New Drug Approved for PD Patients with Orthostatic Hypotension

This recently in from:

Yesterday the U.S. Food and Drug Administration approved the drug Northera — the brand name for droxidopa — to treat orthostatic hypotension in Parkinson’s patients.

Learn more about the FDA’s decision.

This approval after a lengthy review process is a true victory for people with Parkinson’s experiencing this common and debilitating symptom. Orthostatic hypotension is a sudden drop in blood pressure when standing, which can cause dizziness, falls and injury.

Since taking Northera can raise blood pressure when lying down, users are cautioned to sleep with their head and upper body elevated.

 

 

Think Big!

Think Big!

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I was put on the trail of a physical therapy program by one of our Parkinson's Journey Facebook group members this morning. The trail traveled: LSVT's Think Big Physical Therapy Program.

Our member writes: “I don't know how many members of this group are in the earlier stages of PD but my husband's neurologist suggested that he try this new therapy called LSVT-BIG. It is a very intense therapy but goal oriented to each individual. I live outside the Philadelphia area and there are only 2 therapists that are certified in it so far in my area but we got my husband in with one of them and he has been attending for 3 weeks. I can't get over the difference it is making in his ability to do things such as dressing himself, his handwriting, his typing, even putting his coat on by himself. He is thrilled with the results as am I. It might be well worth looking into in your area.”

So, I went to the LSVT site. One word: amazing!

Their purpose, as taken from their site: “Today, LSVT Global specializes in the development of innovative and effective treatments for the speech communication (LSVT LOUD™) and physical/occupational therapy (LSVT BIG™) needs of individuals with Parkinson disease as well as aging and other conditions including stroke, multiple sclerosis, cerebral palsy, and Down syndrome. Our mission is to provide unlimited access to proven treatments for all who can benefit.”

LSVT offers training, certification, seminars/lectures, DVD's and other resources through their website.

When you watch the numerous videos of this amazing program, you can see why it is rapidly gaining attention. The voice training may be more familiar, as it's been around for a whie, but the physical training is newer and on the rise.

So do that. Read up on it. Watch the videos.Talk to your doctor. Check and see if there's a certifitied therapist in your are. Then let us know how it went for you. I think it's a win/win situation.


LSVT Website Video Page

Find a clincian certified in LSVT BIG

YouTube BIG Video 1

for the voice: YouTube BIG Video 2

YouTube BIG Video 3

LSVT Website

 

Taking Drugs for Parkinson’s Disease

Don't you get tired of taking medicine? I mean, you wake up and you're shaking. You have a shower and can't shower the way you used to because your body isn't listening to what you're brain is telling it to do. You get dressed – or attempt to. Other people we meet in the course of the day smile and say, “You look so good. You don't even look like you have Parkinson's.” So what is Parkinson's supposed to look like anyhow? Recently, a man shared his story flippantly in the local newspaper, saying that at times he is so out of control people think he's trying to choke himself. I think he may need a different doctor, new or different drug at least until he can get some sort of control with his disease and accidentally kill himself.

You've heard before perhaps, that Parkinson's looks different on each person. It's like putting the same shirt with the same print in the same size on five different people. It's going to look different on each and every one. No one will wear it the same. And no one wears the same disease the same, either. So – the people we will encounter throughout our days will say we 'look good'. That makes them feel comfortable. At the moment, there's no shaking for them to stare and wonder all the things they wonder about when we are shaking. Things like 'Do they do it at other times for attention? Have they been misdiagnosed?' and/or 'Are they over/under medicated?'. In all probability, all three scenarios could be a reality, but if they're on medication for Parkinson's disease, the probability of their physical issue being PD is almost certain if they are responding positively to certain drugs they will have to be on. Whether we 'look good' or not, on the inside there is a raging battle going on. A battle to claim my spirit, my will and mind, my joy, my calm and my peace. And on days like today, it gained a bit of ground. Yet, on days like today I also remind myself that I have a God who sees the inside. The places that no one else can see. The places that don't look or feel so good. He sees the battle and He calls for a reprieve – a time out – if only for a moment. A reprieve from those who tease at our expense. A reprieve from stares that you ignore, knowing they stare out of ignorance, like – I must admit – I once did. A reprieve from the weariness, the tiredness, the pain. A reprieve from discouragement and sometimes despair. However, there is no reprieve from the plethora of drugs to be taken and so you take the pills. Three red ones, four orange, thirteen white, one yellow… let's see – we're up to 23 a day now, more if you have pain or a headache. Sometimes they make you tired and cranky and sometimes they make you sick and sometimes they make you sick and tired. And sometimes… they make you feel good. I wonder… If I didn't take my PD pills, would I not 'look good' but feel better? Or would I 'look great' and feel worse? Or – maybe I'd start choking myself like the man in the newspaper. I don't know. I do know that I don't like taking all that medicine, but I do like being able to live life to it's fullest – whatever that might mean for me – and if taking those pills help, then I'll swallow number thirteen, quit complaining, and enjoy an afternoon nap. After all, the house is quiet now and empty, being that I scared everyone away by being cranky.

