Sinemet effectiveness

[Enidah]

I just got out my journal from 2013, the year I was diagnosed. I was curious how long it had taken for the Sinemet to really make a difference in my symptoms. At our local support group we had a neurologist speak this week and he said it was a matter of hours in which people could see a difference. My neurologist at the time said it could take weeks. But reading my journal it took a long time for the Sinemet to really make a big difference. And it continued to get better until I was hiking again and biking 10 miles at a go, Etc. I'm glad I have this journal. It's fascinating to read. Every day in the beginning I talked about how I needed to push myself and get out more. I also talked about how exhausted I was. Parkinson's is one of the few things in life where if you're tired you get less tired by doing more... Up to a point, of course.

I would love to hear other people's experience with this.

[12stargate]

Enidah

I can relate.

I was exhausted a couple of hours ago. Then I prepared a lot of chicken to bake, prepared applecrisp in the slow cooker, folded laundry, put laundry to be washed, did 2 videos and posted them to facebook, and I feel energized!!

[Enidah in reply to 12stargate]

Well, good for you! I think it also makes us feel like normal people when we do stuff and that's a big help. Feeling like one of the 'normals'.

[racerCP in reply to 12stargate]

Hurrah to you, doing useful things with your time. I just exercise and play.

[12stargate in reply to racerCP]

racerCP

Oh, I play a alot too

[Lynnie1 in reply to 12stargate]

We HAVE to play sometimes! 😄

[stevie3]

I am keeping a diary now and have done for the last year. I track my symptoms on an app (uMotif -Parkinsons 100) - which has a diary function. It's very interesting - it shows what works for me and what doesn't work, it's there in black and white and is better than relying on my appalling memory! I've just upped my exercise programme - I do PD warrior and I go to the gym, which may sound impressive but my stamina is pathetic. But, by increasing my programme my endurance is improving - although I couldn't do a ten mile hike, Endiah, but I couldn't have done that even ten years ago - and my energy levels are really good. I'm quite achy though. The other thing is when I started to take ropinirole at the start of this year, I used to take a short nap after work because I felt very sleepy, and I haven't done that for months - but I'd forgotten. So you're right, it's a very interesting exercise but also a very useful one.

[Enidah in reply to stevie3]

I need to do the journal thing. Reading my journal about when I started taking the meds I was amazed at the things I didn't remember. And I know that's certainly the case now. It's not as if I'm getting sharper and having a better memory as time goes on. Ha, not bloody likely!

[Enidah in reply to stevie3]

Stevie, I can ride my bike 10 miles if it's pretty flat terrain and I have walked recently 5 miles but now when I try to do that I end up with my right foot hurting. PD and getting older are quite a daunting combination.

[johntPM]

Enidah,

You write "a neurologist ... said it was a matter of hours in which people could see a difference. [Another] said it could take weeks." They could both be right. The first one could mean that if we give you the right dose of levodopa, under the right conditions (i.e. away from food, especially protein) then you will see a difference in one hour. The second one could mean that if we take our time and slowly increase the dose and, to reduce nausea, take the doses with food, then it could take months to find a therapeutic dose.

John

[Enidah in reply to johntPM]

That is a good point and when I read my journal I realized that I had started off very slowly with the sinemet. That seems like a good way to do it to avoid nausea.

[Boyce3600 in reply to Enidah]

Can u elaborate on what you specifically mean by very slowly? Did you take one pill for a week or two then increase to two or exactly what? ( and what dose did u begin with)

thank u

[Enidah in reply to Boyce3600]

I wish I had been more specific in my journal. What it says is, started meds, low dose! As I recall I was breaking them in half and then within a week I was taking the regular dose of 25 / 100 sinemet three times a day. I noticed something very important though. I was very unhappy until I started taking Lexapro, 10 milligrams a day, about five months after PD diagnosis. It helped immensely!

[paddyfields]

For me the tabs were effective within a very few weeks but my symptoms were generally mild and of short duration because a car crash precipitated the onset of obvious symptoms so the dx came within weeks of rapidliy developing right-sided tremor.

My interpretation is that because of your keenness to get back to waking etc. you were slowly rehabilitating your brain/ body (neuroplasticity) which is a separate issue from how well the drugs substitute for a normal level of dopamine and allow this rehab. to take place. Its a bit of a bee in my bonnet that as far as I can make out the attempt is seldom made at rehab. as long as you are mobile and can get out of a chair. In my area I have to attend the "PD physio" and not the ordinary one who will say "Oh you have P you must go to.....". I now realise that the outcome of my two encounters with the "specialised" physio unit should have been a confession that they didn't know why my hip seized up and a referral for to the rheumatologist. Would have saved a lot of pain and frustration.

