” Once a year, go someplace you have never been before (and discover its beauty & wonder)” Dalai Lama & MDL
It seems that since my diagnosis all of our trips and outings are punctuated by mishaps caused by my illness. The great thing is that it is these misadventures which have united us as a family and created lasting bonds. Our trips are now referred by my daughter and husband according to the nickname given to that particular event. We now have a growing list of funny stories which pivot around me and my physical state at the time of our excursions. For instance, we have the Renaissance debacle of 2010, the birthday bus tour of 2018, and lastly the French flop of 2019 to name but a few.
Here are some of the things that all of these misadventures has taught us:
1) You cannot plan in advance every minute of a vacation trip like when we were young or healthier. Do you know how many times we have lost money because we have not been able to keep reservations due to my Parkinson’s? We have decided that we end up losing more money if we try to save money up front by purchasing tickets ahead rather than waiting to day of event. If we wait to the time of event we are 100% certain we will be able to attend because those of us who live with PD and any other chronic illness- symptoms can fluctuate moment to moment (which drives me absolutely batty even now).
2) We no longer go on tours where there is a fix schedule of pick up and drop off unless it is something extra special and only one per vacation trip. This requires planning, loading up on medications and carrying everything under the sink that you can possibly need during that time such as migraine and nausea medications, disposable undergarments, etc. Of course this also means that upon your return you must allow plenty of time to recover and rest.
3) When making reservations or traveling –make sure to see if money is refundable. Ask about their rules we like using Viator Tour Groups because you can cancel up to 24 hours before event with full refund. Plus, in the past when I have been absolutely unable to make an activity due to health issues they have worked with me to either reschedule or get refund. Furthermore, they have tours all over the world which is convenient. We have used them for years and always been very pleased. Unfortunately, I cannot say the same for others we have tried along the way causing some monetary losses.
4) When choosing mode of transportation and hotel don’t go for what is most economical because in the long run you may end up paying more if your symptoms worsen or exacerbate due to accommodations and travel experience. I suggest getting insurance for flights and always book directly with hotels rather than using a third party as I have learned recently. I always call personally the hotels which I believe is best policy. But, during the holidays I wanted to use my reward points and accidentally got transferred to a third party who booked my room. Fortunately, I had already booked another room directly so when I had to cancel because of my flaring pancreatitis, the hotel management had no problem refunding me the money. However, the third party even with a doctor’s note refused initially but because I had rapport with staff directly I was able to persuade third party Company to refund me the money as well. So always ready the fine print and book directly – they usually will help if have any reward points etc.
5) Stay in locations near the center of activity – here you will often find most of what you need should you forget something or have a medical emergency. You should always get medical insurance especially when traveling abroad.
6) Pick and choose activities and prioritize so that you can make the most out of your trip. Even when I do all above it still takes me a day or two to recuperate. It used to take me a week or more when I did not set limits or boundaries and took off running as soon as I hit the ground. Now my family and I are much happier. We realized that quality is better than quantity!
Following these tips, I and my family have found to have not only a more enjoyable traveling experience, less stressful as well as not as pricey because we are not frittering money away. That money instead can be used in upgrades should you choose. Plus, you will find that when you are rested and relaxed you will not only have a better time overall as well as incur less injuries.
This summer I encourage all of you to enjoy the great adventure which is our life!
All rights reserved by Maria De Leon MD
Lately, it seems that a great number of people that I know with Parkinson’s disease has undergone a knee replacement. I wondered if there was a greater incidence of knee replacement in Parkinson’s compared to other neurological diseases. However, my search did not yield much in the way of statistics as to the actual numbers and most articles assumed that knee replacements in Parkinson’s patients were due to age. However, I am not entirely sure this is the cause. Several of the people I know that have undergone replacement would not exactly be placed in the elderly category- even though I must admit that the older I get the younger the less “senior” my peer group becomes. Having said this, I found over 30 articles on the subject from 2017 alone which makes me think that this problem is a lot more widespread than we think and should be evaluated further.
One of the main reasons we need to consider this a complication of poorly controlled Parkinson’s symptoms is because the inherent risk it carries of long term disability along with a higher mortality and morbidity that has been observed throughout the literature.
First, let’s look at what are the typical causes of knee pain that can eventually lead to need for replacement.
