April 24, 2020 at 9:37 am #18508
I am creating this post to see if anyone can offer any advice or share any similar experience with regards to what my mother is currently going through.
She was diagnosed with PD in June 2017 although signs of it were present (hands/arms shaking) quite a while before.
Her history with PD is as follows:
1. June 2017 diagnosed with Parkinsons
2. Consultant prescribed Rasagaline (with Madopar/Sinemet to follow later)
3. 2017- April 2019 continued as per 2
4. April 2019-June 2019 started Madopar 50/12.5Mg no benefit (consultant queried Parkinsons diagnosis) some side effects discontinued Madopar
5. July 2019 CT scan all clear no abnormalities
6. August 2019 anxiety becomes a problem commence meds (Pregabalin)
7. December 2019 anxiety worse Pregabalin increased 100Mg x 3 times/day.
8. December 2019 Dat scan requested ,anxiety much worse . Madopar 50/12.5Mg restarted. x 3 doses per day
9. January 2020 Dat scan ,severe dopamine deficit Parkinsons confirmed. Madopar increased 100/25Mg x 4 doses per day
10. February 2020 Madopar increased 150/37.5Mg x 4 doses/day
11. March 2020 Anxiety very bad Pregabalin continues as per 7 no apparent improvement
It was around June last year that all of the family was with her (myself, wife and children) and she at that point was not too bad. We actually live in Spain so I/we dont see that much of her unfortunately. For some months now she hasn´t really wanted visitors at all. My father lives with her in the UK.
Since last June however she seems to have gone down hill quite quickly and as mentioned above in January this year her DAT Scan showed severe dopamine deficiency. She mainly had the DAT scan as the Madopar did not seem to be helping her much and follwing the DAT scan the dosage was increased. She is now on a dosage of 150/37.5Mg x 4 doses/day.
She is also suffering with quite bad anxiety for which she is taking Pregabalin.
Unfortunately the Pregabalin does not seem to be decreasing her anxiety much and the Madopar only seems to work for an hour or so although she only has been taking the current dosage since February.
The thing that causes alot of anxiety and seems to stress her the most is the shaking which she has on both sides of her body. As I understand stress and anxiety can worsen the tremor so its a bit catch 22.
It seems that the anxiety is really affecting her at the moment perhaps as much as the PD with regards to her general state and quality of life.
So….I am wondering if others have had a similar experience and if anyone can offer any advice.
Thanks in advance for any comments and I hope you are all managing to take care of yourselves and stay safe in the current situation that we all find ourselves.
April 28, 2020 at 3:29 pm #18521Phil GattisParticipant
I’m a person with PD. I’m blessed to have my wife as my care partner. My PD is in early stages yet, and my neurologist and my primary doctor have treated my wife as an important team member from the start. Sometimes, it’s no more than a squeeze of my hand or an arm around the shoulder. She hears my watch beeping before I do, and reminds me it’s time for my med’s. She has been with me on every appointment, and we discuss every change or sign of progression. So we’re on a good foundation for what the future brings.
With you in Spain and your mother in the UK, I really don’t know how to advise. Your mother needs a care partner by her side, and I hope it’s not too late for someone to take on that role. Is your father being a care partner for her?
And it’s really the neurologist and the doctor together that need to advise on meds and dosage.
Patience is key. PD is something that will go on changing, as you’ve already experienced, and change is liable to be hard for your mother.
I don’t want to sound judgmental, but this is really from my heart. We’re wishing you and your family all the best as you search for solutions,
April 28, 2020 at 3:41 pm #18522Jean MellanoParticipant
it sounds as though your Mom is having a tough time. I am sorry for her struggles. You are a good son, trying to do the best for your Mom and I am sure she must take comfort in that. You didnt say how old she is or what her mobility is like, but, I have found exercise to be the BEST thing for Parkinson’s and more and more doctors are stressing this. Rock Steady Boxing is the best thing to ever happen to me and many others with PD. I have seen people come in with a walker and extreme lack of mobility on their own, and after a few months of classes 2x/week, they were able to forego their walker. The classes are for people with PD only and all levels of ability. there are a few in UK, Glasgow, Widnes and Wirral. here is a link: https://rocksteadyboxing.org/find-a-class/#go_here
Dance for PD is also an excellent program and they have online classes that can be taken: https://danceforparkinsons.org
I don’t know anything about Madopar or Pregabalin so I cannot comment on them. One thing for sure, PD manifests itself differently in everyone, both in terms of rate of progression and what therapies will work or not work.
