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.”

 

Tips & Tricks: Traveling with Parkinson’s Disease: By Dr. De Leon

Spring break is fast approaching and many of us especially those of us with children look forward to this time of year to being able to travel as a family. Sometimes you even get to chaperone for fun on school excursions just as an excuse to see the world through their eyes! However, even though it now takes me longer to pack my medications than it does my actual clothes and toiletries, I still enjoy traveling whenever possible….( still have a million meds to pack- need a bigger bag just for this but could not do it with out my trusty world travel -diva bag!)
So, here a few tricks to make traveling a bit easier and not such an ordeal.
Of course, it takes more planning than it once did since traveling with PD is a lot more complex than if we did not have a chronic illness. Don’t be discouraged it can be done but don’t forget to keep in mind destination climate and time of year. We not only have to keep track of our meds but we also have to be conscientious of the temperature and other weather conditions in the areas of our destination because believe it or not extreme weather can make our symptoms worst as I am sure many of you already know.

General tips!

 Always carry a letter from your neurologist stating your diagnosis and medication list. This might avoid extra scrutiny or people thinking you are either drunk or mentally challenged.

 Always keep on hand your PD specialist phone number and how to reach after hours. Don’t forget the countries area code when calling if traveling outside of the US.

 Always keep your medications with you, that’s one piece of luggage you cannot afford to do without – trust me I know. Carry some extra in case you spill. I have a tendency to do this as many of you can relate, I am certain; also in case there are delays to your travel plans due to weather, illness, etc. Plus, carry a prescription and letter from your doctor in case you need or someone gives you hassle for carrying so many pills. I never had this problem but is best to be prepared just in case. Put your medicines in small plastic containers or bottles you can get from pharmacy or in a large pill box depending how long you will be away from home.Product DetailsProduct DetailsProduct DetailsProduct DetailsFashion Smart Pill and Vitamin Compact Travel Clutch Case (Fleur De Fash)

 Pace yourself, listen to your body. You know it better than anyone else. Try to keep routine and medications at same time – if traveling abroad, stay with the new time zone in keeping with medicine intake. Choose activities wisely and allow for down time. If planning on climbing Machu Picchu do at the end of trip so can recover at home and on plane on way back.

 Leave the ego at home. Fortunately, we now have so many tools at our disposal, please make use of them this includes folding canes with height adjustment, wheelchairs, laser canes, disposable undergarments, you name it. Don’t pay any heed to those staring who do not understand what we have to go through.laser-cane-parkinsons_tProduct DetailsU step walker with laser for foot placement

 Don’t underestimate the importance of a good travel companion especially if venturing out of comfort zone or internationally. A good friend or companion can Tips for traveling with friends... and staying friends.be a god send when you need an extra pair of legs or hands. Trust me, when I suddenly freeze because my back gives out from the rigidity of my axial muscles it is nice to have a plan ahead and a person to lean on to help walk with me to prevent falling and to retrieve my luggage is an absolute gift.

 Mentally notice all bathrooms especially when traveling internationally do not pass a good one since these are hard to find. Remember many charge to use the facilities as well as for the toilet paper. So carry your own toilet paper. Also most all older countries like Italy have only one bathroom for both sexes and toilets are really low with no toilet seats so a good companion not only will help to stand guard but can aid you in going to the bathroom.

1. Remember a lot of us have bladder issues so keep a mental note of location in case you have to hustle back but if don’t think can do this that’s what undergarments are for. There is an app to help locate restrooms but beware of international roaming fees.

 ESPECIALLY IF TRAVELING Outside of US or remote areas have your doctor give you prescriptions for Apomorphine in case need it ( make sure you know how to use and what to expect before using- the company now has 24hour hotline to assist),take sleeping pills, muscle relaxants, and pain meds like Vicodin. As well as anti-inflammatories in my experience a Tylenol plus a Motrin go along way for relieving most pain.

 When making reservations try using an agent that has dealt with booking trips for people with disabilities. Always purchase travel insurance best if you buy insurance from third party rather than travel agent or cruise ship. (AIG Travel Guard).

