via Stem cell therapy in Parkinson’s disease: Promising treatment or Hoax? By Dr. De León
Stem cell therapy in Parkinson’s disease: Promising treatment or Hoax? By Dr. De León
Given the fact that living with a chronic neurological disease like Parkinson’s for which there is no cure can make any of us in a moment of desperation turn to any form of treatments and therapies which promise a cure. I have recently noted an increase of talk about this subject on social media in our PD community. Unfortunately, many good people have been bamboozled into believing the hype on social media about stem cell therapy as a cure all! The people offering stem cell therapy as a cure have prayed upon the fears, and suffering of many in our community. However, it is important for me to outline the facts and discard the myths surrounding these so called new therapies that promise so much.
Let’s first look at what are stem cells and why are we so interested in stem cells as a possible treatment for Parkinson’s disease.
• They can continue to divide for a long time
• Unspecialized
• Can give rise to specialized cells
Back in the 1980’s, there were trials in which fetal dopaminergic neurons were transplanted into the brain of some patients some of who had long lasting effects. It was then proposed that in vitro dopamine cells derived from cells derived from embryonic cells and bone marrow could be harvested to produce same effect. However, as of today, there has been no evidence that in vitro cells injected/transplanted in to animals with experimental PD can then re-innervate the striatum with dopamine neurons in vivo and give rise to a considerable improvement and recovery from deficits resembling human Parkinson’s symptoms. Furthermore, in order for the recovery to be effective one must have a large quantities of dopamine neurons which has not been feasible due to extremely short survival after transplantation.
Since, there is still so much we don’t know about this extremely complex disease, finding ways to modify it has proven to be a daunting task. Nevertheless, back at the beginning of this decade there was a small study with stem cells which showed some modicum of promise. This study used adult stem cells (these can be obtain from same person -autologous or another individual-allogenic). Both have their advantages and disadvantages.
Types of cells
• Embryonic- An embryonic stem cell is one that can differentiate into any cell type of the body this is known as pluripotent these then give rise to multipotent stem cells which can the. Differentiate into specialized terminal cells e.g. nervous system giving rise to different type of neurons
• Adult …they do not regenerate as well and if place in different environment these may or may not develop that areas specialized cells which means these cells have to be placed in basal ganglia to even have a chance …
• Umbilical
• Hematopoietic
Studies involving stem cells have included embryonic cells and placed into brain via olfactory nerve tract
The main problem is that most of the people claiming to have the “cure” using stem cells are using adult stem cells from the skin which remain as skin cells especially since they are given back as an intramuscular injection. Many times these develop into scar tissue or lipomas (fat tumors)causing other problems. It is also important to note that when receiving cells from another individual these must be matched for ABO blood type, Rho factors as well as gender. If implanted outside of the nervous system having a mismatch can result in antibody production as well as decrease in longevity of cells. However, if implanted in the nervous system because of blood brain barrier this is not an issue necessarily. However, the effects of this is not known as of yet because the nervous system also possess cells like macrophages and glia which are the brains immune system which can potentially attack these new cells.
In the study, I mention previously autologous totipotent stem cells were used.
These cells are capable of differentiating into any cell and give rise to an entire human organism. The cells were uncommitted to a particular cell type when used therefore potentially much more likely to develop neurons if placed in nervous system. The reason autologous cells are preferred as I mentioned before we would eliminate the need for autoimmune suppressants necessary in all transplantations when foreign cells used.
Remember not all stem cells are alike…although stem cell research is actively evolving and is currently a very dynamic field. Scientists have discovered that hematopoietic cells can be harnessed to develop into nerve cells. These types of cells have already been used to treat other medical problems. However, cells have to be extracted from bone marrow (-autologous). Plus it need the right location …into the striatum of the brain. Placing outside of basal ganglia will NOt produce the appropriate dopamine producing neurons even if placed in the brain much less if placed outside of the central nervous system. Things like temporal lobe epilepsy could potentially result if cells are placed at random in the brain causing migration to other parts of the brain.
