“Suffering creates patience and patience builds character and character builds hope.” Romans 5:3-5 It is easier to find things to be happy about when things are looking up and ev…
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.
Lately, I have found myself thinking about the areas of my life in which things do not fit neatly into a box. As Forrest Gump said; ‘Life is like a box of chocolates and you never know what …
Source: Grey Matters: By Maria De Leon
This post has been long overdue. All of us who have PD have experienced horrible feeling of fullness and simultaneous hunger at least once during their disease process. I am currently experiencing a severe situation with my stomach and intestines not functioning well. This is also the biggest culprit for which many of us suffer motor fluctuations, seemingly sudden exacerbations, worsening side effects, with increased irritability, fatigue, lethargy and dry itchy skin, sometimes even disturbances in sleep.
This refers to an abnormally slow emptying of food from stomach to intestines. Typically it takes about 1 1/2 – 2 hrs. for food to empty out of stomach. As you might imagine the delay can lead to serious complications like fluctuations in blood sugars and bothersome symptoms as food accumulates creating a bezoar (small stony solid mass that is indigestible). This problem occurs commonly in people with PD as well as in those with autoimmune diseases like diabetes and thyroid disease. Other medications commonly used in PD can also cause and worsen this problem. Some of these medications include things like the old antidepressants (e.g. Elavil) and opiate pain medications both of which are commonly used in Parkinson’s patients.
What are the symptoms of poor motility and decreased emptying?
- feeling of ‘fullness’ after only a bite or two
- food regurgitation ( food coming up after eating)
- abdominal pain
My symptoms finally made me pay attention not long ago after having been indulging and livin’ la vida loca during my birthday month. Sometimes too much of a good thing is just that… In the past with traveling, I have experienced mild bouts of gastroparesis which have resolved within a week or two after returning home and getting back on a routine. However, this time my gi symptoms have continued to escalate making me feel miserable. The bloating after even the smallest amount of food intake had become so severe that I had had to go to a larger size in pants or wear a lot more stretchy clothes than I would prefer just to accommodate the bloating. Also the constant feeling of fullness after a single bite was becoming an ever present feeling at all meals with the feeling lasting longer each time. Yet, I felt like I was starving. furthermore, my body has been falsely tricked into believing I am going into starvation mode retaining more weight than usual. Making me feel as if I just entered a slippery slope of no return. Thus, as in times past, I began eliminating offending foods which are known to exacerbate my horrible indigestion and other gi problems.
But, my problem was not resolving in fact I was getting worse especially due to increase amount of levodopa (I have found Rytary to be even more constipating than other levodopa compounds).
I woke up as usual with no swelling, feeling ‘skinny.’ I showered, got dressed, and ate – two bites- within a half hour my stomach had bloated to a 9 month pregnant state making it difficult for me to breath and even bend over..as I struggled to put on my socks the unthinkable happened…my dress ripped at the seam!! I have never been so humiliated. Fortunately, I was at home.
Now I am on the first phase of gastroparesis treatment! It has been harder than I thought. Although, I am already beginning to feel better and husband is psyched about the new body buff body I will get again! (that is still a while away…) this is after I cleaned my closet of all the cloths that did not fit well.
- Have above symptoms- you will know because your medicine is suddenly not working, taking longer, definitively obvious when you take Stalevo or Comtan which discolors urine typically within an hour begins to take longer to excrete in urine.
- Need a gi specialist to perform physical exam
- Abdominal ultrasound- to rule out other problems like pancreatitis and gallbladder issues and gall stones.
- Barium swallow- watch you drink a think pink liquid containing barium- although they have different flavors now like berry- it still tastes nasty!
- Upper and sometimes lower endoscopy
- gastric manometer – a thin tube passed through mouth to stomach to measure stomach’s electrical activity
- electrogastrography- another way of measuring stomach’s activity that is not invasive – measured by placing electrodes on skin
Tests to confirm diagnosis:
- A gastric emptying scintigraphy test-this involves eating a small amount of radioactive substance- if more than 10% of your food is still in your stomach after 4 hours then you have this
- A smart pill- swallowing capsule with camera/ device to track how fast food travels through
First order of business is altering diet. this is very similar to that given to patients with inflammatory bowel disease (i.e. ulcerative colitis, chron’s). I know because I was on this diet as a med student when I got diagnosed with inflammatory disease. funny, I found it a lot easier back then. perhaps it was because I had no money so I was limited as what I could purchase or because I did not have 5 teenagers living with me constantly eating the things I love like ice-cream and pizza which I am not allowed to have.
- No – caffeine, chocolate, carbonated drinks, alcohol
- eating meals on time and early dinner, eat smaller portions more frequently (6 instead of 3).
- drink lots of water with meals
- eat lots of fruit
- protein ( all the meat, fish, and chicken)
- no raw vegetables (must be well cooked)
- no pasta
- no grains
- no dairy
- low fat foods ( there goes all my Mexican food!)
- no popcorn ( movies are just not the same with out it- I was dying first time having everyone eat around me so I had to get a couple of kernels smell them and lick salt of one just to curve temptation)
- liquefied nutrients
- no high fiber ( difficult to digest)
- low residue foods ( i.e. applesauce instead of apples with skin or peel skin better but not as digestible as sauce)
- feeding tube / (total parental nutrition)
- helps to have a dietician/nutritionist on your side
There are no good meds.
- some of the medications used are Reglan – a no /no for PD
- compro (prochlorparazine) also no good for PD
- cisapride (propulsid,prepulsid)- no longer used in this country
- domperidone- need to get from Canada/ here instates there is special used granted for gi uses such as this- same medicine used for nausea with PD meds. (in women can interfere with menstrual cycle; alter thyroid and elevated bp)
- low dose erythromycin antibiotic several times a day for several weeks. ( the non-active antibiotic not as effective)
- Botox A
- electrical stimulation ( Enterra therapy system)- works best for those with severe nausea and vomiting
- surgery ( e.g. bypass)
With discipline and a little bit of luck most of us can get on track following a restricted diet- I am hoping to feel better soon.
this is important to address at onset as everything else because not only will you be miserable and be difficult to manage your PD but if you have other problems like diabetes, high blood pressure, cancer, thyroid disease – these things will put you at risk for worsening malnutrition, dehydration, weakened immune system, poor healing, rapid breathing, kidney failure, increase orthostatic hypotension and generalized weakness. Thus, seek prompt medical advice- do not delay.