caregivers and chronic illness, Parkinson's awereness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health

Parkinson’s disease and The Work Place: By Dr. De Leon

lucile ball

This is a classic picture of one of my all time favorite comediennes with a well known skit. Every time life comes at us fast, this is what I am reminded of.  Sometimes no matter how hard we try, we have to swallow some of the stuff coming our way in order to keep moving forward. As I have been having more recent medical complications due to my Parkinson’s disease and medication side effects, I again was reminded of Lucille Ball. I like her initially was thinking in the last few months that perhaps I was on the other side and I could handle going back to working as a physician despite my PD (easy- peeze-no problem). However, as life demands have increased followed by  one thing, another and another, I have begun to feel like things are speeding up on my own conveyor belt causing a big pile up, making the juggling and keeping up a bit more hectic and demanding. This does not mean I am giving up on practicing neurology again or stop my advocacy.

But, I have begun to think more about those of us who live with chronic illness and have a job, trying to maintain one, or are looking for ways to earn a living with a different career after PD diagnosis.

As many of us have learned, it is not always possible to keep working at previous capacity or even at any capacity when illness strikes particularly in the face of continuous fluctuations especially if sudden or unpredictable, as mine has been lately, or as we approach advanced stages and begin experiencing motor fluctuations such as dyskenesias.

According to a British study of 308 Parkinson’s patients, 82% had ceased to work after 10 years of disease, 57% retired early like me due to disease.

We all know life with a chronic disease like Parkinson’s is a constant juggling act. We have to learn to balance our health along with family, social, and work responsibilities. This can be a feat for many.

When we first get diagnosed after the initial shock wears off and reality sets in, we have to consider our financial resources to be able to continue providing not just for those who depend on us; but more importantly for the increasing financial needs that come with being chronically ill.

So as you contemplate your future financial stability, you must start making concessions for a time when you are no longer able to carry out your present job duties or perform any standard job. Think of the worst scenario and build from there but without going to panic mode or being paralyzed by anxiety and fear.

I am sure you will begin to wonder if you should share your diagnosis with your boss or fellow employees.

First, I have to say candidly and with all due respect-it is no body’s business unless you want it to be. If your job is unaffected – may not need to disclose. But if you are having to take off more, or performance no longer the same as it was prior to symptoms of PD, this maybe an indication of the need to discuss diagnosis sooner rather than later. If you are self-employed of course you have more autonomy. You have more flexibility of decreasing hours; keeping in mind as someone who knows first-hand about running a business when boss is ill productivity and quality inevitably begins to decline unless there is someone else with vested interest to maintain. Also when you are the boss, your responsibility to those you employ supersede your take home, this means that when earnings decrease only person affected is you ( particularly at the beginning unless you curtail number of employees and/ or shut business down).

Second, take care of yourself and your health by eliminating undue stress by asking employer for things to make your life easier. Taking more breaks, coming in late once a week, having the appropriate tools to make job easier, higher chairs, work from home, etc. of course the better the worker and more indispensable you are. Subsequently, the more likely to have leverage and demands (needs) met.

Third, prepare yourself mentally about the possibility of losing your job due to PD. Few ways to be prepared for future is to continuously learn new skills (I have become a writer), update your resume, look for jobs that allow you independence, flexible hours, work from home such as telecommunications. The key is to find a new passion. We all know that when we are actively pursuing what makes us happy we infuse joy to others and work is no longer so stressful. After all you have the keys of your destiny to make the right accommodations to help with your disease.

But just because its fun it does not mean it will necessarily be easy. After all work is work and can exert a toll on our bodies. for instance, even though I very much enjoy traveling and speaking, this requires a lot more dopamine than when I am just relaxing at home.

Fourth, ask yourself truthful questions like does my irritability make it difficult for others to work with me? Could my cognitive slowness cause a serious problem at work?, do my tremors get in the way of performing daily activities at work? If you answer yes to any of these questions, you may need to talk to your employer about finding ways to avoid or diminish these symptoms so you won’t lose your job. Perhaps, it may be wise to think about career rehab or alternate jobs, as I mentioned earlier especially within your place of employment. Does your boss need meticulous work behind the scenes? PD patients have been found to be more capable of performing these types of tasks especially if repetitive.

