chronic illness, parkinson's disease, parkinsons health and beauty tips, tips for safe and happy teavel with PD

Tips to side step most common travel- related headaches in PD patients: By Dr. De Leon

As the country has been hit by numerous winter blizzard storms keeping a large portion of the population in the north indoors going stir crazy while the northwest is affected by the pineapple express, here in the south well is anybody’s guess what the weather is going to be like from one minute to the next.  One minute we are wearing our best summer dresses mean while the next thing I know we are gearing up for a wintery mix pulling out my scarves, gloves and parka jackets. As you all know, extreme temperature and PD do not mix, particularly cold weather. It appears, at least in my experience that my Parkinson’s symptoms worsen dramatically. I have it on good authority that it does the same for many of you. So, I have started dreaming of an escape to a nice temperate climate to soak in the rays and get a chance to stretch my muscles outdoors without fear of falling, slipping in the ice, catching pneumonia or the flu. Perhaps you too are planning your romantic escape to whisk your loved one away for a couple of days to celebrate Valentine’s Day?  Maybe we are just plain dreaming of leaving all the cold behind.

How do we manage our PD when we are away from home? How do we stay healthy and happy?

First before you travel or go anywhere you should always have a traveler’s medical kit ready.

Be sure to bring your Aware in Care Parkinson’s ID bracelet or wallet card with you. If you don’t have an Aware in Care kit, contact NPF’s free Helpline at 1-800-473-4636 while in the planning stages of your vacation.

  • Carry with you at all times all your medication including prescribing physician, should also carry snacks and water/juices
  • Make sure you continue to take medication at regular intervals despite time zone changes.
  • Pain medication – such as Tylenol or ibuprofen. I find that a Tylenol and a Motrin go a long way to cure most types of pain.
  • A mild laxative
  • An antacid
  • Medications for nausea
  • Medications for motion sickness
  • Hand sanitizer

Once you got your meds in place before considering your destination think about the logistics of getting there. Is it easy to do unassisted? Will you need help on the way? As most of us get past stage 1 of PD sitting for a long period of time can be problematic. Even early on RLS can be an early symptom and cause difficulty if sitting for a prolonged period of time. You know you can do it but still want to have a backup plan. Make sure there will be assistance at the airport, train station, bus station or cruise ship.

Finally you bypass all those hurdles and you are on your way to your dream vacation. However, this means being away from home, your doctors, your routine, your comfort foods so how do you manage to stay calm and enjoy your time away from home?

Well, first if you have a DBS you never have to go through the airport security machines again! This is a big plus. Have your doctor write letter and carry with you and inform them when you make reservations so they don’t give you hard time. Don’t forget your magnet at home. But since some of us PD patients may have a higher risk of certain cancers like breast or skin cancer do not worry that going through airport security will increase these risks by exposure to x-rays. Now they use millimeter wave scanners which use radio waves and are not believed to be a cancer risk!

Exercise to avoid rigidity and blood clots:

  1. If you’re going to be on a plane or whatever mode of transportation of your choosing for a long time sitting make sure that you move around 1) to avoid blood clots and 2) to keep from freezing. One interesting fact: the risk of blood clots increases 2-4 fold by long distance air travel- same is true by other modes of transportation such as car etc. and if you choose the window seat as I often like to do, the risk doubles – this is presumably because people move less. So if you sit in a window seat make sure you still move around! Make sure that while you are sitting every hour or so do 5 minute of stretching. Flex and extend your feet like pressing on gas pedal and stretch arms and rotate neck. This will keep you limber, decrease pain and decrease blood clots and if possible walk down the aisle.
  • Constipation: 
    1. Constipation is the universal symptom that unites all of us Parkinson’s patients. We all know how uncomfortable it feels to be constipated. Now imagine that you are seating immobile for hours the body naturally goes into maintaining homeostasis which means every non essential organ shuts down. Constipation is both caused by our illness as well as aggravated by the medication and lack of activity can take it up a notch. In order to avoid this problem, I recommend that you drink at least four 8-ounce glasses of water daily. Take stool softeners before departing and on vacation. Carry some laxatives with you just in case. Try to maintain normal meal hours and carry high fiber snacks like nuts and fruits. I like carrying Nonni’s THIN Addictives which come individually wrapped; fruit and nut cracker snacks. They come in various flavors pistachio, cranberry are my favorite
  • Motion Sickness/Nausea/Vomiting: 
    1. We all know that Parkinson’s patients have our fair share of gi problems including a predisposition to nausea, vomiting and upset stomach particularly when we are traveling due to increase stress, decrease gut motility, poor nutrition during travel, and increased constipation subsequently. Prevention goes a long way to making your life and travel a lot happier. Best to take a nausea medication before departing (if possible carry sublingual nausea pills) it beats trying to find water, bags and air to cool off in the midst of your traveling. Of course along with these symptoms motion sickness can kick again particularly if blood pressure low, constipated, sleep deprived, or if you are prone to migraines. The condition usually occurs as a result of brain getting mixed messages from your eyes, ears and body. Motion sickness is a lot easier to prevent that to stop once in motion. If you know that you have migraines- take a migraine medicine before departing also the nausea medicine should keep this in check but just in case carry something like scopolamine patch to be placed behind the ear . it usually takes a few hours to work but can offer relief up to three days without the drowsiness that antihistamines would cause ( which also work).
  • Pain:
  1. Traveling can exacerbate pain of all sorts because we don’t move as we should and we are cramped in small spaces for a long time, medicines may not be absorbed as well if we get constipated or we miss a dose because of schedule and we might even unwillingly injure ourselves carrying our belongings. Again, prevention is the best approach. Take your migraine medicine and muscle relaxants before departing. Consider getting a deep tissue massage before and after the trip it will go a long way to keeping muscles limber and by all means do not forgo your exercise routine just because you are on vacation. If need be consider carrying parcopa (sublingual levodopa/carbidopa) which will kick in fast if need it without having to find water or worry about the status of your gi tract.