In conclusion, what we want is autologous adult totipotent stem cells not embryonic or fetal to be placed inside the brain cavity meeting all these requirements makes for a higher likelihood of success although yet to be proven. Unless, you are participating in a trial meeting these parameters then you are allowing yourself to be part of sham therapies which on top of being extremely expensive could be deleterious to your own health. Fortunately, because of so many scammers, the FDA recently announced back in march of this year that the “wild west of stem cell therapies” is coming to an end with the introduction of a new frame work and guidelines due to the national and international pandemic of providing treatment which are not only ineffective and costly but also proven harmful. I for one could not be happier about this! People need to be held accountable for their careless actions.
As an aside: An autologous bone marrow adult totipotent stem cell study is currently taking place at UT Houston under Dr. Mya Schiess- The coordinator number to get more information can be reached at 18326329 to see if you qualify.
Copyright@2018
All rights reserved by Maria De Leon
Sources:
Lindvall O., Kokaia Z. Stem cells for the treatment of neurological disorder. Nature June 29, 2006 Vol. 441
Click to access treating-parkinson-disease-with-adult-stem-cells-2329-6895.1000121.pdf
Is the wild west of stem cell therapies coming to an end? American council on science and health http://acsh.org/news/2017/11/17/
Treating Biphasic Dyskenesias in PD :by Dr. De Leon
Treating Biphasic Dyskenesias in PD: by Dr. De Leon
Have you ever seen a water spout? A sudden breeze of wind elevates the water and makes it spin faster and faster in a matter of seconds until it gains enough momentum to glide on the surface and travel right out of its boundaries. I have stood at the edge of shore watching in awe how a once calm ocean suddenly spewed out a spinning water spout the size of a skyscraper. As it passed by my side scaring the heebie-jeebies out of me, it crossed the street, as if it owned it all along.
This is what having biphasic dose dyskenesias can be like. This is not a frequently occurring type of involuntary movements caused by levodopa intake, when it occurs it can be extremely unsettling to say the least. this is by far in my experience the most difficult to treat with medication. This is because patients experience dyskenisias of brief duration shortly after taking medication (within half hour to an hour) followed by severe spasms and dystonia particularly in lower extremities 1-2 hours later. This phenomena can occur through out the day as were mine in the evening. but, they are more commonly present in the am with first dose. Although once in a while we get lucky as was my case. For me decreasing the dose of medication in the evening did the trick. However, the best solution and treatment for people having this problem is deep brain stimulation.
Since all dyskenisias are not equal, you as patient and care giver can best advocate for yourself or loved one by keeping a close diary of events so that your physician /MDS can best adjust or decide plan of action to best suit your needs.
Recommendations: keep a diary of events:
- total episodes you have in a typical day/ week/month
- how many hours/ minutes before the dyskenesias take place after medicine intake
- how many hours/ minutes do these episodes last?
- after the episode how long before you started to feel well again/ have symptom control?
- how long did you have symptom control with medicines?
- did the symptom control last from dose to dose?
- did you experience dyskenesias then spasms? How often and when?
- also think about how many hours in the day you are well vs unwell?
Don’t forget to list any and all medications you take to cope with these symptoms when they occur. (any over the counter meds? home remedies? pain pills?)
More importantly:
How is your life impacted by these episodes
How often a week/month do you miss work/paid occupation or domestic responsibilities because you are experiencing dyskenesias?
How often do you miss social events weekly/monthly with family and friends because you don’t feel well due to the dyskenesias?
Are you unable to do or carry out your hobbies or passion? how often does this happen?
The day i could no longer go shopping for fun or even go to the movie theater which I love to do was the moment I realized something needed to change!
You are now equipped to be your own advocate- know your symptoms and your choices!
Fortunately, we now have more tools in our armament to make life better including a long list of medications one of which is the recently approved Gocovri (amantadine ER) for dyskenisias – however, because there are different types this may not be the answer for everyone. As an alternative, we now have 3 types of DBS surgeries or palladotomies, for those who live in countries where DBS is yet not available, which you can discuss for your physicians.
@copyright 2018
All rights reserved by Maria De Leon MD
Parkinson’s mom diary: Maria De Leon
Best way to Deal with AM (early morning) offs! By Dr. De Leon
Best way to Deal with AM (early morning) offs! By Dr. De Leon
” When the world careens out of control, we can rest in the fact that God spun this world with a simple word. Matter from emptiness. Beauty from void. Community from chaos.” Mary E. DeMuth
Today, I will talk to you about a subject that is so important for us with PD to know and understand. Many of us talk about ‘off’ periods but still have some confusion about what that really means. First, you should know that there are 4 ‘off’ periods we doctors focus on. These usually are in relation to levodopa.