Fifth, do not underestimate your mood- particularly for us women with PD it was discovered in similar study as above that women are more prone to leave the work force earlier due to depression, anxiety, and overall general poor quality of life. We as women also have to recall that we have more stressors such as being caregivers to elderly parents, children, grandchildren, and many times have less financial resources available to us. remember to enlist help of a team of professionals to help planning for future. these include social workers, estate planning lawyers and financial planners.

Finally, You may require to plan for both long and short-‘term costs of medication, home adaptations, insurance and other health care related needs’. This also includes planning or at least thinking weather or not you might apply for social security disability or early social security which can affect retirement plans.

For more information go to :PDF  link below to find financial and legal advice/support.

 

Sources:

http://www.pdf.org/en/science_news/release/pr_1415296989

http://www.pdf.org/fin_legal_work

http://www.pdf.org/en/fall05_employment

When to disclose illness at work

http://www.ncbi.nlm.nih.gov/pubmed/16941456

 

 

 

parkinson's disease, Parkinson's Health, Parkinson's treatment

Tips to Over come Communication Impairment in PD: By Dr. De Leon

 

As we near the WPC 2016 which will be held in Portland, Oregon this year..one of the topics of great interest being presented is one of communication impairment.

First, we must look at what is meant by communication. The word  “communication”  implies the usage of  a deeper and complex network of interconnected neurons in the brain actively working to conceive, send, receive, and interpret  auditory, written as well as verbal & non- verbal messages. A problem or disruption at any point in this chain and we have ineffective or impaired communication. And as we all know ineffective or poorly executed communication can lead to disastrous outcomes.

For instance, there is a well known story which highlights this problem, a message given by a British Army Commander which stated: “Send reinforcements, we’re going to advance,” was lost in translation.

However,  reinforcements NEVER arrived because message received at command center heard instead:

“Send three and four-pence, we’re going to a dance”

A very humorous statement in the middle of a war but also quite out of place!

Not all communication failure can be as disastrous as this; yet it can be extremely frustrating for both the messenger and receiver. Lately, since one of my biggest problems with PD is actual voice related, I too am finding out how difficult it is to get things accomplish when those around you don’t get a clear message from you.

Why is this important?

  • Communication problems can be equally frustrating for all involved.
  • Person with problem of hypophonia  (low voice) or aphonia may become angry, irritable and isolated worsening an already existing depression or cause depression to ensue.
  • Some communication problems, such as having a soft voice, may be temporary and reversible with higher doses of levodopa. While other  speech related problems may be more permanent or caused by things like DBS implant or DBS positioning and activation of leads; in many cases leads may need to be readjusted because active electrical impulse is getting into areas of speech and affecting swallowing as well.
  • Sometimes medications, infections, dehydration, or depression itself  can cause difficulty in communicating with others due to the creation of confusion in the patient or person having these problems. the confusion then leads to an inability to state concretely or clearly their needs, concerns, or wishes. It is important to always review all medication with new onset of speech impediment especially when there appears to be a globally impaired person- not able to understand, read, write, or communicate verbally- we must exclude structural problems such as strokes and tumors in these individuals.
  • Of course the presence of dementia can also make communicating extremely difficult. This is a problem as 40-50% of PD patients are said to develop PD dementia after 15 years of disease. Thus, we have to take great measures to decrease risk factors especially as women are at higher risk for stroke but men are at higher risk for dementia and behavioral problems with PD. I recommend early screening as well as routine screening to avoid rapid cognitive decline when possible.

Whatever the cause poor communication can lead to depression and further isolation which only leads to a vicious cycle of increased deficits in communication and further withdrawal.

Identifying and solving communication problems:

As with most other problems in PD,  voice issues will develop slowly and subtly overtime. For instance, I have noticed that my husband and daughter are frequently surprised when I mention we are doing some activity on a given day which I had already mentioned to them before. After several episodes of me thinking I clearly stated something, I realized that they were no longer hearing me because I am developing softer voice. When I am completely aphonic, the communication is not as bad in my family because they pay more attention to my needs and watch for other non-verbal cues. But is the daily goings on that can be frustrating. Of course, as we age we tend to develop communication changes due to aging such as having poor sight or hearing which in turn can limit us as well significantly and in fact also cause much irritability if not able to hear or understand those around you.