I am not a health professional so I can only speak from my experiences. Bottom line, I believe movement and exercise are the best things to combat stress, anxiety, PD symptoms and PD progression. I do take carbidopa/levodopa and selegeline so that I can exercise. I wish you luck and hope for the best for your Mom.
April 28, 2020 at 3:57 pm #18525Jean MellanoParticipant
Steve, I did a little research on Madopar. Apparently that is a brand name for benserazide/levodopa. It seems in Europe, benserazide is used while carbidopa is used in the USA with levodopa . The function of both benserazide and carbidopa is the same; helps to prevent nausea caused by premature conversion of levodopa to dopamine outside the brain. I have found with this disease, that one must be proactive (the caregiver and person with PD) and must educate themselves. I have found a book, The New Parkinson’s Disease Treatment Book (2015 edition) by Dr. Eric Ahlskog to be a great reference book
April 28, 2020 at 11:21 pm #18528Marlene DonnellyParticipant
I’m sorry your mom is having such a rough time. I was diagnosed in Jan. 2011, and the summer of 2013 was absolutely my worst time, so I hope my response will provide some encouragement. I see that your mom is on anti-anxiety meds (so am I), but I don’t see an anti-depressant in your information. I started taking the lowest dosage of Venlafaxine XR capsules during that summer of 2013, and that was the first step to getting my life back. It does take something like six weeks to be effective, but for me it was totally worth it.
The next step, and on this I totally agree with Jean, was to get involved in exercise classes that my local hospital offers. I started with T’ai Chi, then added Beginner’s Yoga, and then added an exercise class. These classes are for those of us over 65, and most of us in fact have some condition which may well call for a modification of some of the activities, which is considered fine. I have been doing these three classes for years (Right now, of course, we are not having classes because of Covid-19, but some of the classes are starting to be reactivated with the help of Zoom so we can follow these online while we are at home.), and they have given me my life back! I never would have expected, at 73, to be going to classes like these, but they are so much fun, I have met so many people who have become friends, and I have regained balance, flexibility, and stamina.
I do also follow many PD support programs and groups online, and one thing I read recently was that there seems to be little correlation to the amount of tremor one has and to the quality of life, but that there is a huge correlation to loneliness and quality of life with PD. I certainly believe this is true. Your mom may not be receptive to going to a class like this, but have your dad check out what is available and then gently suggest that she tries one. Libraries as well as hospitals by me offer inexpensive programs like this, and though I have not been able to find one of the programs that are specifically for those with PD, for me that has not been a problem.
I do deal with anxiety fairly often, so I always have my anti-anxiety meds with me, but I find that when I am out and having a good time with my friends I hardly ever need them at that time.
I remember how I was in the summer of 2013, and that person did not believe that a “normal” kind of life would ever be possible again. Since then, my husband and I have traveled around the US as well as taking some international trips. For me life is good – sometimes a bit challenging, but an adventure that I am happy to take. I wish that for your mom!
April 29, 2020 at 7:54 am #18529Russ HudsonParticipant
Butyric acid supplements, have her try them. They worked for me in reversing my PD. Anxiety is also gone.
April 29, 2020 at 11:25 am #18527LauraParticipant
Hi Steve, I’ve dealt with severe anxiety over the years, to the point calling 911 for EMS because it felt like a heart attack. At its worse was about 5 years ago, I was experiencing bad dyskinesia, with my neurologist we tried adjusting my meds by lowering the dosage to help with dyskinesia, which it did, but completely put me into extreme anxiety attacks, I was hyperventilating, trouble getting my breath and fast panting breathing.