If you follow these simple steps as I do you can travel to your destination with greater ease and comfort and be ready to enjoy your vacation upon arrival.

Happy Valentine’s Day every One!

***this advice is not intended to take place of your physician counsel and recommend discussing any and all changes to medications and above with them before instituting!

Sources: “7 ways to stay healthy on vacation.” Consumer Reports on Health June 2014

www.parkinson.org

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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

 

cancer risk in parkinsons, chronic illness, parkinson's disease

The Golden Team Necessary for the Best Parkinson’s Care: By Dr. De Leon

The other day, I read something someone wrote about which ideal team members should engage when considering long term care of PD. I was a bit disappointed to find that whoever wrote that piece was missing a large part of what goes on with Parkinson’s patients behind the scenes and what their needs really are. Especially when we realize that this chronic illness not only affects dopamine but other neurotransmitters like serotonin in the brain; but more importantly their function or lack off has great implications for our entire body from our guts to our skin and everything in between.

Therefore, when choosing your fantasy team or ideal “golden” players to be in charge of your PD care is best to keep in mind that just as you would not take an expensive car like a Ferrari to just any local mechanic if there was a problem with it you should not trust the care of your complex Parkinson’s disease just to anyone!

An all-star team that you should pick to stand on your corner to help fight for your interests. Ideally, this should include the following members:

1.  Neurologist (at minimum if MDS are not readily available in your area/ preferably an MDS- no need to have both if MDS readily accessible). MDS/Neurologist needs to act like the quarter- back. He or she understand your disease intricately and know you the best therefore, should be the ones coordinating all the care when it comes to PD issues to ensure the BEST possible outcome with the most prolonged quality of life!!!

2.   GI (gastroenterologists) – because of decrease motility, increase constipation, increase reflux,    trouble swallowing and nausea both due to medications and subsequently due to poor gastric motility; therefore, it is imperative you have a good GI specialist you follow on a routine basis. They can provide alternative treatments that neurologists may not be aware of like new meds for constipation etc. (Linzess is the latest and it won’t interfere with PD meds or aggravate PD symptoms).

3.   Urologist- because of increased bladder problems with PD, erectile dysfunction in men due to medications and sometimes due to disease if have other Parkinsonian syndromes like MSA, also because there is a documented increase in prostate cancer in those men taking Stalevo. Therefore, they serve to screen for pathology as well as offer various treatments and surgical procedures like Botox injections into the bladder that the neurologists or MDS may not be able to do themselves.

4.   Gynecologist – for women with PD because medications can cause menstrual irregularities, sexual dysfunction can occur both as part of disease and due to medicines, bladder issues, and an increase in breast cancer in certain subtypes of Parkinson’s population like LLRK2. They can treat these diseases and screen as well as offer procedures to help. Newest medication for treatment of bladder dysfunction which I have found to work well in PD patients with over active bladder issues is Myrbetriq.

5.   Dermatologist-due to an increase incidence of melanoma in PD patients especially if you have a history of this disease already present in your family. They can screen and provide treatment and early cure should melanomas develop and safe your life!

All these specialists should be able to work well as part of a group of multiple specialists where the neurologist or MDS is in charge of the ultimate game plan (this is crucial for a good working relationship with everyone involved). They should also have good working knowledge of the entire body system as it relates to Parkinson’s disease not just their own specific area. (This is equally important if things are going to progress in the right direction to maintain and prevent issues down the road). It is important to bring these specialists on board as early on as possible and maintaining them on as a regular part of the team for the duration of the illness not just on as needed basis. ( you may not need to see them as often as the MDS/neurologists but at least once a year just to maintain contact and make sure that all preventive measures are being done and keeping up with new treatments; more often if you have risk factors in some of the cancer areas)

Finally, you MUST engage the services of ancillary staff: PT, ST,OT, perhaps even a dietician and social worker – the service of these professional will become more invaluable as time progresses and disease advances. They will be the backbone to guaranteeing you have the right tools for a successful journey with PD.  At very least they will offer valuable information and tools to help improve your quality of life and those around you for every stage of your illness. Find those that have training and expertise in dealing with Parkinson’s disease and preferably those that are certified in Lee Silverstein voice training (LSVT) and the equivalent of the voice program LOUD, the BIG program which activates the gross motor system!

I guarantee a brighter Parkinson’s journey with this “golden” all-star team guiding your disease forward.

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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 defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com