#1 end of dose – this is known as the return of PD motor and non- motor symptoms which resurface once medication effect ends. For instance, if I have tremors which lessen or go away completely with intake of levodopa when the levels in the blood begin to fade before my next levodopa intake there may be a resurfacing of tremors. What we want is for symptoms to be continuously suppressed with little or no intervals between time one dose effect ends and the effect of next dose begins.
#2 peak dose– the levels of levodopa circulating in our blood stream fall into a bell curve shape. At the beginning, levels rise slowly and sustain within therapeutic range for several hours. However, as our disease advances we may experience a fast rise going above the therapeutic range and then drops faster in a shorter amount of time. So not only could you experience end of dose effects sooner than before but at peak level of dose because outside of therapeutic levels one may experience- side effects like dyskinesias. So a patient may feel good for a short period of time have dyskinesia’s at peak for 30 minutes then go back to normal.
#3 early am– this is when patients have gone a longer time without medication through the night and basically have worn off completely when they arise and essentially are experiencing an end of dose effect.
#4 sudden off– we know that when we first start taking levodopa, our brains are exquisitely sensitive to its effects, meaning that a low dose can go a long way. As time goes by the length of time it lasts in the system diminishes. But each dosage should last same or nearly same amount of time in system i.e. 6 hours every time. However, in some people the effect of medication in regards to time in which is effective becomes unpredictable sometimes it last 6 hours, others may last 4 hours while other times may not have an effect on motor symptoms. These episodes are called sudden wearing off.
The more you know the better you will be able to discuss changes and fluctuations with your physicians so they in turn can adjust your medication to fit your needs.
This I believe is one of the key reasons why so many of us are not as well controlled. Sometimes we erroneously assume what is disease, what is side effect and what is meant by being ‘off.’
I will discuss treatment for all these types in the next few weeks. Now that all of you are caught up in the terminology, I will focus on early am wearing off because I think this is a very common problem for most of us who live with PD. Plus, it is one of the easier things to treat.
Most of us who live with a chronic illness like Parkinson’s disease know how hard is to get going in the am – especially when suddenly awoken from sleep. imagine being confused disoriented stiff unable to move with ease or move at all – I know all of you have struggled to get out of bed, get dressed, shower, brush your teeth or even take your medications first thing in the morning. At times I had been unable to dress myself without falling / feeling like a woman made of tin and unable to find the oil to save my life – you might even awake not knowing where you are or how you got there.
Some people may fall out of bed or fall with first step because of orthostatic hypotension but more commonly due to freezing episodes. Some of you may even experience shuffling while walking bouncing from side to side of corridor with fear of falling, unable to open bottles to even take first dose of medicine in the morning.
Sound familiar?
If this happens every single morning, then we are dealing with am off episodes.
First, you must look at the time you take your last medication.
Second, what time do you awake in am? Do you wake up in middle of the night to go to the bathroom or some other reason? Can you move with ease at that time? Or are you having dyskenesias?
Third, what is your last medication? Is it long acting or short acting? Do you take anything else to make it last longer?
For me, I began waking up extremely rigid but was also noticing that I was not moving in bed at night – normally stuck in one position which was causing my arm to go to sleep. I go to bed late and wake up early. So I increased my medication by taking a dose close to bed time but also made sure that this dose would last till I awoke the next day. Often times we treat am off by increasing bedtime dose and prolonging it with comtan, amantadine, dopamine agonist. I prefer a comt inhibitor it provides a smoother release. Now that 24 hour comt inhibitor (opicapone) available in some countries plus extended release amantadine (gocovri) we should be able to diminish these morning periods with greater ease. Another way of improving am wearing off is by taking apomorphine which will kick in fast and cover you until your first am oral dose kicks in.
