DYSTONIC STORMS

As my husband has been experiencing frequent episodes of tiring muscle contractions that last from hours to days and make it impossible to eat ,sleep and even talk This topic is about dystonic storms. Hospitals can help but we found the first time they presumed it was just normal parkinsons movement and made us wait with everyone else. Being unable to wait it out we went home.On this recent visit we took a discription of dystonic storm and they copied it and took us through instantly and started to find out what could be given to help stop the contractions and kept him overnight till they contacted his neurologist.

Parkinsons complication

Dystonic Storm (Status Dystonicus)

This rare complication of dystonia deserves special mention. Dystonic storm is a life-threatening complication of severe dystonia. This is characterized by relentless, sustained, severe dystonic muscle contractions.Etiologies vary, but can include DYT1 dystonia, medication withdrawal in a variety of forms of dystonia, PKAN, and baclofen pump failure. Prompt diagnosis of this condition is essential. Patients with dystonic storm should be managed in an intensive care unit. They may develop hyperthermia, metabolic derangements, and rhabdomyolysis with acute renal failure. Treatment with intravenous benzodiazepines or general anesthetic agents may be required. In extreme intractable cases, intrathecal baclofen or even deep brain stimulation of the internal globus pallidus may be required.

Following are discriptions of dystonic storms

http://www.docstoc.com/docs/89783352/Opening-slide  PAGE 9 AND 10

Donations for Parkinson's

I have been looking for links for donations and have found these ..you can donate or start an event to raise funds for Parkinsons research.

Michael J Fox foundation donations
Shake it up foundation Australia donations

World Parkinson's Day Is Held Annually on April 11th

The day is intended to boost awareness of the disorder and to spur new research and treatment innovations. It should be a day of advocacy for PD patients and their families. I am mentioning it now so that you can plan something special for that day. Here are some ideas to celebrate World Parkinson's Day:

• Start a local PD support group for PD patients and their families.
• Write a letter to your local newspaper to boost awareness of the disorder.
• Call your congressman or email them urging them to support PD research.
• Urge the FDA to streamline regulatory procedures to bring PD treatments to market more quickly.
• Contact a national advocacy group like the Parkinson's Action Network and become a supporting member.
• Wear a red tulip (the official flower of world PD day) in your lapel and ask your friends and family to do so as well.

APRIL IS PARKINSON'S AWARENESS MONTH

Celebrate.  Commemorate.  Educate.

People living with Parkinson’s disease know that every month, for them, is Parkinson’s Awareness Month.  April has been traditionally declared Parkinson’s Awareness Month, so it’s important to use this month to reach out to friends, family members, co-workers, and people in your community to help them better understand what it’s like to live with Parkinson’s disease.

Below are some tools you can use to help educate your local community about Parkinson’s disease, and encourage local governments to issue their own proclamations supporting our mission to find a cure. 

FIND OUT MORE HERE To spread the word and raise awareness of Parkinson's

PLANNING FOR HOSPITAL STAYS

While going into hospital is never very pleasant, there are a few things that you can do to make things easier.

• If you are going in for an elective admission, where possible talk to the admissions coordinator or the Charge Nurse of the ward you are going to be admitted, or Hostel or Nursing Home Manager if you are going in for respite or for a longer stay.  Let them know what medication you are on and the times that you normally take your medication. This will ensure that hopefully the hospital will have ordered in your medication so there is a supply on the ward for you (if you are going into a Private Hospital you will probably be using your own supply of medication anyway).
• When you go in for your admission, even if it is an emergency admission, take your mediation in with you, and always have an up to date list or what you take and when you take it.
• If you have your medication in a Dosette box take the original tablet containers in as well.  If it is in a pack filled in by your Pharmacist, just take it along with any list that the Pharmacist may have provided you with.
• Be aware that many hospital and residential care staff will not have a thorough knowledge of Parkinson’s and it will probably fall to you to explain about symptoms and medication - not something you want to do when you are feeling unwell or anxious.
• Ask whether it is possible for you to self medicate.  Many hospital wards have self medication policies and you may be able to manage your own medication.
• Be patient, staff are often busy and at times may be held up at an emergency.
• If you have a medication timer/alarm take this in with you, and use it to remind you when you need to take your medication so you can ask for it.  If you have a  named or primary Nurse, you can ask them to hold onto it so it will remind them when to give you your mediation.

Some people feel that it is useful to have a going in to hospital kit ready (in a similar way that you would have your suitcase packed if you were having a baby).

In it you should include:

• Contact Details for your Neurologist and General Practitioner.
• An up to date list of your medication and times you take it.
• A list of medications to be avoided by people living with Parkinson’s .
• Some General information on Parkinson's.
• Some information on your particular symptoms (eg. Information on Freezing, Hallucinations or Dyskinesia). 
• In the US states the (Aware in care kit is available ) free and contains most items needed for a trip to hospital                         order here

Drug interactions with parkinson's medication

What is Drug Interaction?

Medicines are used to treat certain conditions or illnesses, but when two or more medicines are used simultaneously, they may interact with each other and cause complications or unwanted side effects. Drug interactions may occur with prescription drugs, over-the-counter (OTC) medicines, herbal remedies, or dietary supplements, so it is important that the patient realizes the dangers of mixing drugs without consulting a doctor.

Parkinson’s Disease Medicines

The drug therapy most commonly used in Parkinson’s disease usually consists of the following :

• Levodopa
• Levodopa + peripheral decarboxylase inhibitors such as carbidopa and benserazide.
• Dopamine receptor agonists – pramipexole, ropinirole, and rotigotine.
• MAO-B inhibitors – selegiline and rasagiline.
• COMT inhibitors – entacapone
• Anticholinergics – benzhexol and orphenadrine
• Amantadine.

