chronic illness, Parkinson's awereness, parkinson's disease, Parkinson's Health

Is the use of complement alternative Medicine (CAM) a good choice for PD? By Dr. De Leon

I thought that it was important to cover this topic since I read and hear many of you discussing the viability of these alternative treatments. Especially since there is a growing interest in our community to resort to use of complementary and alternative medicine (CAM). This means using health and treatments for maintaining wellness previously not employed by western medicine. therefore some people use these treatments in place of (alternative) or in conjunction (complimentary). the goal of these therapies is to focus on the person as a whole- which I and most doctors are in favor of since there can be no healing of the body if the emotional and psychological aspects are not first addressed. However, there is a trend in this country and around the world to forgo conventional western medicine so many are now using the term “integrative medicine.”Image result for living well quotes

This has increased in the last few years, up to a 40 percent and I suspect that as the cost of medicines, healthcare, and number of people with chronic progressive diseases like Parkinson’s, Alzheimer’s and so on  increase so will the use of these treatment modalities. Thus, I felt it to be my duty to discuss exactly what we are dealing with in order for us to become informed consumers and make the best treatment choices.

It is also extremely important to note that in the same time period the rise of liver disease and death due to liver failure has increased from intake of supplements. One of these popular deadly supplements is Kava Kava used for stress and anxiety relief. This is because unfortunately “naturalDOES NOT necessarily mean SAFE! Not only are these products not safe but for those of us who have chronic illnesses and take many other medications or have other concomitant illnesses like high blood pressure, diabetes etc. these products can interfere with the effect of those medications or worsen those other symptoms. For instance, I was extremely interested in finding some weight lose substance especially if it was “natural” since all the prescription medicine interfere with Parkinson’s directly or with the medications. I though that perhaps the popular Garcinia Cambogia would work so I bought a bottle like the rest of millions of people. First, remember that these products are not FDA approved so have variation of amount of needed extract ranging from 50 %to 80% of 72 pills tested. However, if you read the extremely fine print it contains the same chemicals used in many of the other weight loss meds which are contraindicated in people with Parkinson’s and if you should take it could cause severe serotonin syndrome and death. Needless to say that bottle went straight into the trash.

But, you must always be savvy when using any “alternative” herbal or other treatments. remember, there is NO cure for PD. If there were I would have told you and the whole scientific community would be shouting it from roof tops! Trust me, it would not be a secret. Do not fall for sensationalized news and cure all’s!. Beware of the power of the placebo effect and also of charlatans who take advantage of people in need and in pain. The mind is extremely powerful. Mind over matter we always say. Is true if we believe something so strong we can make it happen for a short period of time. This is why patients that participate in research studies do better over all. However, these studies are not controlled or double blinded and usually last 6-8 weeks the exact time before the placebo effect wears off. Do Not purchase anything that promises a quick fix or a cure! No such thing exists. if it sounds too good to be true than it probably is. however, there may be some supplements that may be beneficial for certain individuals although in larger studies have not proven to be significantly better to treat disease than placebo. These supplements include Coenzyme Q 10 – is expensive and should buy from Natures brand only  and must take at least 600 to 900mg – some people cant tolerate due to nausea. I was one of those people. but, this supplement has been used effectively and safely in many other neurological illnesses by me and my colleagues. other than this I really don’t have any other supplements that I would recommend consistently due to lack of evidence or lack of safety like many of the mucuna puriens out here which are not regulated. Plus, we do not know the long term effects of these substances. The marijuana as a potential treatment, as I spoke and blogged previously, is still extremely controversial because there are so many different types if you will and most are synthetic not natural- so we don’t have the whole story. However, studies have indicated that marijuana can worsen sleep cycle and depression 2 of the biggest problems in PD. At present, a study of marijuana oil is being conducted at university of Colorado for those interested in this topic further.

Now, within this realm of CAM we have treatments like

  • Mind-Body Medicine (e.g. prayers, mindfulness, meditation, art therapy)
  • Whole medical systems (e.g. homeopathy, ancient healing systems -acupuncture)
  • Biologically based practices (e.g. coenzyme Q)
  • Manipulative and body based (e.g. massages, yoga, dance etc.)

In the end, it is essential that you have a team of professional who you trust and will listen and treat body, mind. and soul.  We do know and have evidence that holistic treatment works best for over all well being. I am proof of this. However, what ever complementary, alternative, or integrative  treatments you opt to do you must maintain your doctor informed at all times and make sure he or she is on board with the plan so they can guide you through and avoid the perils of possible liver toxicity, overdose, or serotonin syndrome. But, also to ensure that you are being safe and not hurting yourself or making your illness worse. Remember, we do have many new drugs and initiating early treatment has proven to be most effective increasing quality of life and decreasing disability. So why waste time with unknowns (medications, herbs, remedies, treatments) that can be costly and potentially harmful in both the long and short term?

My philosophy all good things in moderation. This includes laughing, dreaming, spending time with friends and family and being useful to others as well as eating and sleeping well with an active life style of both mind and body.

love to hear your opinion on the subject…Image result for Living Simply Quotes

thanks

 

 

 

 

chronic illness, parkinson's disease, Parkinson's Health

Subtle signs that show you have too much stress in your life: By Dr. De Leon

I have decided that “stress does not go with my outfit. so, I am breaking up with it!” you should do the same….. after all is not the stress that kills us but our reaction to it.

I write to deal with my own stress although sometimes I just need time away from everything and everyone for a bit to recharge my body and mind… this is crucial part of dealing with life’s stresses.

We all know that living with a chronic progressive neurological disease like Parkinson’s can be quite cumbersome all on its own. but, this does not shelter us from other life stressors like dealing with family, financial burdens, ailing parents, teenage issues and so on.

