After substantial tweaking of my drug cocktail, I have been able to achieve a state of calmness and quiet relief after each dose of my medication. Finally, I can get enough quality time to focus on the tasks that need to be done. It's a great feeling even if it lasts only for about 3 hours at a time.
Sounds great, right? One might think so. But it comes with a catch. If I eat anything, anything at all, what follows is a case of hit or miss. Either nothing happens or all hell breaks loose and I go from calm and serene to absolute misery and discomfort. So I have to decide. Should I go for the food and take a gamble. Or should I practice total abstinence and resign myself to one meal at night. It's a difficult choice to make.
Anyone else have this experience? What do you do or what will you do when and if you are faced with this choice?
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pdp.........Have dealt with exactly the same scenario and it's difficult between that great ON feeling and hunger.
I've had a few times over the years where feeling good wins out in a big way at the expense of nutrition. My worst time was 5 years ago in year 12 of 17 when my condition worsened . I lost 16 lbs in a 3 week period as I avoided protein to feel better and more frequent ON times.
Losing too much weight and muscle mass is not good. I will sacrifice some ON time if home, where discomfort is easier to handle. When I'm out socially, I'm careful of what & how much I eat, so I can get through the night and feel as human as possible. I usually enjoy myself even though I've worried a bit before the event what shaky, uncomfortable or calm me will be there. I'm known for spilling drinks on people when socializing, so I have cut back on red wine for more clear drinks-easier to clean the stain!
I do have some success and have mentioned this before of dissolving doses of levadopa (25/100 ir) + mucuna in 1-2 ounces of green tea/any liquid at meal times. It usually works faster than taking the pills normally and helps me sometimes with the protein- intestine issue. It is worth a try.
Be careful with only one meal as it's one of my few pillars of having a decent quality of life with the pd monster always present--
YOU MUST stay strong (eat), find a way to get decent sleep, push yourself to socialize some & exercise as much as possible.
Tonight I have dinner with high school 🏀 teammates I have not seen in 45+ years & the reunion tomorrow. Shaking already!!!
Thanks for sharing! I never thought (or are you?) of dissolving my CL pills! I do use powdered Mucuna when tremors come in between meds. It helps but not completely. I take 25/100mg CL every two hours and once a day I will need one every hour. Usually around 2pm. I drink a shake in the morning full of nutrients I dont get “not eating” throughout the day. I DO eat, but not big meals. Im grazer. It works for me. I want to lower my intake of CL. I stopped all other PD related drugs because of the side effects. Now I have heavy tremors during off periods. Also starting 100/100mg of CBD/THC to calm tremors down. I used to have anxiety and stress years ago and combatted it but now when I have something to do outside the house my tremors kick up and I feel anxious. I don’t want to take a pill (CL) every time I am having tremors. So I am going to treat it as if it “were” stress or anxiety
GigiOf8 . First, the "Stage Thing". My MDS didn't say or won't say and is hyper focused on treating my symptoms. I have not cared or dared to ask and I don't know what it is except to say that after 12 years with the disease I feel like I am not sure if I am in a good place. Sometimes I need a wheelchair and sometimes I can walk a mile, no problem. It all depends on the meds.
Now, for the meds. I now have the following :
Nourianz 40mg
Gocovri 274mg
Sinemet CR ( 50 -200) 1 at a time, 2X per day
Sinemet IR (10/100) 2 at a time, 4X per day,
Inbrija as needed, once or twice a day.
This is my regimen after a lot of permutations and combinations have been tried😫. So, the only thing that I have learned so far is that no matter which combination of the mix that I have tried, I have the best experience when I am fasting. Being diabetic, my wife feels like it is the greatest cure since sliced bread (for my diabetes), since I love food and have trouble controlling my urge to est🙄😂.
Maybe it's a good thing, but as eschneid pointed out, maintaining muscle mass is a challenge when going the way of fasting.
Hopefully this gives you a clearer picture of my dilemma.
