Weight Gain after Deep brain Stimulation (DBS) appears to be Gender Specific. By Dr. De Leon

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” I keep trying to lose weight but it keeps finding me!…”

As I have mentioned several times in the past, I am particularly interested in women’s issues as they relate to Parkinson’s disease because I believe (and fortunately others are beginning to agree with me) that gender does matter in the presentation, disease progression, response to treatment, and most importantly outcome. Over the last month I have been particularly interested in weight changes with PD in light of the fact that I have put on several extra pounds with the medication changes. Many of us know first -hand, that weight issues are yet another aspect of living with PD; yet it seems to me that us women appear to have the short end of the stick in this regard particularly when it comes to weight increase after DBS.

In my practice it seemed to me that men rarely complained about weight issues unless the spouse4s or care takers were concerned about their persistent weight loss. On the other hand, the women always seemed to complain of increased girth, which I am sure many of you can relate especially after menopause there is already a tendency for weight gain. At the time, I attributed some of this behavior to inactivity as well as depression which usually causes an increase in sedentary life thus decreasing caloric consumption. (This was the accepted concept within my profession). But, after living with this illness for lo this many years and being around a greater number of patients of all ages, I am not entirely sure this is the correct assumption.

I firmly believe the differences are rooted in gender particularly as it relates to estrogen. Why else would there seem to be an increase in weight in women after DBS particularly the STN (sub thalamic nucleus which is most common site for dyskinesia treatment) transplant not typically seen in men of same age, ethnicity and disease stage? Weight gain post dbs occurs in about 30% of those implanted and appears to be gender specific. Several of my close female friends who have undergone this procedure although has worked very well in controlling symptoms of PD has caused an increase in weight and not necessarily because of decrease in energy expenditure from dyskinesia’s. This can be further substantiated by a study looking at the weight changes with DBS in both men and women. Patients post DBS had on average of 6.6 lbs. by 3 months up to 44 lbs. in a year. Interestingly, women gained mostly fat while men increased fat free mass. This is huge in my mind and suggests to me that we should start treating women and men differently after surgery and even before to decrease risk of weight gain which also increases the potential for cardiac and cerebrovascular events for which women with PD are already at higher risk, as well as metabolic disorders like diabetes. Both diabetes and insulin resistance risk increases with dopamine replacement. We still don’t know for certain what causes this metabolic changes. Some speculate that is the sudden loss of energy expenditure from muscle rigidity, dystonia, and dyskenesias. Others think it could be affecting the sympathetic nervous system controlling organs. In men there was no change in testosterone but no mention of estrogen levels recorded. Best outcomes with the lowest weight gain occurred in patients who had the worst UPDRS 111 scores before surgery (i.e. had significant improvement with dopamine and severe “off”).

Advice based on this findings before doing dbs: talk to your physician and be informed.

  1. Because it occurs with b/l stn surgery (no other data available) consider unilateral or different site?
  2. There is a case for doing procedure on the RIGHT patient and in the right window.
  3. Submitting yourself to a strict program before and after to control weight which includes decreased lipid intake and increased exercise, progressive physical training early post-surgery.
  4. Check for metabolic abnormalities such as thyroid and insulin resistance which can increase weight.

Sources:

http://www.medscape.com/viewarticle/561023_4

https://www.ncbi.nlm.nih.gov/pubmed/14639677

Raising PD awareness ONE shuffling Step at a time. : By Dr. De Leon

As we approach a New Year, I am more determined than ever to continue the fight against Parkinson’s disease both on a personal level as well as a collective effort. As a physician, and patient I have been privy to many extraordinary advances in the understanding of this complex illness over the last decade. However, 2016 saw rise of a new movement towards better understanding the differences among us all (those of us with Parkinson’s), in an attempt to try to find a unifying link that will lead us one step closer to a cure- if not for all perhaps for a number of  distinct subtypes (e.g. LRKK2). There is the large PD study being supported in part by the PDF which aims to unveil different genetic information causing Parkinson’s disease among various ethnic populations (particularly looking at Hispanics with PD).

We also have begun to recognize the importance of gender in the presentation and I believe soon we will also realize that age also plays a factor adding another piece to the puzzle. We have learned that non-motor symptoms are just as/or more important to recognize and treat because not only do they start 10-15 years before motor symptoms; but also can often be the major cause of disability and decreased quality of life. we got several new formulations of old drugs e.g. Rytary and are anxiously awaiting new ones to come out like inhaled levodopa (Accorda) and sublingual Apo morphine.  We saw strengthening of the commitment for a cure as organizations merged (NPF & PDF; MJfox & PAN). We mourned the loss of one of the greatest, Muhammad Ali, who is as much a hero outside as inside of the boxing ring- although, his legacy of courage under fire will live on.