I have found that the greatest stressor for me in living with an illness is the disruption in my routine weather is a positive force or not. This disruption, especially if extended, throws me into a frenzy from which it takes a few days to a week to recover. During this recovery time, like today, I can be a bit of a bear to those near me. When I am physically exhausted, worse if there is also an emotional component, I tend to feel out of sorts and extremely irritable. What makes it worse is knowing I need down time to recover but not finding the space/time to do so because there are family demands on hand which must be taken care of. I absolutely hate when my husband is off when I am in desperate need of respite because although he does his own thing and does not put too much pressure or demands on my time, there is that feeling of disappointment he gets because I don’t have my act together. then comes the guilt on my part for neglecting him when he gets such limited time to spend with me and my daughter doing family activities. Even though, I am absolutely exhausted and am in dire need of sleep, I feel obligated to get up after only 3 hours of sleep because he and my daughter have started morning early with a 6 a.m. run and are ready for breakfast by 7 a.m. And thus, the day begins with me barely functioning, stumbling, and feeling quite picked only to be made worse by my daughter asking me complex questions half an hour later even before my medicine has had a chance to kick in. so I loose it. Worse since she got up so early, she too is a bit irritable. I decide its time for everyone to go to their quiet place and recuperate.

But, why do we allow ourselves to get this way?

Surely, there are signs that warns us of impending melt down.

Failure to recognize the signs or ignore them as I do when I am in the midst of traveling to speak, finishing a book, dealing with mom’s car problems (I don’t even deal with my own) and other family drama can be extremely detrimental.

What are the signs that speak volumes of our need to calm down and regroup? the thing is that these same symptoms can be considered non-motor symptoms of PD which can cloud the picture even further. But, with a little common sense and careful observation of our symptoms we can learn to differentiate and change our course of action to diminish our stress levels.

First, increase of head aches: who does not have pain in the head especially when hungry, tired, sleepy, and with neck dystonia? massage your temples and your scalp and neck even use some mint oil extract and place in forehead and temples. This will sooth you. get facial and scalp massages. if cant afford this and hands too weak to massage yourself use a lemon and rub around your head, neck. plus citrus aroma will also be soothing.

Second, jaw pain: may not be related to dental problems or oromandibular dystonia but rather our involuntary clenching of our jaw when stressed. this also can trigger headaches. Relax your mouth and keep teeth apart when dealing with stressful activities – periodically check by stopping what you are doing and relaxing your jaw if it feels better -you are clenching and keeping it too tight. Give it a bit of massage at least a couple of times a day. Insert one finger/thumb inside your cheek and place your thumb/index finger on the outside and rub till you feel all the knots disappear. (don’t forget to wash hands first)

Third, skin irritation. Do you suddenly feel like your skin is itchy all over? is it breaking out? although we know that PD can cause skin dryness especially in scalp and also cause eczema. if you find yourself scratching a lot all of a sudden like I have been these last few days without having changed anything to your medical regimen, diet, water intake, or your hygienic products then most likely due to stress.

Fourth, Bizarre dreams. Once more, we know strange and vivid dreams are part of the disease. But, if these have been under control and nothing has changed in regards to other motor symptoms nor medications and not being consuming alcohol before bedtime, this can be another sign. usually these drams are nasty and disturbing.

Why should we care about controlling our stress?

It is important to deal with the stress because uncontrolled stress can lead to depression, we are already at risk with PD. Also, it can lead to increase weight gain by allowing our bodies to store more fat. It also increases our blood pressure. Lowers our libidos and increases insomnia both of which are already a problem. Plus, it decreases concentration and increases memory problems.

Ways to treat stress:

#1 make time for yourself– so after the melt downs – I excused myself and went to bed. nothing like a good refreshing nap to restore clarity. Do things that make you happy- I go to movies, shop, read, sing, and go out with my girlfriends.

#2 Eat well– do not skip meals or skim up on nutritious meals because these have the power to reduce the effects of stress and stir you away from sugary cravings. home cooked meals are the best- cook when you feel best and store the food. I cook at night often. Cooking lasagna in oven as I write this blog.

#3 Move about– find way to release some endorphins- shake, dance, jump, walk, exercise. I love dancing and singing best way to reenergize. Plus is a load of fun if you do with those you love like your children or spouse.

#4 Sleep- This is the second most crucial after making time for self. talk to your doctor if having problems may need sleep aid ( e.g. sonata, lunesta, melatonin), antidepressant ( e.g. Elavil, remeron), antianxiety (e.g. klonopin), or antipsychotic ( e.g. Seroquel). I personally take klonopin otherwise I could not have restorative sleep. You will feel so much better after a good night sleep and you other PD symptoms will also improve.

#5 Don’t forget to breath! when you find yourself getting completely overwhelmed, stop and close your eyes and focus on your respiration until is calm. I do this at least once a day. problem is remembering to do this when I am busy chauffeuring everyone around. working on it just like I do my stretching in the car even when driving- I must learn to quiet my breathing even when I find myself in a noisy crowd or driving.

So lets learn to stop reacting to the stressors in our lives rather become proactive in preventing and changing our attitudes by letting go of perfect and nonessential things which do not contribute to our well being.

Image result for stress quotes

copyright@2017

all rights reserved Maria De Leon

 

 

chronic illness, dbs treatment for tremors, fluctuations in parkinsons, parkinson's disease, parkinson's treatments

Intelligent Decision Making: by Dr. De Leon

Image result for the road not taken a quote

I regret less the road not taken than my all fired hurry along the road I took.” Robert Brault

Many years ago when I first began this journey with Parkinson’s disease as a young doctor there were very few choices in the treatment of PD. since then there has been an explosion of new treatments  and many are on the way. The news are a god sent like a much needed rain to a dry and hardened soil. However, they can also cause a lot of turmoil and stress for those of us living with the illness.

Knowing which medicine or treatment to choose and how to use it to get the most efficacy is still a challenge for both patients and physicians. but, in many ways this is a good problem to have rather than no choice at all. As new treatments become approved the possible combinations for treating a single individual increases exponentially. Which means that for us patients we not only have more options but also need to be more patient and willing to try many different medications and combinations to find the right one- this may take some doing and above all TIME! Plus, you and the treating physician need to well versed in these new treatments. In order to accomplish this feat now more than ever the presence of a specialist i.e. a movement disorder neurologist  at the helm is crucial.

