I am in my late 30's and was DX'ed about 2 year ago.
I am currently on 5 sinemet 100mg a day and 1mg rasagiline a day.
It started in my right hand/arm gradually moved to my right foot and now it effecting my whole right leg when off I can barley lift that leg/foot.
I have also noticed that it's effecting my left arm and leg (slowness,weak).
When "ON" most those symptoms disappear but I only get relief for about 1hr 1/2 out of 4 hrs. When "OFF" I can't get out of bed, my chair without help. Can barley walk with my right foot but just about manage round the house.
Sometimes my meds don't kick in and quite often I am in bed all day, I sometime manage to get my meds working by forcing my foot to move which in turn the meds kick in.
These symptoms have progressed quite quickly over say the last 3/4 month. 3 month ago I could walk quite quickly with a limp and now I can't hardly walk.
At this rate if things keep going I think I'll be bed bound by end of month or 2.
From what I have read it shouldn't progress this quickly and I don't see my Neuro for 6 months. I seen my Parkinson's Nurse last week and she said it's typical of PD but this can't be right surely?
What are you guys like when off?
I am currently "on" atm and it's a huge difference as I can type 2 handed when "off" i struggle as I can't use my right hand and my left is really slow.
It's a really bad life to live when I am "OFF" more that "ON" so I am unable to do anything.
What's people progress been like? Anything like my story?
Or am I on my own?
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T127
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I've had a MRI Brain scan come back normal, DAT Scan come back abnormal which pointed to PD diagnosis.
I am so sure PD shouldn't progress this quickly.
I have also over the last 3 weeks visited my normal doc 5/6 times and he/she seems to think it's down to my PD... I have had blood tests and urine tests done.
I didn’t want to say anything about the pace this is going for you, because we are all so different in what this disease can do. It’s not going to hurt to get a second opinion.
I agree with 12Maxwell3, you need to get a 2nd opinion, preferably with a movement disorder specialist if possible. Stress can tend to make it worse. Try meditation, Tai Chi, Yoga, etc.
We are here for you, T127. I’m sure, with those symptoms, seemingly progressing rapidly, it is upsetting to you. As one who has had PD for a while, along with Ataxia, and it affects both hands and legs, I can relate, I’ve had progression, of course, but I am much older than you. I am in my 70’s. My best advice, would be for you to get a second opinion, from a movement disorders specialist doctor, as soon as possible. In spite of what the PD nurse says, that rate of progression, causing you that much disability, when you’re on that much Sinemet, 5 times a day,along with the rasagilene, and it works only half of the “on” time-waiting 6 months is too long, in my opinion. You need to be seen by a neurologist ( preferably movement disorders specialist soon ), in my opinion. There’s nothing wrong with getting a second opinion, and you will probably feel a lot better if the Doctor (s) can find out why there is this faster progression of disabling symptoms. In Parkinson’s disease, I do know that the extent of neuronal degeneration determines why so many people have varying degrees of symptoms, and, actually, I believe the name Parkinson’s, could probably be divided up to include several types of neuronal degeneration. When I take Sinemet, it usually relieves symptoms for about 3-4 hours. Then, I may have about an hour “off” period, and I take another pill. So, if you can, please see if you can get another professional neurologist’s opinion, as soon as possible.
the timing of your sinemet in relation to food & meal times may be affecting how you feel. i take sinemet 25/100 every 2 hrs. i have to strictly adhere to a routine. i take the sinemet 30 minutes before i eat, and then the next dose 1 hr after i eat. also, protein will effect how the dose after the meal works, so i only eat high protein at dinner. i can eat very small amounts of bread, cheese or cream at breakfast and lunch, but since they have protein and the fact that fats take longer to digest, im careful how much of them i eat. sometimes, i could kill for a big roast beef sandwich! but i know ill regret it. i feel better with things like fruits, vegetables or salads; and i make up for it at dinner. im only 95 pounds, but i can eat 3 pork chops when dinner time rolls around. if you really pay attention to when you are "on" & "off", you can adjust your diet and meal times so that you can feel better.
Hi. I take sinemet 5 x a day. Every 4 hours. It seems to help me. Days I feel good. Days feel bad. Some days feel weird. My phon alarm goes off when next pill. Take. Half and 3/4th. Walk 30 minutes. What you think all good?
That doctor is a genius. The site is in russian. But I believe English translation is available. Let me know what you think! Thank you for paying attention! Alena
I would consider your situation in terms of whether you are correctly medicated.
As I understand it you are on 5x100mg Sinemet/day and 1mg rasagiline which gives a levodopa equivalent daily dose of about 600mg levodopa/day. While this is not a small amount (I am on about 750mg/day 12 years after diagnosis) there is a long runway up to about 2000mg/day.
Your main medication is levodopa. This requires a high enough dose to carry you over an "on" threshold. Unfortunately, it has a short half life of about 90 minutes, so if it doesn't take you well over the threshold, you will quickly get back into an "off".
My experience has been a slow increase in meds, followed by a rapid rise, followed over the last 6 to 7 years without an increase in dose.
Typically, patients are titrated with larger and larger amounts of levodopa until their symptoms are under control. Has this happened to you recently?
jujulini is right to mention the role of diet in PD.
I would contact your specialist nurse and ask about an increased dose.
To me, what you say does not make any sense, but I accept what you are saying.
Try doing this, when you are in the "OFF" situation:
With somebody holding onto your left arm, Stand up as erect as you can, with your feet together. Then put all your weight onto your LEFT LEG and then lift your right leg up in front of you with the knee held straight.
Now put your weight onto your RIGHT LEG and then lift your left leg up in front of you with the knee held straight.
If you were able to lift your legs out a reasonable distance, then you are able to take steps of the same distance. When you did this test, you were consciously moving your legs, but when you walk, you don't consciously move your legs.
So what I am suggesting to yu is to start CONSCIOUSLY MOVING YOUR LEGS AND ARMS, WHEN YOU WALK.
Well no one else has suggested this to you, so I guess I will. Have you considered DBS?? You are still young, you haven't fallen, and you do respond positively to Sinemet. These are all good indicators that the surgery could be an option for you. I just had it done this summer (I'm 46) and I have seen positive results from it. Find a good Dr and Neurosurgeon team to see if they think you could be a candidate.
The rate of progression really makes me wonder if you have one of the Parkinsonisms rather than straight PD. You really should see a Movement Disorder specialist ASAP.
Have you tried switching to Rytary, it is a sustained form of Carb/levodopa. The problem with generic Sinemet is the unpredictable release of mainly the sustained release as well as the immediate releases to a lesser degree. Also, you might find a Rock Steady Boxing affiliate in you area, it provides targeted exercise for PD specifically with much success, also the necessary association with other PD people. And since you have had PD a relatively short period of time, it will benefit you the most.
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