Yet, I am afraid that we have just begun to scratch the surface of one of the most intricate neurological diseases known. One way in which we can continue to peel the layers is by raising awareness nationally as well as globally. The world Parkinson’s congress held this year in Portland brought more diversity than years past helping to disseminate information at a faster rate. We have to take advantage of the fact that the biggest sources of information in any disease especially neurological diseases is not from any doctor’s office but rather from other patients like ourselves. This is especially true in the Hispanic community. So, in order to ensure that accurate information is disseminated is for all of us to share the knowledge we possess with people in the health sciences and healthcare fields and begin an open communication to begin filling in the gaps both sides have. Only when you merge the knowledge can we have effective advocacy to disseminate sound information that will truly elevate and help live a more productive, healthier, happier life despite PD. In the absence of this we will continue to have discrepancies in diagnosis which is only harmful to us the patients and our families.

In light of this, how do we then begin to raise awareness along with the standard of care for the families and nearly 10 million people who live with Parkinson’s worldwide?

I would say that the seed to help others understand the in’s and out’s of PD starts with self-love. First, we need to accept our diagnosis not really liking it but just as another life experience from which we can learn and grow from. Don’t get me wrong just because I have accepted living with PD does not mean I am not doing my best to kick its hinny, or that I don’t get worried or frustrated about being forgetful, unable to multi-task, care for my daughter at times, or even practice my beloved profession. However, by owning our disease we can then become an asset to others who come after us, as I have attempted to do over the past few years. Not only can we educate each other and to our physicians by opening up about the things that embarrassing, frustrating, down right infuriating at times, as well as the things that matter most to us in life and in battling this illness, leaving aside the shame which only serves in my experience to make life more difficult.

However, I understand that sometimes we are best able to start the conversations of salient matters in a more intimate setting like a support group. As many of you know from personal experience, support groups are the veins of the vine, the life line to living well with PD and bringing insight back to the health care professionals and vice versa.

Yet, the reality is that not everyone has access to a support group because of distance, economics, place of residence, etc.  Thus, how does one have access to this? Of course there is always social media which can bridge any socio-economic or distance. Another option is starting your own group if you prefer something more intimate, personal and face to face which affords the benefit of having closer people in the same community to lean on when times get tough, because we all know it takes a village to make PD work for us.

Few tips to finding and starting a support group:

First, find one where you feel loved, comfortable, and free to be yourself …where your needs will be addressed, in social media or in your community or both. These groups can make a difference between a barely bearable existences to one worth living to the fullest.

So how do you become involved with one of these? IMG_0001.JPG

Look around at your community to see if there are some groups already established. Ask your friends, your health care communities, the various Parkinson’s organizations, go online. If there are multiple groups in which you are interested attend a few or all to get a feel of the vibes…

For instance if you are young person with PD, you might prefer to join a young support group, a women’s group (because gender issues are different especially if child rearing), or single people with PD, or even one based on PD status like already had DBS (deep brain stimulation) and such. I, myself, truly enjoy meeting with other women with and without PD because independent of our health status most of us share same goals and life challenges like working and having kids, being a mother, a wife etc. Sometimes we simply feel more comfortable in expressing ourselves or talking about sensitive issues if we are surrounded by similar minded individuals. But, above all choose wisely. Stay open to others ideas.

If no such group is available that touches your heart or seems to meet your needs at the present time consider starting a group of your own.

However, before you take such an undertaking seriously think about your health, your time constraints and more important your physical limitations. Is this going to put undue stress on your physical and emotional well-being? Can you handle the responsibility alone or would having one or two people to co-create and share responsibilities for the group work better?

Think about:

  1. How often do you want to meet and where? Monthly, quarterly etc. keep in mind meeting on a scheduled basis is easier to remember and have greater attendance.
  2. How are meetings going to take place- have guests all the time ( this can create a lot of work for one person), or once in a while like special events, are the group going to be free to talk about issues or one person is going to lead?
  3. Is there a need in your community which has been unmet
  4. Is the place accessible to people you are trying to reach? Look for large rooms that are free like a public library, assisted living, nursing home, or hospital conference room. But, make sure this place has good parking, handicap accessibility and preferably access to public transportation.
  5. Time of day for meeting is also extremely important which has to take into account the age group of people trying to reach, are they retired or employed, can they drive themselves or need rides?
  6. Are you opening the group to patients only, caregivers only, both?
  7. What are the meetings going to look like? A lecturer/guest speaker? Open exchange of information, stories? Both? Participate in activities like painting or singing?
  8. How do you plan to get word out to community? Flyers to doctors, place ads in newspapers – note: some communities allow free advertisement, also may get help from hospital, nursing homes, assisted living etc. A web page/ social media can be the easiest most affordable way of getting word out. But, don’t forget about the old phone which always works among the elderly and some groups.

