"I AM"- are the two most powerful words in the dictionary because the ending determines your destiny….so join me in my fight against PD to make sure that everyone who suffers from this chronic progressive degenerative disease can develop the courage to shout to the wind- I AM Fierce and Courageous ….
“The future belongs to those who believe in the beauty of their dreams”…so keep dreaming. You will get there eventually.
Many of us when we are first given a diagnosis of Parkinson’s disease may feel that the end of the world is near or as if our lives are doomed. We may have a hard time thinking about the future …this may become harder as our disease progresses. It can be freighting to think about the future. More rationally, some of us may be concerned about our finances since we may have to leave our jobs sooner than expected. But, these anxieties are extremely common for anyone living with a chronic illness.
today as we start Parkinson’s awareness month – I want to discuss the value of living day to day in the moment, taking life as it comes one day at a time. However, it is equally important that you believe in yourself and visualize the future with you in it.
Here are some tips to maintain that positivist attitude while preparing for the future.
Remember, a mediocre plan beats a brilliant one that is never implemented anytime.
Unless you have been told specifically that you are terminal, there is no room in your life for those fears to contaminate your thinking and interrupt today’s precious moments.
Get financial & estate planning, make a will and power of attorney with all your wishes and put away in a safe keeping..now you can breath and continue enjoying your time those who matter most.
Break the future into smaller blocks of time; make short term and long term goals. Things you would love to achieve..remember you can do anything you set your mind to..learn a new language, visit a new country, learn a new craft, the possibilities are infinite. Think on paper-writing your goals down gives them a sense of permanency, this act will energize you ….just try it.
Continue your routines as usual like shopping, getting your nails done, getting your hair done, or going to see a play. Do something everyday to keep moving forward.
Never say no to friends invitations to outings …if in the end you don’t feel like going or are too sick to go your real friends will understand.
Plan for extra time when doing any activities just in case meds don’t kick in as they are supposed to or you have more side effects than usual or running slower and stiffer.
Go ahead and plan for that dream vacation…look at my tips for traveling blog.
Capture those special moments via video, pictures, and start scrap book to remind you how much you have done and how you have overcome. Surround yourself with those memories on your desk, and around the house.
Lastly, never let your calendar be empty …if necessary plan in pencil but don’t stop planning!
Estoy muy entusiasmada y agradecida de poder formar parte del comité encargado de los preparativos para un evento tan especial e importante como es el congreso mundial del Parkinson. Este evento se lleva acabo cada 3 años. El último se llevó acabo en Montreal. Este año se celebrará el cuarto Congreso Mundial en la ciudad de Portland, Oregón en septiembre 20 al 23 de 2016. Los invito a todos ustedes a que consideren asistir a este gran evento.
¿Pero Porque asistir se preguntarán? Primero un poco de historia – en el 2002 el ex director del Instituto Nacional de la Salud (NIH) Dr. Elías Zerhouni hizo la pregunta ¿Porque no había una conferencia donde todos pudieran asistir al mismo tiempo en el área del párkinson? Esto creo la iniciativa del primer mundial del Parkinson e se llevó acabo en Washington del Distrito de Columbia en febrero del 2006. Esta fue una idea innovadora para juntar a la toda comunidad nacional e internacional del Parkinson incluyendo pacientes, familiares, doctores y científicos.
Desde la primera conferencia a la cual asistieron 3 mil personas ha crecido enormemente. Este año, se espera que participen delgados de más de 60 países. Pero en los últimos congresos ha habido poca participación por la comunidad hispana. ¿Pueda que tal vez sean las barreras del idioma el que nos separe de tales eventos o tal vez el costo o la misma distancia? Pero aunque todas estas razones son muy legítimas especialmente acudir a algo que no vamos a entender puede ser problemático. A la vez si no ponemos interés de ir y participar en algo de tan gran importancia que podría dejar grandes beneficios para nuestra comunidad damos la apariencia de que no nos interesa este tipo de evento. Es imperativo que las puertas se nos habrán a nosotros los latinos para tener voz en las fundaciones principales del país porque aquí en los Estados Unidos los Hispanos formamos la minoría más grande y también entre los hispanos tenemos dos veces más riesgos de ser afectados por esta enfermedad llamada Parkinson que afecta más de 7 millones mundialmente (con casi dos millones aquí en nuestro país). Pero a pesar de esto no somos representados igualmente en los estudios científicos ni recibimos los mismos tratamientos médicos ni quirúrgicos.