- Acute injuries- as well all know having PD makes close friends with the ground- I can’t tell you the times I have fallen and injured myself ever since I got PD. The injuries don’t even have to involve the knee initially to cause pain and problems. Of course, I have nearly shattered my patella (knee cap) when I stumbled in middle of night going to bathroom landing hard on one knee. When the weather is just right it still hurts 5 years later. The other is injuring your back or your feet can lead to abnormal posturing causing problems with knee. Not long after I fallen and sprained my ankles severely I began noticing a searing pain in my knee that would come on suddenly when standing followed by a weakening of my leg which would cause me to fall if not holding on to something.
- Overuse injuries– some of us may experience this from excessive exercise. Remember to always have supervision when exercising to avoid injuries and to listen to your body (stop if hurting don’t press on). I find for instance that exercising in deep water is much better for joints than doing water therapy in shallow end. Sometimes even exercises like tai-chi and yoga can cause injuries because of repetitiveness. Plus always remember to stretch before exercising. Everything in moderation. E.g. Iliotibial band syndrome (irritation and inflammation of fibrous band tissue that runs down outside of thigh)
- Medical conditions- these include things like lupus, arthritis, Parkinson’s – (due to poor posture, abnormal gait as well as joint pain itself from muscle pulling).
Symptoms of Knee pain:
- Dull burning discomfort
- Weakness of leg after pain ( sharp shooting pain when in use)
- Constant ache
What to do to prevent?
- Talk to doctor as soon as symptoms begin- As always if not acute – keep diary of when it happens, what triggers it? What makes it better? What makes it worse?
- Is it constant? Or comes and goes?
- Is there accompanying back pain, foot pain (dystonia/dyskinesia’s)
- Are you shuffling?
- Are you stooped?
- Are you freezing?
- Any changes in medication?
- Any changes in weight?
- Other medical issues? ( arthritis)
- Other joints hurting?
- Adjust levodopa to improve posture, freezing, on/off, reduce shuffling, as well as decrease rigidity
- Start Physical therapy
- Botox for dystonia
- Steroid injections/anti-inflammatories/ muscle relaxants
- Get orthotics, foot inserts or braces for knee and foot- wear cushioned flat shoes
- Walk on smooth surfaces
- Rest your knee – elevated, massage it, ice/heat
- Diet changes if weight is an issue
- When standing keep weight equally divided on both legs – avoid standing long time
- Don’t sleep on your side- place pillows on sides to avoid rolling
If we follow these steps we can lessen our risk and need for surgery because typically patients with PD who undergo knee and hip replacement have longer hospitalizations, more confusion, require longer rehabilitation along with having a risk of decreased mobility and increased infection post operatively. The key is therapy and sufficient levels of levodopa!
Total Knee Arthroplasty In Patients With Parkinson’s Disease- A Critical Analysis of Available Evidence.Ashraf M, Priyavadhana S, Sambandam SN, Mounasamy V, Sharma OP. Open Orthop J. 2017; 11:1087-1093. Epub 2017 Sep 30
Total joint arthroplasty in patients with Parkinsons: survivorships, outcome and reasons for failure. Rondon AJ, Tan TL, Schlitt PK, Greenky MR, Phillips JL, Purtill JJ. J Arthroplasty. 2018 Apr;33(4):1028-1032. doi: 10.1016/j.arth.2017.11.017. Epub 2017 Nov 16.PMID: 29199060
Outcomes of primary total knee arthroplasty in patients with parkinsons. Wong EH, Oh LJ, Parker DA. J Arthroplasty. 2018 Jun;33(6):1745-1748. doi: 10.1016/j.arth.2018.02.028. Epub 2018 Feb 14.
all right reserved Maria De Leon MD
“What enables a general to conquer and achieve things beyond the reach of ordinary men is foreknowledge” Sun Tzu ‘The Art of War’
Over the last month, I have read and heard much about the needs of the caregiver, the fears of the future for both the patients and caregivers as well as the stresses of living with a chronic illness imposes on a family, a spouse and a caregiver who may also be frail, infirm or elderly.
It is one thing to care for a loved one or spouse when the caregiver is young and healthy and is another one all together to provide care when the caregiver he or she are of advanced age with less energy, stamina and resources.