Both as a patient and physician I have learned that 1) you must have intricate knowledge of a formulation in order to use most effectively plus 2) have intricate knowledge of the person we are dealing with in order to be able to match the two in a positive fusion. This means that sometimes you have to be willing to use a bit of unconventional treatments requiring multiple doses, frequencies and medications to achieve the best outcome possible. I am a primary example of this fine tweaking resulting in my Parkinson’s being extremely well controlled for someone who has lived with it for more than 10 years. The first step to achieving this is being well informed as a patient in order to make the best decision possible given what we know at present. I believe that being a neurologist whose field of interest is PD puts me at a greater advantage but this is something that can be achieved by everyone.

You must start with knowing yourself and your body function. For instance,  many people have asked why I have not head DBS especially since I am young and there is good data showing that early DBS is extremely beneficial decreasing disability. The earliest data indicates patients being stimulated after only 4 years of disease.  I say to you as I have said to those people- although data is great 1) I am doing great with medication- no need to risk brain surgery although minimal risk is still brain surgery. 2) I am not a good candidate for DBS- I am a terrible surgical patient for many factors and more importantly as far as my PD I believe that my quality of life would be worst certainly if I were to do bilateral. I already have swallowing issues and balance issues both of which are known to worsen with bilateral DBS. plus, not to mention I am already overweight due to meds; studies have shown that women have a higher tendency to put on weight on average 20-30 lbs. I certainly do not need this. Although, I firmly believe DBS is a great therapy and is the standard of care but reality is that not everyone will do well.  In order to maximize the benefits of this surgery patient selection is of the utmost importance. Always talk to your physician about the pros and cons and expectations prior to any surgical procedure.

The other thing is that it may take a year or two to find the right combination of medications and as disease progresses there may need to be another trial and error phase not as long but equally challenging for all involved and must be patient. This is not a race to the finish line rather a slow and steady way of life.  Do not discard a medication from your tool box because it ‘did not work,‘ it ‘gave you side effects,’ or because it ‘stopped working’. First, we have to ask what is the medicine treating? is it the tremors? the pain? the stiffness? once we know we are better able to access its function.  Most PD medications do not target all the symptoms motor or non-motor for sure. some are better than other at working a specific function. this is why most often in order to have the best outcome one must take a cocktail of pills as I do. also important to note that the Mao inhibitors like Azilect  in particular usually do not cause dramatic effects unless looking at two specific things- 1) gait – it improves balance and 2) pain and 3) visual problems  so if you have neither of these issues most likely not going to notice a difference. However, I and many of my colleagues believe there is a neuroprotective component to this drug making it more than worthwhile to take. further, it has been my experience that although it is a once a day drug  it does not typically last more than 12 -14 hours hence I recommend taking it twice  a day. we just got approval of a new MAO B inhibitor Xadago which also has glutamate reduction approved for off episodes. We will see how this medication plays out. but the fact that it targets two receptors is a better potential treatment.

All of the dopamine agonists Mirapex, Neupro, Requip  can cause sedation, impulse control, and increase sexual urges as well as hallucinations in those that are prone to dementia or have dementia. Mirapex has the most sedation, impulse control and sexual impetus followed by requip. So it is important that if you are already prone to daytime sleepiness or have gambling problems or are ultra sexual that you talk to your physician about not using Mirapex or Requip unless as last resort. Also note that these medicines usually loose efficacy around 10 years so may need to take a small hiatus ( 6months to a year) and return. I prefer Neupro because does not cause sedation, OCD, nor worsen dementia. but, it can cause water retention especially in women. I myself alternate the neupro patch 2mg with 4mg. work great so sometimes have to find the right dose and is not a conventional  same daily dose. these are fairly good for tremors, stiffness, and slowness as well as for restless legs, rem behavior, bladder control,  mood (some),

The dopamine where levodopa –Sinemet is the gold standard of treatment. We also have Stalevo, Rytary and Duopa. these compounds approximate the natural substance so much better hence the effect is the best particularly when it co0mes to mood, memory and cognition in general. when people have trouble concentration , focusing, multi-tasking, learning, enjoying thins this signifies a deficiency in this chemical. what I have discovered is that levodopa in what ever form is what is required to maintain these capabilities without it we may control, tremors, stiffness, walking but we are going to feel awful, moody, cranky, fatigued, uninterested, have poor concentration and memory in fact you wont feel like you any more even if you look good and are able to do everything. of course this is the one associated with dyskinesia so people are afraid to start and even doctors don’t want to start early sometimes because of this fear which in the old days was much more certain to occur and start sooner. However, with all the medications at our disposal there is no reason to delay taking medication and even small doses of levodopa so you won’t  feel like a zombie or sub-human. I started on regular Sinemet but caused lots of nausea then went to extended release which really did not last much longer but was last nauseating then because I needed higher doses and trying to keep risk of  dyskinesia I switched and I absolutely love this drug because so many doses and don’t have so many peaks and through and again less GI and orthostatic symptoms. as my symptoms have advanced I could not extend Stalevo to higher doses without causing daily migraines – not worth the pain.  thus when Rytary came out, I was first in line to try. I too love this drug and has a benefit unlike the others that I believe it mimics more the natural brain chemical release because for the first time since I got ill I felt like “me!” even my doctor who has known me since residency has stated that I was back!

