Parkinson's Movement
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Tried meds. It worked -

Hi. New here. Was told to try Parkinson’s meds 3/2017. Dr said if it works I have PD. Didn’t take any because I was sure he was wrong. Walking got more difficult so I tried the meds last week. It helped and now I’m still hoping it’s something else. 😐

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Which meds was it?

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Sinemet

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Not going to take regularly because I don’t have tremors. Just hard time walking - will look into alternatives when I need to. Forgetting a lot which is worrisome

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You must take c/l. This to prevent falls. Undetected brain trauma can be fatal. Mark my words, your elder brother in Parkland. I understand how you feel and want to act. We have all been through that early phase

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Strange that you write “Walking got more difficult so I tried the meds last week. It helped“. then you write “Not going to take it (the meds) anymore because I dont have tremors....”

You just said it works but then you say you wont take it because you dont have tremors?. Well You probably have the non tremor type of pd. and tremors might never be a problem for you.

Sinemet isnt just for tremor, it is for Parkinsons symptoms which can be from pain to rigidity to low mood and more.

I urge you to be open minded about taking meds for your daughters sake if not for yours. She already has a parent who is getting slower before her eyes. I have a friend who is getting contractures in her hands because she is trying to heal naturally. We go to boxing and her lack of energy and strength is noticable..

Best wishes coming to terms with your diagnosis, I can say after living nearly 10 yrs with pd that its not all bad!

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I think if symptoms get bad enough I’ll try meds again. I just don’t t want to end up with dyskinesia- or worse after 5 years. I’m going to get some mucuna P. From what I’ve read sinemet has a lot of adverse side effects. That is a big risk- I decided to go big on exercise as that seems to be most helpful.

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You have been misled by something that is a complete myth. History of levodopa usage does not lead to earlier onset of dyskinesia. This was disproven by a study of Africans who had no access to levodopa.

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Do a Datscan that’s what I did I went to 3 neurologist because I thought they where all wrong. But nope they weren’t. So Carbidopa/levodopa and $224.00 Carbidopa 25 mg, and zofran and 1/2 Vicodin every 5 hours and keep busy I do pretty good. Been 3 1.2 years diagnosed.

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What is the Vicodin for?

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I have arthritis, back, neck problems. And I’m so stiff in morning.

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Sleddog

Has the neuro told you that back, neck and shoulder stiffness and pain are also classic Parkinsons symptoms? Morning is the worst time because we have been immobile and we have gone the night without meds. My hunch is that your stiffness and pain will be relieved within 1 hr of taking c/l without pain relief. If it is you will know it is connected with your Parkinsons.

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Is PD generating joint pain, too? I taught is the arthritis which does it.

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Joint pain Very common to be pd related.

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Still I noticed if I keep my right hand in warm water the pain goes down which I know is the case for arthritis. The heat reduces the inflammation. I'm not sure if the heat can cut down the joint pain caused by PD.

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Pre diagnosis I had wrist pain that was relieved by warmth. Since being on treatment i do not notice it anymore. Similar with my hip, back and shoulder pain. It may be arthritis you have, and so might I. All I know is levadopa (sinemet) relieves my pain?

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Interesting.

Thank you.

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Before you can start feeling better you'll have to Accept it & take Action....exercise and take meds (keep to a minimum if you can). Also, research supplements that may help PD. Others on this site will help. Ask as many questions as you need. Hang in there!

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“Forgetting a lot....” I can tell from that phrase the carbidopa is already robbing you of your mind. Carbidopa interferes with cellular functions, something to do with depleting an essential b vitamin. Do some searching herein to find how to supplement and defeat the damage carbidopa can do to your intellect. Good for you to post here. Welcome and sympathy go out to you .

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Carbidopa binds with vitamin B6, especially in the G.I. tract. You can prevent carbidopa -induced depletion of vitamin B6 by taking B6 at least two hours apart from your carbidopa levodopa medication.

As long as they do not meet up in the G.I. tract, carbidopa will bind with a little bit of the vitamin B6 in circulation, but not enough to disable either one.

