Dyskinesias- 8 Tips to prevent & manage DYSKENESIAs: By Dr. De Leon.
Dyskinesias- 8 Tips to prevent & manage DYSKENESIAs: By Dr. De Leon
The things I have learned about dyskenesias in a nut shell.
They are not a sign that you are having fun because you look like you are dancing even if they occur at the beat of your favorite tune.
yes, although most of the time you prefer over being off or stiff, you can’t wait to go to sleep so the movements can stop.
although, they are a great form of exercise you wish you did not have to exercise so much to look so great!
dyskenesias are great for doing the twist and Mixing fruit salad but not for putting on make up or reading a favorite book.
Is there a solution to dyskenesias?
yes…
mind you is not an easy feat….
The first thing to remember iS that is much easier to prevent than to stop once they occur.
Key points women are more likely to develop dyskenesias than men.
altough, We as patients know our bodies best and know a lot about Parkinson’s disease we should not manage our own symptoms without the guidance of a professional (MDS).
One, because it is very hard to be objective when it comes to our own disease state.
Second, most of the time what we intuitively think should be the right thing to do is not always the BEST treatment plan for the long run of the disease…this is where experts like myself and other movement disorder specialists come in handy.
Third, as I have mentioned many times before, anyone can treat Parkinson’s in the first stages because it will respond to any and all PD medicines; however as disease advances the expertise in the art of treatment provided by a seasoned specialist is indespensible. This is where knowing how to treat rather than what to treat with becomes crucial.
Fourth, when I was in practice it was common to see my first stage PD patients 2-3 x a years unless they needed something because they were pretty autonomous; but as Parkinson’s progressed the frequency of the office visits increased as should your visits to your physicians. It was usually every month to every 6 weeks evaluation in my late stage disease patients and 4-6 times a yeAr for middle stages. Even though, I understand as a patient we all get tired of visiting and going to the doctor, unfortunately this is the type of commitment that is required to keep DYSKENESIAs at bay and control before they become intrusive by adding medications like amantadine, Keppra, zonegran, comtan or Tasmar (or STALEVO which I love because it has so many doses ranging from 50 mg to 225mg) and adding long term release intermixed with short term and intermediate release. Also things like DBS and other surgeries like pallidotomies; apomorphine and even Botox injections if have focal DYSKENESIAs or dystonias are great treatment options with proven benefit and low risk in the right hands of experienced physicians.
Fifth, although certain autonomy is allowed for patients it needs to be evaluated frequently because invariably most patients will overdose creating more side effects and DYSKENESIAs. More is not always better…we feel bad can’t walk, move, talk, swallow so we not only increase our doses but start increasing frequency sure way to develop DYSKENESIAs faster ! The key is to mix dopa agonists( especially NEUPRO because the continuous release will potentials the effect of levodopa giving it a more continous star in your body without having so many peaks and valleys), MAO inhibitors along with dopamine in various forms…don’t be afraid of taking several types of medications this is how you get the most benefit without having to take such large doses of levodopa and keep number of times you take medications down ( e.g. 4-5 x a day instead of every 2 hours). We have so many new choices now.
Sixth, remember that dopamine agonists and amantadine effect usually work for several years in the range of 5-7 years after which their effect starts to wane but after a small period of rest ( 1-2 years off these medications) they can be again reintroduced having again a positive effect.
Seventh, It is recommended that around the time you enter the middle stages of disease (3-4th stages) every patient should start keeping a calendar of every medication taken. This needs to include time of intake of each medicine along with name, how long it takes to kick in ( what do you notice when it kicks in), how long each medication last, can you tell when it wears off- what do you notice and the does medicine wear off suddenly. your doctors usually have copies of these calanders in their office, you can get from them or get from the website Or create your own. For instance, I can tell you that my azilect helps my pain & walking, my Neupro helps my vision and my STALEVO helps my brain feel “on.”
Eight, most important advice to prevent and stop these intrusive involuntary movements which make our lives miserable is early DBS before they start…if you Wait till after they start it will take longer to find right setting. when DBS setting is adjusted in brain It is imperative to adjust medications at the same time for maximum result so need to find a doctor who can program in office and has extensive experience – this is one of those art things where experience truly dictate outcome. Patients with DYSKENESIAs by definition have already more advanced disease taking more medications therefore adjustments have to go even slower for maximum results which can be extremely frustrating. so find someone close by because will need a lot of visits; if not able to travel frequently to maximize benefit then should consider doing pallidotomies instead.
Parkinson’s disease is an extremely complex disease encompassing multiple body systems outside of the brain thus in order to have the best quality of life is to have disease managed by a movement disorder specialist who serves as the conductor in a well orchestrated performance involving many other subspecialties (including Gi, neurosurgeons, dermatologists. Urologist,internist, anesthesiologist, ENT, and ST, PT, and OT). Together they can allow you to dance in whatever fashion you desire without the presence of DYSKENESIAs.