A couple of side notes on Rytary which are my own personal observation and opinion but merit looking further into. First, I find that this drug is much more constipating than any of the others so have to be ware of maintaining regular bowel schedule. I had hear and read that some people experienced chest pain and arm pain with this drug. I was on it for over a year before I began to have lots of shortness of breath and chest pain with medication- turns out caused by severe hypertension. once we added more blood pressure medication I am able to tolerate Rytary once more. so, if there is family history of heart attacks, stroke especially since women seem to have higher risk of developing strokes after PD may want to talk to your doctor about concerns, monitor blood pressure regularly take prophylaxis for stroke and heart (these risks increase as we age as well). also follow with a cardiologist regularly I do. This medicine may be best suited for people with low blood pressure. nevertheless, if you have high blood pressure as I do does not mean you cant take it means more careful and precise control of PD meds and high blood pressure.  I find that taking the medicine staggered works best but I would not recommend doing this on your own without talking to your physician. what I mean is that the recommended dose is 2 tablets twice, three times a day etc.  but I discovered among my friends who were placed on this medication at the same time I was at similar doses having disease approximately same duration of time and they are my age, that after a year’s time all developed severe dyskinesia; only difference between them and me is gender ( 4 men; 1 woman). All these people have undergone or are waiting to have DBS. about 6 months ago I began experiencing mild dystonia/dyskinesia which I first attributed to having had decrease of meds due to blood pressure issues. however, once I restarted my previous regimen I quickly noticed that when Rytary wore off I was having the problem. so I began taking them in tandem 1 tablet then 4-6 hours later the second tablet and voila no more dyskinesia and I feel wonderful. prior to this I had consider adding Comtan with it to extend duration.

As you can see even for an expert like myself, there is a lot of trial and error and fine tuning. even addition of medication like amantadine which at one point I could not take because it triggered psychosis. however, our bodies are always changing, our disease is evolving and the illnesses we have at one point may improve or worsen interfering with PD treatments. For instance if you have H. pylori this will cause much more nausea and vomiting than usual plus will render Sinemet less effective – thus if something changes suddenly or dramatically from status quo need to speak to your physician.

In the end knowing your own body, being informed about medications, and having a good rapport with your physician will allow you to make the best informed decision about what treatments are best. Always knowing the end game helps plus another thing that Is a crucial or even more so than the treatment is having continuity of care with the same physician. Only then can they truly give you the best choices available based on your own uniqueness. Inadvertently, sometimes we sabotage ourselves by hoping from doctor to doctor which only creates confusion, unnecessary repeat testing and much disruption and frustration to your own life; because first you don’t allow enough time to build an appropriate patient physician rapport which would guide the specialist to making the best optimal decisions on your behalf . Second the constant change means a change in medications most of the time because each one of us is like an artist who sees the big picture and end result and we work in our own way to achieve that- but each physician like the artist has a different picture in mind- only leaving you the patient completely dumfounded and unwilling to try new things or see the one doctor who potentially could bring the masterpiece together with all the broken pieces discarded by everyone else.

Knowledge is power! Be informed!

Copyright-2017

All rights Reseved- Maria De Leon MD

 

chronic illness, medications in Parkinson's, Parkinson's awereness, parkinson's disease, Parkinson's Health

Tips for Good Sleep in PD; by Dr. De Leon

‘A Well Spent Day brings happy sleep.’

We all know that sleep is vital for our health; but how to reconcile this knowledge with how our illnesses make us feel ?

There I was last night falling asleep at 10 pm but unable to go to bed as I desired; since I suddenly began experiencing severe heartburn after taking my last dose of pills of the evening. So instead of finding rest in my own bed had to search for meds to relieve awful pain in my belly and throat which felt as if I open my mouth fire would surely come out. After taking several medications to ease the burning pain and drinking mint tea and passing the floor for at least a couple of hours my fiery pain was finally easing and although I was quickly becoming more alert through the whole ordeal I was eagerly anticipating a good nights rest after the last two weeks events which had maintained me extremely occupied and unable to sleep much. and then as many of you who live with a chronic illness in their life can relate as soon as one problem eases another pops up.

Sure enough after showering putting on my pj’s  relieved my belly pain was FINALLY subsiding for me to be able to recline, a new pain set in. This one was of course a real pain in my derriere literally and figuratively! Now my hip was in deep throbbing pain for no good reason other than to interrupt my sleep. The pain which was centralized in my ischial tuberosity  ( the siting bones of our pelvis) was worst with laying down- surely there was a low pressure storm brewing somewhere in my vicinity. More muscle relaxants needed along with stretching exercises and a deep massage to the area along with more pacing until pain began to ease around 2 a.m.

 As you can see and know from personal experience – getting a good night sleep has multiple layers of complexity. In order to understand our problem and how to achieve better rest in order to delay cognitive decline, diabetes, heart disease among many other problems caused by poor sleep not to mention increase pain, fatigue, stiffness and increased depression, we have to look at the many facets blocking of what should be a non-challenging natural occurrence.

First, we have to understand that as we age our own circadian rhythms undergo natural changes. Hence, teenagers can sleep till noon while elderly people usually arise very early in the wee hours of the morning. More importantly is the fact that for those of us who suffer neurological illnesses such as PD or Alzheimer’s, our internal clocks can become completely unable to function and become disconnected. This disruption is what causes us to get confused and invert our sleep wake cycles- sleeping all day and up all night. We need to avoid this pattern because the disruption leads to accumulation of amyloid plaques hallmark of Alzheimer’s.  In end stage Alzheimer’s and in PD people rarely sleep for long periods of time , rather they dose off and on all throughout day and night making the propensity for confusion, hallucinations, and psychosis that much worse.

The way to prevent and combat this natural tendency to shift our sleep caused by our disease is to make every attempt to reset our inner clocks. This takes a continuous effort on our parts. ( see ‘8 top sleep habits’– bit.ly/NN-SleepTips) experts have suggested that although maintaining a routine of bed time, the most important factor is Keeping a routine of awaking at the same time each day. This is I believe one of the biggest challenge’s we face. certainly for me. It’s easy during school days since I have to take my child to school however, it goes out the window during breaks and weekends. One way to help is making sure that the room you sleep ion is very dark at night but light comes in in the am. if unable to get light in, sleep experts recommend the use of a light box.

In order to improve night time sleepiness is….