Hoy más que nunca necesitamos unir nuestras voces para poder hacer cambios en el tratamiento en nuestras comunidades para poder lograr mejor calidad de vida. Solamente con asistiendo a programas como este podemos empezar a dejar nuestras voces resonar en aquellos que tienen la capacidad de hacer verdaderos cambios en la ciencia. Para poder encontrar cura es importante entender la cultura y la genética que nos separa. Y nosotros necesitamos encontrar apoyo en nuestra comunidad aquí dentro y fuera del país. Porque como dice la antigua canción de Roberto Carlos “yo quisiera tener un millón de amigos y así poder cantar mejor” porque en la unión esta la fuerza. Además también es importante como saber encontrar los recursos necesarios para nuestras familias y para nosotros para participar en estudios científicos y para obtener beneficios algo de lo que pueden aprender más allá en la conferencia. Allí conocerán a otras personas como ustedes de aquí y otros países que les servirán de guías y mentores en su jornada con esta enfermedad. O tal vez alguna de ustedes que ya tienen muchos más años viviendo con la misma pueden ser embajadores o partidarios de otros que apenas comienzan esta larga trayectoria.
Por ultimo allá podrán asistir a conferencias donde aprenderán cosas prácticas para el diario vivir como nuevos tratamientos al igual que los últimos avances en la ciencia que ustedes después pueden desimanar en sus comunidades médicas y con sus otros amigos que también padecen del párkinson. Si tienen bajos recursos pueden aplicar para becas de viaje y ayuntamiento. También si dirigen a médicos o científicos a esta conferencia se les garlaran premios y puntos para viajar. Entre más refieran más ganan (tienen que ser gente nueva que nunca ha ido). Y si usted tiene algo científico o clínico de interés que presentar a la comunidad por favor sometan un cartoncillo (poster) de presentación. Allí estaré yo, y Claudia directora del centro de Parkinson de Mohammed Ali (MACP) (que trabaja con la comunidad Hispana de Phoenix en Julio uno de los bloggers del congreso, Israel embajador y partidario activo de la comunidad del párkinson al igual que Fulvio que es también embajador del congreso y estuvó en Glasgow en 2010 cuando se presentó la cobija ( Quilt Project del PDF) representando a todos los del párkinson mundialmente (ahí tuve yo un pedazito también- en honor de mi abuela) y asistio al congreso en el 2013 en Montreal. También por medido de Julio, Claudia, yo, y otro les mantendremos informados de los nuevos avances y temas de importancia que se presentaran por allá. Esperamos verlos en la ciudad de Portland en Septiembre a todos ustedes.
Fulvio Capitanio (Spain) is an economist and ITC manager. He was diagnosed with Parkinson’s in 2007 and retired from his job in 2009. In January of 2008, with a group of PD friends he met over the Internet, he started an online organization called “Unidos contra el Parkinson” (together against Parkinson’s disease) at http://portal.unidoscontraelparkinson.com
Last week was a particular bad week for me, not only did I have a raging UTI-(urine infection) but boy was I in a state of fogginess and confusion which lasted all week. I was drowsy, sleepy, and unusually lethargic and could not remember anyone’s names to save my life. I was equally distracted leaving a trail of medicines all over the house because I would set them down to find water and then forget all about the medications which did not help the matter. In the middle of the week, I passed out around mid-afternoon out of shear fatigue only to awake in a panic state. It had gotten dark because it of the rain, I did I not know where I was nor what time it was. So, I started walking towards the living room staggering like an inebriated person holding on to the hallway walls only to crash into the doorway slamming my forehead right into the edge of as I was turning. This did not help my delirium one bit either. It left me seeing starts.