What Happens Next: Diagnosed with Parkinson’s Disease

If you're one who has sat in the doctor's office and heard the statement, “You have Parkinson's Disease”, eventually you will ask (whether out loud or a muffled scream), “What?!?”

Parkinson's Disease is a disease of the nervous system. At the base of the brain lies the basal ganglia. This little guy begins to degenerate in a PD patient's brain. Dopamine, a chemical found in the brain, helps control muscle movement. In a PD patient, the dopamine begins to put the brakes on production of the dopamine. An explanation, given in layman's terms of how PD affects the brain, is given by Dr. Anthony Santiago, MD, a neurologist /Movement Disorder Specialist who practices in Spokane, Washington. He stated that the brain is like the engine in a car. It needs oil to work properly and not quit. Dopamine is to the brain what oil is to an automobile engine. The neurologist is the mechanic and has the job is to find the right combination of medications (oil) to get the brain (the engine) running its best. Parkinson's Disease (PD) is different for each patient. Each person is made up differently, therefore a disease of any sort is going to interact with its benefactor in different ways. For example, the well-known Young Onset Parkinson's Disease (YOPD) patient, Michael J. Fox, acquired PD at a very young age. Another well-known PD patient, Mohammed Ali, acquired the disease later in years. PD and YOPD are differentiated by age. PD is known to affect people over the age of 50 and YOPD is usually reserved for those who are affected under the age of 50. The symptoms of PD may differ from one patient to another, so the diagnosis, which can be known to mimic Lupus, Multiple Schlerosis, Essential Tremors, and others, can often take time. The diagnosis is clinical and best done by a neurologist or a movement disorder specialist. There are many factors that are noted in the diagnosis. They include (but are not limited to) arm movement while walking, facial expression, vocal level, tremors (shaking), etc. The surprising thing about PD is the number of symptoms that are actually attributed to it. PD is known to cause depression (noted to be one of the very first signs), drooling, stiffness, achiness, loss of movement, shaking/tremors, restless leg syndrome (RLS), poor balance and coordination, etc. It's easy to see how this disease can be misdiagnosed. Once an accurate diagnosis is made (usually by a neurologist), medication(s) will most likely be prescribed along with regular, follow-up exams. Each PD doctor will begin treatment differently with his patients, depending on the severity and progression of the disease. Common brand name drugs prescribed for PD/YOPD are Mirapex, Sinemet, Stalevo, Azilect, Comtan, Requip and the list goes on. Your doctor will tailor your treatment to you specifically, depending on your symptoms/condition. The important thing to remember is that if a new drug is added and doesn't sit well with you (nausea, dizziness, etc), get in contact as soon as possible with your physician. There are so many alternatives available that it's not worth battling side affects. Find a support group. This will ward off feelings of isolation, loneliness, fear, and more. Support groups can be tremendous at doing what they are intended for – supporting you. Check with your doctor for information on a group near you, or surf to http://www.parkinson.org/ on the internet for resources. Support groups are also available online. Two excellent sites are Patients Like Me and Daily Strength. There are also many blogs (www.parkinsonsjourney.com; http://movementdisorder.dirtybutter.com/; http://mobmsa.blogspot.com/;www.mypdblog.blogspot.com) written by PD'ers that offer encouragement and support as these PD patients and/or caregivers deal with their day to day journeys with their disease and encounter (or have already encountered) similar struggles. Sharing the news with others that you have been diagnosed with PD can be hard – on them and you. For many it's a relief to finally have a name to all that's been going on in their body. They've finally be affirmed it's not all in their head (well, to a degree!). However, children will be curious why you appear to be shaking and wonder why. A good resource for little ones is a book by Kay Mixson Jenkins entitled, “Who Is PeeDee?” There are several books written on symptoms, exercise, lifestyle changes and more on this disease. A good, basic one to start reading when first diagnosed is “100 Questions and Answers About Parkinson's Disease“by Abraham Lieberman. This book is not only beneficial to the patient but for the caregiver as well. Remember… each patient is different and there may be many symptoms listed but it's possible you won't encounter them all or to the degree another patient has. One of the best ways to deal with your diagnosis is to find out about this disease, but be careful not to over stimulate your fears/concerns by checking out every internet site, book or piece of information that you can get your hands on. Reading a story of one patients' progression may look completely different than how yours may develop and you may cause yourself undue concern. Look for alternative ways of doing things if they're becoming more difficult (zippers, buttons, shoe laces). PD teaches humility – embrace it. Join a PD choral group to strengthen your vocal cords. Check out the local gym or senior center and see if there are any low impact exercise classes you can join to keep those muscles in their best condition. Walk – it's one of the best things you can do for yourself. Have a sense of humor. Laughter really is the best medicine and you're going to find much to laugh at. Take one day at a time and enjoy every moment. in every movement. Whether you've been diagnosed or not, life really should be lived like that anyhow.

