New update from Anne re: Neuro Patch and how to obtain them from UK.  Please note disclaimer from Parkinson’s Journey re: our endorsement in last update.  Thank you to Anne for the most recent update.

Not long ago a PD friend was asking about Neupro Patches. This comment came in yesterday and may be of interest to some. Please note that Parkinson’s Journey is not endorsing this method of acquiring prescriptions or that you should begin treatment using this drug without a doctor’s consent. We are merely passing the information along. However, if you do obtain the medication, please send us an update of your experience of the process. As Anne, our updater says… Good luck! -Sherri Woodbridge

You can also get Neupro from UK. The name of the pharmacy is Asset Chemist and contacts are Mr Yomi or Mr Leke. Your best bet is to call them direct 011-44-1375 846 316. You can also e-mail them Customer Services@assetchemist.co.uk. Remember the time – England is 5 hours ahead. They are open seven days a week. Allow delivery time from 7-14 days. Both gentlemen are wonderful to deal with and much cheaper than the meds from Isreal. Neupro is manufactured in Belgium (I think) and so all Neupro is the same. If you get it from them, be sure to ask them about the expiration date. Expiration date is not as long as when Neupro was available in US. And the meds will arrive with jell coolent. Ask them also to e-mail you the tracking number. We live in Ohio and the last meds went somewhere to TN — why? Who knows? Anyway they arrived and my husband is using them. Good luck! -Anne

I (Sherri) received an email from a fellow PD’er which had this to say about the drug Haldol (Haloperidol):

“I attended a dinner meeting where a prominent Toledo Doctor spoke and I [chatted] at length with him following the presentation. He urged EVERYONE diagnosed with Parkinsons Disease to contact EVERY doctor they see and add HALDOL (Haloperidol is a typical antipsychotic drug) to the list of meds they are allergic to. He said when asked what the side effects are, tell them “IT WILL KILL ME” and that should get medical staff attention. Said it ‘blocks’ the dopamine and the patient “FREEZES”, among other life-threatening reactions.”

After researching the drug and it’s interactions with PD’ers, this is what I found:

(from www.drugs.com) – Haldol may cause tardive dyskinesia—a condition characterized by involuntary muscle spasms and twitches in the face and body. This condition can be permanent, and appears to be most common among the elderly, especially women….

Side effects may include:
Breast development in men, breathing problems, cataracts, constipation, drowsiness, dry mouth, insomnia, involuntary muscle contractions, skin reactions, tardive dyskinesia (see “Most important fact about Haldol”), tightening of the throat muscles, weight loss…

You should not take Haldol if you have Parkinson’s disease or are sensitive to or allergic to the drug.

(from www.parkinsons-information-exchange-network-online.com / The P-I-E-N-O Parkinsn’s List Drug Database) – Haloperidol is contraindicated in patients with Parkinson’s disease. The dopamine blockade from haloperidol will dramatically worsen the preexisting Parkinson’s disease, possibly incapacitating the patient.

(from www.healthcares.net) – Some drugs given for psychosis, such as haloperidol (Haldol) or chlorpromazine (thorazine), may cause parkinsonism.

If that isn’t enough to warn you, here are some ‘less severe’ side effects: Breast development in men, breathing problems, cataracts, constipation, drowsiness, dry mouth, insomnia, involuntary muscle contractions, skin reactions, tardive dyskinesia (see “Most important fact about Haldol”), tightening of the throat muscles, weight loss.

Your choice, but PJ is strongly recommending you just ’say NO’. Loudly, if you must.

-sherri
(Thanks to Becci Green for bringing this to our attention!)

A fairly new study has shown that people who have big bellies (not from pregnancy) have an increased risk for Restless Leg Syndrome, otherwise known as RLS.

RLS is a neurological condition/disorder that causes people to have an irresistible desire to move their legs and not because they want to go jogging. RLS is diagnosed by four criteria. They are: strong urge to move your legs, the symptoms worsen when at rest, improve when you become active/move your legs/walk, and symptoms are worse at night. It is understandable and goes without saying that someone with RLS could have difficulty sleeping.

RLS is known to be one of the many blessings (note sarcasm) of Parkinson’s disease for some patients. Along with the medications that cause drowsiness, there’s RLS for some, creating an inability to sleep. The two don’t mix well.

Is there anything that can be done about RLS? In a new study recently published by HealthDay News, it showed that obesity played a key role in the increase of risk for having RLS, according to lead researcher Dr. Xiang Gao. He went on to say that a person with a larger waist have a sixty percent increased risk of having RLS.

Along with other data gathered from research, Gao noted that being overweight could contribute to the development of RLS. In the study, over 85,000 people took part. Among those involved, almost one-and-a-half times greater was the risk of having RLS if obesity was a factor.