As I look up in a dazed stupefied state I see my husband standing in the middle of living room he appears to be speaking to me while pointing at a box on the table; but all I hear is ‘wah wahwoh wah wah’ suddenly I felt like I was inside a Peanuts comic strip T.V run! I had to grab him by the shoulders and say “Stop! What?” Again all I heard was same thing so I said “where is my daughter?” At which point he turned around mumbling something and walked out the door then it dawn on me he was going to pick her up but still I could not understand why he was pointing at the box at the table? Until he came back and explained again 30 minutes later and asked what was wrong with me? To make matters worse the flowing day, I went to my usual grocery store to do some quick shopping since was feeling so out-of-sorts. But when I got there only worsen my anxiety and heightened my confusion since my local Kroger’s decided after 15 years to rearrange very isle.
I describe these events so that you know it can happened to the best of us and that there is a reason and you know what to do so you don’t wonder all week as I did. I thought initially I was run down and not taking meds as scheduled was not making me think clearly (which I am certain did not help my concentration). However, it dawn on me, only towards the end of my antibiotic course, the cause. I had dealt with this before in my patients and never thought it could happen to me since I had taken these antibiotics before.
Coincidentally few people I know where also having infections and UTI’s and having problems so I decided to write about this to clear up the confusion regarding the confusion.
First Two things to remember:
1) Parkinson’s disease is a slowly progressive chronic neurodegenerative disease – which means that no BIG sudden changes OCCUR or SHOULD occur from day to day or week to week. Yes, we all have ‘good days and bad days’ meaning our stiffness, slowness, fatigue, walking tremors etc. may be a bit better or worse due to stress, poor sleep, weather etc. but should not be DRAMATICALLY different and definitely NO NEW SUDDEN symptoms should occur!
2) Having said this, however, unfortunately there might be new changes or symptoms that DO occur SUDDENLY these ARE NOT related to PD but caused by other problems. The most common change or fluctuation people with Parkinson’s experience in this department is change in cognition or poor memory or confusion also known as delirium, encephalopathy, or mental fogginess.
I know some of you might had wondered if were getting dementia in my situation?
So how do you know what to do and if you are getting dementia?
First, Older Parkinson’s People that get confusion, disorientation, and mental fogginess with mild infections (of which UTI’s are the most common) and dehydration are those who are already diagnosed with Parkinson’s dementia, have an early onset of dementia pushed to forefront by these conditions, or those with Parkinson’s plus syndromes such as Lewy body dementia. These are usually persons with advance Parkinson’s disease who are usually older as well.
Second, However, young people with Parkinson’s are less likely to have dementia unless they have an atypical Parkinson’s. Having said this the reason, they might get confused and disoriented is almost always medication related as was my case. Certain antibiotics especially those used for treating urinary infections can cause confusion, disorientation delirium and encephalopathy in young healthy people more so in Parkinson’s patients. These medications are in the class known as quinolones common ones are Levaquin and Ciprofloxin. Sometimes penicillin can do the same thing but these are not typically used for urine infections/ rather for other skin infections or upper respiratory infections.
So if you experience an acute and sudden change such as weakness, numbness, confusion, hallucination, speech problems, vision problems etc. contact your physician immediately.
If it’s a new sudden cognitive change and you have had Parkinson’s for long time and you are older it may be that there is an underlying dementia that is undiagnosed along with infection, dehydration which is unmasking etc. sometimes Strokes can also cause these symptoms as well as other metabolic abnormalities such as thyroid disease, vitamin deficiencies (B12 & D) and diabetes.
If you are a young person with PD and get confused, disoriented before any antibiotics then probably you have an atypical Parkinson’s like Lewy body dementia. Unless you already have diagnosis of thyroid or diabetes etc. If it occurs after antibiotic treatment it’s probably the antibiotic especially if it’s a quinolone or penicillin.
Fortunately my confusion cleared up completely as soon as I remembered Cipro could do this (more common in older persons). I will not be getting ciprofloxin anymore!
