Hi my name is Tom and I’m a 38 year old musician and writer diagnosed last year with Parkinsons. I also have bipolar disorder. I have found the whole experience devastating, (I know it is for everyone but both strands of my career depend on manual dexterity) though I have found it has given me insight that I didn’t previously have. That’s a positive but it seems at the moment like a brutal trade-off! Due to the stress of the illness, and and an unbelievably frustrating time navigating doctors/specialists/bureaucracy (I’m in UK, and I seem to have fallen into a gap between psychiatry and neurology) I have been experiencing extreme anxiety which I’m sure is affecting my symptoms and I have been feeling detached and aggressive- I feel instinctively this is a lack of regulation in my mood, rather than caused by anything external (apart from feelings about the PD, which are obviously in the mix). I’ve suffered depression/highs in the past but never felt this level of stress or detachment- which those around me would describe as out of character. What I’m hoping is that somebody could share with me that they have had similar feelings, (not necessarily bipolar) but some kind of equilibrium came back or was found. I’m open-eyed as to the possibilities but could I please ask that you only share with me if you have a positive experience. Thank you in advance for any feedback. Tom
Bipolar/parkinsons : Hi my name is Tom and... - Cure Parkinson's
Bipolar/parkinsons
I am really sorry to hear that. This is the time for your family to support you. By taking good care you, they can help in significantly subsiding your problems. Similarly the doctor behavior and way of interaction makes a lot of difference. Choose a doctor who is not only good professionally, but also a good human being and caring. Do share your issues with someone closest to you, it will halve the problem
Good luck and pray for you
Tom, I'm 62 and I was devastated when I was diagnosed with PD last year. But after a month of stress and insomnia a had to accept the new situation and try to adapt to it. My symptoms improved a lot without any medication. Exercising looks to be the best remedy for now.
Good luck!
Thank you- ion_ion
I don't think it is available as a prescription yet but what you need to look into is ebselen. Ebselen is a seleno-organic compound originally developed for stroke but was never used. In addition to be a promising bipolar med it's other potential uses include PD, HIV, and it has antibacterial activity too.
Ebselen & bipolar:
clinicaltrials.gov/ct2/show...
ox.ac.uk/news/2015-12-08-hu...
Ebselen & PD:
ncbi.nlm.nih.gov/pubmed/110...
Ebselen & HIV:
ncbi.nlm.nih.gov/m/pubmed/2...
Ebselen & TB:
google.com/search?client=ms...
Thanks Silvestrov
It was an excellent idea your choice to post your story here. Join a group for aerobic exercise that meets often- to maybe lower anxiety.
When you say your writing is dependent upon dexterity, can I assume you mean using the keyboard on a computer? When my Parkinson’s rendered me no longer able to type or control the mouse, my communication and therefore connection to friends and family was greatly reduced leaving me pretty discouraged, but then I discovered voice recognition software and it gave me a new lease on life. I can do everything with my voice that I used to do with my hands. I can move the cursor across the screen and put it on a dot. It opens and closes browsers and webpages, scrolls, tabs, whatever. I use Dragon for $80.
Anxiety is a common among PWP. I used to be among the least anxious person I knew, but now I won’t fly, tend to avoid social events, sporting events, meetings, crowds, etc. Mindfulness for anxiety came highly recommended to me by healthcare professionals and friends. I just recently be began learning it so I am sorry to say I am not far enough along to have my own firsthand opinion, but here’s a good article. It gets mixed reviews for some things, but it seems to work for other things, like anxiety.
“…there wasn’t sufficient evidence in the scientific literature to say for sure that meditation had an effect on, say, sleep problems, substance abuse or inattentiveness.
Still, a few benefits did emerge. Subjects in several studies reported being less anxious, feeling less depressed and suffering through less physical pain than before they began a mindfulness-based stress reduction program, compared with participants who received no structured therapy. The effect wasn’t huge, but it was there.”
“A 2016 meta-analysis of 30 studies in the journal Brain and Cognition showed that mindfulness-based stress reduction techniques stimulated development in areas of the brain related to regulating attention and keeping perspective on a situation. It also found changes in the participants’ amygdalae indicative of an improved ability to regulate emotions.”
fivethirtyeight.com/feature...
I do believe there's a number of supplements/compounds that have an effect on anxiety for some people, perhaps like magnesium and others you can research.
The only other thing I can offer is to recommend meaningful aerobic exercise. I have found exercise to be a silver bullet. I’ve wrestled with depression on and off and found whenever I was running long distances five or six times a week, I wasn’t depressed.
I wish you the best.
Aerobic exercise!Thats what I said!