I have been struggling with this notion more in the last several months as not only my disease progresses but also as various members of my family including my own caregiver have become ill. I wonder if I will have the fortitude to handle and rise to the challenge.
The answer is YES!
First, I have found that where there is a will there is always a way! This does not mean that the journey will be easy or without challenges simply means that God never gives us more than we can handle. Nothing last forever! All pain and suffering and struggles eventually pass. We must learn to ride the storms bend without breaking.
Second, we should not allow fear to paralyze us and keep us from enjoying the present or being derelict in our duties and responsibilities. This however, does not mean that we throw caution to the wind and live only for the moment without planning for future contingencies.
We all have felt at one time or another like our strength and care giving skills were sub-par. Yet, what invariably happens is that when 2 people in a relationship are sick one will always assume the role of the caregiver while the sicker, weaker individual recovers. This means that for a time one person has to put his/her needs aside to care for the more person with the more pressing medical issue as in the case of a friend with PD who suddenly was thrust into the caregiver role when his wife (the usual caregiver) had surgery, or another one who had to mustard strength to deal with spouses cancer despite their own medical problems.
In order to facilitate care and decrease stress, guilt, anxiety and fear I recommend a few things.
#1 do not let fear become a stronghold. You and I have the power to say NO and not continue with the negative thoughts that will lead us to desperation – mainly because is not healthy. Plus, I have found that our worst fears usually don’t happen rather it is the unexpected that hits us like a freight train. So why waist energy and worry over something that probably will never happen.
#2 decide in advance what it is that each partner needs or wants done when illness worsens- are these desires plausible, feasible and achievable within the confines of the relationship.
#3 make plans in advance for specific contingencies like what if the caregiver needs surgery and patient who will now be provider is unable to carry out that responsibility talk to support groups religious and otherwise for assistance, speak to the physician about having patient stay in a facility longer or be admitted together or send social worker and other ancillary staff to the home to help prepare meals or help with house chores. Doctors and social workers along with other health professional are there for you to use in times of undue stress. You should not have to go at it alone. Involve friends, neighbors, relatives to assist with specific needs like transportation, sitters, etc. Medicare often pays other family members to become caretakers. In some cities there is free transportation for sick and elderly like New York and some have free Uber services.
#4 for the future- meet with financial advisors, purchase long term disability insurance, decrease gap in distance between care giver and person with PD, down size before problems arise, have OT evaluate home for safety and accessibility for those residing within. Think about access to physicians perhaps moving closer to university centers would offer peace of mind.
#5 don’t neglect your health to care for the other person. Think about how much more the person whom you care for will suffer if you are no longer able to care for them. Being prepared assures us confidence! But relying on God gives us victory!
All rights reserved by Maria De Leon MD
As I have battled with Parkinson’s disease and my illness has gotten more complex so have my challenges in obtaining medication. I am sure I am not alone in this. Every time I go to the pharmacy as of late, the joy seems to be knocked right out of my soul for at least an hour. I have to brace myself and be in a sound state of mind to be able to navigate through all the hurdles a routine visit to the pharmacy can pose. It used to be that I could just call and have my prescriptions delivered to my office/home no questions asked. No let’s see if your insurance will allow it nor let’s see how many pills insurance will allot this time around. Each time, I step into the pharmacy, I wonder if the quantity be enough to cover my needs?
While I was practicing prior to Medicare part D (intended for patients to have better access to treatments they needed) patients had greater access to treatments even those that were costly in the form of subsidy programs, samples and other pharma assistance programs. However, with the advent of Medicare part D many of these programs disappeared, at least in my area, leaving patients high and dry without medications for months at a time. The reason being the soaring price of medicines which typically places a patient into a ‘donut hole’ (where insurance does not cover cost of medication). In some cases, this period can extend for months, as it does me. An estimated 17% are said to skip doses or stop treatment all together because of cost.
With the advent of the Affordable Care Act I found myself, like many others with chronic neurodegenerative illnesses, forced out of plans. As the number of medications began proliferating, due to my Parkinson’s diagnosis, I had to start allotting a good chunk of time just to visit the pharmacist (at times it is almost as lengthy as a doctor visit!).