Regarding the more you do the more you can. This was my experience when still doubting the wisdom of undertaking and trip at all, I started my WPC trip by arriving at the wrong Portland from the UK. I survived 9 days when everything that could did go wrong, or so it seemed, on the go from waking to dropping asleep and including two unplanned overnight stays at airports I did not even have any fall out such as I often had after Rambling holidays per diagnosis. I I felt completely normal the whole trip.except for one of two short periods of " heavy legs" but I kept . Now I can feel the awkward gait and shuffling trying to get a hold and am trying to motivate myself to go forth into the winter gloom to the gymn and follow Nancyclists cycling protocol

[Enidah in reply to paddyfields]

Isn't it crazy?! I have actually run through airports with my Rollie suitcase bouncing behind me to catch a flight and still did fine. And yet some days can't get myself to go to the grocery store. There is a definite mental angle on all of this. Knowing I have this neurological disorder and then needing to go and do things, there is a fear and deficit of confidence in my abilities and almost an inferiority complex about not being 'normal'.

Curiouser and curiouser.

[paddyfields in reply to Enidah]

One of the delights of my trip was that owing to my phone not charging and a muddle over my son meeting me at Heathrow instead off the train near home as previously planned, at 5.30 when the underground (Subway?) started up again at Heathrow Airport, there was an "evacuate,this station........" alarm. Whereupon I raced away from the underground stop up a slope only to realise this meant I was approaching another stop. I used the emergency phone nearby to say what do I do now. They said no alarm that they knew of. So down I go again. Turns out they have a practice at 5.30 in the morning .

[Enidah in reply to paddyfields]

That sounds like one hell of a trip! If it could go wrong... It did go wrong.

[maungwin56]

What is the dose you are taking? I am taking 100/25 3times a day. My neurologist suggested to increase but I didn't. I want to keep it minimal. I was diagnosed with pd in 2014 but I believed that it started in 2013.

[Serenity_finaly-1 in reply to maungwin56]

I bet if you look back there was probably symptoms which you did not recognize at the time going back for years.

[Enidah in reply to maungwin56]

I'm taking the same as you and also have not increased it although sometimes I end up taking three and a half in a day if I need it. I have been taking 1/2 every 2 hours. I asked my neurologist about Rytary so I wouldn't have to be taking meds so often but he said I take such a small amount that it wouldn't work. Someone might have some feedback on that. I don't mind taking a half a pill every 2 hours except that it makes it hard to eat. Although, I must admit, I certainly haven't let that stop me.

[Serenity_finaly-1 in reply to Enidah]

That is why you take Rytary. I was taking one senemet three times a day but when I went to two I had bad dystonic dysconetia. It was wonderful for me. Rytary was engineerd to be an eight hour time release formula. After using it on patients it was discovered that four hours was more realistic. I found that for me it has a full life of four hours but it also has a half life of two hours. That way you experience off time but not a total off time so if you forget you will have a gentler reminder to take your next dose.

[Enidah in reply to Serenity_finaly-1]

The next time I see my doc I'm going to ask him more about this. It would be wonderful to not be taking the pill every 2 hours. I need to find out what he has against Rytary and what would be the harm in trying it. Thank you for the feedback.

[Serenity_finaly-1 in reply to Enidah]

The only problem I see is my problem. You try it you like it but at 800.00/month you can't afford it.

[Catlou]

I want to do more but don't know where to start

[Bailey_Texas in reply to Catlou]

Just do it there is no right or wrong. Find what works for you. Keeping busy is a great way to help beat the off times. i have a small gym set up and when i feel my meds waining i just lift some weights. works almost every time.

[stevie3]

Do more what, Catlou? Exercise?

[Beckey]

"Getting less tired by doing more " -- Enidah, that's great way to put it.

[Beckey]

The only thing that amazes me in looking back at journal entries is that once upon a time I could read my own writing!

[Enidah in reply to Beckey]

Too true! There is much in my old journals that I have yet to decipher.

[GrandmaM]

Very interesting observation about being tired --I wonder if any doctors use that bit of information to help diagnose Parkinson's .

[123leelee]

I increased my exercise but it has my knees in very bad pain, Previous knee surgeries. Very discouraging any suggestions. Also increases left shoulder Arthritis. I'm 55

[Enidah in reply to 123leelee]

That is the problem. We have to walk the line between getting enough exercise and not causing more pain in joints and tendons. How about swimming? It's much easier on the joints and tendons.