Most people will seek medical help when things become bothersome enough or begin interfering with activities of daily living such as speaking in loud crowds or in a group, speaking on the phone, which I am beginning to have some degree of difficulty. Also everyone’s degree of impairment in their social life may be different even if the deficit is the same. this depends on each persons social abilities and needs.  If a person is a lecturer like myself than having any degree of hypophonia is significant  compared to one that lives alone and rarely socializes. Same goes for understanding written word. This can be a major problem if the person having these issues is the one in charge of important document handling.

Communication is a TWO-WAY street:

 Both the speaker and listener play an integral role as such both can and may need to alter their behavior in order to maintain a successful form of communication. one may have to try to speak louder and the other to make more eye contact and listen more intently. conversation requires all parties involvement- so tell your friends you cant speak as loud or cant hear them in loud places adjust your gathering environments rather than stop trying all together.

Make sure you get hearing tested- getting this done tomorrow.

Do speech therapy – which may include the LSVT- LOUD program to improve quality of speech and volume of voice. I think I will be enrolling soon. the speech therapist can also help with other types of communication skills like doing cognitive training or offer assistive devices to help you be heard and understood. there are a great number of assistive devices to aid in communication some are quite simple and inexpensive while others are more complex and expensive. May even consider choir therapy as well – for fun and perhaps may turn out to have some value in improving voice quality and clarity of speech.

The other great treatment available is collagen injections into the vocal cords which helps with voice volume.

 Don’t delay help and suffer frustration and isolation- talk to your physician asap .

parkinson's disease, Parkinson's Health, parkinsons health and beauty tips

Going to the Dentist Can Be a Challenge When You Have PD: by Dr. De Leon

Life is short so smile while you still have teeth.”

I wrote a while ago about the importance of maintaining dental hygiene particularly in light of a chronic illness like Parkinson’s disease. The slew of medications can potentially lead to tooth decay due to drying of mouth and wearing of enamel. However, keeping and scheduling dental appointments can potentially be challenging particularly as our disease advances. I know this too well both as a neurologist and as a patient with PD. Going to the dentist use to be common place but now ten years into my disease I have to think about it twice and may have to reschedule a time or two.

Yesterday, I went to the dentist although I seriously considered rescheduling once more due to severe nausea. Some of you may know what I am talking about, but for whatever reason now dental cleaning is extremely uncomfortable. One it always leaves my mouth and teeth incredibly sore for a day or two not to mention that keeping my mouth open for whatever extended amount of time needed for hygienist or dentist to work on triggers my dystonia not just in my jaw but in my neck which adds to the pain and discomfort which then triggers a migraine. It is an inevitable chain reaction unless I prep myself. So before I Go to the dentist, I have to take my nausea medicine, my migraine medicine and a muscle relaxant to keep the dystonia from setting in.  Needless to say I can only stand having my mouth open for so long so as you can imagine if you had the same problem doing procedures of any kind which could last more than 45 can be quite challenging. In a previous blog titled “tips on how to maintain dental care,” I provide some insight on how to get ready for a dental appointment. As I mentioned before it is important to schedule the visit at the maximum. Peak of your medication effect so if you are better in afternoon schedule at that time. For me now as I am beginning to have more difficulties with swallowing as my disease progresses I especially have to make sure medication is full force because there is nothing worst like having a choking sensation and having to tell yourself ” swallow” every time you have to especially when your head is tilted back, mouth wide open and water squirting at you!

If you experience some of these problems talk to your neurologist ahead of time especially if having major dental work done. He she can prescribe oral dissolvable medications as well as sedatives and muscle relaxants to aid in the process as well as coordinate care with your dentist.

I now in need of a couple of fillings repaired. Besides taking my muscle relaxants and anti-inflammatories, I may need a dose of Xanax which requires someone accompanying me to the appointment to drive me home. Another alternative is scheduling sedation which will definitely require making prior arrangements with a friend or loved one to accompany you.  The same is true if you are suffering from blood pressure problems particularly if it drops. So now for at least last 3-4 years my dentist always checks my blood pressure before commencing any treatment. He also lets me wear my sunglasses during the procedure to avoid extra sensory articulation from light shining directly on my face and compounding any possible migraine trigger. Can also ask for quick short breaks if work is extensive.