Rarely people can get meningitis as source of confusion but would be incredible sick -nauseated, vomiting with headache and fever along with stiff neck so very different picture.
I hope that your confusions also get cleared with this information regarding changes in cognition in PD with infections.
One of the biggest complaints I hear from people in PD support groups is a continuous relentless severe leg pain. Prior to a decade ago, I as all my fellow movement disorder specialist would have not thought leg pain to be a direct precursor of PD or an initial non-motor symptom. My grandmother often complained of pain and deep aches in her calves and in her legs which started before her tremors and shuffling were noticeable. But, I was unaware of the connection at the time and erroneously assumed her pain was neuropathic in nature due to her diabetes but was always somewhat surprised that she continue to complain of this pain on and off throughout her illness despite neuropathic medication. With hind sight what she was experiencing was central pain of PD. I too had severe pain first in one leg then the other which would come on suddenly without warning stopping me in my tracks throughout the day. I was constantly asking my husband to massage my legs just as my grandmother had asked of us time and time again.
So why do we have leg pain in PD and what can we do to relieve the discomfort?
First, some believe that lower limb pain is a specific non-motor phenotype variant of central pain in Parkinson’s disease. I, too, believe this; more importantly it can be one of the very first signs of PD as it was for me. This pain is usually bilateral.
Second, leg pain can also occur secondary to dystonia as an initial symptom or as a consequence of long term levodopa use (most common). When related to levodopa it usually occurs as a wearing off but can also occur at peak dose. In most cases this leg pain is unilateral and has direct correlation to medication intake. When is due to dystonia pain is more common in early morning. This type of leg pain is usually accompanied by toes curling and foot abnormally posturing.
Third, musculoskeletal pain due to rigidity, abnormal posturing and lack of mobility affects legs commonly causing pain in the legs, however this pain is usually more pronounced on the more affected side.
Fourth, pain in legs can also be caused by radiculopathy; nerves can become trapped or temporarily pinged in the spine or as they exit the spinal canal due to stiffness/rigidity of the muscles which exert an abnormal lordotic (curvature) of spine. Once again, this type of pain is usually confined to only on one side of the body and is positional meaning it is worst with standing and sitting and relieved by laying down. Pain usually radiates from back or hip down to leg and can also get worst with coughing or straining.
Fifth, pain in legs can also be due to medication effects or withdrawal from certain types of medicines like NEUPRO. In the latter, the pain which can be in both legs is more cramping.
Sixth, Let’s us not forget that we do not live in a vacuum and that just because we have PD does not make us immune to other common diseases such as peripheral vascular disease (PAD). Men are more likely to have this but women are not exempt. Risk factors include diabetes (remember PD may increase this risk), high blood pressure (again some PD meds may increase this risk), heart disease, high cholesterol, smoking, stroke, kidney disease.
The symptoms of this are:
– walking fast or uphill or for long periods to point of hurting immediately when walking
-Feet and legs feel numb at rest and skin is pale and cool to touch
Symptoms are worse with elevating legs and better with dangling over the bed.
Sometimes pain in legs can be a combination of all of the above.
Pain can be the most disability of all PD features interfering with all activities of living. Despite this fact it is often under treated and frequently overlooked. Any pain in PD should be promptly and effectively treated especially that of leg pain before the pain becomes chronic and your brain reorganizes itself completely to be able to handle the pain. I feel terrible because I did not fully understand the phenomena of central pain in PD at the time of caring for my grandmother. Fortunately, with adjustment of her levodopa meds her pain subsided for the most part. As I said before we have come a long way in understanding pain in PD, so there should be no reason why anyone should be subjected to dealing with pain on a daily basis when we have so many treatment options.
Treatments therefore depend on properly identifying the source of pain.
If bilateral always assume it is central pain- pain due to PD and treat accordingly. As I mentioned many times before, Azilect works great for this type of pain.
Massage therapy works for all types of leg pain-my favorite.