All the while, as I stand there at the counter arguing yet again about the importance of getting my medicines on a timely basis, I see person after person of all ages and walks of life get the same comment…”Sorry, your insurance did not approve this prescription,” “you must get authorization from your physician first “or my favorite “if you want it costs such and such you have to pay…usually an exorbitant price and rarely for a full months prescription, which no one ever seems to be able to afford! The great majority of individuals have a sinking saddened look as they walk away from the counter without their much needed prescriptions others like myself may have a sudden rise in blood pressure causing severe head pain.
In the last several years’ retail prescription prices have increased six times faster than 1.5 % inflation. This is according to the new AARP Public Policy Institute (PPI) report. Even the prices of so called generic drugs has escalated to the point of being more expensive or as expensive as ‘brand name’ drugs, one such example is Rasagiline (Azilect) . The average annual prescription cost has reached new heights of over $11,000, which according to the experts is nearly 75% of the average annual Social Security benefits. This is madness!
If these trends continue people are simply going to stop taking medications which are no longer affordable increasing the taxpayer’s burden in the long run. This is because as I have experienced many times as a practicing physician as well as a patient when the appropriate medications are not given or taken routinely due to financial constraints there is a subsequent increase number of institutionalized in our case Parkinson’s patients due to worsening of symptoms including falls, strokes, hypertensive crisis, along with pain, aspiration pneumonia’s, and cognitive status changes. Other times, as I have recently experienced, when medications are altered to save insurances money, patients end up suffering needlessly and in the long run also end up costing not just insurances but inflict a monetary burden on patients as well. This is not even taking into account the time along with emotional distress caused on the entire family.
Placing a system of check and balance on the rising cost of medications is long overdue. Currently the rise in cost of medication is the fastest growing over any other health cost according to US News report of December 2017. To make things worse the drug cost in neurological illnesses like PD are disproportionately high. Medicare drug expenses for neurology has an annual spending of roughly 5 billion, the fourth highest in Medicare drug expenses. The hardest hit are those on Medicare and Medicaid due to Federal anti-kickback Statute, which prohibits pharmaceutical companies from offering shared assistance to beneficiaries of government subsidized health plans. With the majority of PD patients being on Medicare including younger patients due to medical disability this can be a great deterrent and challenge for many.
However, there are a few things we can do to ease our stress and burden in obtaining necessary medications:
- Be vocal- self advocate – let your needs be known to affect change. Talk to your lawmakers about the challenges and need for changes to health care to truly make affordable and accessible to all who live with PD. For me, this has been my biggest coping strategy. Although extremely time consuming at times for the most part it ensures I maintain a constant supply of medications.
- Team up with a clinical pharmacists, social workers and doctors to find the BEST treatments keeping in mind your personal financial situation. In my case having a clinical pharmacist through my insurance has been of little service. However, having my personal designated local pharmacist has been a great asset. Further, my biggest advocate and key team advisor has been my own MDS who advocates on my behalf continuously and provides me with the necessary medications and authorizations in a timely fashion. (She Rocks and I am extremely grateful for her). Some of the questions you should be asking yourself when discussing options with doctors, pharmacist, insurance etc. How many side effects, drug trials, and out of pocket cost am I willing to tolerate before I become proactive or vocal in demanding or asking for what I need? Do I have a choice and will I allow substitution of medications for a cheaper alternatives which may not be in same class as the ones I am taking. Can I pay extra to reduce or cut ‘donut hole’ altogether and are there supplement insurances or programs I can qualify for to aid in the cost of drugs?
- Consider generics only when available and appropriate keeping in mind there is a difference – but if you decide to stay with generics remember to keep same generic each time. Plus, if you get generic initially and do not get a positive response before discarding medication try a different generic or even brand ( highly recommend) to truly know whether it works or not. For instance, some drugs like Neurontin (gabapentin) do not work as well for tremors as brand name – this is years of experience treating patients with tremors.
- Use resources like national organizations to find assistance.
- Use additional resources like pharma assistance programs/NORD
Remember that the solution lies in all of us working together for better health.
Melville, Nancy. “Soaring Neurological Drug prices: How docs can help” (Feb. 17, 2019) Medscape Neurology
The facts about rising prescription drug cost. https://www.csrxp.org/…/2016/04/CSRxP_Facts-of-Rising-Rx-Prices.pdf
The high cost of rising drug prices. https://http://www.usnews.com/…/the-high-cost-of-rising-drug–prices
All rights reserved by Maria De Leon