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I realize exercise is the best medicine for now. Started today at club. So I’m glad to get back into that. It’s been awhile. I’ve only had one tremor in my rt hand. So I wonder if it’s really Parkinson s. Walking has gotten extremely slow. Bending down and getting up - difficult. I’m 56 -single parent and am my youngest daughters only care taker. She’s 15 and has a lot of medical problems. 🤦🏼‍♀️ Does everyone have tremors?

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Intention tremors but not resting tremors in my hand. Rare infrequent tremor in rt leg. But every other symptom except drooling

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No ma’am some do not have tremors some are primarily just slow movers

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My husband has very few tremors but he is in bad shape otherwise. Has your handwriting gotten smaller and smaller? Have you lost your sense of smell?

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No problem with smelling. Handwriting is bigger than normal cause I write in whiteboard for my daughter.

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Makes me feel you might not have Parkinsons. The people I know in my Parkinsons' support group, most, including my husband, lost their sense of smell about 5 years before their diagnosis. Their handwriting tends to get smaller and smaller in signatures.They also tend to have REM sleep disorder for a good part of their lives. My husband was flailing around and grabbing my pillow out from under my head,"wham" as I hit the mattress, on our honeymoon in 1960!

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I have sleep apnea- use cpap for over 14 years. Also restless leg on occasion. My sense of smell has always been heightened.

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i dont have tremors, but the sinemet is a god-send. if i didnt take it, i would have extreme bradykinesia - very slow movements, stiffness, mask face (i call it the duh face), monotone voice, mentally slow, my whole personality flat. i was diagnosed 14 yrs ago, and have been taking sinemet since then. the dyskinesias were not bothersome until about a yr ago, but medial marijuana has really helped with that. i tell people - id rather look like a crack head than a zombie. i am not the type of person to take alot of pills. i research everything, and do homeopathy and alternative. but i will take my sinemet. it has given me my life back. take the sinemet -you will feel so much better.

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CBD is great. I started using my husband's when I found myself getting so upset over his problems. It worked as well as Libruim which i took many years ago.

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If the meds work it's probably PD. If you are struggling just take a low dose of meds (maybe try azilect which might slow progress) so you can keep active and not have to think about it all the time. Then you can excercise and try a range of supplements as you learn more about them. We all have our favourites!

Taking the meds is not a sign of weakness!!

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Haven’t told my kids yet i have 5. Their grandma has PD and it was awful watching her decline. I wish they hadn’t been exposed to that because it will be harder. She’s in a nursing home. She Not doing well. Does the med hello with memory. I take Coumadin for clotting disorder and last night I could not remember if I took it or not. It seems even after 20-30 min I forget things like that. I started writing it down. I already have a med sheet for my daughter. We both take supplements along with other meds. I’m glad I found this group. 😊.

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How old are your children? It would be better I think to get the dialogue started whilst you are still relatively well. Fear is a terrible thing and children pick up on it and imagine the situation to be even worse than it is. Otherwise, they think, why wouldn’t you share it with them?

I have written some gentle stories for approx 5-7 year olds. It helped me. See dawnmay.com

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2 married and In other states. One away at college (21) one home 27 til summer when he buys his own place. Youngest is 15. She has Down syndrome and is currently being under dr care for encephalitis. She was doing great until she got sick w strep a year ago 😞 (single mom). I want to make sure before I stress them all out. Watching their gram go downhill w PD was really bad for them.

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We went through the same thing. It seems maddening that the only way they can tell if you have PD is if the medication works or not. We were both in denial for a long time. We have found that if I put alarms on my phone when it's time for my husband to take medication, I call him from work and wait on the phone until he takes it. Otherwise he forgets almost immediately after he hangs up with me. Taking your medications on time is essential. I've noticed a huge improvement when he stays on schedule. Hang in there and lean on your family for support, they would rather know and help than be kept in the dark, that was our experience anyway.

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I didn't have tremors until several yrs into my diagnosis (approx. 8-9 yrs). I was 46 yrs old when diagnosed 14 yrs ago. The comments on this website are very helpful, but one of the biggest things you need to remember is everyone is different. Symptoms, timing of meds, types of meds, side effects & effectiveness, progression, etc. are all different for everyone. PD is often called the "snowflake" disease. I have been doing RSB ( non-contact) boxing which has helped a bunch. rocksteadyboxing.org

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My consultant told me that 30% of patients don’t get tremors and if you don’t have them you never will. I’ve only started having tremors in my right leg when my meds run out very recently. I was diagnosed 6 years ago. Get exercising! It’s fun and good for you.

