Gail Dons
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A number of years ago, a study was done that implied that 1mg/day of rasagiline(Azilect) slowed the progression of PD. Everyone was excited. Then a study was done with 2mg/day – and it did not show any slowing of disease progress. THat said, when I became a PwP, I wanted to take Azilect 1 mg – just ic case it really was a little neuroprotection. I didn’t notice a lot of effect, except I stopped stumbling so much and I was swinging my right hand a little when I walked without thinking about it. About 6 mos later, after significant resistance on my part, and great time and patience from my MDs, I added Sinemet 1 in AM and 1/2 5, 10 hrs later. 7 years later, I am stil on the Azilect, and my Sinemet dose is only 1 TID. I am still working actively in my profession (I am an obstetrician and gynecologic surgeon). I do not hide the fact that I have PD, but people say they would never know if I didn’t tell them (OK, so I do keep that somewhat twitchy R foot out of sight!)
Is it the Azilect? Or has God merely blessed me with a slow progression? Don’t know, but I am glad to stay on it for the ride! -
I can’t speak to economics, but you know there will be price gouging when someone is selling something that gives other people a “high”. It is exactly the same thing “big pharma” does. In reality, both only demonstrate one of the unfortunate qualities of human nature that we all share. Pharma isn’t the only bad guy – it’s in all of us.
For those who want a little more detail about the pharmacology of marijuana, this is a link to an excellent article. It tells what we know, and. what we don’t know. It discusses promising areas that marijuana might benefit, as well as potential adverse reactions.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736954/#!po=6.75676
A few morsels:
“Cannabis is a complex plant with over 400 chemical entities of which more than 60 of them are cannabinoid compounds, some of them with opposing effects” Great! Which of these does what? And different varieties of marijuana have different amounts of each…and each plant within a variety has its own unique profile. Using plant sources is not going to work for consistency. When we identify the helpful cannabinoids, they will have to be synthesized or extracted not just grown and harvested. You are right, Mary Beth, unless marijuana is legal for MEDICAL use, there will be no quality control. Because of this, as well as the extensive research needed to bring a safe, effective product to market, medical marijuana will be more expensive…and some people wi. Go to the less expensive plant sources – which as you can see from my comments below, is not a safe choice. Legalizing marijuana for recreational use will make this dangerous choice more attractive.
“CB1Rs (one type of cannabis receptor) are found at the terminals of central and peripheral neurons, where they mostly mediate inhibitory action on ongoing release of a number of excitatory and inhibitory dopaminergic, gamma-aminobutyric acid (GABA), glutamatergic, serotoninergic, noradrenalin and acetylcholine neurotransmitter systems. Because of the involvement of these systems they affect functions such as cognition, memory, motor movements and pain perception. Interesting – I wouldn’t mind if it inhibited my inhibitory dopamine transporter system, but leave my excitatory dopamine system alone! Will this interact positively or negatively with my PD meds? We don’t know…
“The involvement of the particular neural regions and the neurotransmitter systems here is significant due to the fact that the very same brain areas and neurotransmitter systems are also implicated in psychoses, particularly in schizophrenia . Furthermore those who are at ultra high risk for psychosis have been reported to be more sensitive to the psychotogenic effects of cannabis compared with users in the general population. A psychotic outcome is not the only diagnostic category which has been associated with cannabis use. Symptoms of depression and anxiety commonly coexist with cannabis use and lead to diagnostic dilemmas “ Y’all do know we PwPs are a whole lot likelier to get psychosis, depression, etc, right? Although some of the chemicals in marijuana have been shown to ease depression an anxiety, you have to isolate those out of the 400 first, or you could make yourself worse!
“Natural compounds of the cannabis plant are also referred to as phytocannabinoids of which d-9-THC is the main psychoactive ingredient and has been widely researched both in animals and humans. It characteristically produces, in a dose-dependent manner, hypoactivity, hypothermia, spatial and verbal short-term memory impairment. However, the second major compound, CBD, does not affect locomotor activity, body temperature or memory on its own. However, higher doses of CBD can potentiate the lower doses of d-9-THC by enhancing the level of CB1R expression in the hippocampus and hypothalamus.” Oh great – the 2 dominant cannabinoids not only oppose each other, but the good one makes the bad one work better!. The scary thing, if you use marijuana, is, “d-9-THC was found to be …significantly higher than recorded 10 years previously. However, the CBD content was found to be extremely low in more recent times. These findings suggest that current trends for preferring higher THC content variants carry significant health risks, particularly to those who are susceptible to its harmful effects” so, the marijuana of today has more of the bad hyoactivity, poor memory one, and less of the one that might be helpful…except that more of it might make the effects of the bad one worse! At what dose? And remember all of those little plants are different, so you might get one dose that’s really stronger than your last dose.