Even though I don’t much enjoy going to the dentist anymore and is no longer “routine,” it is equally important to continue care for my teeth as for my body; so with careful planning and necessary preventive treatments I can still go on my own without much difficulty other than a sensitive mouth for a day or so. At least both of my dentists are well versed on the manners of PD so I know I am in good hands.

 

 

parkinson's disease, Parkinson's Health, tips for safe and happy teavel with PD

Travel Tips with DBS- by Yuma BeV/Dr. De Leon

I have the great pleasure of having my friend and yours write a blog for us today on how to get going in an efficient and effective way when getting ready to travel- you all know her as the ‘Parkinson’s Humor’ author and Queen YumaBeV.

In the last few months, I have been doing some more frequent travel and I too have begun to keep some of the items like toiletries ready to go. Although, I wish I could keep my medicines already to go since this is what takes the most time to get together; but they are too costly to keep around in separate container and risk the chance of them going bad. however, for shorter trips I always carry my Vera Bradley pill box in my purse so I don’t have to worry about getting my medicines organized if traveling for less than a week. The one thing I am seriously considering especially since I have to travel via airplane is getting security clearing ahead of time to avoid waiting in line and going through hassle of always being patted down because my leg is so rigid it light up the screen as me possible having some sort of metal. I figure I should carry a note at least saying I have a “bum” leg or something… it would be easier if had DBS since then I could avoid that x-ray altogether. Here are some great tips for traveling  for those of you that do have DBS implants.

Packing for Traveling with Parkinson’s and DBS: By BeV M. Ribaudo ( Yuma Bev)

The hotel reservations are confirmed and your trip is only a few days away. You are excited because you will be spending time with family and seeing new things. All you need to do is figure out what to take and then pack it.

My Wonderful Husband and I travel light. We have a “Go” bag packed and in the closet by the door. It has almost everything needed to spend a night away from home: toothbrushes, toothpaste, deodorant, combs, shampoo and a razor. There is a list of items to add; prescriptions, DBS remote, jackets, cell phone charger, camera and a second list of things to do before leaving home; turn off the air conditioning, the water and set the alarm. All we have to do is grab some clothes and go. This is great if we are driving our car and staying out for one night, but if we are staying longer or flying then things become more complicated. For example:

We just returned from a 5 day/4 night trip to Las Vegas, Nevada. Our daughter and grandson flew in from Orlando to meet us there. It’s only 300 miles from Yuma, so we drove our car. All we need is extra clothes, right? No, because we’ll be gone for five days, I needed to bring extra batteries for the DBS remote and my camera, the original pill bottles and the pill splitter. The DBS remote goes through batteries like crazy, so I purchased rechargeable ones and found a charger that can charge both AAA (for DBS) and AA size (the camera uses these) at the same time.

Product Details
Battery charger and DBS remote 

Pill bottles and pill splitter

 

 

Packing these is the easy part; just toss them in the bag. It’s what to do with them once you get there that is the problem. At least for me it is.

 

I carry a small fanny-pack type purse. It’s barely big enough for car keys, ID’s, cash, credit cards and my cell phone. My shoulder won’t tolerate anything heavier and if my shoulder starts to hurt, I can put it around my waist. Here’s a photo of it next to a business size envelope.

There’s no room for the DBS remote or my camera unless I get rid of something else. And both are larger and heavier than my keys and cell phone.lenght of a letter size envelope

I tried to put the car keys in my jeans pocket, but the pockets in ladies clothes are worthless. It might work if I never sat down.

So, what did I do? I left the car keys and DBS remote in the hotel room and squeezed the camera into my purse. Some people carry their DBS remote with them everywhere, I don’t. At home it stays in the cabinet with the pill bottles. I use a daily dose pill holder that fits easily in my purse.

I currently take 1/2 of a carbi/levodopa 25/100mg tablet twice a day and 1 thyroid pill. I can easily fit a couple days worth into my little pill holder. However, the instructions on the bottle says take a whole one 4 times a day. Why? Because of cost. The price of 90 pills (a 3-month supply) is the same as for 360 pills (a whole years worth). My Doctor understands this and gladly writes the script this way to save me money, since I don’t have drug insurance coverage.

 

I just keep my fingers crossed that I don’t end up in an Emergency Room and have to show them the original pill bottle. At four times my normal dose, I’d be a dyskinetic mess.

