The Invisible Reality of Parkinson’s Disease

There's been many stories coming my way lately, regarding the made up scenarios of Parkinson's disease. What I mean is this – some are being told by their spouses or other caregivers that their imagining it all or it's all in their head (no pun intended). Some are going to the doctor, only to have the doctor (not a specialist in PD) tell them – the patient – that they're just going through a phase of depression and eventually, they'll get over it.

Let me tell you a tidbit of my story… At the age of 30 or so, I started having some things go wrong – healthwise. I was getting extremely tired. My eye began being weird. I suppose you could say that was the symptom that got me to the doctor. The eye doctor. Before my eye exam, I explained what was going on. My eye would burn terribly and hurt and then I was seeing these little 'fireball' type objects. I likened them to the fireballs in the Mario Brothers Nintendo games. During an eye exam, my eye doctor slid over to the light switch on his little black stool and flipped the lights on. Something he had never done before. “Has anyone in your family ever had MS?” My heart sank. “No.” At that response, he went down the hall and brought the ophthalmologist back with him. Off went the lights and the ophthalmologist examined my eye (the other doctor was an optometrist. The lights came back on again. “Your optic nerve is hemorrhaging. What your're seeing and is making your eye burn is blood.” According to the two doctors standing there, Multiple Sclerosis, Rheumatoid Arthritis, and Lupus can often begin with what was happening inside my eye. However, there was one other thing it could have possibly been and they immediately had me come back in the morning to have an MRI of my brain done, to make sure it wasn't a brain tumor pushing on my optic nerve. An MRI would also show if there was any build up of myelin on my brain – another symptom of MS. The MRI came back negative for a brain tumor but showed some slight myelin build up – a symptom of MS if the build had been greater. Eventually, they called it Lupus and treated me accordingly for it. Ten years later, I was diagnosed with Young Onset Parkinson's disease. The symptoms have been consistent with all I've read about PD. I think they got it right this time around. The point of me telling you 'my' story, is to show you that often times, certain diseases may ravage our bodies and never be seen with the naked eye. No one else could see my eye hemorrhaging and what was causing the awful burning I could feel (and see!). But it was real. And now I have PD, as do so many others who thought they were signing up for one thing, only to find out they were given another. A life of leisure gone wrong. What does PD look like? That all depends. First of all, it is different for everyone who has it. Some may shake uncontrollably – all the time – while others shake less but have terrible back and/or shoulder pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their disappearing voice, while others take speech lessons (or talk to themselves). Some have a difficult time with speech, walking, etc. However, most people don't and most likely won't 'see' this. You won't see the restless legs that keep them awake half the night, pacing the floor to get it to stop. You may miss seeing when your PD person falls and scratches up their forearms and elbows. You won't see them struggle while getting dressed because they want to try to do it themselves just one more time. You won't see how it becomes harder and harder to swallow their medications. The fact is, you won't see a lot symptoms common for PD or MS or Lupus, etc.k, even if they are visible, because you may not really understand the disease or know what to look for. But, the PD patient is fully aware of what is going on inside of them and no one believes them because they can't see it and think they're faking that they have the disease because they badly want attention.. May I ask a favor? Don't dispute what they are trying to tell you or are dealing with. To lose the support of a spouse who thinks you're merely putting on an act can be devastating to the one suffering. If you're in denial over what your spouse has been diagnosed with, seek out a support group for caregivers. Whatever you do, don't push their diagnosis away and pretend nothing's wrong. Believe them or they'll seek support somewhere else. Is that really what you want? And PD person, if you've got a doctor that doesn't believe what you're telling him, get a new doctor.

Dr. Okun’s Sort of Ten Secrets to A Happier Life

The other day I was able to view a webinar with Dr. Michael Okun, put on by the National Parkinson's Foundation and sponsored by Medtronic. Dr. Okun is the author of a recent publication (2013), 10 Secrets to A Happier Life, and is on staff at the University of Florida as the Administrative Director, Co-Director, Center for Movement Disorders and Neurorestoration Professor, Departments of Neurology, Neurosurgery, Neuroscience, Psychiatry and History. (Try to say that five times as fast as you can.)

I will try to recapture the highlights for those who missed it. After all, who doesn't want to know the secrets to a happier life? And, pray tell, why has Michael Okun been keeping them a secret? Inquiring minds are desperate to know. So, since he didn't say to keep them a secret, I'm telling everyone.

First of all, Dr. Okun made teh comment alluding to the Parkinson's patient being like the sun. He didn't say we send out warm fuzzies to all who enter our atmosphere, but he did say that basically, the patient is important and that everything should revolve around us. We are so special! Thank you, Dr. Okun. Now, when your caregiiver won't do as you ask, tell them Dr. Okun (and add his titles above so you really sound authoritative) said they are to make you the center of the universe and revolve around you. After all, in the solar system realm, you are top dog.