Diarrhea or Constipation – Which Do You Prefer?

You've seen the commercials about diarrhea. It's not something to be embarrassed about, but we try to make light by calling it something else – the runs, the squirts, the trots, Montezuma's revenge, or the polite word – dysentery. Yet, when it comes down to it, they all mean the same thing to each of us: RUN!!!

The blessing of Parkinson's disease, is we don't have to deal with the trots or the squirts as do others. We get to deal with that other word we don't want to talk about: constipation. You know, that plugged up feeling you get where you have to poop but you can't. And for people with PD, this can be a real stopper. When you're at this place, you want to get some of that miracle stuff they advertise and be one of the “thousands who poop with ease.” Ah yes, those were the days. Now, if only once in a while, you long for the trots.

What to do? There is no miracle pill and you don't want another drug and as user friendly as they want you to believe Metamucil is, if you've got PD, get rid of it. For whatever reason, it hardens once digested in a person with PD and will only make things worse. Miralax is a good substitute, is a clear liquid, is fairly inexpensive, and is recommended by doctors to ready their patients for colonoscopies. And, it is safe.

Your diet plays a crucial part in this war against being plugged up. Stay away from white breads, pasta and rice, if possible and focus on whole grains and don't forget what you're mother told you: eat your fruits (figs and dates are great) and veggies. Lots of them. But – even maybe more important is WATER. Drinking eight or more glasses of water a day is more than enough to stay hydrated but is the minimum you should be drinking to help maintain softer stools.

Constipation also affects medications. It causes the stomache to empty slower, disallowing the pills to enter the intestine where they are absorbed more efficiently. Constipation has also been linked to bowel cancer and really – who wants that? PD is enough.

Other things you can do is walk each day as that has 'un-constipational' effects (did you like that big, made up word?). Also, try rocking when seated on the commode ( a polite way of saying the toilet or the john), and I don't mean like in a rocking chair. Lean to the right and then the left slowly, as that helps to move the muscles associated for making a good poop. I also saw a video of a woman demonstrating how to poop easier (she was just demonstrating, not actually pooping) and she suggested rubbing your lower back to try and help things along.

Whatever you do, don't take constipation lightly. Tell your doctors. Recently I spoke with a woman who knew a woman with PD who was just diagnose with colon cancer and it went undetected for some time, as she and her neurologist thought she was just having constipation issues. Perhaps. But at some point, that changed.

So keep on top of your bowel movement situation. If it changes, tell your doctor. If you're struggling, tell your doctor. If you're in pain, tell your doctor. If you can't poop, tell your doctor and don't be embarrassed. If you can't seem to broach the topic, just print out this article and hand it to him/her and say with pleading eyes, “Help.”

He is there to help things run smoothly for you.

Stop straining. Start smiling.

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