If having pain due to dystonia first find out if occurring at end of dose or at peak dose so meds can be adjusted. If medication adjustment don’t work consider DBS. Pain due to dystonia also responds well to Botox, Myobloc, or Dysport injections, baclofen, Dantrolene, and Klonopin work well alone or in combination with other treatment modalities. Physical therapy (PT) can go a long way to alleviating pain of this type.
If having radicular pain try trigger point injections, epidurals, nerve block, surgery, DBS (deep brain stimulator) for pain in the spine, Botox, Lidoderm patches, muscle relaxants, anti-inflammatories and steroids and PT.
To avoid and alleviate pain caused by stiff muscles the best treatment is activity in the form of stretching exercises- any number of activities will do such as walking, tai-chi, water aerobics, swimming, dancing, bicycling, yoga; of course if needed can use a Tylenol plus a Motrin or Advil as needed. Sometimes may need to up levodopa if stiffness is persisting or add a centrally acting muscle relaxant like baclofen or Neurontin.
To avoid cramps stay well hydrated. Make sure your patches don’t fall off! Eat food high in potassium like avocados, bananas, and strawberries. When cramp hits quick remedy spoonful of mustard with warm water or take some pickle juice.
If you have symptoms of PAD or suspect consult your physician immediately this can be a life threatening problem!!
“He stopped loving me in the thick of my loving him.
He was finished but I was not.
I felt like I had been stopped in the middle of an orgasm.” ~ Stopped by Carmen R. Rutlen
When I was practicing I used to have an intellectual grasp of the motor fluctuations ; yet never fully understood until I got PD as well. Cocaine being so similar in structure to dopamine, it binds at same receptor. Thus, I could imagine and understand how the euphoric initial response one gets with time would diminish therefore needing to escalate dose in order to achieve same response. In my training, I was past the days where doctors as part of their learning of medicine experimented with compounds they were to use in order to better understand their effects so had to go on theory. Never did I dream that I would one day become a walking pharmacy and where my knowledge of pharmacotherapy would be put to the test repeatedly.
I often talked to my patients about the feeling of being ‘on’..and how long the effect of dopa lasted. However, I used to think perhaps due to my naïveté that patients could only feel the change as they advanced in disease. But, in actuality one of the tall tale signs that you do have a dopaminergic disorder is quick and exaggerated initial response to levodopa. Several of my patients stated they could not tell any difference with levodopa or when it was in their system. This usually was a clear sign we were dealing with atypical causes of Parkinsonism.
As I am sure those of you who have Parkinson’s disease can attest to the significant mental rush you achieved when you first started levodopa. I could tell exactly when it kicked in and when it wore off suddenly, the first time I took Sinemet (levodopa/carbidopa). I despised the sudden feeling of unable to focus and feeling spent. Some of you have agreed with me of experiencing same feeling independent of any motor changes. When we first took dopamine, our minds felt “on,” more focused, alive- like you could conquer the world and felt a bit euphoric not unlike the sensation we all have felt when we were first in love. No wonder and not at all coincidentally, dopamine is the “feel good” chemical released when we are in love! Dopamine is released when we see our loved one looking back at us, or just think about the love of our lives makes our brains light up like a Christmas tree.
But, just as in life and relationships maintaining that constant state of happiness, giddiness, and feeling high is impossible to do. Now, I truly understand why cocaine is so addictive. We all love the feeling of being in love. When dopamine wears ‘off’ suddenly is like experiencing an emotional and physical heart break over and over..
Some may say it feels like living you hanging in the midst of an orgasm. If we never give ourselves time to heal we will go down a dark path of depression building an emotional scab that bleeds at the slightest touch. When we lose our love, we feel hopeless, anxious,nervous, unable to sleep, or sleep too much, listless, tearful, aloof, and experience physical and emotional aching. So are the feelings when we experience levodopa withdrawal.
In order to avoid these feelings what should you do?
One thing you don’t do is chase after that person or in this case keep adding more and more dopamine…only lead to more hurt, withdrawals and serious complications. We find support from others which may not provide as good of a feeling but will help to stabilize you and regain strength.