“Anxiety is a common non-motor symptom of PD. It is important to note that anxiety is not simply a reaction to the diagnosis of Parkinson’s, but is instead a part of the disease itself, caused by changes in the brain chemistry of the brain”, from this article about PD and anxiety, https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Anxiety, so lowering my meds too much made the anxiety worse, my doctor put me on Lexapro antidepressant, which greatly helped.
So I’m wondering if possibly your mother needs to change the dose of her meds, ask the doctor about an antidepressant, or trying another type of med, like Rytary, which is a time release capsule. I haven’t had a panic attack since being put on Lexapro, it really helped me out. I know how bad it feels to be under the grip of anxiety, I feel for your mother, it’s like going out of your mind, but I think she can overcome this with the right PD med and antidepressant, she may have to try a few different options till she gets the help she needs. There is also the Neupro patch, which is a transdermal med applied once a day, working all day. I hope my experience helps in some way, but most important, don’t give up till she gets the help she nneed.
April 30, 2020 at 4:08 pm #18541STEVEN OPPENParticipant
Please allow me to add my 2 centavos. As others have mentioned, I think someone from your family has to work with your mother’s neurologist to find the best PD medicine and the correct dosage of this medicine. It is difficult for some of your compatriots in the US to translate their experiences to your mother’s location. One or more of your respondents have mentioned Rytary. For what it is worth, the drug has been a godsend for me. It is a time-release version of carbidopa/levodopa and I find that it can last some time for 4-5 hours. There are a number of capsule strengths, and it took me some time to find the right dosage. As with many PD meds, you and your Mom’s neurologist have to be flexible, willing to adjust the dosage. The major drawback of Rytary is its cost. I am fortunate. I have a great health plan, and I do not pay for Rytary at all. The “list” price that I see on my drug packages equates to an annual cost of $15,000.
As to her anxiety, some of the drugs being mentioned are quite potent, and I have not had too much success with most of them. The SSRI’s (Zoloft, Lexipro, et.al.) were particularly harmful to me, driving me to think some terrible thoughts about my continued existence. Some people have had success with these drugs. I agree with others that adding physical exercise and mentally relaxing pursuits (tai chi, meditation) may be helpful. If it is decided to stop the strong psychotherapeutic drug, it must be done slowly.
One other thing. Have you ever looked at DBS (deep brain stimulation) as a treatment for her tremors? This technique is admittedly invasive and will make you cringe when you first hear the details of the technique. BUT, it works. There are neurosurgeons in the US who have become experts at using this procedure, and I imagine that the UK probably has them also. There is another treatment therapy that I would research if I were you. Go to sonimodul.ch . A researcher/doctor in Switzerland has been doing some amazing things with MRI guided ultrasound waves aimed at the most affected areas of the brain. This technique was invented in Israel, and the Swiss institute has been using it for some time. It’s called Exablate Neuro. My neurologist has urged me to wait a while before pursuing treatment because I do not suffer from tremors. The technique’s track record with non-tremor aspects of PD is not as developed.
Hope you are able to help your mother improve.
April 30, 2020 at 9:59 pm #18547Argya BayuajiParticipant
Hello Mr. Steve
Permission to share about my experience with Parkinson’s Disease, I was diagnosed with Parkinson’s age of 20 years. During my time with Parkinson’s Disease, I also felt that some drugs made non-motor symptoms appear. Some non-motor symptoms are anxiety and depression. I do not really know whether this is indeed a reaction from chemicals in the brain due to Parkinson’s Disease or there are some drugs that can cause non-motor symptoms. For my non-motor symptoms that I convey to the neurologist, my neurologist said that it can indeed trigger anxiety, stress, and several other non-motor symptoms. Then, my neurologist gave me some medicines for non-motor symptoms, if in Indonesia I was given Setraline, and Resperidon. My non-motor symptoms, I also try to reduce it by walking on the porch, reading books, interacting with friends, humor and so on. For me personally the symptoms can be controlled because the treatment of Parkinson’s Disease requires comprehensive treatment.
