’s Disease Society
http://www.parkinsons.org.uk/about_parkinsons.aspx
The Parkinson’s Disease Foundation
http://www.pdf.org/
From the Michael J Fox Foundation – today’s news:
http://www.michaeljfox.org/
09/23/2009 – Azilect from Teva’s ADAGIO Trial
“For early-stage PD patients, a 1-milligram dose of rasagiline met all three clinical endpoints for disease modification. However, a 2-milligram dose met only two of three endpoints. Because of this inconsistency, the drug cannot be definitively concluded to have disease-modifying effects. The Michael J. Fox Foundation spoke with Karl Kieburtz, MD, MPH, about how patients should interpret the news”
One reason I list MJFF is that they have expanded the site with more information for the PD patient. They have always had research information because they are doing a remarkable job funding the people who are looking for the parts and pieces that make up an eventual cure.
For general information you can read a variety of day to day issues and explanations of alternative treatments, meds & supplements my husband has taken, exercises for PD and general commentary. Just scroll down the right column index for articles which might keep you informed and reassured:
http://ParkinsonsFocusToday.blogspot.com/
There are symptoms to Parkinson’s disease which you can read about at all of the above sites. Not all patients get all of the symptoms. And when they do, not all symptoms appear in the standard stages.
I suggest you read about the stages first before focusing upon the individual symptoms.
Http://parkinsonsfocustoday.blogspot.com/2009/03/questions-about-parkinsons-disease-part_3744.html
Individual Symptoms – remember you mum’s may be a bit different now:
http://parkinsonsfocustoday.blogspot.com/2009/03/questions-about-parkinsons-disease-part.html
One of the most important things you can do is to reassure your mum that you love her and will be there for her – this doesn’t mean that you skip school – neither one of you needs that. But that you will learn with her about the disease, you will share your fears as well as your triumphs when a treatment helps. You will exercise with her if she needs the companionship. And that she is a very important part of your life.
Your mum may become depressed. This is both a symptom and a side effect. The most important thing a PwP needs to know is that their life and presence has value. Your mum’s PD (if that is indeed what she has) may progress very slowly and so some of the fears you both have, may not be realized for many, many years if at all.
Reassure her that there are good treatments and possibly cures in the pipeline. If she can take medications which can delay the progression, if she adds the powerful antioxidants such as CoQ10. Vitamin E and a few others to her regimen, if you can work our an exercise schedule, if you read and practice good nutrition for PD, there will be hope.
Addendum: yesterday the results of the ADAGIO study of Azilect, rasagiline were announced – it might be worth reading them and printing out for your mum’s doctor:
http://www.tevapharm.com/pr/2009/pr_872.asp
This happens to be one of the PD meds which my husband takes for his Parkinson’s.