I have Dystonia! Now, what? : by Dr. De Leon
I have Dystonia! Now, what? : by Dr. De Leon
First, dystonia which falls under the umbrella of the movement disorders diseases implies an abnormal contraction of the muscles that causes involuntary twisting resulting in abnormal postures. It can be painful. Some common known dystonia are writer’s cramp-a type of dystonia that occurs only while writing affecting the muscles of the hand and forearm.
Dystonia is a symptom like a cough, or nausea. We need to know the cause. It can be a primary disease such as dopa responsive dystonia (DRD), or dystonia muscularoum deformans (also known as Openheimer’s syndrome or torsion dystonia-DYTI ).
All primary dystonias are caused by some type of genetic abnormality. Dystonia can also be part of another neurological disease; this type is known as secondary dystonia.
Secondary dystonia or acquired causes:
- Strokes (CVA’s)
- Multiple Sclerosis
- brain tumors
- seizures
- carbon monoxide poisoning
- infection
- oxygen deprivation- e.g. strokes
- brain trauma
- birth injury ( some people think cerebral palsy fall into this category)
- Huntington’s
- heavy metal poisoning
- Wilson’s
- drug interactions ( side effects) usually to antipsychotics after long use
- drug use,
- Parkinson’s.
It can affect any muscle of the body. The dystonia can be:
- Focal – affect one specific body part e.g. writer’s cramp, cramp with piano playing.
- Generalized- all or most body parts
- Multifocal- several unrelated body parts
- Segmental –adjacent body parts like torticollis.
- hemidystonia –arm and leg on the same side In Parkinson’s disease it is usually more commonly seen as a side effect of levodopa when wearing off and can look like any of the above.
Typically Parkinson’s patients experience focal or hemidystonia. In YOPD it is not uncommon to see dystonia as one of the presenting symptoms again it can be focal, hemidystonia, and occasionally segmental. Unfortunately sometimes dystonia can remain the most prominent feature for years before other motor pd symptoms to develop. But, during this time persons with YOPD should have other non-motor symptoms developing. I have seen patients treated with focal dystonia for 6 years only to see signs of PD in the 7th year. With time DRD develops pd symptoms sometimes confounding picture for those not so well versed in the field erroneously labeling Parkinson’s when in fact is primary dystonia with secondary parkinsonism. The treatment unfortunately is the same but the prognosis is quite different. One being static or mildly progressive while the other one will have a progressive neurodegenerative course (PD). DRD can be controlled with large doses of dopamine while the other initially maybe controlled but will eventually lead to dyskenesias. Independent of whether dystonia is primary or secondary’s the treatment armamentarium is essentially the same. The basic principle is finding an underlying treatable cause such can reverse the symptoms if not is back to symptomatic control. In the case of Parkinson’s is really as much an art as it is a science in being able to adjust the Parkinson’s medications. This is where open communication between a doctor and patient come in handy to pinpoint exactly if the dystonia is being caused by wearing off, end of dose, or a biphasic response!
Symptoms of dystonia:
- A “dragging leg”
- Cramping of the foot
- Involuntary pulling of the neck- a.k.a. spasmodic torticollis or cervical dystonia
- Uncontrollable blinking a.k.a. blepharospasm
- Speech difficulties- a.k.a. spasmodic dysphonia – 2 types adductor & abductor. Adductor is by far the most common and responds best to botox injections (no anesthesia needed only feel a prick through front of neck). Adductor dysphonia voice sounds strangled or strained because the vocal cords are so stiff it is difficult to produce sounds this is what it is typically seen with PD; but normal while laughing, crying or shouting. In abductor dysphonia, the voice involuntarily sounds like a whisper when attempting to talk. Botox is also used for this- more complicated has to be given into actual vocal cord muscles.
All dystonias, as all other movement disorders, get worst during stress and fatigue!
Treatments for dystonia:
- Medications oral: baclofen, Valium, xanax, klonopin, neurontin, dantrolene, levodopa,tetrabenazine
- Medications injectable: botox (there are several types including disport), baclofen pump; e.g. botox works great for spasmodic dysphonia
- Surgeries: DBS, thallomotomies, pallidotomies, ramisectomy and rhizotomies (spinal nerves are cut in order to relieve pain), pheripheral deenervation (cutting nerves in pheripheal nervous system), myectomies (taking out a portion of muscle), myotomy (dissecting the muscles).
- Ancillary treatments: PT, OT, ST, adaptive equipment-e.g. orthotics, leg braces
- Sensory tricks: stimulation applied to affected muscles or muscles nearby people can reduce and control their own contractions.