 Consider the climate of country where traveling- if during hot weather consider investing in a cooling vest. Consider Alaska in summer, Europe in fall, and Caribbean in winter.

 I also recommend a cruise, I am not a big fan of being in the middle of the ocean but a nice river cruise may just be what the doctor ordered. Smaller, easier to navigate has all the amenities at your disposal plus if you can tired or fatigued you can just go lay down. Plus, there is a doctor on board!

Don’t Forget to Have fun! In light of the fact that our Parkinson’s is progressive we want to enjoy life while we can so go on that trip you always wanted now rather than later. CARPE DIEM!!!

Bon Voyage!!!

@copyright2014

all rights reserved by Maria De leon MD

 

 

How To Make The Most Out of Your Neurology/MDS Visit: by Dr. De Leon

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I know many of you have expressed the concern that some of the issues don’t get addressed or addressed in a timely manner when visiting your neurologist or MDS. This especially difficult to deal with since many do not live close to a neurologist and have to travel a way to go see them. So of course you are tired and frustrated of  having to wait both to see a neurologist or movement disorder specialist as well as in pain and discomfort if asked by your doctor to be off your medications for evaluation.

We all have experience the feeling of disgust at ourselves when after leaving the doctor’s office after being there several hours we realized that we forgot to ask or discuss an issue that was utterly important.

A few tips to minimize frustration and maximize our time and neurologists focus on our issues are the following recommendations based on my extensive experience as a Parkinson’s specialist and as a patient.

First, I am sure many of you have experienced the phenomena I like to call the ‘doctor syndrome.’ For some reason, it happens to me all the time and I am certain it happens to you because many of my patients told me that they were worst before coming to see me. I am not sure why that is but my Parkinson’s symptoms are always better when I see my doctor!

Second, especially if it’s the first visit make sure if possible to bring someone with you that can be your ears. Because unless you are savvy in the medical field and medical jargon, after the first few sentences where your doctor tells you the diagnosis I guarantee you will not remember anything else said or explained.

As physicians we usually concentrate on what’s visually in front of us and have to pay close attention to non visible symptoms and rely on you unfortunately too much to let us know how your life is being affected by these invisible otherwise known as non-motor symptoms.

Parkinson’s disease is extremely complex illness and increasingly getting more as we speak even though most neurologists and movement disorder specialist like me typically spend an hour or more per patient it is impossible to cover ALL possible symptoms in detail.

Therefore it is imperative that you prioritize your problems:

  1. Are you there as a new patient and looking for diagnosis and new treatment?
  2.  New patient for second opinion and alter treatment?
  3.  Established patient for management of symptoms?
  4.  Established or new looking for disability?
  5.  Interested in participating in studies or research and what are you willing to do?-e.g. participate in studies with new unknown meds vs. known medications already approved, invasive vs. non-invasive?

All of these will require different focus from your doctor.

I recommend that you limit your discussion to main reason (chief complaint-e.g. new patient looking for diagnosis) you are there and two other symptoms that need immediate addressing!

If you have more pressing issues make an appointment sooner than what they will suggest don’t settle for appointment in 3-6 months if NOT doing well!

Also if need a family intervention to discuss prognosis and long-term treatment plan and care, make appointment with you, family and doctor exclusively to discuss these issues. Let the doctor know ahead of time that this is purpose for visit so doctor and staff can be prepared for meeting as far as time so you won’t be rushed and also and most importantly so doctor can formulate plan ahead of time and bring ancillary services if needed such as social services or names of assisted living, nursing home, or rehabilitation places etc.

Third, know your insurance coverage of medications. This will expedite treatment and allow doctors to know which prescriptions to write. Unfortunately, due to recent changes in healthcare and medication coverage (at least in this country) it is becoming increasingly more common for doctors particularly specialists to prescribe medications base on a patient’s formulary rather than what they think should be first choice! Ask for samples, ask for assistant programs, and let them know if meds will require pre-authorization or paper work filled out. If you are new patient or established patient who will be on new drug- it is best to not have that medication sent to mail order pharmacies until required dose achieved and / or know if can tolerate otherwise will get stuck with a bunch of medicine can’t use.