Hopefully the current situation improves soon and all of you friends can move normally and as usual. Stay Universe and be positive
May 1, 2020 at 12:09 pm #18550
Hi and thanks very much to all of you for taking the time to reply with your thoughts, advice and best wishes. It is very much appreciated.
@Phil, my mum does have my dad with her who is doing a great job of looing after her and luckily is in good shape so has no problems in that respect.
I agree re the neurologist and doctor being the ones who need to advise re the meds but unfortunately, she still, after 6 months or so of being on various medications does not seem to be improving with the anxiety being a big part of the problem it seems.
@Jean – Thanks for your kind words. Re my mum’s mobility it’s not great as she also has issues with her knees and had a partial knee replacement a year or two back which was semi-successful so that doesn’t help with the mobility. She is 72.
The Rock Steady Boxing looks like fun. I fancy it myself!!! Maybe it would do my mum some good to punch out some of her frustration 🙂 She currently uses an exercise bike but not as often as she probably should.
I will pass that suggestion and the Dance for PD suggestion on to my parents. The only thing re that type of activity at the moment (apart from Covid-19) is that she does not feel well enough to go out really or even have visitors.
Thanks also for the book reference. I will look to get a copy of that.
@Marlene – Thanks for all of your advice and insight too. Following your post, I mentioned the anti-depressant option to my father (who I speak to more than my mother). I’m pretty sure she is not on any at the moment, so it is worth looking in to. It seems that the medication for anxiety is not working.
Also totally agree are the exercise and classes which in my opinion are a great way of getting exercise as they are more enjoyable and motivating than just trying to exercise on your own. The hurdle here will be to get my mum to get involved.
It’s great to hear too that you have managed to improve your quality of life significantly since 2013. I hope you continue to enjoy life and that we all get to travel again in the not too distant future.
@Russ – Thanks a lot for the suggestion. Certainly worth looking into.
@Laura – Thanks for sharing your experience. It also looks to be similar to my mothers in various ways. They have been and are trying various combinations of meds, some of which seem to make her feel worse it seems and she therefore is tempted to give up on them after a short while but as Phil mentioned above I think she needs to be more patient with some.
When you mention “it’s like going out of your mind”, that is certainly a feeling that I think she is suffering from.
I see you again mention anti-depressants, so this looks like it is definitely worth investigating, as are your other suggestions.
My dad mentioned that a couple of weeks ago she seemed to go catatonic (wasn’t moving, just staring into space) for a long period of time one morning which the doctors put down to a severe panic attack so again looks to be similar to what you and others are describing.
Thanks again, and we won´t give up 🙂
@Steve – Again, many thanks for your insights and advice. All of this is certainly going to give my father and I something to think about and explore.
The time release option sounds interesting (Rytary). It seems that the PD drug that my mother is currently on (Madopar) works for her for about 90 minutes and then she has a bad 2 hours or so until the next dose so that upsets her too as she knows she’s only going to feel better for a short period of time. I think she takes a slow-release version of the drug at night before she goes to bed but basically does not seem to get that much relief from the PD symptoms and has to take sleeping pills otherwise the shaking keeps her awake.
Re the DBS and focused ultrasound, we are aware of those procedures and will probably look into them further as the Covid-19 situation improves. The shaking is a very big problem for my mother and one of the things which seems to cause a lot of her anxiety.
@Argya – Thanks for sharing your experience. It seems that the balance of the correct drugs is the key as the fight is against both the PD and anxiety/depression and at the same time It does seem that my mum needs to try and persist with some form of exercise and more interaction with other people. Both my father and I do notice that she perks up when we have a skype conversation and gets to speak a little with her grandchildren here in Spain but she does not seem to really want to interact with others at the moment.
I want to thank you all once again for your kind input and advice. I don’t interact too much on-line (even though I´m in IT) but this has been an amazingly positive experience thanks to your willingness to share your own experiences, knowledge and time.
I certainly think that the information that you have shared provides us with some interesting areas to follow up on.
I wish you all the best for the future and hope you are all managing to keep safe through these difficult times.
I will be sure to let you know how my mother gets on.