  • taking sleep medications which I do frequently- the best thing I have found to help and prevent tolerance hence decrease effectiveness from developing is alternating meds or taking one type several times a week rather than daily.
  • increasing physical activity during day time – better if early morning. do not want to exercise late because it will only stimulate you and keep you awake. even if you are in the hospital- get up if able to and walk in the hallways several times. or do tai-chi if wheelchair bound.
  • get rid of distractions– i.e. TV’s, iPad, iPhones etc. from your room.
  • try to get natural daylight everyday for at least 30 minutes- open the blinds of your house, room, or go sit outside, better yet walk outdoors.
  • avoid alcoholic and caffeinated drinks in the evening.Image result for can't sleep funny images
  • keep room cool and quiet.
  • take melatonin.
  • make sure bed is comfortable for you. May need to get a memory foam  etc.

Second, another common obstacle is pain, stiffness, discomfort- as I experienced last night. Pain is usually worst at night, experts says  because of lack of outside stimulation to distract us from our pain. Sleep deprivation can cause a vicious cycle  i.e. more pain hence less sleep.

  • What we do is be able to have treatments available to counteract or avoid completely if its something that happens routinely.
  • Talk to doctor about pain meds – avoid narcotics if at all possible- prefer muscle relaxants like klonopin, baclofen, tizanidine and even anti-inflammatories
  • increase dopamine meds
  • stretch/ not exercise- frequently during the day and in the evening before bedtime. that was my problem yesterday, I forgot to stretch as often as I usually do and spent too long sitting hence the resulting pain.
  • some of the pain can come in form of restless legs- again talk to doctor to adjust medications- perhaps longer acting dopamine agent like Neupro patch or Rytary will do trick.

Third, other medical problems or non-motor problems…

  • increase urgency and frequency or urge to urinate– talk to doctor about medications for this; keep diary as to cause. Treat urine infections and decrease fluid intake after 8 pm. Rule out prostate problems or enlarged uterus or other female problems as the cause.
  • bed wetting– get alarm for bed; wear adult undergarments, get medications , make sure not diabetic, and make sure constipation controlled. find cause – is it because they cant get out of bed? get bed side commode; or because can’t get out of clothes – find clothes with Velcro, magnets, snaps etc./ to make it easier. cant get out of bed? change sheets to satin, increase dopamine meds to improve mobility and or prescribe meds to decrease urgency and frequency like Detrol, vesicare, myrbetriq.
  • sleep apnea common in older men but also more common in people with MSA- use bi-pap or c-pap- these machines are a lot smaller, talk to Ent specialist may be able to do surgery to correct.
  • Rem Behavior– increase dopamine meds, use melatonin, don’t take dopamine agents so close to bed time give at least 1-2 hours.
  • if having reflux like me – take antacids, ppi’s ( protein pump inhibitors) like Zantac or my favorite is Carafate liquid or pill before each meal and at bed time. Avoid spicy foods, caffeinated foods and alcohol and realize that antibiotics usually can deplete flora making heart burn more intense as it did me. talk to gi doctor make sure don’t have infection with H. pylori which can also affect absorption of medications rendering them less effective. easily treated with antibiotics.
  • try to take as few medications as possible and fewer times as possible to control symptoms- fortunately we have so many new options that we can use intermediate and extended release and patches which can greatly decrease number of times we need to take meds because not only having a neurological problem makes us more sensitive to side effects especially in us women but the more meds we take the higher the interactions and higher possibility of side effects. In my opinion, long are the days where we had to treat patients with medications every hour to 2 hours around the clock because of all the advances. So if you find yourself in this pattern talk to your doctor about other choices e.g. dbs surgery, duopa  pump, neupro patches, addition of Comt inhibitors like comtan/tasmar.  Fortunately we should soon have hopefully within the next year a 24 hour Comt inhibitor (Opicapone), etc.
  • neuropathies- address the cause and treat. Is it related to PD or B12 deficiency or diabetes ?

In conclusion, you have gathered already that proper sleep hygiene takes work and effort and that one fix does not fit all and even for same individual as disease progresses there are many factors involved which have to be addressed by you and your physician. Don’t be embarrassed to discuss or ignore. Adjust both your medications and life style to accommodate for these changes. May also require a stimulant during daytime to maintain sleep wake cycle which I often prescribed to my patients in conjunction with sleep aids. All in an effort to try to maintain a “normal” sleep wake cycle.

As I finish typing this blog, I have already taken my sleep aid so when I am done I will be ready for bed sensing sleep beginning to hit me before I get second wind and I am up all night again; which I could easily do and my body prefers. However, from experience as patient, doctor, and caregiver the next 24 hours will be mostly unproductive and exhibit poor concentration skills and decrease multi-tasking abilities. I certainly don’t need this nor do you since we all have responsibilities to attend to.

This week make time to start looking at your sleep habits closely and identify the problem areas then talk to your doctor to help find the right treatment for you. plus remember that your disruptive sleep patterns not only impact you but your bed partner as well who may become as sleep deprived as you from constant commotion in middle of the night.

Happy Sleep everyone……

  • More info go to bit.ly/NN-REMSleepDisorder
  • Source: Cohen, Marisa. “sleep Matters.” (April/May 2016) Neurology Now 45-49.
  • copyright-2017
  • All rights reserved- Maria De Leon MD

 

chronic illness, parkinson's disease, Uncategorized

Treatment for over active bladder in Parkinson’s (revisited) : by Dr. De Leon

I am sure you guys have seen the commercial for inflammatory

disease -ulcerative colitis/Cronhs- where it says that no matter

where you go and the situation the view is always the same…and

shows a bathroom door.

because of this I decided to re- post since this is a huge issue

affecting so many of our lives which greatly impact our quality of

life but more importantly is a problem which has a solution in most

instances..for more information stay tuned to a mjfox webinar

i will be participating in on 4th Thursday of this month…please be

sure to stay tuned. It will take place on April 20th from 11am-12 CT/12-1pm ET Dr. Jorge Juncos and Dr. Janis Miyasaki are the leading experts for this talk.

