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!

Breathing problems & PD: Dr. De Leon

 

“The

Trick

Is

To

Keep

Breathing ”

…because as long we are breathing we can start again!

a friend asked if I could talk about nocturnal breathing problems with PD. I will try to discuss the causes and treatments here.

As a trained Parkinson’s Doctor, I am still amazed by the enormity of symptoms related to PD which have a significant and possible deleterious effect on people’s qualities of life…many of which I was familiar with and many more which I have discovered as a consequence of living with PD myself.

One of the newly discovered symptoms is asthma…which I have developed since my diagnosis of Parkinson’s. We know from the literature that asthmatic patients have a higher risk of getting PD which could point and support theories of  PD being an autoimmune disease or having a viral trigger. However, the idea of PD or the medications used for its treatment triggering asthma remains to be proven. Yet, within the Parkinson’s support groups there has been many a talk about new onset of asthma after their diagnosis. First, I would not be surprised if this were true because some of the dopamine agonists have been linked to lung fibrosis and pleural thickening of the lungs- this syndrome was described as L-dopa respiratory dysfunction syndrome. This however was found to be more common in those with Parkinson’s plus diagnosis – with MSA ( multisystem atrophy) leading the list. Plus, Pergolide (Permax) an older dopamine agonist was removed from USA market in 2009 due to severe respiratory problems which resulted in fatalities.  The main cause of fatalities was valvular problems of the heart. A similar drug known as cabergolide ( Dis) also causes severe lung fibrosis, asthma and similarly causes heart problems by affecting the valves. However, since this is used only for  pituitary tumors and not PD remains available.

mirapex ( pramipexole) and to a bigger extent the Extended release compound can cause symptoms of wheezing, coughing, chest pain, phlem, shortness of breath (sob) with minimal excertion and swelling. I myself when I was prescribed mirapex ER experienced severe dyspnea ( trouble breathing ) and a cough- which is when I was diagnosed with chronic bronchitis. However, even after I stopped the medication my sob persisted eventually being diagnosed with asthma. I first I attributed this problem ( sob) to my thyroid being off – which is important to rule out as cause of sob especially if fatigued and wheight changes. Then I thought it could be the fact that I had gotten radiation for my cancer but X-rays showed no scarring or abnormalities but my breathing test confined to be abnormal and consistent with asthma. I was treated with inhalers and I am well controlled; yet interestingly the last time I visited my pulmologist, he said my breathing test, which he does routinely, were normal except for the fact that my tests appeared as if I had not put normal effort and lungs were not fully extended. I had taken my medicines but had not fully kicked in. so no matter  how much I blew  air or tried to push air out, my lungs felt stiff and rigid. But once medicine kicked in – lungs were pliable (normally expanding). Which means that PD can cause sob simply by having disease and stiffness of the breathing muscles- hence as symptoms advance patients start feeling more anxious and short of bread when medications start to fluctuate especially if off’s are sudden and unpredictable.

Abnormal breathing function is important to address as soon as possible for several reasons:

  1. it increases risk of chest infection – if not able to cough and clear lungs
  2. can increase lung infections by creating stagnation and shallow breathing – a condition called atelectasis
  3. Voice is more raspy, husky and lower tone if have poor air way and decrease lung capacity making people feel even more isolated because they are not going to be heard well.

plus since stiffness and rigidity tends to increase with stress and cold thus we need to practice techniques of relaxation and practice staying warm.

At night, people may have breathing problems for a number of reasons:

  1.  Wearing off
  2. gastric reflux
  3. obstructive sleep apnea

The bottom line yes both medications and poorly controlled Parkinson’s can cause difficulty breathing. Therefore, it is imperative to talk to your doctor as soon as possible to rule out other medical problems like thyroid, heart disease, sleep apnea, gastric acid reflux and asthma a which may or may not be caused by PD meds.

discuss your concerns with your physician and practice breathing exercises and relaxation techniques.

one breathing exercise – repeat 4 times- start standing, sitting or lying down ( better if standing ) lift arms up and do below

i) take a deep breath through your nose, pushing your stomach down

ii) then release air out slowly as you bring your arms down to your side

conversely – you can just relax shoulders then do the other two.

