My hwp is feeling very depressed today. He's 58, dx 5 years ago and for last 6 months he started Modopar (50mg levodopa / 12.5mg benserazide) 1 caps 3 times a day (6am - 12- 6 pm) taken with 1 x ropinirole (12mg) at 6am. He also takes B1 500mg.
He's main problem is freezing - his left foot/leg which hasn't been helped at all by the meds. Normally he's very motivated and a fighter - cycling, walking, exercises ... but today he's ready to give up. He's very conscious of his foot drag and feels paralysed by it. He knows he's getting worse and nothing seems to help. He wants to double the dose of dopa so he would be at 3 x 100 / day (instead of 3 x 50 now). He can't be bothered to go back to see dr as dr doesn't seem to have much idea (despite his long career as a neurologist). He'll tell my hwp "you need to take xyz" and my husband will say "I ve heard about abc" so Dr will say "yeah good idea, abc it is". So,
1- do you think it's ok to double the dose, without returning to see the Dr seeing as it's quite a low dose anyway.
2- should he lower the ropinirole?
Thanks for any help as he's wuite desperate.
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Vik38
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My left leg drags too. I find the best cure is to actively address it. I listen to my wife, “ pickup your feet”. So I do even if it’s only temporarily.
When I go for a walk or to work. I say heel / toe to myself to correct my stride. The shoes need to be supportive.
He usually manages to "correct" it by concentrating or tapping his knee. But he doesn't seem to be able to find the connection. When you say supportive shoes, what type do you mean. I got him some "barefoot" ones but not sure how effective they are for picking that foot up.
No, do not double the dose. I was going thru a very stressful time last year & a "substitute" Dr told me to double my meds. I was only on 4 a day of the 25/100. Doubling caused me to need them at night & then I doubled the ones at night and ended up taking 14 - 16 per day. I was having a tremendous amount of dyskensia and ended up being in bed for 4 months. I have gradually made it back to 7 1/2 but it's been tough. If you can, find a movement disorder specialist. Your HwP may need to go on an antidepressant for awhile, until he can accept this disease. Acceptance is needed with a disease like this & then you can start trying to figure out what to do to help you feel better. Exercise and/or at least moving is one of the best ways to help him. Sitting & doing nothing will only make it worse. He's lucky to have you pulling for him.
I slowly worked up to Madopar 25/100, three tabs, four times a day at 7.00am, 1100 am, 3.00 pm and 7.00 pm. At this doe I get a reasonable response with no side effects. I am 230 lbs which might be relevant.
No other drugs and no supplements.
* ( Actually I am on Prolopa, which is the Canadian version of Madopar).
Thanks for your answer and sharing your awful experience. I've suggested he go to a psycologist to help with the acceptance but he refusespoint blank (I think I might go instead!) Other people on this forum have mentioned a movement disorder specialist but don't know where to find one - we're in France and there only seems to be neurologists.
My husbands leg(s) do not drag but just recently having a hard time with freezing. When he stands to walk takes a few seconds and going over thresholds takes a few seconds. If he rushes he may tumble forward. Saw a new neurologist today and he said to increase the carbidopa/levodopa by 1/2 tablet 3x daily. I suggest we start slowly and just do this at breakfast. He said ok. Told neurologist about the HB1 protocol, he never heard of it but will check into. However, he's not big on supplements because there isn't enough evidence. I said we'd be dead by the time there is enough evidence. The HB1 seemed to help hubby with being ridged, loosened him up a bit. He does not have any tremors.
Is it possible his B-1 dose is a smidge high? Many forum members have reported having to make a minor dose reduction after being fairly stable on HDT for months and a minor dose reduction after a complete stoppage of B-1 has helped some of them to get back on track. This issue typically pops up at the 6 to 18th month of B-1 use. Dr. C had a theory about why this happens, but some members have reported that they have resolved this dose adjusting issue by merely taking a day off every so often such as once per week or three times per month whenever they notice a mild symptom increase.
I don't think in his case that it's too much B1. In fact he's never been stable just progressively getting worse but very progressively. He'd resisted taking the levodopa until 6 months ago when he finally decided it was time. He'd expected wonders and unfortunately it was a flop - the honeymoon just never started! I think that's what really hit him hard. That's when I joined here, read about B1 etc.
Yes, I agree its possible the B1 needs to be adjusted. I did so last week. Only taking 1 at breakfast and 1 at lunch.
I like the idea of skipping a day. Will try that as well.
Saw his new neurologist this week. He never heard of the B1 protocol. Doesn't believe it supplements, etc. that aren't proven. Dr. adjusted the C/L meds by adding 1/2 tablet at breakfast time (actually he said take 3 more per day but we wanted to try slowly and he agreed).
Roy, hubby states he felt looser when taking the B1. A little more free in movement. He never had and doesn't have any tremors.
Glad we didn't go to 3 C/L tablets 3x daily. We started slowly by doing 2.5 tablets for breakfast - waited 4 days then added 2.5 tablets (an increase in .5 tablets) for lunch. Well, this didn't seem to work. He had trouble starting moving. During this time he was taking 2 B1 breakfast and lunch.
I adjusted meds to 2 B1 breakfast 2.5 C/L. Lunch is 1 B1 and 2 C/L. Dinner is 2 C/L. After 2 days this seems to be working. Not having trouble starting moving (walking) still hesitates going over thresholds. In past with the right adjustment of C/L and B1 the threshold issue decreases.
I am similar age and diagnosis as your husband. He is taking a very slow dose and I think he should increase it. I’m now taking 100mg 4 x per day. He probably should see neurologist but I doubt he’ll come to much harm if he experiments a bit. (My neurologist freaks out when I alter my doses so I just lie to him!).