 

 

Whenever somebody tells me, you go girl! I generally have to!” -unknown

As I mentioned before in a previous blog Parkinson’s patients as do patients that have various parkinsonian syndromes like MSA ( multi system atrophy) can have varying degrees of bladder issues ranging from increase urgency,frequency to outright incontinence!  Having bladder function problems can lead to severe psychosocial problems like depression and anxiety particularly among patients over 65 years of age, they can also lead to significant medical and economic burden.  This is by no means an easy task to solve since independent of neurological disease, over active bladder ( OAB ) affects up to 27% of men and 43 % of women of the global population. Now add a neurological condition atop of this and the problem becomes even more challenging for physicians.

Fist,we should review a few medications which make this problem worst, if possible should try to avoid:

  • Diuretics
  • antipsychotics
  • cold medicines
  • narcotics
  • sedatives
  • hypnotics
  • antidepressants
  • antihypertensives
  • analgesics
  • Over the counter sleep aids
  • herbal remedies

Proper management of patients with urinary problems like any other problem begins with a thorough and comprehensive evaluation, including a void diary, urine test to look for infections, diabetes and the such. Of note those of us who have chronic illnesses by definition are on multiple medications which tend to complicate evaluation and treatment but worsen by age. Physical exam is also extremely important since it can tell physicians for instance if there is enlarged prostate in men or enlarged uterus in women causing pressure on bladder or blocking sphincter. Your doctor may choose to do urodynamic studies which includes measuring pressures of pelvic muscles and urethra and voiding flow-this sometimes requires insertion of needles into bladder and abdomen to evaluate…can be uncomfortable and moderately painful at times especially if you are in mid to late stages of disease. Other tests may include cystoscopy which involves looking into bladder with a camera inserted through a long narrow tube via the urethra …similar to a colonoscopy except different organ! Other times, they may simply choose to do volumetrics…fill your bladder with fluids via an IV ( intravenous Cath) until they can reproduce symptoms.

Once all these studies are done, which usually are done either by a urologists or a gynecologists, and a cause of the urinary malfunction is ascertained then treatment can be instituted.

Aside from evaluating all medications which MUST always be done at the onset of any visit to make sure current medications are not the ones causing or aggravating the problem, an adjustment of dopamine medications is often necessary and should be done early on as well. This is because Parkinson’s and other parkinsonian syndromes commonly have bladder dysfunction as part of the disease spectrum. If however you are still having problems after going through above steps then the recommendations are as follow:

1) Behavioral modification:

This entails a strict commitment on the part of the patient in order to improve voiding…if done properly..it can be very effective. Insurance will pay for this however, must go to a trained professional experience in this type of therapy to have greater success rate.

I like this because this is treatment modality epitomizes “individualized medical care

This includes voiding diaries, timed voiding, pelvic floor muscle strengthening exercises, and urge suppression techniques (e.g distraction, self-assertions), biofeedback, electrical stimulation into sacral nerves or pelvic muscles, fluid management, caffeine, reduction, dietary changes ( I.e avoiding bladder irritants like caffeine, chocolate, spicy foods etc.), weight loss and other life style changes.

The beauty of this is that it can be combined with other treatment modalities.

2) Pharmacotherapy:

this includes a number of oral and transdermal( across skin) medications. These can be very effective and used after behavioral therapy failed or in combination. However, their efficacy is limited due to side effects although usually non life threatening. All medications come in extended release.

The medications in this class are primarily antimuscarinic- they include oxybutin (Ditropan, Oxytrol), tolterodine (Detrol), solifenacin (Vesicare), darifenacin (Enablex), **trospium (Sanctura- does not cross blood brain barrier), fesoterodine (Toviaz). **This latter may be best suited for treatment of elderly patients due to less side effects. Typical side effects of this class include dry mouth, constipation,dyspepsia, urinary retention, urine infections, impaired mental status, and dry and itchy eyes. Since a lot of these symptoms can already occur with PD or as side effect of other PD medications have to be extra vigilant when starting these meds and discuss any sudden changes with your physician ASAP!

The new comer is mirabegron ( Myrbetriq) for those that can’t tolerate antimuscarinic. Although may act as one it is a beta 3adrenoreceptor. I find this medicine to work very well especially for those patients that have mixed type urinary problems where they have over activity and increase sphincter control.

3) Botulinum toxin A:

Once patient had failed above treatments, your physician may suggest this treatment modality. However, not everyone is qualified to do this procedure…it requires operating room time and frequent visits…effects can last up to 9 months (on average 6 months). You Must always have an experienced physician doing this procedure. It is expensive and not all insurances cover costs.

4) Sacral neuromodulation:

This has become the leading treatment of choice for those that do not respond to normal treatments. This treatment was approved since 1997 by FDA . Reports have shown great efficacy and safety with gradual implant of electrodes into third sacral nerve foramen (aperture) initially during a test phase of 1-2 weeks followed then by implantation of pulse generator. The electrical impulses delivered to the root of the third sacral nerve has been shown to reduce urgency, frequency, and incontinence. Most common side effects include pain at stimulator site, pain at lead site, lead migration, electric shock, and revisions. However, as these procedures are done more frequently, they are becoming less invasive along with smaller devices which will lead to fewer adverse effects. Just like having DBS, you will need periodic adjustments and will not be able to do MRI’s and will require replacement of pulse generator.

5) Surgical Intervention:

This still remains as the last possible alternative for severe cases that are unresponsive to any of the above treatment modalities.

—————————————————————————————————————–

References-Kim, Ja-Hong. Management of Overactive Bladder and Urge incontinence. Practical Neurology. Vol. 13, No.7, September 2014. 27-32.