Obese people have lower dopamine receptor levels in the brain. For those with Parkinson’s disease, this could have a two-fold effect in relation to RLS. One, it’s annoying and two, if you’re overweight, you’ve increased the likelihood of dealing with RLS at some point along the PD trail.

Now, before you go get the ice cream from the freezer to fend off frustration, if it’s suggested that, according to this study, obese individuals have a higher risk for RLS, then it must be said losing those extra pounds would play a part in preventing the ever-annoying RLS. Just another good reason to eat healthy and be as fit as you possible can.

It is not for certain that being obese plays such a large role in having RLS, but if there’s a possibility of warding off something as irritating as Restless Leg Syndrome, it’s worth trying to lose those extra pounds around the middle.

Since RLS has a direct correlation with decreased dopamine, it is easy to see why people with PD are or can be more susceptible to RLS. So, the next time you sit down to relax and your legs start going crazy on you, get up and walk around. Just make sure it’s not a walk to the fridge.

In a recent article I read, the author brought attention to the fact that a review of people who drank between two to nine liters of cola a day are susceptible to the disease known as Hypokalemia. Nowhere in that article did it state what Hypokalemia. Now, you may know what that is, but I didn’t and so, I went researching.

Hypokalemia is a condition where there is a low concentration of potassium in the blood. People with this condition have vital muscle functions when there is a drop in the levels of their blood potassium. Mild weakness to paralysis are in the range of symptoms.

Researchers in Greece conducted the review. They had two patients in their review group who they admitted to the hospital. Both were pregnant and showing low potassium levels. Both drank anywhere from one to seven liters of soda a day. That’s a lot of soda. One was suffering from a heart blockage and low potassium levels while the other was suffering from muscular weakness. (My first reaction was, what in the world is a pregnant woman doing consuming any caffeine product at all, not to mention in those quantities?! Have they not heard what caffeine does to an unborn child?)

Upon giving up their soda habits, both recovered. It is noted they also were given oral or intravenous potassium. It was stated that glucose, fructose and caffeine could contribute to the condition. These three ingredients are the most common found in cola.

Okay, so you may ask, what does this have to do with Parkinson’s?

Maybe nothing. Maybe something.

Cola-induced hypokalemia is said to not have been determined as of yet. In the review, however, it was thought to have extreme impact, due to the caffeine and fructose levels.

While mild hypokalemia usually has no symptoms, moderate hypokalemia symptoms might include constipation, muscle weakness, cramps during exercise, thirst, fatigue, and/or leg discomfort. Since severe symptoms are dangerous, it is important to talk to your doctor if you think you may have low potassium levels. You can replace potassium lost during heavy exercise by drinking sports drinks that contain electrolytes.

Potassium-rich foods include sweet potatoes and baked potatoes, as well as tomato paste, tomato juice and tomato sauce. Beans, soybeans, lentils, yogurt and low-fat milk, tuna, halibut, rockfish, cod, bananas, peaches, prunes, apricots, cantaloupe, and spinach are also high in potassium. A healthy diet will include these foods and the need for supplements will not be necessary.

My thought is this: If cola could potentially have this effect on a review of people in Greece, I wonder what significance it could have in PD patients who are already susceptible to leg cramps, restless leg syndrome, other muscular aches and pains. It may be worth cutting out the soda habit for a month or so and replacing it with bananas, high in potassium, and see if the muscle fatigue and pain decrease. Might be worth a shot.

Journeying with you,

Sherri

Dystonia.

Another neurological movement disorder. Dealing with sustained muscle contractions that cause twisting and repetitive movements or abnormal postures.

What’s this got to do with Parkinson’s disease? It can be part of PD.

Symptoms can include disturbed sleep patterns, tiredness, depression, poor concentration, change in vision, and more. Normal activities can be more difficult to carry out. Sounds like other diseases as well, right? That’s why it is extremely important to not self-diagnose. Neurologists and Movement Disorder Specialists are physicians specializing in various areas such as dystonia and PD, with the ability to clearly differentiate the similarities of diseases with commonalities such as these.

As well as the symptoms listed above, dystonia tends to lend itself to continuous pain, cramping and muscle spasms. Penmanship may become altered, dropping items becomes common, turning pages becomes a struggle. The list can go on. Dystonia can mimic PD in various and assorted ways and diagnosis can be difficult depending on how the disease manifests its symptoms, which are quite similar to not only PD, but other neurological disorders as well.

Focal dystonias are the most common types of dystonia. Cervical dystonia affects the neck muscles, whereas blepharospasm is known to affect the muscles around the eyes. When the jaw and tongue muscles are affected, it is known as oromandibular dystonia. The voice can be affected, causing a ‘crackling’ sound and known as spasmodic dysphonia.