Here’s a few other packing tips:

Print out a personalized info card, stating you have Parkinson’s and what symptoms you may have happen in an emergency. I have a large one in the glove box of our car and a smaller one in my purse, both in bright neon green, so they are easy to find.

Make sure you have your health insurance cards and phone numbers (including after hours contact info) for all your Doctors, especially your Neurologist.  

Take at least an extra week worth of all prescription medicines, in case you get delayed returning home.

If you have a cane or a walker that you use at home, even if it’s only once or twice a month, take it with you. You will be staying and walking in unfamiliar surroundings and falls can be deadly.

We have a night light and a small flashlight in our go bag; both come in handy when you need to go to the bathroom at night. Hotel rooms are notoriously dark.

Like a good friend always says, just remember to take your glasses, teeth and drugs, everything else…they sell at Walmart.

 

I rely on local drugstores and retail stores like Walmart  as well when ever I forget or intentionally leave at home things I know I can easily find in my travels.

for more tips look at my previous blogs…”Tips & Tricks: Traveling with Parkinson’s Disease – Part Deux” & “Tips & Tricks: Traveling with Parkinson’s Disease.”

 

caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease, Parkinson's Health

When Roles Change-By Dr. De Leon

As we continue to raise awareness for the nearly 10 million people suffering from Parkinson’s disease worldwide, we must not forget the unsung heroes who stand by our side day in and day out.

There is no doubt that caring for a Parkinson’s person takes an entire village…

The care partner who maybe a friend, spouse, or loved one is an integral and vital part of the team. However, as the days and years follow the diagnosis of a loved one with this progressive neurodegenerative disease, the caregiver him or her is faced with challenges of their own.

Often times these people have the task of adjusting to a new role of supporter which requires a lot of flexibility and is no easy feat. This shift in role or expectations can leave everyone especially new care taker to feel unsure of the future, expectations of others including patient leading at times to feelings of isolation and frustration.

So here are a few tips I have learned over the years in being a caregiver and watching many families struggle in the care of their loved ones with neurological chronic illnesses.

Important to recall that the shift in responsibilities can take many forms. For instance, I have known many couples in whom the primary bread winner was the one that got diagnosed with PD subsequently leading to disability and loss of employment which can put a significant amount of strain in an already tense situation. This may require the spouse to get an outside job or new career to be able to provide for family but now they are doubly tasked by not only having to provide financially but also emotionally.

It is important to engage the whole family to avoid burn out-children if they are adults can help to care for the sick parent while the other one works. They may help around the house with chores or providing meals. Close friends and siblings can also be engaged to help out in the care of a loved one.

The most important thing to remember as you navigate the uncertain waters of your new role as caregiver is to maintain your sense of self – and not get lost in the shuffle or chaos that may at times accompany living with someone that is chronically ill.

 

  1. Don’t expect perfection or to know everything. Allow room for errors- taking care of someone else it’s a learning curve just like being a new mom. Make sure to pace yourself. Be open to the experience even if you are not naturally inclined to being a caregiver. Remember, “All roads lead to Rome,” meaning there are many ways to accomplish the same goal. Find what works for you and embrace it.
  2. Find value in your new role. Don’t look upon the experience as an obligation. This is a sure way to fail. It’s all about the attitude. We may not be able t change our situation but we can certainly do a lot about how we tackle the challenge. Remember, to use your own brand of pizzazz to make caregiving your own forte. You have lots of talents and skills put them to good use. For instance, when I took care my grandma I could manage her medications best being a doctor and coordinate for her special needs to be filled by working with other ancillary health staff.
  3. Don’t go at it alone. No one is an island. Make sure to ask for help from your health staff, social workers, religious leader, friends. Try to connect with others undergoing similar situations to avoid isolation- attend support groups. There are many organizations that can help. Parkinson’s team, pdf.org, caregiveraction.org to name a few.
  4. Don’t forget to smile and be yourself. Smiling decreases stress levels and attracts others to you. Draw on your past experience as a source of strength along with prayer and faith.  Look this as a new opportunity for you to grow and develop as an individual. Don’t stop dreaming and making plans for the future. Even if the situation you are in now is not what you would have chosen, taking the new role wholeheartedly with reckless abandonment can prove to be a rewarding experience with lessons that will last a life time that can be passed on to younger generations. See this as an opportunity to get closer to the one you love.
  5. Most importantly, keep in mind that this too shall pass!!! Enjoy your loved one while you have the chance often times they leave us too soon.
chronic illness, parkinson's awareness month, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health