Dr. Okun spoke of hope and dreams in his talk, stating the importance of both by citing a quote by Lu Xun which, in part says, “…when many men pass one way, a road is made.” This gives hope in the realm of research, I think. He then went on to quote Jillian Lauren, author of Pretty, who said, “I look for a sign. Where to go next. You never know when you'll get one. Even the most faithless among us are waiting to be proven wrong.”

Isn't that true in this or any other disease? We keep looking, watching, hoping for a cure, a sign that the time is just around the corner because you never know who will find it. Or when. Or how. Or where. Even the faithless are waiting… and wanting.

The good doctor went on to say that PD isn't a single disease, like cancer, diabetes, Alzheimer's. It is a combination of many and varied symptoms that mimic so many other diseases. Depression, anxieties, sexual dysfunctions, bowel issues, dystonia, restless leg syndrom, tremors even. You can have one of those 'diseases mentioned and not have Parkinson's but to have Parkinson's means the likelihood of experiencing any or all of the other afrementioned diseases is very good. Many equivocate PD to Alzheimer's but they are not the same. “There is a different degenerative process,” Dr. Okun said.

So, at this point I'm wonderng to myself, Where is the happy part? This is sort of depressing. But, the good doctor came through.

“So you have PD. It's not like having some other diseases. Having PD is btter.”

Okay, I like that.

“Joshua Harris,” he quoted (which I found amusing, since he writes books on dating and such), “said, 'The right thing at the wrong time is the wrong thing.” Dr. Okun used this quote as a backdrop for the importance of takings your meds on time, every time and timing is critical. Dosages need to be precise also, he explained.

Dr. Okun talked about hospital stays and how they can be a dangerous place for PD patients. Medical staff are, more often than not, not educated about Parkinson's disease and don't realize how critical having our meds on time can be. He said that 3 out of 4 times, PD patients do not receive their meds on time. For some patients missing just one dose can put them in a tailspin, resulting in the staff trying to accomodate new symptoms they view as being out of control and so then give you something to calm you and the next thing you know, you might be standing at the pearly gates.

Okay, I'm exaggerating. Sort of. This scenario is not common, but it has happened. Chances are, those caring for you in the hospital aren't going to know of your aversion to Haldol, so it's up to you to educate them. When they ask if you're allergic to anything, now you know what to tell them… Haldol. “Be prepared to get the right treatment,” Dr. Okun said. In light of this, he mentioned the Be Aware in Care Kit, offered free just for asking, from the NPF for Parkinson's patients and/or their caregivers.

“Lack of activity destroys the good condition of every human being, while movement and methodical physical exercise save it and preserve it.” – Plato 380BC

This quote led to talking of exercise and its importance to patients. He said that “Excercise is like a drug. When movemente is involved, we get better. Movement is also like Miracle-Gro to the brain.” Now, I love to garden and know the benefits of this stuff. Better root system, healthier plants, plentiful and abundant fruit… now – who doesn't want those benefits? (Disclaimer: author nor Dr. Okun is responsible for the ingestion of Miracle-Gro by a patient.)

 

He also stated that there are no 'best' exercises for the patient but ones that get your heart rate up each day and cause you sweat are a good thing.

 

He spoke about DBS in that, it is electricity to the brain, causing tremors, stiffness, slowness to sometimes be alleviated and in some, eliminated (so I've heard). The purpose? To alleviate suffering. To enhance the 'off' times by offering stimulation. These reasons for DBS is what Okun uses when countering the debate as to whether DBS is ethical.

 

Yes. I guess that has come up. By people who don't have PD, would be my guess.

 

He went on to say that making the brain electric can be helpful. It isn't for all, but for some. He stated that one in five patients may benefit from this procedure. And, did you know that PD led the way with using DBS, helping other diseases to benefit from this act of drilling into your brain? I just want to thank the very first patients who said 'yes' to having this done.

 

It was suggested by the good doctor to ask questions at your doctor appointments like, “What is the latest research in PD? What is the evidence in (whatever the latest research is) being beneficial to me? Are there any new drugs for PD and are they something we should consider?”

 

He talked about pain in PD and how changing the dosage of your current intake of levodopa may be helpful. (Any feedback on this by someone who has been here, done this would be super appreciated!)

 

Dr. Okun had more to say and took some questions in a Q&A session immediately following, but my meds were wearing off and I can't read my notes. So, the big question? What, exactly, were the ten secrets, ?

 

I guess I'd have to say…

  1. You are the sun?
  2. Be hopeful?
  3. Take your meds on time?
  4. Be your own advocate, especially when it comes to hospital stays?
  5. See about becoming bionic?
  6. Ask questions?
  7. Check out how to reduce pain?
  8. I don't know
  9. I don't know
  10. I don't know

My suggestion? Get his book. I couldn't take notes fast enough and what I did catch I can barely read. Such is life with PD.

 

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.