There are a lot of moving parts here! Incorrectly balanced, they can cause serious harm. Long term mental effects might actually be worse than short term “it helps me right now” benefits. Are you willing to risk that? We need to know more! There may be some really good stuff there, but more research needs to be done (and you risk-takers can volunteer for the studies! )
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Your safest bet is a medication (pharmacological or naturopathic) that not only works, but has been produced so that you get the exact same bioactive component in each dose, and has been tested to see what the safe dose range is, and also evaluated for both long and short term side effects, as well as interactions with other medications.
Unfortunately, even medical grade marijuana isn’t there yet. The potency of each dose can be widely variable, so how can it be tested for safe dose range, much less for side effects and interaction with other medications? Depends on what kind of risk taker you are – would you be willing to pay for a medication that gives you no idea how much to take (and every dose could be a different, unknown strength), and you don’t know what it is or isn’t going to do or what kind of side effects you’ll experience each time you take that unknown dose, much less whether or not it will react with any of your other meds?
As for money, it does take money to run all of the studies that make a medicine safe and effective (although NOT $5000/month, I’ll bet!) Here in Chicago, they have just legalized marijuana, and the price is going up exponentially. They say it is because the permits are so expensive, but it is beginning to smack of “big pharma”…capitalism!
Marijuana may turn out to be the best thing since sliced bread, but Jeffrey is right: a lot of research needs to be done on efficacy, potency, side effects, and consistency in production (yes, it will take research money to do those studies – and clinical study volunteers!) until then, “caveat emptor”! -
Ohmygoodness! Just had so much fun doing a clinical trial this week. They are writing a grant to evaluate the use of exoskeletons in gait training. I got fitted for a very compact single joint exoskeleton and then walked around forward and backward, up stairs, etc, while the exoskeleton boosted my hip flexors so I lifted my knee higher and straightened it better with each step. After only 45 min training, I walked to the METRA without stumbling a single time! I can hardly wait to try out the 2-joint exo next week!
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Deborah is right, the Michael J Fox TrailFinders is a good place to look for clinical studies. Also, if you have any medical schools in your area, often on their website there will be a link to the various clinical trials they are running. You usually can search by disease or condition.
I am in Chicago, and both Northwestern and Shirley Ryan Ability Lab have educational symposiums on Parkinson’s disease. Very often at those events, there will be tables with papers describing the various research studies that are looking for volunteers. You could even place your name and contact information in a list so that other researchers can see if you qualify for their study and contact you. When I visit my MDS,I always ask her if there are any Studies that need volunteers.
Lastly, clinical trials.gov is the US National Library of Medicine database for clinical trials that are going on in this country. You can search by disease, and buy your location and how far you are willing to travel.
Even if you don’t seem to be trails running in your area, there are some trials where your participation is online only, so you do need to study descriptions carefully before you decide it’s not an option. There was this one where they actually used your computer’s camera to video you as you do various things. Another involved typing on your own computer while they measured strike time. Besides medication, studies are going on to see What are the most convenient ways evaluations can be done without always having to traipse to the doctors office! -
Hi Mary Beth and Jorge!
The most invasive things I’ve actually done (so far) have been sigmoidoscopy and a spinal tap. That’s nothing compared to the courageous individuals with advanced PD who are testing cerebral dopamine neurotrophic factor, and allowing them to inject it into their brains! Yet if (the big IF) this is effective, it is a possible disease modifying therapy. I noticed that all of those volunteers who completed Phase 1 have chosen to participate in the next phase. Wow…
Back on track, I have never had any long term adverse effects from any of these studies. (After the sigmoidoscopy I could even whistle out of either end! ?). I do think that the mental gymnastics involved in some of the testing has been beneficial to my own memory and cognitive skills. You know what they say, “if you don’t use it, you lose it!” I’ve found that I could actually do more than I thought I could, and that has encouraged me to reach even further. I think I am more anxious about a failing brain than a failing body. Because of what I’ve learned, I’ve downloaded the app Lumosity, which has many “games“ helpful in developing memory, executive function, neuroplasticity, and other skills that are really important to good brain function. They are sometimes frustrating, but as I’ve improved my scores, I think it really has helped! In one of the last research studies, my husband was also being tested as a normal volunteer. I found out later that I did even better than he did!