Make the most out of your health team: by Dr. De Leon

As we continue to raise awareness for Parkinson’s and work together to #EndParkinsons, there are a few things I like to talk about. First, in order to have the best outcome with lower disability while living with PD is having a team of health professional to help guide you. The quaterback should be your neurologist preferably a movement disorder specialist or minimally someone who deals with Parkinson’s disease on a daily basis. However, having a great team at your disposal will be of no use if you don’t make most out of  your team. Yes, this means going to the doctor on a regular scheduled basis not just when we feel like it.

I know some people advocate patients having complete autonomous control of their health which includes choosing when they need to go or not to go to the doctor. We need to have both – we must be able to have accessible doctors when we need them as well as follow their scheduled appointments. I know having a chronic illness especially when not well controlled makes it extremely painful and tiring to continuously visit your physician and other health provides, to say the least. Yet, this is the time we need them the most.

As a physician and patient, I more than most understand both sides completely especially how expensive, time consuming, and down right difficult it is at times to see your physician. But, I also know that we even as a physician are not the best judges of what is going on with us and we need an objective opinion or set out of our situation to see the whole picture clearly. I think this is why sometimes we end up hospitalized, in the ER, or having more side effects than we should.

For instance, I am sitting here with walking pneumonia and unable to talk on a boat load of medications having thus far avoided hospitalization because serendipitously I was diagnosed in time, all because I am schedule to travel to be guest speaker. If I had not had commitment of speaking engagement I would not have been so forth coming in going to seek medical attention and probably I would have ended in hospital.

So, if you are like me and is having now problems but just had an appointment less than a week ago or not until 3 months down the road, what do you do?  A few years ago, you would just have left a message and wait patiently by the phone or perhaps had to go to ER if symptoms bad and no qui response from the physician/nurse practitioner etc.

however, we are living in a social media age. Email, Twitter, text messaging, FaceTime and patients portal are just a few of the methods available for prompt communication wih your providers. They can also help coordinate care and dispel concerns. Plus, you will have the benefit of having a permanent record of the exchange. However, using these methods requires some saviness on your part.

first, you must discuss with your providers what is their preferred method of communication. For instance, I can call or text my neurologist anytime I need. Some prefer to have their nurse or staff sort through messages.

next you need to be aware when or how often they check these messaging devices. If they only do once at the end of day- especially if they do less frequent you might need to still call the office as I do when I need something answered more promptly.

of great importance is knowning your providers emergency protol..which at least in this country usually involves dialing 911 first.

If you happen to live far away from your physician especially f in another state or country…discuss tele medicine or use of skype as communication.

Once, you decided on form of communication – the most important thing is sending a concise message focusing on a clear question or issue. Let them know if you need a response by a designated time and always put a subject line when sending email or text. If sending copies of other physician reports etc make sure your links are correct and go directly to subject  matter .

Parkinson's awereness, parkinson's disease, Parkinson's Health, Parkinsons disease

Dare to live with a plan: Dr. De Leon

Dear Future,

I am READY…..

“The future belongs to those who believe in the beauty of their dreams”Different-Tulips…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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. Go ahead and plan for that dream vacation…look at my tips for traveling blog.
  8. 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.
  9. Lastly, never let your calendar be empty …if necessary plan in pencil but don’t stop planning!
chronic illness, disability in PD, drooling & swallowing, fluctuations in parkinsons, medications in Parkinson's, Parkinson's awereness, parkinson's disease, Parkinson's Health, Parkinson's symptoms, parkinson's treatments, parkinsons health and beauty tips

I am having trouble swallowing …could it be my Parkinson’s or something else? By Dr. De Leon

“The only time to eat diet food is while you’re waiting for the steak to cook.” Julia Child

 

As we start a New Year, thoughts of health and staying healthy seems to be one of the foremost concerns in most of our minds, at least they are for me. Most of us who have lived with PD for a while realize what a burden it can be especially in light of the fact that for the majority of us Parkinson’s is not the only disease we have or will ever have. Unfortunately, not only are we still at risk for developing other major illnesses as we age but PD itself being a systemic illness can in turn predisposes us to other diseases like various types of cancers, dementia, strokes, possible diabetes along with other gi problems. Thus, we must always be vigilant for any new symptoms. We must be savvy in recognizing these as well as knowing what to do when they do arise.