Fourth, always bring a list of your medications better yet the medications themselves which should ALWAYS include name of over the counter medicines even if they are as needed because could possibly interact with new prescription.

Fifth, ask for side effects of new meds, what to expect, how fast will notice improvement, do they need to be titrated and how often? In this should also inquire if meds will affect women issues such as safe if planning to conceive or are breastfeeding, ask especially if risk of melanoma, breast cancer and prostate cancer in family to be referred to specialist for follow-up given that some medicines will increase these risk and others like melanoma simply by having PD make you at higher risk.

Finally, at least in this country know that if you require paperwork filled out there most likely be a fee and a few days to get paper back so plan ahead.

Ask for literature, support groups, as well as ancillary services such as speech therapy if needed.

If you follow these simple rules, I guarantee that you will have a much happier and successful journey with PD as you and your doctor work as a team.

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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 deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

Tips for Getting Ready for Surgical Procedures When You have PD: By Dr. De Leon

“I  had plastic surgery last week. I cut up all my credit cards.” Henry Youngman

As I get ready to undergo yet another diagnostic procedure I am reminded about the possible perils of navigating conscious sedation and anesthesia with PD.

One of the hardest things is being asked to stop your medication the night before a procedure. Depending on your stage of disease this can range from a mildly uncomfortable feeling that can be endured with little discomfort to a downright painful and excruciatingly difficult experience to tolerate that may seem never ending because of the withdrawal symptoms. Then there is the stress of having to undergo a medical procedure to really kick up the use of dopamine in your brain making your Parkinson’s symptoms seem that much worst.

Until I had PD myself I never truly understood how hard it was for patients to be asked to stop their medications. I knew it was not a good idea to make someone stiffer, shakier, have more trouble swallowing and breathing when undergoing general anesthesia.  This is the time we want patients to be the strongest to not only make extubation easier but also decrease aspiration pneumonia around surgery and allow for faster recovery. So why would we want to stop all PD medications? Besides, we would not want increase in pain meds because they are off. When I am off my PD meds the biggest problem I experience is the severity of pain which is so severe it causes me to almost black out. Not a good feeling! Unfortunately, not all PD medications are compatible with anesthesia like MAO inhibitors so meds like Azilect do have to be stopped prior to surgery. And because aspiration and vomiting due to anesthesia need be minimized patients are asked to not eat, drink, or take medications.

But, sometimes surgeries can be delayed due to unforeseen problems as it happened to me with the last surgery. I was scheduled for surgery at 8 and did not actually go to OR until 1pm. So not only are you starving but the time without medication can be prolonged unexpectedly causing greater discomfort.

Things to do to avoid being caught in scenarios where you are stressed more than you have to.

1) If you take Sinemet ask for your physician to write an order for you to take Parcopa in its place throughout surgical procedure to avoid Gi tract. Since this is an orally disintegrating formulation fast acting? If surgery is delayed it can take another dose at your scheduled time. Of course if you are on IV pump this should be able to be continued unless they are working in area where pump is placed.

2) you can still continue with the dopamine patch agonist NEUPRO during surgery.

3) ask for scopolamine patch prior to survey to avoid nausea and upset stomach caused by anesthesia and being off your full regimen.

4) If being off or not eating for long time causes migraines again you can still receive treatment with orally disintegrating Triptans (e.g. Maxalt).

5) Try to be the first case of the morning.

6) If an elective procedure do when you are at your strongest and make sure your neurologist/MDS fine tunes your medications to ensure maximum outcome.  Do not put yourself at an unnecessary risk for an elective procedure (non –life threatening or emergent). As I had to postpone my father in law’s surgery because his breathing was too weak and did not want risk of having trouble coming off the vent after surgery.

These tips should help you ease your discomfort as you prepare for surgical procedures.

____________________________________________________________________________

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 deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com