Jorge, it takes a long time to see results from many of these trials because often patients need to be followed for a long time to see if the observed effect persists or is a flash in the pan! I did find out that in one of my gut microbiome studies I had ended up getting the placebo “food”. Darn! I’d hoped for some relief from constipation! -
Hi Mary Beth!
The most invasive things I’ve actually done (so far) have been sigmoidoscopy and a spinal tap. That’s nothing compared to the courageous individuals with advanced PD who are testing cerebral dopamine neurotrophic factor, and allowing them to inject it into their brains! Yet if (the big IF) this is effective, it is a possible disease modifying therapy. I noticed that all of those volunteers who completed Phase 1 have chosen to participate in the next phase. Wow…
Back on track, I have never had any long term adverse effects from any of these studies. (after the sigmoidoscopy I could even whistle out of both ends! :-). I do think that the mental gymnastics involved in some of the testing has been beneficial to my own memory and cognitive skills. You know what they say, “if you don’t use it, you lose it!” I’ve found that I could actually do more than I thought I could, and that has encouraged me to reach even further. I think I am more anxious about a failing brain than a failing body. Because of what I’ve learned, I’ve downloaded the app Lumosity, which has many “games“ helpful in developing memory, executive function, neuroplasticity, and other skills that are really important to good brain function. They are sometimes frustrating, but as I’ve improved p, I think it really has helped! In one of the last research studies, my husband was also being tested as a normal volunteer. I found out later that I did even better than he did!
Jorge, it takes a long time to see results from many of these trials because often patients need to be followed for a long time to see if the observed effect persists or is a flash in the pan! I did find out that in one of my gut microbiome studies I had ended up getting the placebo “food”. Darn! I’d hoped for some relief from constipation! -
About participating in clinical trials: We want those new and better treatments. We want something that is neuroprotective. But to get these things, they have to be tried out on people – real people with Parkinson’s. If we don’t, who will? I have participated in quite a few trials – as many as I find for which I qualify. Not for the money, but because in the past some PwPs went out of their comfort zone and inconvenienced themselves by being a part of clinical trial, and now we have Sinemet…Azilect…amantidine…Apokyn…ropinirole…and the list goes on.
All trials are not medication trials. I’ve done some on exercise, eye movements, measurement of brain changes during activity, gut microbiome studies, genetics. There are a lot out there. Some of the testing is weird (try having an MRI with your head held still in a cage and you are playing a video game!) I’ve given samples of every liquid or solid my body produces, manipulated little washers and screws into patterned stacks, been videoed as I walked and talked, told stories and repeated numbers backward until they got so large that I couldn’t, had my eye movements recorded during different tasks, and taken every cognitive test known to man – I can probably give you 20 words ( in 1 minute) beginning with any letter of the alphabet, except maybe x or z. I have permanently memorized those 5 words in the MOCA test that they have you recall at the very end.(For those of who who freeze with those memory things, they are “face, velvet, church, Daisy, and red!)
Honestly, it has been a lot of fun, and I’ve learned to relax and not be embarrassed if I can’t remember which square that doggone Apple is hiding under! The research assistants are really sweet kids who explain things so well, and do everything they can to make the study easy and enjoyable. They’re glad to have you in their study! So please, think of participating in clinical trials not as a risky, scary thing, but as an adventure – and an immeasurable help to PwPs now and in the future!
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The spearmint gum helps me, too. So does a strong cinnamon gum.
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Joel, Jean’s article gave some good links to follow for information on photomodulation with NIr. And those have further links to track down. . Here see several to get you started:
Red and near infrared light treatment, helmet based
https://www.abc.net.au/news/2019-02-24/clinical-trials-for-wearing-led-helmets-treatment-parkinsons/10836906?pfmredir=smGreat review of NIr as therapy, poss neuroprotection for PD. Discusses intracranial vs extracranial treatment.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4707222/Discusses helmet construction, and also refers to more specific wavelegfsz
https://www.abc.net.au/news/2019-02-24/clinical-trials-for-wearing-led-helmets-treatment-parkinsons/10836906?pfmredir=sm -
<p style=”text-align: right;”>You’re absolutely right, Jean. Because Parkinson’s is such an individualized disease, there certainly is no harm in trying new things that are inexpensive and have a low possibility for side effects. However, I want to encourage people to carefully evaluate the type of information they are being given before jumping on <u>any</u> bandwagon. It is the only way to tell scams from valid therapy options, from those treatment possibilities that are too early to tell. It helps you set your expectations, and also keeps you from being taken for a ride by those who seem to have no compunction about making false or unsupported promises for their own monetary gain.</p>
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I followed most of the links y’all gave, as well as the links to other publications that were supplied in some of the articles. I did not see any significant scientific study supporting either light or sound as an agent for neuroprotection (the Holy Grail).There was that article which described a project that people intended to do, and the small size one where data and conclusions about improvement were based on study participient’s self-evaluation. And then there was the article that seemed to be based on the premise that much of Parkinsons was caused by toxins. There was also the one on mice neuroblastoma cells where the end point was “cell survival”, accompanied also by results on the movement of mitochondria in mice brains (these latter 2 were in vitro studies, which means the cells being studied were not even in the mice – they were in cell culture dishes) There was also the report of a case study….etc, etc.