If you are reading this then you are already involved most likely in a support group or perhaps still feel isolated now you have some basic information to help you start the New Year on a positive note knowing full well that you are loved, you matter and are not alone and together we are going to make 2017 the BEST year possible by breaking down barriers one small shuffling step at a time!

Happy New Year 2017!!!

All the best from the desk of Dr. De Leon a.k.a. Parkinson’s Diva

Stay tune for my new book coming out next year-

@copyright  2017

all rights reserved by Maria De Leon MD

 

 

Reflections: By Maria De Leon

“He who learns must suffer and Even in our sleep pain which cannot forget…falls drop by drop upon the heart until in our own despair against our will comes wisdom through …the awful (aw…

Source: Reflections: By Maria De Leon

Women’s Health & Sexuality: By Maria De Leon

“It’s not the size of the boat but the motion in the ocean…” (Image by Ross Webb) There I was, in the middle of a crowed classroom, addressing students and faculty alike abo…

Source: Women’s Health & Sexuality: By Maria De Leon

The Need for Vitamin D in PD: By Dr. De Leon

“Them bones…them bones..”

Now that we just spent the last week or so traveling, spending time with family, and of course indulging in that delicious Thanksgiving meal is time to get back to basics especially as winter months approach where days are shorter with fewer hours of sunshine.  Are you getting enough Vitamin D in your diet?

Many recent studies show this essential vitamin to be low or deficient in many of us with chronic illnesses like diabetes, lupus, and of course Parkinson’s disease among others. In fact, as per Archives of Neurology Vitamin D is so compromised in PD patients that roughly 1/2 of the people with PD have  Vitamin D insufficient, while a 1/4 have show a clear deficiency.
[The Endocrine Society uses the following guidelines for vitamin D blood levels in adults and children:
Vitamin D deficiency-20ng/ml or less
Vitamin D insufficiency- 21-29ng/ml
Vitamin D sufficiency – 30ng/ml or greater (NL) ]

Thus, if your Vitamin D levels have not been checked recently by your health provider they should be; plus you should have vitamin supplement in your medicine cabinet. The reason for this is not only that most of us with chronic illnesses have a deficiency but even for those of us who are otherwise healthy can’t seem to get enough of it as per recent studies despite being present in many ordinary foods we eat. Some of the reasons for insufficiency despite adequate nutrition is small quantities in food and although we should be able to absorb what we need from the sun rays. It seems many of us at least in this country are not getting enough sunlight perhaps because we have become more indoor and sedentary and when we are outdoors we wear more UV light protective clothing and make up.

So why is Vitamin D such a big deal?

Well I think we all know about its relationship to calcium and strong bones. When its deficient we are more prone to fractures a common problem with PD especially since we are more likely to have falls as disease advances.

Vitamin D is also a key to boosting our immune system and reducing inflammation – this may be one of the crucial treatments in helping those with LLRK2 gene carriers to help with PD symptoms ( still not fully understood role of inflammation in this subtype). another reason to take Vitamin D supplement is the studies which suggest a decrease in blood sugars ( in type 2 diabetics) in those with higher Vitamin D levels. As I have mentioned before, people with PD are more likely to develop insulin resistance due to dopamine replacement which can potentially lead to diabetes; especially in those of us who are already at risk. Thus having a higher level of Vitamin D in your system can lower your risk for developing type 2 diabetes. Furthermore, Vitamin D is also important in memory and fatigue but it does not stop there. Early reports have suggested problems in kidney, nerves, and eyes with low levels.

If you have had gastric bypass, inflammatory bowel disease, have dark skin, are obese, older, or have limited exposure to sun are at an even higher risk of having severe deficiency when compounded with PD.

According to the USDA fatty fish ( e.g. salmon) is a top source as well as eggs (yolks), and liver (beef). many of us believe that milk is an excellent source of calcium although vitamin D fortified in order to get dietary needs met you would have to consume 13 cups daily.

  • The Endocrine Society- recommends 1,500 IU while NIH suggests 600 IU –
  • Look for supplements labeled D3- same as body makes
  • Eat a fat source such as peanut butter, avocado, or egg with supplement to better absorb the vitamin
  • Try app-dminder.ontometrics.com to gauge how much vitamin D you need

However, in the end the best way to determine how much supplement you need is by talking to your physician first.

 

Sources:

“The Need for Vitamin D”: Diabetic Living. (winter 2016), 56-57.

Devere Ronald, MD FAAN, “Cognitive Consequences of Vitamin D Deficiency”, Practical Neurology,Vol. 13, No.1,January/February2014.

