I have become a mess. Symptoms are increasing. I am at a stage where dizziness is perpetual, speech is completely garbled and functions are restricted. I am even dependent on my wife for washing me,
Neurologist has recommended 4 C/L 25/100 and 1 CR 125 and 1 CR 250 a day along with Amantadine and Ropinirole.
I am not able to bring myself to take Amantadine and Ropinirole because of the side effects. I have started taking C/L, GlyNAC and Niacin.
I am stuck in trying fast walking, B2, B1, B-Complex, GlyNAC, Melatonin, Niacin, OMAD, Ketosis, Exercise, Breathing, Yoga, Tai Chi and other therapies. What to do and which diet to follow?
Too much information has lead me to become paralyzed in my own mind it seems, and I don't know how to break the cycle
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JayPwP
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So sorry this is going on. I suggest not overloading yourself with too many therapies at once. Select those that seem most important and put the others on hold. Priority on relaxation.
Yes try 1 at a time and measure or note symptomatic improvement for a short period each. Then try another. It worked for me. I nailed it down c/L . I had to address my H-pylori 1st.
Igualmente, he tomado Amantadina, Pramipexol y Rasagilina y no he tenido efectos secundarios, también hago mucho ejercicio de pesas, equilibrio y banda eléctrica, gracias a Dios no tengo efectos que me limiten, ya voy para tres años con el padecimiento.
These drugs might be the lesser of two evils.Why not try one and see how it goes? You could then add or replace it with the second, depending on how it's gone.
I know it is not easy: I confront my spouse fears about every single topic, on a daily basis. But there comes a time on this path for the highly targeted pharmaceuticals.
Follow the advice of the many here who have had to go that route…you have nothing to fear but fear itself 🌺
B2, B1, B-Complex, GlyNAC, Melatonin, Niacin, OMAD, Ketosis, Exercise, Breathing, Yoga, Tai Chi and other therapies.
Incremental benefit at the absolute most (some probably do literally nothing besides take up time, money and mental/physical energy). Simply keeping track of this regimen would take up all of the energy i have?
Echoing CI - are you afraid of the medications your doctor has suggested due to personal experience or fear of what you've read/heard?
My husband has been taking Amantadine for at least 3 years, 2 a day. No discernible side effects, his dyskinesia was increasing before he took it so it really helped him. He also takes the Neupro patch a dopine agonist at low dose and the only side effect is a few red marks on his skin. He does take Madopar and Rasagaline at low doses and at the moment remains fairly stable.
I would try the drugs offered maybe one at a time so you know if any side effects occur and whether they are manageable. In my husbands case he needs a few weeks to see if they help him.
He has recently started taking 100 Madopar CR at night so he doesn’t start from zero meds in his system in the morning. This has lessened the dyskinesia after the drugs are taken in the morning and after breakfast and the transition to medication is more gentle.
He does take supplements and I notice some difference when I forget to do them or when we are away but the difference is small.
He uses his Redlight hat and likes the Cue1. We do notice the difference if he doesn’t use these.
the first thing to remember is that once started you will only be able to get off by gradual and unpleasant weaning so adjust to life dictated by drugs. I am on all the stuff you mention . Began in 2016 with Ropinirole XL stopped at daily 32mg. Added later cocareldopa 25/100 and 12.5/100 taken 3 x per day. Amantadine began 2 years ago at 100mg once per day but increased to 3 times recently with little improvement. Might try to reduce to 1 a day. Supplements much the same as yours. I follow an arduous exercise program. I will have to face a day of reckoning when there is nothing further to add. But your fear of side effects may be pessimistic. I am leading a fairly normal life punctuated by periods of lost stamina and energy which affect my gait, some minor things like drooling and speech inhibition. But I have not developed any obsessional behaviour save for increased need for precision. Stress makes me regress so is best avoided. The end message from me is that you sound to be in dire need of the help that some additional meds would provide. No cure is imminent. So you must balance the risk of adverse effects against the potential benefits remembering that we are all different. You decide when you let PD win. My choice was to try to delay the evil day. Good luck.
I’m so sorry that you are going through all of this. If you were my husband the first thing I’d suggest would be to eliminate the OMAD diet and cut right back on the supplements, just for a week or two to see what improves.
We’ve discovered that my husband can’t take melatonin any more - he’s up all night (4-6 times) to the bathroom. The point being, even supplements can upset your system.
And remember to breathe …dizziness can be from anxiety/stress.
Research shows that melatonin can have a somewhat beneficial effect on nocturia. However, there may be issues with dosage, interaction, and individual tolerance. At the often more than 10 supplements PWP take, there is so a significant risk that we may experience negative effects, and that too much of a good thing may actually worsen our condition.
Jay, I have nothing more to add medically than these fine folk have already offered. However I want to express my complete understanding of the indecision/fear/second guessing that can take hold. It is so difficult and I really feel for you as you describe what you are going through. You WILL figure it out so that you can regain more balance once again. I know in the midst of it it doesn't feel this way. You are in my thoughts and prayers.
JayPwP i feel your pain, i feel I am progressing rapidly, my speech is not good, I am drooling. swalloeing and balance issues, bradykinesia is worse, every movement I have to make is achore. i started 1 tab of amantadine a few weeks ago to help dydkinesia, so fsr, dyskinesia is gone snd no side effects. I did take ropinerole years ago, snddddddd I was so nauseous, I had to sttop it.