This man is touching back of his neck as a sensory trick to keep from going back.
- Non-medical treatments: massage, acupuncture, behavioral therapy (biofeedback), yoga.
In the hands of a skilled and knowledgeable specialist all dystonias should be able to be controlled providing the person living with this condition, whether it is a symptom of something else or a syndrome itself, a good quality of life since we now have so many treatment options. However, most dystonias unless related to medication side effects or are focal in nature (except spasmodic dysphonia which require ENT specialist to do injections) will require a team approach (ancillary services, MDs, neurosurgeon, pain specialist, orthopedist, massage therapist) and a combination of therapeutic modalities to achieve the best possible outcome. These treatments should be accompanied along a life style in which sleep is given priority and methods of stress relief are integrated into everyday life to maximize benefit.
In order to properly diagnose and decide proper treatment need to be seen by a movement disorder specialist (MDS). He or she will run blood test (which may include genetic testing), imaging test (CT/MRI Brain) along with a detail neurological exam to find the cause.
Sources:
webmd.com› … › Brain & Nervous System Health Center
Melanoma Awareness & Tips for Prevention In Parkinson’s Disease: By Dr. De Leon
Melanoma Awareness & Tips for Prevention: By Dr. De Leon
Let the Sea Cleanse You
“When anxious, uneasy and bad thoughts come, I go to the sea, and the sea drowns them out with its great wide sounds, cleanses me with its noise, and imposes a rhythm upon everything in me that is bewildered and confused.” ~ Rainer Maria Rilke
It is important to realize that melanoma is one of the most common types of skin cancer which are prone to become life threatening if not treated early. These forms of cancer can happen even in dark skin individuals and occur in places not directly exposed to the sun. Therefore, as we draw to the end of Melanoma awareness moth and summer months are about to begin (at least here in the Western Hemisphere), I would like to remind everyone of the importance of knowing the risk factors as well as encouraging everyone to have routine check-ups by a dermatologists. After all, melanoma is a curable type of skin cancer if detected early with a 100% success rate.
Some groups of people such as Parkinson’s patients appear to have an increase risk of developing this type of skin cancer.
Although, the exact mechanism for increase risk in PD is not well understood; yet there is a 2- 4 increase risk in those who have Parkinson’s of acquiring melanomas.
Sign’s of Melanoma:
Know your ABCDE’s
A-asymmetry– the mole does not look the SAME on both sides.
B-border– the mole is irregular or scalloped.
C- color– dark color varying from one side to another with varying shades of tan, brown or black, these sometimes can be white, red or blue ( which could be a sign of an even more malignant and aggressive type of cancer known as Merkel cell carcinoma).
D-diameter -these are typically the size of a pencil eraser ~ 6mm but can be smaller – (take it from me – I have had several diagnosed some smaller and some much bigger! So know your body and do frequent checks especially best to evaluate moles is in the winter and best to do in your birthday suit at least every six months. (excerpt from Parkinson’s Diva: A Woman’s Guide to Parkinson’s Disease)
E- Evolving– any skin mole that appears different from the rest or any lesion that looks like is changing (evolving) in color, shape, or size needs to be looked at immediately by a Dermatologists.
Symptoms of Melanoma:
Usually they are asymptomatic especially in early stages.
Watch out for moles that:
- bleed
- itch
- painful to touch
- bruises that won’t heal
- brown or black streak underneath a toe nail or finger nail
Risk for Melanoma:
- men
- older than 50
- having 50 plus moles, unusual looking moles, and having large moles
- having fair skin (e.g. blond hair, blue eyes)
- sun-sensitive skin (easily burns, rarely tans)
- previous history of using tanning beds or had a previous bad sun burn
- weakened immune system
- family history of melanomas
- personal history of skin cancer especially melanomas
- having PD -especially LRRK2 gene
Tips for Prevention of Melanoma:
If you have had a melanoma you have a 5x greater risk of developing melanoma! so frequent exams at home and at your dermatologists are key to prevention!
- Do not do tanning indoors or outdoors- indoor tanning increases risk of melanoma 75%.
- examine your skin regularly- enlist the help of a loved one for those hard to reach places. make sure you check your feet, palms, soles, toenails, fingernails, genital regions, and your scalp.
- keep eye appointments regularly because melanoma can also affect the eyes.
- get free screening -usually the American Academy of Dermatology gives several FREE screens during the spring throughout the US.
- if you see any of the abc’s during any of these evaluations call your dermatologist’s immediately.
- spend time outdoors when the sun and UV light is less intense before 10 a.m. and after 4 p.m. (in the US)
- use sun block lotions liberally. Make sure you use proper sunscreen. No natural products because they are not safe to stop damage from UVA & AVB rays.
- wear sunglasses with UV protection.