Thank you MB, this is incredibly helpful. I really appreciate you taking the trouble to communicate at such length, especially with reference to articles. I will ponder all the points you make and wish you all the best
I’m very interested in voice recognition software. Do you have a recommend site to go for information ?
The VA gave me a copy of Dragon. I did some research before I got this and it appears to be the best reviewed software. I'm very happy with it. I believe I have the upgraded version called Dragon Professional. The VA also provided me several hours of instruction, but there are a lot of tutorials and help screens that are very informative. Like any software program, to fully exploit it, you have to take the time to learn it. Typing with one finger and being virtually unable to control the mouse means, effectively, your computer is of no value to you. That would be worse than giving up driving. It has literally given me a new lease on life and I wish I would've used it while I was still working. I cannot recommend it highly enough if you're now having trouble with the keyboard.
Thank you very much. I need this .
I can identify with your struggle. I've gone through many phases since I first noticed symptoms 3.5 years ago, diagnosed 2.5 yrs but I knew from the start what it was as my dad had PD. I've struggled with depression and anxiety for 20 years or so (now 61) and I went through the deepest plunge ever while trying to come to terms with my new reality. I had suicidal ideation, which had never happened before, I wouldn't wish that on anyone. I went for a long period after the depression had partially lifted where I struggled with anxiety daily. I can tell you that I'm much better now, though my moods still go up and down as does my energy level. One thing I've learned is to recognize the moods as shifting and remember that equilibrium will return, because it always does. Here's what's helped:
1. Exercise -- without it I'm toast. I generally hike every other day for 1-1.5 hours (including a good 30 minutes uphill). On alternate days I go to the gym, get some intense cardio on the stairstepper or bike, lift weights, stretch. For a while I did Rock Steady Boxing which is a really good program in that it works your whole body, and it's a great group of people to be around. Exercise is NUMBER ONE, it will help A LOT.
2. Meds: I'm sure you have your own mix. Over the past 6 months I've been able to wean off some. I used lorazepam for a while, small dose, for anxiety. It helped a lot and now I don't need it. I had no problem stopping it.
3. Supplements: There's a lot of information on this site about supplements, totally worth reading. For anxiety L-Theanine worked well for me, but not the first brand I tried. My naturopath then suggested a brand called Xymogen, which worked much better. But you have to get it through a health care provider who has an account with them.
4. Friends and family -- find those who want to listen and share. I've reconnected with some old friends because they have wanted to be supportive. My relationship with my husband is closer and my daughter has grown up a lot in her relationship with me, and has said things like "you were always there for me, now it's my turn". There are silver linings.
5. Therapy -- if you can find the right therapist for you, it can be a godsend. There are so many feelings and experiences in having a condition like PD that it can feel like even those we're close to, can't really understand and/or we don't want to burden them. I've been lucky enough to find a therapist where I can bring my feelings and thoughts that I don't share anywhere else. The deep, really private part.
6. Believe that it can be better. It can, and it will get better.
7. Looking to the future, my challenge is to learn to have fun again. I was never particularly good at it, and I've kind of forgotten how. But fun, laughter, joy, love get the dopamine going. So it's a project.
I hope this is helpful. Please do not lose hope and come back here whenever you want support. It's a great group.
I feel for you, Tom. Hang in there.
I am 68, was diagnosed in September 2016. I feel I had symptoms of PD since late 2014. But two doctors diagnosed me as having anxiety issues and probably seasonal disorder, even said they did not suspect PD. I was given a prescription for Zoloft (I believe.). That had so many side effects, it was changed to Prozac. I did get some relief from that but not much. Dec 2016 we moved across the state, and my new doctor suspected PD on my first visit. I went to a neurologist who confirmed it. My point in all this is that anxiety is a huge part of PD for many people. Mine made me physically ill and totally fatigued to the point I could not function. Sinemet, and eventually Azilect, worked well for all of my symptoms, but the anxiety eventually took me to the emergency room. It takes time to get used to these drugs, and lots of tweaking to get the best combination. My doctor added Paxil and a number of other drugs. The anxiety and all other symptoms are under control. I feel better than I have in 10 years. Actually normal.
Exercise is at the head of my list for treatment, followed by diet, the correct regimen of drugs, a team of doctors who are aggressive in determining which symptoms are the disease, the drugs, or something unrelated. A neurologist and primary you are comfortable with are especially important. And remaining socially active is also. And let family and friends provide assistance when it is offered. Many don't understand what you are going through, but those who do are invaluable.
I hope something in this will help you. It can be a tough journey, but anxiety and other symptoms are controllable. If you are religious at all, your pastor priest, etc. can be well worth talking to.