 

 

 

 

Beating the Odds — Living Well with Parkinsons Disease

By Sheryl Jedlinski, When diagnosed last fall with late stage endometrial cancer that had already spread well beyond my uterus, the smart money was not on me. Yet here I am, only four months later, poised to beat the odds, and see my cancer go into remission. I attribute this success to my gifted surgeon, […]

via Beating the Odds — Living Well with Parkinsons Disease

My Friends, This One is for You! — Women With Parkinson’s Disease

Hey, all you group members out there, this post is dedicated to YOU! When we first met, we were so happy to find that there were others out there facing some of the same challenges as ourselves. We weren’t alone in the daily slog of tackling our Parkinson’s Disease. To repeat one of my favorite […]

via My Friends, This One is for You! — Women With Parkinson’s Disease

Women & PD: by Maria De Leon

  My thoughts regarding my life with Parkinson’s as an MDS  mirrors those of a great warrior when she quipped  “it feels as if this life is not my life. It is a second life. People…

Source: Women & PD: by Maria De Leon

Tips for dealing with Chronic Pain: by Dr. De Leon

 

As I have spent the last week or so dealing with one type of pain or another I thought it might be worthy to go over the different types of pain people with Parkinson’s disease can experience and discuss some of the ways we can treat such pains while maintaining a full life.

Living with chronic pain is another ball game entirely than dealing with acute pain. As a person who has experience both and treated many patients over the years with both, I think I have a pretty good understanding of the consequences and common pitfalls we as patients and we as doctors fall trapped to when treating pain.

Chronic pain is one that lasts more than 3 months to 6 months since onset. although, some theorists and researchers have placed the transition from acute to chronic pain at 12 months.  Acute pain on the other hand is usually one that lasts less than 30 days.  Another popular alternative definition of chronic pain, involving no arbitrarily fixed duration, is “pain that extends beyond the expected period of healing”.[1] Epidemiological studies have found that 10.1% to 55.2% of people in various countries have chronic pain.[2]

We know that living with Parkinson’s disease on a daily basis can be a source of frustration and even lead to depression and feelings of hopelessness, if not treated promptly. Just knowing that there is no end in site can create a sense of hopelessness. So people that have intermittent pain have much better coping skills than those with chronic intractable relentless pain. The one common denominator amongst all of us who live with PD is the fact that we will experience pain at some point in our disease usually many times because there is no one single pain type. in fact most of us experience different types of pain even in a single week just as I have this past week, this is because my pain like that of many is  caused both by the illness itself, and medications as well as those caused by normal living (wear & tear if you will). Charcot famous neurologist who suggested name of Dr. James Parkinson be used for pathology and clinical symptoms of what we now call PD, recognized more than a  100 years ago that ‘pain’ was a phenomena of PD.

When I was in practice I loved the medication Vioxx ( before it was taken off the market) and so did my PD patients. This medication seemed to do wonders for the majority of patients with PD independent of the source. I, unfortunately, have not come across another medication which has the same effect. my patients too suffered the consequences of not having this medication available.

So you can have pain caused by the disease:

  • musculoskeletal
  • central
  • radicular
  • dystonic
  • joint

We now know that pain can be a presenting symptom of disease but the incidence in pain increases as we get older and disease advances. the majority of PD patients report pain as a muscle cramp or tightness in the neck, back, paraspinal muscles and calf muscles. The majority of this pain can be alleviated with anti-parkinsonian medications, at least in the acute phase. however, when it becomes chronic it requires a great deal more effort to break cycle which has sensitized the brain to be hyperactive to even the smallest pain.

Pain etiology: (3)

  1. PD itself:
  • tremors
  • abnormal posture
  • akathesia
  • dyskinesia
  • dystonia
  • falls/trauma
  • motor fluctuation

2.  medications:

  •   increase risk of cancer- prostate, melanoma, breast, benign brain tumors
  •  increase risk of osteoporosis – increasing risk of fractures
  • increase migraines/headaches

3.common diseases: which may worsen or change as we age- also may be indirectly exacerbated by PD or PD meds.

  • Diabetic neuropathies
  • migraines
  • herpetic neuralgia- PD patients have increased risk

Therefore, for pain etiology brought on by disease as in #1- the treatment is managing and adjusting dopamine medications including treatment with DBS and ancillary services such as physical, occupational therapy as well as joining in exercises programs but must have doctors approval prior to starting any programs to avoid further damage or exacerbation of symptoms. Botox, muscle relaxants, spine stimulators, baclofen pump, Lidoderm patches, and other muscle relaxant/anti-inflammatories  patches, as well as anti- inflammatory medications like ketorolac (Toradol) can play an important role in maintaining patients pain free. The use of prophylactic medications may also play a role in this group but not as much as in the other two. the key is to ALWAYS seek treatment by your MDS and a neurologist. They will then refer you if you need certain procedures or treatments which they themselves cannot perform.

There is no need for narcotic use in most pain situations due to PD unless it has become chronic and ALL other modalities have been exhausted. I don’t mean morphine or Demerol  but rather Vicodin, Tylenol #3 etc. Narcotics work great for acute pain due to herniated disc, fractures, cancer pain, or acute radicular pain- this means only a short amount of time until problem is fixed or it becomes chronic because there is no other  treatment modality and by then prophylactic medications need to be instituted such as antidepressants and  anti-seizure meds (Keppra,Neurontin, Lyrica, Topamax,Tegretol, Lamictal).  this will prevent brain from becoming sensitized and will also require much lower doses of narcotics. We don’t want narcotics in PD patients because the potential for exacerbating PD symptoms as well as increasing likelihood of confusion/disorientation and possibly triggering psychosis.