Don’t sweat the stage issue. It just boils down to progression. There are 5 stages. I believe 4 is the falling stage. Like falling a lot. What are your symptoms when it’s bad??? Why are you in a wheelchair? If it’s dyskinesia that’s why I don’t take any other med.,I used to have a lot of dysk but now just when I overdose on sinement. Now I struggle with heavy tremors in my hands and legs. During my off periods. Trying holistic and spiritual modalities to thwart off underlying stress that may be disguising itself under the title of PD. So will treat it as stress to see if it works. So far the answer is no. I understand fatigue and moving but you HAVE TO! Build your muscle mass! Little by little daily. Find someone to force you to put a weight in your hand. On your ankles when you’re in your chair and lift!! Its life! Im talking to myself too! Challenge your brain and start learning something new but fun. Maybe the tambourine.? And maybe try some shakes? Further Food and It Works are companies that has great options for greens that include everything that we need plus the great stuff we dont know we need. I use almond milk and frozen organic berrie mix with it plus add cologne and a few other specific supplements. Then snack throughout the day on crackers and fresh fruits and veges. Make infused cucumber, lemon, strawberry or kiwi water. Juicing celery is great! Watch your protein in your shakes! Mine is not a protein shake. Get massages! They bring life to your muscles because it feeds them with ice GYN. Sounds like you are depleted of oxygen. You can try an ice plunge or cryotherapy. Anything that will bring oxygen to your system. Acupuncture is slower but works. Read about the circadian rhythms and your Shakira’s. We are made up of energy and our muscles and minds work together when full energy is achieved. I’m still a work in progress but can and know this is good. Check out Dr Gary Sharpes method. Its awesome. I’ve recently began moving with my tremors sort of speak. Like correlating movements in a musical sort of style. Using stretches throughout almost like a dance. Waving arms and stretching outward toes pointed. I’m on my back. Arms reach for the sky fingers and muscles stretching then like rain coming down your fingers sprinkle in your tremors down to the ground. Your body. Move what you feel. Love your body and help it through this difficult time.
Thanks for the great suggestions. I will try them. I do have great relief after starting on Gocovori two weeks ago. Much of my symptoms have been relieved, so I do have new hopes.
I do follow Dr. Gary Sharpe occasionally , but I haven't read him for a while. Time to do some reading, I guess.
Thanks for sharing! I never thought (or are you?) of dissolving my CL pills! I do use powdered Mucuna when tremors come in between meds. It helps but not completely. I take 25/100mg CL every two hours and once a day I will need one every hour. Usually around 2pm. I drink a shake in the morning full of nutrients I dont get “not eating” throughout the day. I DO eat, but not big meals. Im grazer. It works for me. I want to lower my intake of CL. I stopped all other PD related drugs because of the side effects. Now I have heavy tremors during off periods. Also starting 100/100mg of CBD/THC to calm tremors down. I used to have anxiety and stress years ago and combatted it but now when I have something to do outside the house my tremors kick up and I feel anxious. I don’t want to take a pill (CL) every time I am having tremors. So I am going to treat it as if it “were” stress or anxiety
J'en suis exactement là. J'ai commencé à souffrir de grosses diskynesies y a 4 ou 5 mois . Sur le conseil de mon neurologue j'ai baissé un peu mon traitement ( modopar et stalevo ) . Ca a été un peu mieux à condition de faire attention à les prendre à distance des repas ét prendre les protéines plutôt le soir ..Mais ça devient compliqué autant l'année dernière je pouvais être souple dans l'heure de prise des comprimés, cette année il faut que je sois beaucoup plus stricte sinon c'est la sentence immédiate je plonge .. Il y a 3 semaines je suis partie en cure thermale , Malgré les dose donc plus faibles j'ai eu une recrudescence des dyskinesie . J'ai compris pourquoi pendant ces 3 semaines je n'ai mangé que le matin et le soir à cause des horaires compliqués des soins de la cure , j en ai déduit que le traitement était donc beaucoup plus efficace et donc qu on était plus facilement sur dosé quand on ne mangeait pas et qu'on avait l estomac vide .C est effectivement insoluble quand on arrive à un certain stade de perte de neurones . Aujourd'hui hui j essaie de ne faire un repas protéine que ce soir ,et très léger ce midi .La solution semble être cela :
Here is the translation of your comments for the benefit of others :
I'm exactly at that point. I started experiencing severe dyskinesias 4 or 5 months ago. On my neurologist's advice, I slightly reduced my treatment (Modopar and Stalevo). It got a bit better, provided I took the medication away from meals and had proteins mostly in the evening. But it's becoming complicated; while last year I could be flexible with the timing of my pills, this year I have to be much stricter. Otherwise, the immediate consequence is that I crash. Three weeks ago, I went for a spa treatment, and despite the lower doses, my dyskinesia worsened. I understood why: during those three weeks, I only ate in the morning and evening because of the complicated treatment schedule at the spa. I deduced that the treatment was much more effective and that it was easier to overdose when not eating and having an empty stomach. Indeed, it's unsolvable when you reach a certain stage of neuron loss. Today, I'm trying to have a protein meal only in the evening and a very light lunch. This seems to be the solution.
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How much simemet are you taking once you have been diagonsed 5-6years and the honeymoon period is over 
Departing the Soul
Increasing levadopa/carbidopa
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