“Low Vitamin D levels Associated with Parkinson’s Disease’, Parkinson’s Disease Foundation News & Review, winter 2009

Thanksgiving leads to True Happiness: by Maria De Leon

“In all things give thanks..” 1 Thessalonians 5:18 as the years go by, I find that it is the small things in life that truly matter. It is these things that make a life worth living and…

Source: Thanksgiving leads to True Happiness: by Maria De Leon

Food for Thought on the Future of Health Care: by Maria De Leon

Now that the new president has been elected, politics aside, I am a bit excited and hopeful about the possibility of new, much needed in my opinion, healthcare changes. As a physician and patient I…

Source: Food for Thought on the Future of Health Care: by Maria De Leon

Caregiving is not for the faint of heart: 7 tips to make it work: By Maria De Leon

“Don’t dwell on the disease, value the moments. the pearls of wisdom, their smile and humor.” ~unknown   Whoever says caregiving is easy has never really been a caregiver; it…

Source: Caregiving is not for the faint of heart: 7 tips to make it work: By Maria De Leon

New trial: Fetal Transplantation Usage for Treatment of PD: By Dr. De Leon

Nearly 30 years ago, the novel treatment which propel me into medicine but not just medicine but neurology and Parkinson’s disease was fetal brain transplantation into PD person’s brain in an attempt to halt disease. After several decades the procedure was banned here in the States and an unofficial moratorium was placed elsewhere on this type of trial. For those 300 plus patients which did receive this “novel” treatment, the results were a mixed bag. While the procedure showed some improvement in younger and less severely affected Parkinson’s patients, “many patients experienced off-drug ‘runaway‘ dyskenesias which resembled a lot like chorea at times. These patients then had to be treated with Tetrabenazine, Reserpine as well as pallidotomies and DBS to attempt to control symptoms.

Now, using a different technique by researchers with a new PD population a trial is underway to test the cell based therapy, which according to Dr. Roger Baker (lead investigator) professor of clinical neuroscience at Cambridge University in the United Knigdom is by any means designed to be a cure but rather another method by which dopamine is better (hopefully) delivered into the brain.

some of the previous trials problems were believed to be due to site implantation since the fetal nigral cells containing dopamine could not be directly placed into the hosts nigra, they were placed in the near by striatum. Uneven re-enervation of these cells is believed to be one of the causes of ‘runaway’ dyskenesias as well as the presence of serotonergic neurons from the donor raphe nucleus which can also produce dopamine in unregulated fashion. Further problem seen with initial procedure back in the 1980’s and 90’s  is the yet unaccounted reason for  the development of Lewy bodies in the grafted (donor) cells.

Because the European community ( where trials began) have always insisted on the merit of this procedure as a possible treatment a TRANSEURO consortium was gather to further discuss results. they have found there is a specific type of patient that responds best- so now they are recruiting patients between ages of 30-68 who have mild to moderate illness with minimal to no dyskenesias. now these patients will receive 3 fetal nigras on each side vs. the 2 used on each side in the past. these patients will receive a year worth of immunosuppression and be observed for 3 years ( believed to be time frame for maximal effect). they hope to control some of the emergence of dyskenesias by their new harvesting protocol which will decrease or minimize the number of serotonin containing neurons. hope is to improve dopamine related symptoms however, the non-dopaminergic effects will still remain unaffected.

Once again, I see hope ( but a smaller ray of sunshine than when I first began this trajectory) for a future generation of PD patients for a better life as I had once envision as a young neuroscientist. If this proves to be successful it will undoubtedly unleash a whole new era in the science of stem cell therapy research for the treatment of neurological diseases.  However, I along with other more prominent neurologists like Dr. Anthony  Lang  caution those considering participating in such trial for it will be not a cure PD and if it works it will only provide limited  results affecting only the symptoms related to dopamine.  Keep in mind that a big part of the spectrum of PD is non-dopamine related and these are in fact the things which I believe as a doctor and patient which cause most PD persons problems such as gait instability, mood and sleep problem’s, along with declining cognition. so in the end, aside from boosting science in a new direction I don’t foresee this to replace DBS which has a long trajectory of excellent outcome and compared to fetal transplantation a much les invasive and aggressive surgery without the need for whole body immunosuppression which is known to carry many risks of its own accord. perhaps may have a niche for usage if works in those with young onset PD with Parkin gene mutation

Others of course like Dr. Baker are much more optimistic and believe that this may actually some day be first line therapy. highly doubt based on my years of experience with this disease and its complexities but one never knows….

Food for thought….

Sources:

Robinson, R. (October 20, 2016); “Fifteen years later, a new trial set to test fetal transplants again is for Parkinson’s Disease.” Neurology Today. 16(20)13,23.