Bottom line: All very interesting. Neither light nor sound Tx seem to have any significant side effects (unless you have trouble with modern rock music!) Some day one or both of then may show promise, but look at all of the other treatments and medications that have looked so promising in case studies and mice research, yet they didn’t stand up to the rigors of Phase 2 and Phase 3 testing. Don’t rush out and make/buy your infrared helmet this week – it’s not yet ready for Prime Time! -
They have a lot of bugs to work out o this before/if it is ready for use by the general population. One of the problems is that the transplanted cell get Parkinsons, too!
A really great read for up-to-date issues is the journal Movement Dsorders (you may have seen it on your doctor’s shelf – it is one of the biggies) You don’t need an account – just say you want to browse the free content (you don’t get access to every article, but it gives you enough to chew on) For example, in volume 34, #8, 2019 there is a great article on cell therapy “Why it doesnt work every time” I don’t have a link since I read it through the (free) MDS (not MDCP) app. However, here is the abstract:Abstract
The clinical experience with cell replacement therapy for advanced PD has yielded notable successes and failures. A recent autopsy case report of an individual that received implants of fetal dopamine neurons 16 years previously, but at no time experienced clinical benefit despite the best documented survival of grafted neurons and most extensive reinnervation of the striatum, raises sobering issues. With good reason, a great deal of effort in cell replacement science continues to focus on optimizing the cell source and implantation procedure. Here, we describe our preclinical studies in aged rats indicating that despite survival of large numbers of transplanted dopamine neurons and dense reinnervation of the striatum, synaptic connections between graft and host are markedly decreased and behavioral recovery is impaired. This leads us to the hypothesis that the variability in therapeutic response to dopamine neuron grafts may be less about the viability of transplanted neurons and more about the integrity of the aged, dopamine‐depleted striatum and its capacity for repair. Replacement of dopamine innervation only can be fully effective if the correct target is present. © 2019 The Authors. Movement Disorders published by Wiley Periodicals, Inc. on behalf of International Parkinson and Movement Disorder Society.
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Hi Ronald!
Jean is right that Sinemet does not stop disease progression. So far, nothing (except maybe exercise) does that. So glad your mom has progressed slowly! Last year, I began having dystonia-like neck contractions that woke me up at 0530 almost every day. My MDS started me on a bedtime dose of Sinemet CR, and it took care of the problem.
Robert is also correct to remind us that everyone has their own particular version of Parkinsons. And the good news is that Sinemet CR is not the only product available for “off” episodes! There are several products, some very new, with different delivery systems (nasal sprays, anyone?) So, please talk to your mother’s neurologist or MDS. He/she can then look at your moms medical history, and discuss the options. You may have to try several things, as there can be side effects since each person responds to medications slightly differently. Keep at it – chances are good that your mom can get some help for this! -
I sing in the church choir. During the 6+ years since my diagnosis, my voice has become lower – an alto for many years, I can now easily sing with the tenors – and sometimes even with the bass! The really cool thing is that now I even have a little vibrato! Singing is a good exercise for breathing and voice stamina – and gives one a constructive outlet in which to be LOUD!
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Oh, and I forgot to say that we can laugh together over some of our crazy experiences. Also, Parkinsons has its own “inside jokes”!
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I joined the forum because I did not want to be alone. It is good to hear from PwPs everywhere: the variety of issues that plague us, the things that help us, and the things that make us feel better. We can encourage, inform, and commiserate. All over the world, we are in this together, and together we will be stronger, physically and mentally.
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Oh good, Jo S! They tell me humor is good for both body and spirit! No pill can do that!