The main point is documenting and paying close attention to how your medication is working to allow doctors to adjust your medications as needed. Caution, many of us have severe constipation which interferes with absorption of medication in the small intestines- what this does is delay onset of medication effect – NOT a wearing off!! Plus, the doses can accumulate giving you more side effects when it kicks in like greater nausea, vomiting, dizziness, hypotension, and/ or not control symptoms to the degree they are usually controlled (blunted affect with every dose).
so lets get moving again in the am by following these tips.
@copyright 2018
all rights reserved by Maria De Leon
End of life choices in Parkinson’s : bridging the disparity across cultures : by Dr. De León
No where is being able to navigate living with a chronic progressive neurological disease more Important than in the ethnic communities. We as Latinos are far behind in not only getting prompt diagnosis and correct treatment due to financial, linguistic and cultural barriers but even when there is appropriate care, nearing the end of life can be one more hurdle for which many are ill prepared especially in deciding if and when a loved one can be placed in hospice.
Understanding the challenges of various ethnic and racial background could help us increase and improve the care of our loved ones when the end is near without leaving us emotionally, physically and financially bankrupt.
Among minorities there is still a lack of trust in traditional medicine. For some it dates back to studies like the Tuskegee syphilis study and the polio study in which minorities were infected with syphilis and polio concomitantly and allowed to progress without treatment even when penicillin treatment was made available to rest of world.
Among some of the concern Hispanics have in placing there loved ones in hospice ( a place for palliative care to ease pain and suffering in last days) is the fear that a loved ones spiritual needs will not be met. This could be quite distressing for instance if someone believes that they must be allowed to have a last confession before dying otherwise risk the possibility of eternal damnation. One of the things my grandmother enjoyed most while she lived her last months under the care of hospice was the weekly visit by a spiritual leader.
Another problem is that minorities like Hispanics typically like to make decisions in a more general manner in which everyone’s voice is heard as supposed to having a single person being the one making all end of life decisions for family and patient. Although, this is still a family preference we must understand the various culture barriers in order to provide optimal care. Getting a social worker involved helps to facilitate the interaction between the providers and the patients and family needs and wishes.
But, then there is also the stigma and guilt placed by society and culture particularly within the Hispanic communities of not taking care of loved one at home …we as Hispanics don’t put our elderly in nursing homes …doing so may indicate a sign of weakness as well a lack of love and respect. Traditionally, this type of behavior is frowned upon and can cause major psychological distress for caregivers and patients as well (for loved ones may be a feeling of abandonment accelerating depression, anxiety, and fueling resentment).
In order, to aid in finding the best care for end of life choices is first eliminating the guilt out of the equation by asking family to think of loved ones best interest and wishes. This means beginning the discussion early on in disease diagnosis with family and patient alike while the patient is still able to make informed consent and express his or her wishes. Once again, availing of the services of a social worker, counselor or spiritual leader can help ease the discussion process.
The other important thing is to discuss exactly what is meant by hospice and the expectations of all involved. For instance, depending on agency and to some degree the insurance provider patients may only be admitted if have terminal illness that will cease within a week, others a few months while some even provided care for years. Secondly, just as the requirements change from facility to facility for admission so do the locations where services can be provided such as hospital, nursing home, or home. My grandmother had hospice care at my home for the last 6 months which made it more comfortable for her, eliminated any guilt of placing grandma under hospice care, yet provided the medical support and palliative care she needed. In e she had he added benefit that I could tend to any immediate life threading infections and such while this may not be the case for some hospice facilities or agencies which only focus on pain and feeding. Others even allow patients to still visit their providers or vice versa allow physicians to visit them at home or at nursing home.
Finally, when determining who and where to use as end of life provider research to see if the staff are acquainted with a patients cultural needs. My family and I were lucky to find a hospice nurse which was Spanish speaking which made the care much more comfortable and eliminated my concerns regarding my grandmas ability to communicate any discomforts or problems to staff in my absence.
In the end making the tough choices of caring for a loved one until the very end depends and starts with an open communication between all parties involved patient, family and health are provider(s). Typically, I would schedule a separate office visit to discuss these issues specifically making sure we all had a clear goal in mind followed by contacting appropriate services to carry out patients and family wishes.