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Is anyone taking Nuplazid with positive results?

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My husband would like to, but it costs $2700 a month!

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Living in denial wont make it go away. i know because i was there for a few years

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Lol!!

I was diag in 2012...

I'm still hoping it's something else too!!!!

In the meantime here we are....

We're alive so let's live !!!

( of course I'm not always this positive)

Seriously tho

You're on a good path .. you've found us & the meds work...two blessings!

Be well

C!

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The purpose of taking Sinemet, in the beginning, prescribed by the doctor, if he suspects Parkinson’s, is to see if it relieves symptoms. If it relieves symptoms, my neurologist said that was diagnostic. So if your symptoms are relieved, I would think that you should keep taking Sinemet. My advice would be to follow the Dr’s advice. Walking had become very difficult for me, too, and on Sinemet I’m doing much better. Not taking the medicine and having to deal with the symptoms and continuing neuro-degeneration could, I would think, make progression faster. I believe there have been some studies out, concerning that topic. I would discuss your concern about bradykinesias with your doctor, because it is not always something for everybody who has PD to worry about.

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You mean Sinemet slows down the PD progression? My doctor told me that and I posted it here but no one agreed with it.

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I’d like to clarify one thing here. Sinemet relieves me of some of my symptoms, because it replaces some of the lost dopamine. That does NOT mean that Sinemet stops the progression of neuro-degeneration. There are theories out there that it may help slow down progression, but I do not know if that has been proven with scientific testing or not. I am only a person with Parkinson’s. I have no medical expertise or training on the subject of Parkinson’s. I can only go with what my neurologist tells me.

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Hi Parkie 1234,

I am around the same age (55) but have had my diagnosis of Parkinson's for almost 5 years, and have only a tiny tremor sometimes in my left hand, and when my drug (Sinemet) is wearing off, in my jaw. No one notices it, it seems. My troubles have been my walking (gait), memory and brain fog, and slow digestions/motility/constipation. I suspect I am a non-tremor (possibly PIGD) type of Parkinson's, and my neurologist told me that the best thing I can do is exercise, and get the heart rate up above 120 bpm for 45 mins, 4 times a week. If you do indeed have Parkinson's, then Rock steady boxing or biking (spin class) is great if you can do that. And yes, take drugs! Like you, I have wanted to go natural as much as possible, but have to weigh the pros and cons, and there is no denying that I need my Sinemet. My neurologist also said to me yesterday that if HE had this disease, he would go also go on rasagaline, and that is supposed to act like an anti-oxidant.

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Hi parkie 1234.. try taking a very low dose of sinamet . Half a pill 2 X day. Macuna can be taken in between if you need it. Excercise is so important. I decided to take low dose naltrexone after researching it thourghly. It slows progression and has worked for me. Also mannitol is very interesting. So keep searching and excercise. Good luck ..there's hope.

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Kk

K

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Before neurologist appointment I too did not tremor, however was developing sudden feelings that I was going to fall, stiffness, slow to stand up or get out of car and getting harder to walk. Doc did not think I had pd, however walked out of office with c/l prescription. Within 15 min of taking it felt relief which both concerned me and relieved me. 3 years later now take rasgal8ne and c/l. I do not tremor. I feel meds have given me my life back and am not into potential side effects of falling. Im one who would much rather go holistic; and dont likke even takeing aspirin im not a fan of meds, but not a fan of side effects of falling and am thankful to have my life back. Exercise tho is very important I feel it is good not to depend 100% on these meds. For me dont know if it is meds or pd symptoms that tend to make me lazy or fatigued about exercise yet i know exercise is important!'

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I’m rethinking the sinemet. I have gone back to health club and am learning piano. Started piano last year when my daughter got sick and we were stuck in house - I do believe in neuroplastisicty of our brains. So I’m going to keep trying to make new neural pathways as long as possible. I don’t have issues of falling- as long as I have stair rails to hold on to. Just hard to walk and weakness in legs along with forgetting which is what worries me the most.

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