Good Luck Tom
Thank you very much Shell; much appreciated. It's very heartening to hear the words 'actually normal'. Tom
Hi, Tom. I offer these notes not as advice but just what you have said - as sharing a positive experience. My good friend and business associate has strugggled with bipolar for many decades. He is NOT a Parkie, but over time and very recently has had much better results with his crippling swinging of emotions and anxiety through full-spectrum hemp oil tinctures. Watching his quest has been very instructive to me as my mom has Parkinson's and with her tremor her most distressing symptom is anxiety and mood. We have experimented with CBD oils and found that (because she REALLY doesn't like to feel high or in any way medicated) that a 10 to 1 formula very slowing moving toward 1-to-1 has been most beneficial to her to still anxiety. Hope this helps.
A friend has a son with bipolar who is benefiting greatly from taking fava flower tincture and also toothache plant tincture. Don't know if you can find these to try....they are easily grown, even in flower pots of you lack space. We play music too and it's hard when anything inhibits what we like to do best. May The Lord guide you to what will help most.
Tom,
I'm very sorry to hear of your difficulties with PD. You will find an online community of very helpful, very intelligent souls through Healthunlocked.com
I developed symptoms in 2009 when I began experiencing a painless, inexplicable limp. I was finally diagnosed in 2010 and tried the herbal therapy - mucuna pruriens rather than Sinamet and other PD drugs as I feared side effects. After several years of no abatement or improvement, i sought traditional drug therapies like Amantadine, Sinamet, etc and it has largely eliminated all symptoms until just recently. I have a slight tremor in one hand and that's it. Nonetheless, I can relate to your stresses about making a living. I was a freelance writer who can no longer write for very long, nor follow complex conversations that move too quickly.'
That said, I have found comfort and a kind of refuge in exercising, both outside and inside and meditation. It helps me feel I'm slowing, lessening the impact of PD on my life, my health. You're most likely aware of the proven impact that vigorous exercise has in slowing the progression. A good diet is so important too, though my sweet tooth gets the best of me too often.
I'm not a religious person so developing my spiritual side is something I'm working on. Last year, I went to meditate and seek healing from John of God in Brazil. It was a powerful experience, though I didn't get the medical miracle I was hoping for, it was an experience I'll always be grateful for. In fact, reminding myself of all that I do have has helped me enormously. Gratitude and trying to maintain a positive outlook is so important to me.
It does take work, but these things have helped me do more than just cope. I also have macular degeneration in one eye and restless legs. But things could be far worse, so yes, I count myself very fortunate.
There could be a breakthrough any time. ....
Best wishes that you find something that works for you. p.s. I'm about to start a subscription to a Buddhist newsmagazine, Lion's Roar. It might give some reassurance of a positive acceptance of the world as it is.
Thank you Jennifer
Since my diagnosis six years ago (but I exhibited significant symptoms for two years prior) I have made a concerted effort to deal with my particular assortment of PD symptoms plus bipolar, which has been well controlled for many years after some very difficult times In early adulthood. I am now 63 years old.
A crucial distinction made early on with the help of my psychiatrist made a huge difference: I was confusing the beginnings of a manic phase with anxiety, which I was experiencing due to serious work related stress. Occasional use of a small dose of Clonopin which he prescribed to relieve anxiety and help me sleep was very effective. The need for this was eliminated by removal of the stress, which was another key factor that has helped me deal with PD symptoms.
Like many on this forum, I feel that regular exercise is essential – – there are many different programs to deal with PD symptoms. I think the important thing is to be very committed to it after determining what seems to be best for you, based on professional advice and trying different options.
In general, I have found that stress management, regular exercise, and a positive attitude have enabled me to make the most of my physical abilities and maintain mental and emotional stability. And in my case, I have renewed, deepened and spend more and more time with spiritual and social aspects of my faith. Good luck!
Hi Tom. You have described several Pd symptoms, which many of us have. I would like to send you a copy of my book, free of charge. Please have a look at my profile and contact me. I am sure that I can possibly help you.
Thank you John, that is very kind, I will do.
This sucks - I know! My neurologist was being honest when he recently said, “PD is a pain in the ass!” (although it’s the one part of me that doesn’t hurt... anymore! Haha)
I’m also a full-time muso - performer/ conductor/ composer/ lecturer - but I’ve learnt, since my diagnosis in 2009 that there is LIFE at the seeming end of the tunnel. I’ve managed to get my head around the fact that I may not be able to to all things I could once do with relative ease, but and can still create and teach and in a more limited sense, conduct. But getting my mind around these things was the greatest challenge. I still have crappy days, but staying active and engaged. I have written two operas since 2009 - the one, on the life of Nelson Mandela, inspired ME! Don’t give up! Adapt - or die! Peter Louis van Dijk
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