Discuss the wishes for end of life care through out the disease progression to ensure that the patients wishes are being carried out. Plus, by starting the conversation early you can avoid some of the heartache and guilt that usually comes about as our loved ones are nearing the end of their lives.
Remember end of life choices should NOT be made at the end of our life….
@Copy right 2018
All rights reserved by Maria De Leon MD
Importance of sleep in dealing with both motor & non-motor symptoms: By Dr. De Leon
“The future is shaped by our dreams so what are you waiting for and go to bed… START DREAMING!”
We have known for years that sleep is essential for our brains to function adequately. We also know that people with Parkinson’s have a very disruptive sleep wake cycle for many reasons, the primary being a disruption in sleep wake cycle which is mediated by serotonin. Many of you like me sleep only a few hours every 48-72 hours. This way of living is not only detrimental to our physical, emotional, and mental health; but actually as I have recently concluded, poor sleep architecture is one of the main if NOT the MAIN reason why we as individulas with chronic illness like PD feel so poorly. Perhaps even contributing to our eventual demise.
First, sleep is a way for our brains to encoding information into long term storage as well as discard the waste accumulated. This process needs to be done routinely otherwise trash accumulates and eventually can take over impeding the brains normal flow. this is a kin to not washing dishes day after day letting them accumulate in the sink and kitchen area, pretty soon you will run out of storage space, deal with toxic odors, over growing mold/bacteria, impede the flow of your cooking area and have no dishes left to cook or eat with. the constant tidying up keeps things not only neat but flowing and functioning at maximum capacity, likewise our brains.
Second, during sleep we strengthen/ boost our body’s immune system. This is important information considering new theory of PD that disease begins with the gut possibly by over wrought harmful bacteria which then makes its way to the brain. weakened immune system from poor sleep could also explain why people with PD are more suseptible to even minor infections like the common cold. I should know, I had about 6 months of down time due to upper respiratory infections.
I certainly, have become much more sickly since diagnosed with PD.
Third, sleep problems especially chronic insomnia can lead to changes in mood such as depression along with increased anxiety as well as decreased coping mechanisms for dealing with stress leading to increase irritability.
Fourth, sleep deprivation also causes widespread pain in joints and muscles by increasing inflammation. the constant pain imposed on our sensory system causes a centralization of pain making our brains much more sensitive to even the slightest discomfort. After all the brain cannot distinguish between physical and emotional pain. interesting thing, I can always tell my body not had enough sleep/ rest if my joints hurt, have swelling in hands, and stiffness of joints and muscles. I can almost feel the inflammation and pain of dystonia melting away as I sleep – the throbbing, aching pain in my arm which occurs with repeated use slowly vanishes with sleep.
Intuitively, I suppose that by ensuring best sleep practices via various medications and life style changes my patients overall did not seem to progress or have as many non -motor symptoms. the funny part was that I had been suffering like many of you with sleep deprivation which always made all my other symptoms worse ’til it dawn on me; why am I not taking sleep aids I used to prescribe for my patients?
I began taking one of my most commonly prescribed medications for sleep – in my case Lunesta and voila not only did I sleep well without being groggy the next day but having a constant refreshing sleep has allowed me to improve my quality of life dramatically. Once again, I feel energized both mentally and physically.
I think that we need to focus more on trying to regulate our sleep by whatever means possible in order to improve our quality of life and protect our brains from slow deterioration.
Sleep meds I often used in my patients which worked well and caused little to no daytime sedation nor interfered with other PD meds or symptoms.
- Lunesta : (I like because it has multiple dosages 1mg, 2mg, and 3mg- plus does not typically cause sleep walking or other such bizarre behaviors like Ambien. Plus it does not build tolerance quickly safe to use on a daily basis).
- Sonata: also very mild- much milder than Lunesta so I preferred to use in elderly patients.
- Restoril
- halcion
- remeron ( which has added benefit of helping with tremors)
- doxepin
- elavil ( not goo din elderly because can worsen low blood pressure and memory loss, on the other hand it can help depression if present while aiding sleep)
- melatonin ( otc)
- klonopin ( great for tremors and dystonia but can cause short term memory loss if take chronically)
if you are still struggling with sleep issues talk to your physician today.
Pleasanr dreams everyone!
@copyright2018
all rights reserved by Maria De Leon MD
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