- Make sure that the sunscreen you choose contains ingredients like Titanium Dioxide, or Zinc Oxide. The SPF 15 or higher is only for UVB protection; A SPF 30 or higher is recommended for those of us who have Parkinson’s because of our increased risk factor. There is no rating to tell us how good something is against UVA.
- Apply sunscreen at least 30 minutes before you go in the sun. Don’t forget to apply under your make up, feet, between your toes, tip of ears, nose and lips (use lip balm with UV protection) as well as back of legs and neck.
Sources:
“The association between Parkinson’s disease and melanoma;” International Journal of Cancer; 128, 2251-2260 (2011)
In Sickness and In Health: Caring For Each Other
Bowel Incontinence Another Embarrassing Casualty of PD: By Dr. De Leon
Bowel Incontinence Another Embarrassing Casualty of PD: By Dr. De Leon
We all know that since we got diagnosed with PD our bodies don’t work just like they use to; much to our chagrin it does not always respond like we would have it. Sometimes our voice leaves us in the middle of an important conversation with our best friend, other times it cause us to be embarrassed when our fine motor skills betray us and food goes flying across the room especially when we are trying to impress someone we like while on a date. Our handwriting has caused a commotion once or twice at the bank when we have gone to withdraw money because our signature is just not the same! We might have even caused a scene when we unexpectedly tripped on nothing but air. Yet, all of these may pale in comparison it seems when suddenly in the middle of a shopping spree, while driving or simply going about our usual business we lose control of our bowels without warning.
We sit there embarrassed, humiliated, wishing that the earth would suddenly open up and swallowed us whole. Of course it never does so we are left feeling impotent because we may see this as the ultimate sign of PD gaining victory over us.
What then? Do we cry, do we scream, or simply retrieve to hide under our covers and never come out?
Well, this would not be practical in deed. As foolish as we may feel at the time, I want to tell you that you are not alone in this feeling. So many of us since being diagnosed with Parkinson’s have done many silly things but the truth is that as the song says “we all play the fool sometimes,” with or without PD sometimes we simply wake up on the wrong side of the bed! Instead of being hard on yourself or refusing to ever go out laugh about it- if you are alone although strangers may seem to stare you will NEVER see them again! Frankly, most people are too busy going about their usual lives to notice such mishaps unless you publicize it! So basically it is us who have to come to terms with this perceived sudden loss of dignity. If you are with friends or family they will understand and be supportive. Best thing to do in any embarrassing situation is laugh after you have composed yourself a bit; this will help ease the feeling of vulnerability!
Okay, now for serious part:
After you have had a big laugh and chucked it up to yet another casualty of PD …then you may wonder why do PD Patients have bowel incontinence? Will it happen to you again?
First, as we all know Parkinson’s disease affects all of gastric motility function causing it to slow down to nearly a crawl. Compound this effect with the fact that the large consumption of medications make us severely dehydrated and we also have decrease mobility because we are either too stiff, hurting, or off balance to get around with ease, the end result is severe constipation to the point at times of impaction. Fecal Incontinence as this condition is known where you lose control of your bowels although more common in the elderly can happen to anyone 1/10 people sometimes in their lives. Having Parkinson’s is another risk factor because as I said we do not empty our bowels properly, especially at risk if have feeding tubes.
What can you do to prevent or becoming a hermit your only option?
Since constipation can be so severe or impaction stool can build up behind it and begin to “leak” out around obstruction leading to bowel incontinence. Watch for staining of your underwear, problems reaching toilet in time because of mobility, abdominal bloating or cramping.
- Main thing to prevent is one make sure there are no other causes like inflammatory bowel disease, diabetes, nerve problems.
- Then if the problem is getting to bathroom in time have doctor modify your medication regimen to improve mobility.
- Also, make sure that you maintain a good bowel regimen- includes going to the bathroom daily- using stool if needed and medications both over the counter as well as prescriptions to keep regularity and avoid constipation.
- Change diet- no caffeine like in coffee or tea; no alcohol; if necessary and get a dietary consult as well as Gi consult.
- avoid taking Mira lax, fiber tabs or other fiber supplements.
- Wear depends go to www.Underwareness.com has garments for both men and women that feel and look more natural like underwear.
- wear the latest “butterfly” pads
www.butterfly.com
- If all this fails you can have medications to harden stool. Also try behavioral modification (biofeedback).
- If still having problems there are surgical procedures to tighten muscles around sphincter as well as surgical implant with neuromodulator produced by Medtronic’s called InterStim (sacral Nerve stimulation).
As you can see this can happen to any of us even if we don’t have PD ..so don’t sweat the small stuff – there a lot of things to help if this is a problem but keep moving forward and not letting PD define who you are!
Sources:
defeatparkinsons 