For category two: if medications like Stalevo are causing headaches switch meds; if unable to do so then back to what I described above. monitor for risk of cancer; monitor and institute prophylactic measures for osteoporosis prevention- monitoring vitamin D levels, taking replacement as needed, get sun at least 3 times a week for 30 minutes. Exercise to strengthen bones which will also improve mobility which will decrease likelihood of pain in axial muscles. get regular bone density scans.

For category three: treat diabetic neuropathies with anti seizure meds or antidepressants, take b1 (thiamine) daily, monitor thyroid, and B12 levels which can also cause neuropathies and monitor blood sugars (hga1c- better predictor) since there may be an increase in insulin resistance due to effects of dopamine.

If you are an elderly person and had chicken pox maybe at higher risk of herpetic neuralgia (shingles) should talk to doctor about getting vaccine.

As for me and all my pains which have to do with spine tumors and chronic migraines treatment of choice is botox which I plan on getting in next few days! meantime taking prophylactic meds along with anti-inflammatories (nsaid’s like Mobic, Celebrex, arthrotec,motrin, toradol or steroids) and muscle relaxants ( such as flexeril, tizanidine, Relafen, robaxin, klonopin, baclofen, dantrolene) to ease pain.

Finally, the best  way to deal with chronic pain is getting a good nights rest!  (at least 8 hours) and listening to your body when it is tired and stressed- make sure you plan ahead some down time each day at least 15-30 minutes. This for me is the best way to deal and avoid pain. Pain starts usually when I don’t sleep well and I am so busy I don’t allote time for myself. This includes time for inner quietness…meditation / praying . When you feel pain coming on – lay down in quiet dark cool place and calm down your breathing and your heart rate …with practice you can achieve this easily.

also distract yourself with activities that will bring joy like spending time with kids/ grandkids/friends but don’t overdue. Other activities which can bring joy and relaxation are painting/coloring /listening to music.  Don’t forget to hydrate, eat a balanced meal and exercise at least 3 times a week – this goes a long way in decreasing and warding off pain. Each time I deviate from my routine which includes above pain starts to pop up! Something to think about I your daily life – what triggers your pain?  Stress? Lack of sleep?

Go ahead and prioritize time for your yourself – self love goes – includes spiritual well being ( join a bible group) along way towards maintaining health and happiness.

 

Sources:

  1. Turk, D.C.; Okifuji, A. (2001). “Pain terms and taxonomies”. In Loeser, D.; Butler, S. H.; Chapman, J.J.; Turk, D. C. Bonica’s Management of Pain (3rd ed.). Lippincott Williams & Wilkins. pp. 18–25. ISBN 0-683-30462-3.
  2.  Harstall C, Ospina M. How Prevalent Is Chronic Pain? June 2003 volume XI issue2 Pain Clinical Updates, International Association for the Study of Pain. pages=1–4 [1]

3.  Broetz, et al., 2007; Bunting-Perry et al., 2010; Carr et al., 2003; Carroll et al., 2004; Ford, 1998; Loher, et al., 2002; Stacy et al., 2005; Wielinski et al., 2005

 

Gathering of the PD Goddesses: By Maria De Leon

 

Calling all the Parkinson’s goddesses and divas out there.. I am glad to say that we are finally making waves in this world of PD. As more institutions are beginning to address the issues rel…

Source: Gathering of the PD Goddesses: By Maria De Leon

Bowel Incontinence Another Embarrassing Casualty of PD: By Dr. De Leon

something to consider as many of us will be traveling for spring break and also to various conferences like PAN forum….

defeatparkinsons's avatardefeatparkinsons

We all know that since we got diagnosed with PD our bodies don’t work just like they use to; much to our chagrin it does not always respond like we would have it. Sometimes our voice leaves us in the middle of an important conversation with our best friend, other times it cause us to be embarrassed when our fine motor skills betray us and food goes flying across the room especially when we are trying to impress someone we like while on a date. Our handwriting has caused a commotion once or twice at the bank when we have gone to withdraw money because our signature is just not the same! We might have even caused a scene when we unexpectedly tripped on nothing but air. Yet, all of these may pale in comparison it seems when suddenly in the middle of a shopping spree, while driving or simply…

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PD Women Initiative Challenging Conventional Wisdom: by Maria De Leon

“The happiest people I have known are those that gave themselves no concern about their own souls, but did their utmost to mitigate the miseries of others.” Elizabeth C. Stanton The oth…

Source: PD Women Initiative Challenging Conventional Wisdom: by Maria De Leon