I suggest he adds some magnesium before bed as that seems quite helpful all round.
In the US we don't have Madopar so the standard starting dose of Sinemet is 3xdaily 25/100 (25 carbidopa 100 levodopa), so with caution and warnings to check with your doctor, that is still a pretty low dose.
Hi i live in france too😊 I am dx 5 yrs n 57 yrs old. I agree with others you need to accept disease n learn all you can about it n suppleemts. I would introduce new drugs/supps slowly n individually so u can monitor effect.
My regime at mo, 1 cap slowrelease madopar in morn (neuro thinks i take 3 we wil hv fun at my check up next week). Mannitol which has cured my apathy n keeps me happy. B1 - i take a low dose if you see my profile you can read indepth there- 175 mg day. Azilect 1 cap a day. Mannitol n azilect may both protect brain
My other meds are walkingdogs twice a day n gardening and pottering about all day. I take yoga classes n at home alone, i run 3 times a week- only couple miles. I hv just opened swim pool so i see if i can remember how to swim. Being active is Hugely important n gardening is huge escape.
I dont rely on the drugs you must cure the apathy get positive n get moving. Gd luck
Dont know if used as a/depressant but works for me like that. Diseaae hard on everyone as u lose what u used to b able to do. Hv to let it go to move on. I'm in the charente where r u?
I agree with the above regarding drugs probably not being the answer. The following has helped me with my left foot over the last few years. Age 67 diagnosed 7yrs ago. Drugs 5 x 62.5mg Sinemet, 1 x 1mg azilect.
Physical exercise like dancing (Line dancing is good as you are on your own) and Tai Chi for overall balance and coordination. There are some good online Tai Chi videos - I like Don Fiore. Using a treadmill makes you move both feet. Keeping ankles flexible by balancing toes on a step and raising up and down. (Make sure to hold a handrail preferably both sides). Look at foot ankle supports such as Orliman Boxia or Orthoservice AG AFO rigid which I use for walking on rough ground. Tai Chi helps with mood too so may improve apathy issues.
So sorry to hear about your husband and problem with meds. I know it seems difficult to keep going back to your Neurologist when trying to find a balance that works without taking too much.
I would go back and see him, describing all the issues and ask about doses. It seems a bit low to me but finding the balance is difficult. My husband dx five years started with Modopar same dose as your husband for about 6 weeks to see how he got on, and whether they made any improvement to symptoms. After this initial time the Neurologist doubled the dose and my husband has stayed on that dose, occasionally adding in an extra half when he felt he needed it.
We changed the Neurologist through our GP last year and much prefer our new one. He has added in Azilect and Amantadine which seems to have really helped.
My husband does take B1 and other supplements which the Neuro said carry on if you get benefit from them.
He walks a few miles each day and goes to the gym - when it reopens.
Thanks Zella for your answer. My husband was on just Azilzct at the beginning then came off it - I can't remember why though. I think we need to look into finding another Dr as the one we've got is very inconsistent - changes his tune every time we go to see him (every 6 months) and won't believe in anything other than "true" medecine. Is your husband still at work. Mine is and just can't find the time to exercise, meditate and generally look after himself properly. He's so much better when on holiday and the stress levels drop.
My husband is just 70 and has been retired on and off since 60. Dx at 65 after having symptoms for a while that kept coming and going. It is hard to fit in exercise when you’re working especially when you’re tired.
Any stress does affect my husband - like when the car was hit yesterday when parked. It was settled quickly but it made my husbands tremors really much worse until sorted out by insurance company.
Changing our Neuro was definitely a good move. Seems more on our wave length.
Your poor husband sounds to be on a dose that doesnt reach therapeutic levels. He will be much more likely to feel low in mood and apathetic on such a low dose. He gets only 150mg of levadopa a day! Many people need that much every three hours!
When you are reading others experience I urge you to be mindful of these
Males and females respond differently to meds
Getting diagnosed young carries many different stressors and a different disease trajectory from being diagnosed older
People are different sizes and different metabolisms yet we treat them all the same
Genetics plays a part especially in younger onset, there are different types of PD but we are only now discovering this
Peoples experience at 2 or 3 yrs can be radically different from peoples experience at 5-6 years or 10 - 12 years.
I used to have foot drag, my leg was like hauling a heavy log around at times, no more though, in fact i know longer have a log leg ever and only have minor gait disturbance in the form of cadence, but it’s very short lived when it does appear.
I’ve graduated from walking the dog around the block to hikes on hilly dirt terrain. My closet is fun again back in high heels and platforms shoes at work, dressing up not down.
I promise you, you’ll never be able to “will” your leg to move no matter how determined you are, it doesn’t work like that. You must change your energy by entraining your energy field and then you’ll move again. Matter doesn’t move matter, energy moves matter. This however will take commitment and time. For me it took 14 months to lose the log leg permanently. First my balance corrected, then in and out of chairs normally, then log leg gone. Just two things left to fix as I mentioned minor periodic gait cadence and oh yes, tremor of which the amplitude is steadily decreasing.
How? For me it’s been ...Dr Joe Dispenza meditation that’s brought me back to a very normal life. As my husband says “at the rate your going you should be symptom free this time next year”. That’s his observation anyway. B1 corrected non motor and aided equilibrium .
My husband takes Modopar 62.5 (levodopa-50 + bensarazide 12.5). At first 3 times a day. Then tried 2 tabs 3 times a day (total of 6 tabs in a day) then reduced to 1 tab 4 times a day - all without docs approval. I cant say there's any big difference - but at the moment he's all but crippked by a terrible sciatica, probably made much worse with Parkie.
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