In order to avoid repeated break -ups with your medication and being a slave to it…a combination regimen is advised- you would never let one man/ woman rule your world right? Neither should you do the same with PD meds. to take a page from Mambo # 5 song by Lou Bega, a little bit of (dopa agonist) and a little bit of (levodopa) is best way to go to keep you and happy and balanced …
In my experience in years of dealing with PD from all aspects, a combination of the following drugs dopa agonists, with NMDA receptors medicines like amantadine, Mao – inhibitors, and compt inhibitors along with levo- dopa is the best way to keep PD stable for the long run. Sprinkle of ssri’s ( Zoloft,lexapro), tricyclics ( eleavil, remeron), or SNri’s ( Effexor) on top is the icing to the cake.
With age comes wisdom, so they say! As our Parkinson’s advances, it is ever so crucial to learn how to fall in love (using our dopamine) without losing ourselves in the process.
There is a new trend of adult coloring books popping up all over the place that are designed to stimulate the mind. These consist of intricate designs from abstract images such as the ones in the ART NOUVEAUDESIGNS coloring book to images of iconic monuments worldwide found in INSPIRED COLORING TRAVEL. Although the concept is good, I find these books extremely tedious and lacking in mind stimulating abilities for those that have neurological disease such as Parkinson’s, Parkinson’s dementia, or other Parkinson’s Plus syndrome in which cognitive abilities are compromised. These books promise ‘to relax and free the mind.’ Have you ever worked or cared for an agitated person who is losing ability to recognize an entire scene of a painting to focus only on the individual parts? This can only cause them to become more agitated. Try putting together a puzzle where the pieces have no connection to one another. This is virtually impossible. So why would you give these patients something they will not be able to enjoy? Plus, these coloring books are expensive.
1-You can achieve same mindless coloring in advanced dementia patients with dollar coloring books which have a variety of themes for every occasion making it fun! However, the purpose of these books and activities is not only to calm, and sooth the patient but rather stimulate their remaining intellect and preserve function for a longer period of time.
We want a variety of activities that will stimulate several areas of the brain at the same time such as frontal lobe tracking things and put things in sequence, parietal lobe matching shapes, and temporal lobe to trigger memories of objects being painted. Best to have larger images and space for coloring enabling patients to stay entertained and focus for longer periods of time. Having larger images also makes coloring easier to stay within the lines and gives a chance to express individuality by using different types of coloring materials like watercolors, markers, crayons, acrylic paints and colored pencils.
My grandmother who suffered from Parkinson’s disease for many years enjoyed these type of coloring books which not only entertained her but calmed her down. Plus, it was easy to share the coloring books with my daughter who would sit opposite her and color the adjacent page. They used all sorts of materials for their wonderful creations including finger painting. One of their favorite methods to paint. Another one was to use scented colors which also help to stimulate the olfactory nerve.
2- Besides my favorite cheap coloring books which also have a number of activities like tic-tac-toe and word puzzles, I really like the Osborne Big Color by Numbers Book– I like because it has variety of designs, colors and shapes- some small and others larger within same book. These are reasonable and can be found at all large bookstores including amazon.
3- Another fun way of painting is paint famous work of arts by numbers – you can pick favorite artist or period or do a variety. Always pick larger canvases. Room for creativity as well because can use own proper brush stroke technique as well as paint colors to reflect own individual whimsy.
4 – I also like the Books Dream Big, Draw Bigger
5- For those who are dealing with advance Parkinson’s in their life or dealing with dementia, Draw, Doodle Design & Doodle Imagine, Draw. The last three books allow for both the caregivers/partners and Parkinson’s people themselves to become more engaged and interactive thus stimulating cognitive function in several aspects of brain because it asks to do tasks while drawing which requires recollection of objects, places and memory of shape of what is being asked to draw plus helps with coordination and fine motor skills. But, in reality all of these books/ painting crafts are perfect for any stage to keep the pathways and neuronal connections viable. Remember art is a gift many of us with PD have been given due to our illness as well as a side effect of medication so go ahead indulge.