Drug Interactions with Parkinson’s Disease Medicines

Levodopa

Since this is the most widely used medicine in Parkinson’s disease, its drug interactions should be understood by all Parkinson’s patients. Certain medicines decrease effectiveness of levodopa hence the dose of levodopa may have to be adjusted if used together. These include

• Anticholinergics – sometimes used in addition to levodopa for treatment of symptoms in Parkinson’s disease. Over-the-counter cough and cold medicines contain anticholinergics such as diphenhydramine, chlorpheniramine, and phenylephrine.
• Antispasmodics used for treating stomach or uterine cramps also contain anticholinergics such as dicyclomine and hyoscyamine.
• Anti-allergic medicines (like anti-histamines)
• Antiepileptic drugs such as phenytoin
• Sedatives such as diazepam, lorazepam and alprazolam.
• Multivitamins, specially vitamin B-6 or pyridoxine, and minerals such as iron.
• Tricyclic antidepressants such as amitriptyline
• Metoclopramide – used to control nausea and vomiting.

Certain medicines help to increase the effect of levodopa. They include

• Medicines containing acetaminophen, used for pain, headache, and fever.
• Antacids and other medicines containing aluminum, calcium, and magnesium.

The above medicines should not be used to enhance the effect of levodopa.

Levodopa may potentiate the action of antihypertensives, causing excessive lowering of blood pressure when used concurrently. Levodopa may cause severe hypertensive reactions if taken by patients treated with MAO (monoamine oxidase) inhibitors such as furazolidone or procarbazine within the last 14 days.

Other Parkinson’s Drugs

Similar drug interactions are possible with all other medicines used in Parkinson’s disease. In addition,

• Alcohol intake may cause CNS depression when used along with Parkinson’s disease medicines.
• Antibiotics such as ciprofloxacin, norfloxacin, and ofloxacin may cause drug interactions with pramipexole, ropinirole, or rotigotine.
• Entacapone may react with antibiotics such as ampicillin, erythromycin, and chloramphenicol.
• Narcotic pain relievers such as codeine may react with entacapone or other drugs.
• Quinine or quinidine may interfere with renal clearance of amantadine.

Various other drug interactions are possible and you should consult with your doctor before taking any other medication or supplement, whether an OTC (over-the-counter) medicine, scheduled drug or a herbal remedy.

The Misunderstood Mask of Parkinson's

 I overheard my friend say “she still has that Parkinson’s stare” when describing me on the phone to her sister. My feelings were hurt, particularly when I’ve made progress in managing the motor symptoms of Parkinson’s. No matter how hard I try to smile and look pleasant, my expressionless Parkinson’s mask persists. Sure I can smile when someone is taking my picture, but it’s too much multi-tasking to remember to smile all day. My dead-pan Parkinson’s face and stare are frequently misinterpreted. I have been accused of being angry when happy, sad when gleeful and bored when passionate. People think I’m in chronic bad mood with “that frown on your face.” Normal people just don’t get it. But Peter Dunlap-Shohl does get it.

The Mask

Article and Cartoon by Peter Dunlap-Shohl, Copyright © 2008

Anyone can see some of the damage Parkinson's disease visits on those who have it. Tremor and shuffling are painfully obvious. But there is another set of problems spawned by what you don't see.

With the loss of control of facial muscles we also lose a significant chunk of our ability to communicate. Instead of expressive smiles and frowns, we present a deadpan, blank mask that unnerves others.

Much of the sense of what we all say is not in the voice or words, but in the subtle visual cues and signals the face sends. We all interpret speech in the light of what we read in a person's expression. People with Parkinson's can slowly lose the ability to enhance communication this way without even knowing it.

Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed.

The recipient looks at the cold, expressionless type on their screen, and without the guidance of the visual and tone cues that we all use to correctly interpret meaning, assigns meaning that isn't there. Often the missing meaning is misread, and the interpretation negative.

Then consider the way we get around this problem. We insert little faces that clarify our intent ;-)

This is exactly what those of us with Parkinson's Disease are not doing in face-to-face conversation. We are sending spoken email, without the emoticons :-(

Instead of this :-) , or this :-( , what we send is this :-| . Nothing but :-|

To complicate things further, we are often unaware that we are not sending the proper cues. And worse, as people look for these cues and cannot find them, they get frustrated, confused and eventually angry.

Once while taking care of some support group business at a bank with my friend Lory, I sensed rising irritation in our banker. I was at a loss as to the cause, but then realized she was interpreting our Parkinsonian lack of expression as anger. I stopped the rapidly deteriorating meeting, and explained our featureless expressions.

The change was immediate and dramatic. She went from grim to jovial in seconds flat. And Lory and I, having solved the mysterious problem, were elated :-|

MEDICAL ID JEWELRY

click here or here For Medical ID accessories for all your needs wristbands,keychains,necklaces,usb this is just a few of the hundreds of pieces available for alerting others of your condition or storing information for responders to an emergency.
  

YOUTUBE TRIBUTES UNITED FOR PARKINSONS

A WONDERFUL TRIBUTE UNITED FOR PARKINSON'S  BY (SHAZ)
All pictures contain real patients with parkinson's.

And this one  BY PARKINSON'S UNITED MOVEMENT to  all the carers,
friends, family and support team for being their come what may.

Day by day parkinson's diary 2012

The parkinsons diary By Nicole Findlay

An  all purpose diary for people with Parkinson's and their carers

• Record medications,rate feelings through the day,practice fine or gross motor skills. You will find this diary a very useful tool to help make  each day a little easier. Profits from the sale of this diary will go towards Parkinson's disease research.