When a patient suffers from both blepharospasmodic contractions and oromandibular dystonia, it is referred to as cranial dystonia, also known as Meige’s syndrome.

Many drug treatments have been successful in managing symptoms, but recent treatments using botox have proven extremely successful for 3-6 months when injected into the affected areas. Many PD treatments are used for treating dystonia and are quite promising in helping the patient to cope with the disease, including deep brain stimulation.

While some cases can worsen over time, some can almost be mild in their degree of symptoms and their affects on the body. What may seem like an odd treatment may actually be one of the best received and most helpful… a big hug.

Proven to be scientific by Temple Grandin and manufactured by Therafin Corp., The Squeeze Machine gives the same result, but at a much higher cost. However, it has been proven that when encased in a tight ‘bear hug’ the tension and tightening of the contracted muscles are often released when squeezed tightly.

There aren’t many diseases (if any) that respond to such a treatment. The next time you’re struggling with stiffness, spasms, and pain associated with PD or dystonia, get a loved one to give you a tight bear hug and hold you for a few minutes. You’ll feel better not only physically but in every other way as well. So will they. There is healing in a hug for everyone involved.

Journeying with you,

Sherri

We have recieved several questions about Neupro and when it might be available again in the US. We’d like to share what we’ve found.

An internet search gave virtually no info on the future availability of this product again in the US. We did hear that the manufacturer had determined the cause of the cystallization and would recommend different storage conditions to prevent this. Short of that, a friend who also was finding great benefit from Neupro, said there is a recruiting clinical trial for it. You can find information about it at Clinical Trials. Perhaps they might know more and you might convince them to have mercy on you or your loved one who needs this medication to give it to you/them in the study. Let us know any feedback! Thanks.

P.S. Remember we are just patients with Parkinson’s seeking to help when we can by relaying information we find or hear that is most accurate. If you have a concern about anything on this blog, please contact us. We appreciate feedback and will gladly correct any erroneous material brought to our attention. Thanks!

Stalevo

Mirapex has side effects. Most all drugs do with one person or another. Everyone reacts differently to medications. You can watch a recent interview with Michael J. Fox and he will tell you that most of his rocking movements are due to drugs he has taken. That is part of having PD.

With Fox, you can see the effects. Yet, there are some side effects from drugs that go unnoticed and for most, these are physical reactions. Nausea, headaches, etc., but what about a side effect that no one wants to talk about? What if the medication you were taking was what was causing the bad habits you have begun and you were too ashamed to tell anyone about it? What if no one believed you had never even had an interest in the silent sins you were continually focusing on? Things like gambling. Things like sex and pornography.

Mirapex is becoming more widely known for the ’secret’ side effects that are running rampant in its patients. The worst part is – these people are suffering, blaming themselves for their broken relationships and their downfalls. They blame themselves for losing their homes and do not even realize that a drug may have a very large part to play in the behavior that causes the consequences.

The internet, while being a trap to bad habits, can always be a shelter for some who do not know where to turn. I have a website that focuses on encouraging PD ‘recipients’ (as I like to call them) and offering hope. I am on Facebook, constantly inviting others with PD to be a part, in either following, contributing, or writing in if they need a shoulder to cry on or a listening ear. I consider it a ministry.

I had a fellow contact me on Facebook the other night and share his story – one that is more common than not. The drug was faithfully ingested at the proper times and intervals. However, unbeknownst to him, something in his brain was reacting in a negative way to the Mirapex. He began fantasizing about women. He began looking at pictures of pornography.

For some, it stops there. For some, they end up losing a lifelong relationship built on trust and commitment and find it has disappeared and has been replaced with Parkinson’s and a drug they continue to take because they don’t know any different or to ashamed to admit.

Each time I see my neurologist, he asks me if there are any changes. I do not take Mirapex anymore (due to its decrease of effectiveness), but the drug I do take (Requip/Requip XL) has been known to mimic Mirapex’s downfall of usefulness.

PD is hard enough to deal with without the issues of serious side effects. We are not talking about a headache. We are not even concerned with nausea with this baby. We are talking about relationships destroyed, jobs lost, lives changed forever. Not from PD, but from what begins to happen when our drug therapy is altered.

It is because of things such as this that it is important to faithfully and regularly monitor any reaction to any drug. Record any change that occurs, whether physical, mental, or emotional. Some drugs alter moods. Write it down. If it goes on for more than a week, do not hesitate to call your physician. If a habit begins to form AFTER beginning a new drug, do not waste time consulting your doctor about the new behavior. It is quite possible that it could be linked to the new medication. When you pick up your new prescriptions, ask the pharmacist about the side effects. Most pharmacies now include a flyer with the side effects and information on medications.

Life is too short to suffer needlessly. We have already been nominated for receiving PD, but we do not have to live with what some of the medications are offering us, as well.

Comtan