One of the best tips I can give you as a neurologist is to make sure that you have frequent follow up appointments with your MDS or neurologists especially if you have had PD for more than 5 years because sometimes we as patients are not very good at picking out subtle changes or worse when we do recognize there are changes we sometimes get afraid of the implications so we don’t bring it up and try to deal with it. You should see your physician upward of 4 times a year in my experience if you are more than 5 years certainly more than 10 years. Remember-Our body’s change as we change and so does our response to the medications.

Now that I am nearly 10 years into the disease I have noticed increased chocking and swallowing problems. When you choke on your own saliva –that is an attention grabber! The other day I choked while taking my potassium which resembles a “horse” pill. This nasty pill went down the wrong pipe, I was beginning to panic since it was stuck smack down the middle of my throat then I remember that the potassium pill dissolved quickly with water so even though I was chocking and gasping for air I was trying to drink water to dissolve pill. Of course it was making me panic more as I was really struggling to breathe…I thought is this how I die? Flash of a patient that asphyxiated eating a peanut butter sandwich passed quickly by…

I was not going to go down this way I was about to attempt a Heimlich maneuver when I began spewing and foaming the potassium out of my mouth in a violent cough. All because my PD meds had not kicked in before I took such large pill. This was too close for comfort, this meant time to adjust medications. In my case it was an easy solution but is not always straight forward.

If you are experiencing any amount of swallowing dysfunction even if mild does not have to be as violent or severe as mine to bring attention to the problem.

I am choking you and your doctor will both ponder if your PD has worsened?

Is it Parkinson’s or something else entirely?

First, you need to keep a record of the events:

  • When does it happen? Morning? Night? After medication intake or medication wears off?
  • Does it happen every day?
  • Does it happen with solids? Liquids? Or both?
  • Does it happen only with pill intake?
  • Do you cough? / wheeze?
  • Are there other symptoms with it like dizziness, unsteady gait?

Then you have to address:

  • Are meds not working? Are they wearing off? Need larger doses?
  • Do I have any other medical reasons for this? (strokes, gi problems, throat tumors)
  • Atypical PD?

Also if you had DBS implant you may have worsening of swallowing especially if already had some symptoms prior to surgery. sometimes adjustment of DBS can improve symptoms.

Fortunately, mine got corrected with adjustment of medications and addition of new med called RYTARY – intermediate release levodopa.

It is important to remember that even if there is aspiration things are not as black and white. I am glad that many other doctors and therapists are starting to take note of this fact. Food and being able to eat and enjoy it is a big part of our culture as well as our quality of life. Being able to taste and sit at the table makes us feel more like a normal person. So sometimes, even though a patient can’t swallow or is aspirating and requires a feeding tube –the family can work with the doctors and speech therapist top provide quality and comfort to their loved ones- may start with ice chips or food to taste like pudding, or a combination of being able to eat normal meals at certain times and use the peg tube at other times for pills or calorie sustenance.

  • Regardless of cause all patients with swallowing trouble, everyone should have an evaluation by a speech therapist which should include a modified barium swallow to make sure there is no aspiration in particular silent.
  • Your MDS/neurologist may refer you to get an ENT evaluation and/ or Gi evaluation to make sure there are no other treatable causes. They may also order MRI’s of brain or neck.
  • Usually swallowing difficulties in Parkinson’s may begin to occur after several years of illness usually >7 years, if having problems swallowing at the beginning or more pronounced and rapidly deteriorating is a big indicator that we are dealing with a more aggressive Parkinson’s plus type such as PSP, MSA, LBD etc.
  • These are all the questions that you and your doctor will need to address. You need to seek immediate attention if having difficulty swallowing in order to protect airway and prevent aspiration pneumonia which can lead to hospitalization and early demise.

 

Next time you feel stressed or that the passion and flair has gone out of your life because of PD, “Pull up a chair. Take a taste. Come join us. Life is so endlessly delicious.” (especially if you taste anything chocolaty!)
Ruth Reichl