May 5, 2020 at 5:32 pm #18562JoelParticipant
My uncle’s situation is quite different from your Mom’s — he has been developmentally disabled since age 5 due to an anesthesia error, during a childhood surgery, he has lived with PD for 18 years, and his PD is now accompanied by full-blown PD-related dementia — so it is entirely possible what I post here will be utterly irrelevant for you. I’m going to post it anyway, though, because of the surprising help he’s gotten with anxiety the past few months.
Until about a year ago, his symptoms tracked with the ebb and flow of his Rytary (and before that, Stalevo) dosages. In the past year, however, it has become much more complicated to track his symptoms; they are a mix of purely physical and largely psychological. He tenses up, gets obsessive about being taken for a car ride, starts shaking, and often spends the rest of the day severely ‘off’ and unresponsive to subsequent Rytary doses. Passive relaxation aids (guiding his breathing, heavy blanket, heating pad, soft music, etc.) help (very) occasionally, but in general he does not have the awareness or concentration to use active relaxation methods.
We readanecdotal accounts that many PD patients were responding well to TouchPoints, wristwatch-like gadgets that create alternating vibrations on each wrist in a relaxing rhythm. It was a one-time purchase, would not affect any pharmacological balances, and seemed to address the psychological arousal we thought we were seeing, so we bought and tried them.
They’ve been shockingly effective. If the caregiver recognizes the early stages of anxiety and puts them on his wrists, he avoids the ‘off’ periods ~85% of the time. Occasionally, maybe a third of the time, they’ll even pull him out of a crash (our term for his severe off periods) that is already underway.
I wouldn’t bother posting, given how different the context of his symptoms is from your Mom’s, but anxiety being front and center of your post makes me think it is worth sharing. If you want to look into it, searching “Touchpoints for Parkinson’s” ought to work.
May 7, 2020 at 3:19 pm #18568
Thanks for sharing yours and your uncle’s experience. I have taken a look at the TouchPoints and it does look interesting. Anything that might help is certainly worth a try so we will probably be purchasing some.
All the best,
August 26, 2020 at 2:54 pm #19223JoelParticipant
Since I just mentioned TouchPoints tangentially in another thread, I thought I ought to update my uncle’s experience (see above) for anyone looking into them.
They are now a necessary part of minimizing his suffering, if anything even more effective than 85% during the day. (What has probably happened is that we have learned to recognize the early signs of low-dopamine anxiety faster and are getting them on him earlier.)
We have also bought a second pair, TouchPoints for Sleep—same mechanism, but in softer wristband containers instead of watch bands, and they shut off automatically after 30 min). These are less effective than the daytime TouchPoints for Calm, but that is probably again due to the timing of getting them on him, and dementia-related sundowning is probably also a factor.
On the downside, they aren’t particularly well-manufactured. We’ve had to make two returns in the past three months. On the upside, the returns and replacements have been low-hassle, and their customer service is courteous and responsive. Having bought two pairs instead of one has been a great relief during the returns, and since the differences between them are minor, they are largely interchangeable no matter the time of day. I think they gave us a price break on the second pair, too.
If you are just trying them and don’t yet feel you need two pairs, get the TouchPoints for Sleep. They are fine during the day too: both versions normally work within 30 min, you can always restart the Sleep ones if needed longer, and the softer wristbands are fine when sleeping or awake (while the harder watch bands are really only for when awake).
August 28, 2020 at 4:38 pm #19244twokParticipant
What a wonderful son you are! I have tremors on one side only so far…I can’t imagine the frustration your mom feels when she tries to work with two shaking hands. You have had one recommendation for sertraline and I too like this/use this for depression. Recently my doctor prescribed gabapentin for arthritis and it worked well for anxiety too!
My psychiatrist advised he prescribes this for anxiety to his patients. There are side effects, of course, for me fatigue, but the remedy is well worth it.
Anxiety is a well known side effect of low dopamine in the brain and many many people complain of it especially when in the company of others. I don’t expect it to go away but I have had relief as described above…
Also ‘wearing off’ increases my psychological as well as physical symptoms…that is another problem to consider.
Best of luck
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