Copyright-2017

All tights reserved- Maria De Leon MD

Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

caregivers and chronic illness, chronic illness, Dealing with Grief/ loss in PD, parkinson's awareness month, parkinson's disease

Dealing with end stage Parkinson’s disease- the long goodbye: By Dr. De Leon

“..Before the prospect of living less than everyone else, I have decided to live faster, more fully…” Alexander Dumas – la dame aux Camilles

 

Lately, I have been thinking about this subject quite a bit especially since one of my dearest friends has been diagnosed with terminal disease. For the first time this in my life, I have found myself to be at a loss for words. This is saying a lot for aside from being a physician who has delivered bad news a thousands of times, I have also cared for many loved ones with terminal illness. I think the reason I am having such inner turmoil is because she is my own age with a child who is my daughter’s age aside from being one of my best friends. I am not ready to let go. Especially since only two weeks prior to her diagnosis we had made so many wonderful plans. Of course visiting her at MD Anderson also conjured up a whole host of emotions. The smell and place reminded me of my first patient in this same hospital I had to pronounce dead in front of her family while I was an intern. What made it so difficult at the time was the fact that not only was she Hispanic but died of melanoma which runs in my family plus she was my very own age at the time 26.  My heart breaks even now remembering her and then thinking of my friend.

This situation made me think of everyone dealing with family members and patients themselves who are terminal. How do we deal with them? What do we say? How do we treat them?Image result for image of terminal illness

As far as Parkinson’s is concerned not much literature is available on the subject as some of you have inquired from me recently.

I decided to write some points on the subject. Although Parkinson’s is no longer considered a terminal illness as it was once 30 years ago. The new advents in treatments have greatly improved our quality of life yet; in many parts of the world where medicines are harder to come by it may still be considered a death sentence. Nevertheless, in most cases PD is a long goodbye. Subsequently, we are forced to learn to “live with death” in our lives for an extended period of time. Thus, the ways we deal with death and terminal illness in our society have changed dramatically since a great deal of people live with chronic progressive neurodegenerative illnesses. Unlike the cases when patient died suddenly – the patient him or herself also have to learn to grieve while still alive and fighting to hold on. This can cause a lot of stress in the family particularly because grief is a family matter.

Dealing with our own loss can be difficult enough as I am finding out. Moreover, thinking on how to comfort those experiencing grief first hand can be that much more daunting.

First, for the caregiver.

You might be experiencing trepidation in how to proceed with the relationship once a loved one has entered the end of stage of the disease. Try to remember that your loved one is still the same person even when they have dementia and can no longer communicate. Underneath they still are the ones you love. If they are still lucid try to focus your relationship on one another rather than on the disease. Don’t focus on unsolved issues. Focusing or bringing up these to light is not going to help the relationship any rather make it more challenging. Don’t underestimate the power of your presence. But never try to be a counselor. Be a listener only.

Secondly, the other thing I learned through the years but especially while taking care of my dad. Dyeing is NOT a science. There is no time frame nor right or wrong way to die. I so wanted my dad to talk about his life, what he liked and did not like. Plus wanted any advice, pearls of wisdom he could share with me; but he never could do this for me. I suppose it was too painful for him to express and I too incentive to his feelings being selfish wanting to know more about his life before he passed.

When it comes to dying, some people accept it and come to terms while others may choose to live in denial. Allow them the freedom to choose. Plus denial is a natural self-preservation mechanism because the alternative is too frightening to cope with. As long as the denial is not causing harm it should not be contested. They might be afraid of letting family down, losing control of independence, bodily function etc. Offer spiritual support but as I found out with my loved ones sometimes it is easier for them to seek support outside of the family. Offer to have spiritual counselors come by regularly like ministers, priest etc. My grandma really enjoyed this time even my dad to a certain degree especially when other congregational members came to sing.

Should we keep vigil by their side when time draws near? Get your cues from your loved one. Ask what their desires are. Being near a loved one as they are dying although painful can be a very beautiful sacred experience increasing your inner strength, even though at the time you may feel helpless and powerless. It also allows you to give your loved one permission to die if you sense resistance on their part because something seems to be holding them back. For instance, when my dad was in his last breaths (agonal state) I could sense his hesitation to let go because he was worried about mom. I told him it was ‘ok’ to let go. I emphasized the fact that we loved him very much and would see him soon and that mom was going to be fine with us. He passed away that evening.

But keeping vigil can be emotionally and physically exhausting.

Remember to take care of yourself as well. Take breaks and don’t forget to eat and drink fluids. You don’t want to end up in hospital yourself. You may choose to have love one die at home, hospital, hospice or nursing home. You and loved one should decide ahead of time. Both my dad and grandma wanted to die at home.

Third, is ok to allow yourself to grieve which usually comes in waves of emotions. Sometimes you may start grieving as soon as the end draws near other times may not occur till much later after their passing.

Guilt is a normal real part of grieving. I also experienced feelings of guilt after my grandmother’s passing, questioning if I had done enough. I would second guess my decisions wondering if she might have lived longer if I had kept her under my care the last couple of weeks. Remember that these feelings too shall pass. If the grief or the guilt is not seeming to go away make sure you avail yourself of a professional grief expert to help you heal.

So my advice is:

  • Laugh often
  • Really listen
  • Try to keep life as normal as possible
  • Provide genuine support
  • Make a wish list
  • Help maintain their dignity
  • Provide physical contact as much as possible
  • ask for specific needs which might require assistance

#Unite for Parkinson’s this coming month of April!pdftulip

 

sources:

http://www.nhs.uk/Planners/end-of-life-care/Pages/coping-with-a-terminal-illness.aspx

http://www.hospicenet.org/html/help_yourself.html

chronic illness, dopamine and parkinsons, fluctuations in parkinsons, parkinson's disease

Anxiety in PD: by Dr. De Leon

cation

anti-anxiety pills, I would take them but I am afraid …”

Anxiety also thought of as excessive worrying is something that I have had lots of experience in dealing with as a physician and caregiver but until my medications were reduced after last hospitalization, I myself had never felt this way. I am not a fan.

As it turns out nearly 20% of people with pd experience these symptoms during the life of the disease. Fortunately, this is one of those symptoms which is extremely treatable since we have a slew of med. unfortunately, it is often misdiagnosed or overlooked causing severe mental and physical anguish.