I’ve been on Ropinirole since 2019 1mg 3 x a day. My only issue has been sleepiness in the afternoon. I’m also on CL low dose. I’m like you and really do not like trying medications. I was on a higher dose before and we decreased it. I’m very sensitive to meds so we go slowly. One thing I’m bad with is wanting to quit too soon.
Just take your time and do only one thing at a time.
I hope you find some relief. I am 10 years in and lucky because I do not have side effects from l/c. I take 4 extended release 200/50 Levo/carb and with this I can live a half decent life. I take my last one right before I fall asleep which allows me to sleep. Everyone is so different with this disease and what they respond to depends on body processes so it is a journey. Good luck.
if I was you I would get rid of the ER doses and replace with IR spread over the day. I would ask for the 50/12.5 tablets and replication the current dose by taking 2 then slowly decrease each dose to see if that feels better or worse. You also might find taking a lower dose closer together would help.
My husband was completely disabled by the ER ones.
It sounds like your current symptoms are a reaction to anxiety. Try a very low dose of clonazapam, ie a tablet cut into 1/4 and spread over the day.
I have changed the bedtime dose of 250 CR to 125 IR + 125 CR. I don't take the afternoon 125 CR dose.
I plan to shift to Mucuna, in part or completely, if I can find a quality and trustworthy product. Vitacost seems to have Mucuna capsules, don't know if it's worth trying...
I am sorry you are going through this setback. Mucuna needs green tea to cross blood brain barrier. My HWP needs digestive enzymes at meals or his PD symptoms are stronger. He also has had improvement with smaller meals during the day and the largest meal in evening when he has less to do. His medicine (Rytary) seems to work better. He is on a low does 2mg of the Neupro patch it does help, he notices when he forgets to put it on.
There are so many complementary therapies for PD it can be overwhelming. We have taken a break for a bit and are adding supplements back slowly. Is your dizziness caused by orthostatic hypotension? Neuroinflammation is listed as a contributary factor in PD, a diet that lowers systemic inflammation would be beneficial. Perhaps that's why HWP needs digestive enzymes (gut inflammation is linked to PD too).
This is a link to an article about dizziness in PD. I hope it gives you some direction on how to seek treatment.
Sadly, there is no known medication that is capable of reversing PD symptoms, However!
I reversed my PD symptoms by accident. My wife was doing FAST WALKING to help her loose weight and, although I was not very overweight, I agreed to join her.
Within a year, my PD symptoms started to disappear and, after two years, they had completely disappeared.
I kept on doing the FAST WALKING until very recently when, at the age of 87 I developed another health problem and had to give up the fast walking.
Unfortunately, my PD symptoms started to return and I had tom walk with a walker, which I found very embarrassing but, my PD symptoms atre not getting worse and I am getting used to the walker and am going a lot faster now!
Jay, it is sad that these decisions paralyze you. There is nothing trivial about managing and treating the symptoms of Parkinson's. You have already received much advice, which seems valid and accurate. From reading your note, you are balancing/evaluating three different types of treatments: pharmaceutical drugs (carbidopa/Levodopa, ropinirole, etc.), supplements (vitamins, etc.), and lifestyle (exercise, nutrition, meditation, etc.). Think about them as three separate systems. The drugs could have an immediate impact on your symptoms; yes, they are powerful and have some side effects. Carefully consider adding the dopamine agonist and Amantadine. The comments here have all been provided, the good with the bad. The supplements, well, you either believe in them or not. I take too many supplements and am deciding now what has worked and otherwise done nothing (of course, I am a study of n = 1). Do not let them stress you out; their impact may be more internal and not noticeable. The third category, pick the exercise(s) you enjoy the most and would likely do 3-4 times per week. It is more important to know you are at least doing some regular exercise; worry more about the regularity of exercise over how high you get your heartbeat (at least in the immediate future). Do the exercise(s) that make you happy and support your quality of life. Paralysis from no action, not deciding) = stress. And we all know that stress worsens all our symptoms. Maybe your note has generated a lot of replies because your "paralyzing-decisions" are things that we all, on a very regular basis, must answer ourselves in managing Parkinson’s. Good luck with everything. Frank
Hi JayPwP I am a 62 year young PwP and was diagnosed in 1992 when I was 30 years young and I know you cannot take a B complex because B6 interferes with the absorbtion of Carbi/Levo and I always end up paralyzed. I do not know if you have taken the B complex because it seems to be on a list of many "must do's" but if you have then that could be a Big reason that your symptoms have increased, none of the Carbi/Levo is getting through.
Could be… try not taking for a few days and see if your symptoms improve.
I am not a doctor but I have 32 years experience with this dreadful disease, so I would try it. Just stop that B-Complex. Just one change at a time. That is how I figure things out.
One Thing at a time. One Day at a time. And eventually One moment at a time!
Most important is stretching, weight strengthening, and keep moving! Do not fear anything and do not give up!
I just wanted to let you know that you have been my hero since I have come here to HU. And I know you will follow your good instincts even in the face of all the challenging symptoms. And I will definitely want to hear all about your experience.
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Orthostatic hypotension
How i beat Parkinson's
