Parkinson's Disease Tulip


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Old 03-13-2007, 07:23 AM #61
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Default just awake and grumpy...

...about this blasted time change so will be brief-

Good day yesterday. So good that I forgot end of day meds and cough syrup until nearly bedtime. Decided not to take either and see.

Biggest difference in night was back to usual difficulty in turning in bed.

Also, yesterday morning I noticed my early morning lower back ache was gone. Still gone todat.

Now M U S T H A V E C O F F E E !
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 03-13-2007, 09:34 PM #62
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Default A fluke??

Well......I took my 1/4 tsp Robitussin this morning of my second day as a white rat, and today I have been able to get up from sofas and chairs with hardly a struggle. I have not been able to stand up from sitting without a huge struggle, or without a helping hand, for the last three, four years.
I can't believe that it could be placebo effect, but two times of 1/4 tsp Robitussin could not possibly help so much so quickly.
It must be a fluke, and tomorrow I will have to be hauled out of chairs and sofas again.
But you can be sure that I will continue taking Robitussin.

birte
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Old 03-13-2007, 10:01 PM #63
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Default Birtie

I had the same kinds of experiences..Who would have thought?..I had a good day today..no fatigue for a change..I laid down for an hour and a half but didnt sleep..Its 11:00 pm and Im still going strong..I think what causes the surge is that DM is a dopamine reuptake inhibitor, and as I said before I suspect that it helps the Sinamet work more efficiently..Strange..Very strange..
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Old 03-13-2007, 11:00 PM #64
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Default Similar results here too...

I find myself doing well enough that I am forgetting to take my meds on schedule. I've got to get more disciplined or I'll be worthless as a Rat.

Big effect noticed when I roll in bed. I can.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 03-14-2007, 08:57 AM #65
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Default Caya

Haven't heard from you in the last few days. Are you experiencing anything different?
Robert
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Old 03-14-2007, 01:28 PM #66
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Default Robert,I,m Still Here !

Hi:

YES,YES,YES!!!! I started my bedtime DM on March 4th and was going to wait until the end of the month to give y'all a report. However, I guess this would be a good time to share a progress report. My biggest problems and main symptoms are my voice and internal tremors. The voice trouble has been complicated by enormous amounts of mucus down deep in my throat and on my voice box. Nothing the docs have given me so far has worked. I work in sales and virtually not being able to talk has just about done me in.

Well, I am here to tell you the muscus problem is all but gone. I no longer feel like a cat with a hairball !!! My voice volumn is still a bit low but I can deal with that. Being choked and unable to hardly speak with all the mucus is what was making me nuts.

I have never had the typical PD "resting" tremor. I have always had what I call internal tremors. You know how you feel when you get real cold and you shiver and shake internally from head to toe? That is my tremor situation......and believe me, when it is really bad it is absolutely debilitating. Since being on the MD, my internal tremors have virtually stopped !!! I got very upset about somethings last week and then again yesterday and both times trembled a little but it only lasted a few minutes.

Soooooo at this point, the MD has addressed my two main PD issues. Don't know how long it going to last but until something breaks loose or comes untied, I AM SOING TO STAY ON IT !!!!!!!!!

CAYA
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Old 03-14-2007, 03:06 PM #67
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Default

Another satisfied customer..
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Old 03-15-2007, 07:57 AM #68
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Default Good to hear

of your positive results, Caya. I definitely think DM has a place in improving PD. As we all know, however, it will be years before anything definite can be said about it slowing or arresting progression.
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Old 03-15-2007, 11:33 AM #69
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Default A cautionary note

My experience is still positive, but I did run across one study using DM for ALS that found that about ten percent of the population are what are called "slow metabolizers" of DM. The bottom line is that the slow metabolizers build up levels of DM in the system quicker and with far less needed than normals. So, if I were experimenting I would start slow and build up over several days. Then, once I had reached what I thought was where I wanted to be I would back off a little until I noticed the benefits dropping. Then inch up a little. That would be a way for me to account for my individual metabolism. The stuff seems pretty safe but the differences in serum levels for slow metabolizers was as high as a factor of ten so you could be taking more than intended in that case. Might still be safe but prudence is called for.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 03-15-2007, 01:10 PM #70
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Default Dextromethorphan

Hello, everyone...I have been visiting this site for quite some time, now, and finally decided to join the group. However, I was unable to respond to the "invitation" to introduce myself...and so, I will briefly tell you, here. I will "confess" that I am not a pwp, but, rather, I am a caregiver to a pwp who was diagnosed in 1998, although in retrospect, it is probable that she had PD several years before diagnosis. Why am I here?... you may ask...and, the answer to this is that I have, as you might well imagine, read and researched this disease from the very beginning of my pwp's diagnosis, but it has been my experience that those who are afflicted with this disease are the "most experienced"and from my perspective, I believe that I will be able to learn so much from you...to become a better educated caregiver.

I have been fascinated by the topic that many of you have been discussing, i.e., Dextromethorphan (DM) and its potential benefits for pwp's. Ironically enough...just recently...my pwp had an upper respiratory infection accompanied by a very deep, hacking cough. However, it seemed to be the consensus of the pharmacists that we consulted that she should avoid the DM, although I had read that it was only contraindicated with the MOAI's which my pwp is not taking. She is taking Sinemet and Comtan. In fact, she consulted her neurologist who also said that she couldn't take ANY cough medicine! Then, I happened to read this thread about DM and its possible BENEFITS to pwp's. It all just seemed so ironic that on "one side of the coin", DM is taboo...while, on the "other side of that coin"is the very positive information...and the extemely positive experiences of some of you, here.

I hope not to be considered an "outsider"because I, myself, do not have PD. I am here to learn from those I consider to be the "experts"...the experienced...and it just may be that I may be of some help to you as well.

I will say that I belong to a Caregiver's Forum where I have learned a great deal, i.e., from the Caregiver's perspective...but, I am happy to be here with all of you who will enlighten me from the perspective of one who is afflicted with this disease.

Virginia
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