We have recognized anxiety  as a non-motor symptom of PD not simply a reaction to having disease. As we learn more about Parkinson’s we realize that anxiety can be a presenting symptom and even precede motor signs and symptoms by many years.

There are several presentations of anxiety. The most common is  general anxiety where a person becomes overly concerned with things around him or her like when is the next doctor appointment, or lunch meeting. You may feel like passing out, have gloom and doom feelings, shortness of breath, heart palpitations, sweating, dizziness, chest pain, numbness and tingling or pins and needles. They may even cause spontaneous crying, vomiting, or difficulty swallowing ..tightness in throat.

I must say that this is the form most often encountered by me in my patients. however, i now know that I failed at times to treat the underlying cause. I recall a sweet older patient who began having ‘on’ and ‘off’ periods would over dose on Sinemet each time she had an ‘off’ period due to the severe anxiety only to aggravate her dyskenisias. Not really understanding that what she needed was more dopa medication more evenly spread out to stop the ‘off and assuming this was  unrelated to her dopamine levels I prescribed Ativan ( anti-anxiety medication) but quickly she began popping these pills like candy in some ways making her anxiety worse by severely compromising her respiration.  Until I had this similar problem several months ago, I did not fully comprehend the severity of the problem, the incredibly overwhelming feeling of lack of control and feeling of being consumed by this emotion as well. I understand how people that take drugs are constantly after a next “fix.” You simply want to feel normal or at least that feeling of lack of control, and complete incapacitating nervousness to cease.

Since, I was placed on a much lower medication dosage than I was used to, the lower doses were not lasting as I was used to without feeling gaps. Now, I was experiencing on and off symptoms and found myself completely absorbed in my day to simply waiting for the next dose. This was completely foreign to me in the decade I have had pd I have never had to set my watch by my meds. Because I am well controlled and have several long acting meds, I don’t feel the gaps and certainly don’t go into panic mode if I am a bit late taking medicine or forget. I do however, get stiff, slower and stat having pain or visual problems if I forget completely. Yet, here I was like a drug addict counting hours and constantly looking at the clock to see if it was time to take my next pill. No way to live!

So, I decided to deal with the side effects of my meds from a different angle and stop this madness which lasted less than two weeks but felt like an eternity. I restarted my medications at previous doses and voila! No more anxiety. I could breath again normally and actually be productive once more. This of course, thought me a huge lesson, realizing that in my practice as well as many patients out there that complain of anxiety or difficulty breathing are actually undermedicated. They don’t need anti anxiety meds they simply need higher doses of dopa that is continuous and not fluctuating.

This is because the symptoms are extensive and can mimic many other illnesses including, thyroid disease, low blood sugar, heart attack, and asthma doctors may want to do other tests to rule out these more serious and potentially lethal diseases. However, the best way to properly diagnose and get the right treatment is to maintain a diary.

  • When symptoms start?
  • Are they Daily?
  • How long they last?
  • Do they occur multiple times a day ?
  • Are they following or preceding  medication intake? Food in take ?
  • Activity bring on?

Treatments:

Once source correctly identified a new regimen can be implemented. In most cases of anxiety in people with Parkinson’s are due to under medication in my experience – thus the solution is to increase levels of L- dopa either more frequent dosing, larger doses or both.

However, once all other possible causes are ruled out and not improving with higher dopa levels, anti -anxiety meds in the benzodiazepine class are implemented (e.g. Ativan or klonopin).  Also Ssri’s  anti-depressants like lexapro, Zoloft, or SnRI’s such as Effexor, Cymbalta, or Remeron can be prescribed. Even behavioral therapy might be considered if symptoms are not subsiding along with  antipsychotics preferably those like  Seroquel, Clozaril maybe given without worsening PD;  perhaps  even the new drug Nuplazid could be instituted although no data available at present time.

Don’t suffer in silence get help if you are having anxiety particularly if altering your life style or causing severe physical and emotional impediments. fortunately, I am back to myself not looking at watch every 5 minutes waiting to take next dose…so that I could regain some temporary sanity.

More info:

http://www.pdf.org/anxiety

 

chronic illness, parkinson's disease, Parkinson's Health

Happy New Year-2017! By Dr. De Leon

With this in mind, I am aiming for the stars. But, first I want to thank all (you) my readers for almost 6 years of wonderful communication, interaction and allowing me to come into your homes. I think this will be our best year yet. I hope that you will continue to share with me in this journey of life with Parkinson’s disease as the year unfolds.

Surely, we will face challenges as we traverse the hills and valleys of our lives with PD just as certain I am that there will also be many triumphs to rejoice over. No matter what lies ahead for you, I want you to know that you are not alone. God loves you as do I, remember this as you reach for endurance as you begin to climb mountains of despair, pain, misunderstandings, or self-pity  to reach the summit of acceptance, self-love, and inner strength, showing PD who’s boss. When you do, the view will be breath taking, as some of my closest friends who have climbed Kilimanjaro will attest and every bit worth the fight to the top.

There will also be valleys of green grass and flowing water where you can rest and feel at peace helping others who come behind to remain steadfast in the battle; to stay silent when there is nothing to say, laugh as much as you can whenever possible for it is the best medicine there is, lend a helping hand, or simply sit by someone’s side in the midst of adversity. Because those of us who have lived with chronic illnesses in our lives have learned that the race goes to those of us who remain always vigilant, humble, with steady nerves and habits with a keen eye never turning our back to a monster that can destroy us if we lose interest and let our guards down.

So don’t make lofty goals and resolutions you are likely to break rather invest in yourself, prioritizing your time, your energy and your gifts. Make short, intermediate, and long term goals. As I said before, one shuffling step at a time!

Happy New Year!

Topics to be covered this year per the choice award interests survey of PDF ( Parkinson’s disease foundation)-

dystonia, dyskinesia, fatigue, constipation, cognition-ways to maintain, sleep /rem behaviors

Please let me know if there is a special topic you are interested in learning about/ or if you want to be a guest blogger-

send me information to deleonenterprises3@yahoo.com