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Don’t worry about the nuts, organic or otherwise – we already HAVE Parkinson’s! Our risk is 100%! Seriously, though, you have to take these small studies with a grain of salt. This was based on the recall of ~ 245 Greek Cypriots of how many servings of each food they eat a month. Right – have you taken one of those LONG diet surveys and tried to remember how many green beans you ate last month? Did you guess, or try to make it look like you were a more healthy eater? This was an interview style questionnaire, with the interviewer staring right at them while they tried to figure things out… It also didn’t account for the fact that diet content differs over a lifetime and the Parkinsons was acquired years before they took the survey. It is a small study and any substantial validation of their conclusions needs further large scale corroboration. Besides, any change of diet can’t undo our disease (wouldn’t THAT be awesome!)
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I have had serious problems with insomnia, both fractured sleep and getting little sleep. I also have sleep apnea, and need to sleep with a full face style mask. My sleep doctor, bless him, let me have a sample of a new mask that had just come out, which reduced my awakenings somewhat, but the getting to sleep and staying asleep was still a big problem. My doc referred me to a sleep psychologist(!) and I started CBT No, it is NOT cannabis – Cognitive Behavioral Therapy, It is currently the gold standard for insomnia treatment, and it really helped me. My sleep pattern is still fragile and gets destabilized by jet lag (I just arrived in Pakistan for a month and right now I’m listening to the 0530 mosque call to prayer because I’ve been awake since 0215. The +11 hrs is difficult!) But I know if I get back to the basic sleep titration I’ve been taught, I can get back on track. There are online CBT programs, but I knew I’d do better if I had someone to whom I was accountable. Plus, when I get off base, I can email him for help.
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I think Jean was stuttering…or do PwPs get email tremors, too. 😉
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I have 5 adult children ( and 9.5 grandchildren!) and I wanted them to know and not be afraid to ask questions, each in their own way. We were going to be all together for several days Christmas, but I didn’t want a “big reveal” to be a primary focus, or to blunt our holiday fun. So, about 2 weeks before Christmas, I sent them all an email, part of which was
”<span class=”s1″>Wild, wacky, and wonderful kids,</span>
<p class=”p1″><span class=”s1″>This past fall, I was diagnosed with Parkinson’s Disease. (Think Michael J Fox, but perhaps not so funny!) I don’t have many symptoms now, but of course the future is unpredictable. My physical capabilities may deteriorate significantly and, as it is a neuro-degenerative brain disorder,<span class=”Apple-converted-space”> </span>so may my mental function. I guess that is what concerns me the most, as Parkinson’s patients have a higher chance of dementia. So, I may become not only a physically, but also mentally more interesting/embarrassing mom in the future! </span></p>
<p class=”p1″><span class=”s1″>Right now, and hopefully for years to come, I intend to continue my plans to stay active and practice into my retirement. Our city has a nationally recognized Movement Dosorders program, and I have an appointment to start care there.</span></p>
<p class=”p1″><span class=”s1″>Needless to say, all of this has caused some stress. The idea of losing my independence, as well as my mental capabilities, kind of freaks me out. Yet God has been so gracious. When He says, “Do not be afraid,” He really means it.! To insist on retaining control of even these things when I say I am His is to miss my purpose in glorifying Him. I can truly say with the psalmist : </span></p>
<p class=”p1″><span class=”s1″>”My flesh and my heart may fail, but God is the strength of my heart </span></p>
<p class=”p1″><span class=”s1″><span class=”Apple-converted-space”> </span>and my portion<span class=”Apple-converted-space”> </span>forever.”</span></p>
<p class=”p1″><span class=”s1″>Psalms 73:26</span></p>
<p class=”p1″><span class=”s1″>Our chaos, His peace,</span></p>
<p class=”p1″><span class=”s1″>Mom“</span></p>
What a wonderful response I got! At some point in the following week, each one called and asked a few questions, reassuring me of their support through this journey. At Christmas, there were a few more questions, but nothing major. They could see that Mom was still Mom. As I’ve developed some dyskinesia, I’ve pointed this out so they can see the disease as it progresses. They feel free to talk about it and other future issues in a really supportive and positive way. My advice is to tell your family and close friends early in the game!-
Hi Jean!
How do I write and edit a response, then cut and paste it into the forum without all of that gobbledygook gook? Or does our server have dyskinesia as well ? 😉
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If your back pain is from not rolling your shoulders back, then some of these posture devices might be a helpful reminder. However if , like many PwP, your back pain is from your upper abs getting tight/rigid and pulling you into a forward tilt, then these devices won’t help. I had a terrible time with axial instability, hunching over and trying unsuccessfully to remember to stand up straight and getting back pain when I tried. I emailed my MDN (from Africa, no less!) and together we adjusted my meds and timing. WOW – I could stand up straight (except I needed to roll my shoulders back more!)