Dopamine Level's

Hi @Debbielou

I feel for you both, although if your husband is like me, it will be worse for you as it is for my wife as you can see what has happened to your other half.

The brain is a very complex thing and to think scientist know more about the space and how the big bang happened than the very best neurologist know about how the brain works and how the symbiont microorganisms can effect how it works, so although its frustrating, unless its smacking them in the face, its very difficult for them to figure out what’s going on with todays technology.

Myself, I’ve seen my new specialist and he although doesn’t think its Parkinsons (which I’m grateful), he has indicated that I could be in the very early symptoms or that I was on a very good day (which I was) and cannot rule it out either. It doesn’t help when you also forget to tell the specialist some of the symptoms either like sense of smell. I’m grateful he’s going to look over all my records since I became ill too and for me, that’s a significate step in the right direction as its a true second opinion

I have new symptoms now with reflux acid, my taste is changing and my sense of smell which has been all over the place is still altering for the worse (couldn’t smell some very strong bleach the other day, yet my eyes and throat certainly told me it wasn’t good). My voice is still as bad and I’m now having some speech therapy which is where I found out about the reflux (hadn’t noticed it - but I’m guessing its been there a little while), I’ve also had an endoscopy which has revealed I have a weak larynx causing my vocal issues.

I’ve had two sessions now and although I find it very challenging to make certain noise plus alter my vocal pitch or levels, the therapist has noticed that my voice also quivers (she heard it once in the last session) and has also said she will be asking some of her colleagues from that moment about other methods as again I’m not typical for the usual visitor. She has also noticed how difficult it is from me with controlling facial and vocal muscles. Its just a good job I can laugh at myself as I’m there trying to make a cat prrring sound and my lips will just stop moving and then come back, I’ve also been told the level of concentration and effort I’m having to put into these small tasks isn’t normal with typical vocal problems.

I know I’m going to be a tough one to diagnose and its just going to be that way. I’m still certain its something neurological which the specialist has also agreed it is (although what it is still to be determined)

If your husband is able, I have found the best thing for me is vigorous exercise and without it, things become more difficult indeed. What’s odd is it’s something I have to really work at and for myself is about 27km a week running plus anything extra otherwise unknowingly things become far more difficult for me to do. Since Christmas after a injury It’s taken me more than a month to find the level before I was injured. This is longer than it has ever taken before which isn’t good as the last like I took a break because of school holidays took longer than the time before but shorter than this time which is a showing pattern.

Even with exercise, all the my typical symptoms are still there, I just notice them more without keeping myself topped up with exercise.

A question to others out there. This winter I’ve really noticed when I get cold, I’m freezing (cold to touch too) and it can take hours for me to warm up even with the heating on high, other times I can be sweating when its warm and then I can feel perfect when others around me are cold. It doesn’t matter if I’ve had a session at the gym either when I get cold, I’m just freezing. Today I was out picking my daughter up from school and my teeth were chattering uncontrollably and I was shivering even though I had many layers on

Thanks Shane thanks for writing back. Currently we are just going to sit back and see how the levodopa has effected Jim. He has had a few days that were good and the last couple were harder since he has been off it. I do have him on a vit. and mineral supplement and trying to reduce sugar and gluten, which is a hard diet when you love pasta and donuts. (Smile) I have an appointment set up with a new neuo group at one of the best in the state, Duke University. They do a lot of research, studies and training. The appointment isn’t until April 3 though. So it is one of those hurry up and wait senerios. In the mean time, we are going to take a trip to Florida at the end of the month and just try to enjoy a little life. Some times you just have to stop and smell the roses. Thanks again and God bless you and your wife, I will keep in touch. Oh one more thing about you being cold. Jim too has had that problem once in a while. Have you taken your temp when you feel like that. I am going to start doing that with Jim, I am curious to know if it is a body temp drop or just circulation.

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Hi all

I just want to ask about people balancing and what kind of issues did you each feel. I know in the passed three months I certainly noticing more of an effect than I have previously had.

I’ve had balancing issues since I’ve become ill, but just recently I’m finding that I’m having to increase my level of thought in order to try and control my balancing and a couple of times now I’ve had to steady myself before I fall

Oddly when moving very quickly like running or on my bike I do not notice it as much. It’s just effecting me when out walking (at a normal speed with the family) and moving around the house plus when picking things up of the floor which requires crouching

Well its been some time since I’ve posted on here and I just thought I’d touch base as I’m still not confirmed as having Parkinson’s although my symptoms have been progressing very slowly. I saw my new neurologist who I saw the last time and he still isn’t 100% sure its Parkinson’s but now wishes to try me on Co-careldopa until I see him next as I have never tried any Parkinson’s medication to see if things improve. I’m also being referred for an EMG to test my nerves and muscles to see what’s going on. My neurologist has mentioned that all my previous MRI’s and CT Scans are fine as he wanted to make sure nothing had been missed himself. Seems he hadn’t access to my DaTSCAN as he said he hadn’t looked at it.

I’ve also have to increase my exercise just to pull some of my balance issues back (clutching at straws to see if it worked) as it was becoming obvious as it was starting to happen when moving around and questions were started to be asked

Other functions though are just odd though and I’ve read some in these forums that those areas can be effected.

I do have a couple of questions which I’m hoping others will oblige in answering if they can.

Can I ask about the confusion. Today I was paying some pennies in at the Post Office and got chatting, then when I was asked to confirm the amount, I thought I’d to put my pin number in, it might only seem small, but this is something I’m noticing more and more in myself. It seems that this type of distraction confusion is happening more and its a little annoying if not embarrassing as its making me feel a little stupid at times. If I’m leading the conversation I don’t have any issues at all, its only when something catches me unaware

The second question is how long did it take your medication to make any effect. Was it noticeable (if so, was it quick or slow) or not. I’ve been given 12.5 for the first week three times a day then its twice the dosage three times a day until this prescription runs out where I’ll be given the higher dosage in one table to be take three times a day

I’m not starting the medication until Monday next week as I’m doing a charity run for a family member and don’t want things to interfere as I’m coping with the level of brokenness at the moment

Thanks in advance :grinning:

Hi,
I think most of us found that the medication was fairly fast acting. Some within a few hours!
When I started Sinemet, I noticed an improvement within a day or so. It can be difficult to decide if it’s the placebo effect or a real improvement.
The clincher for me was my typing. That was something that had got very difficult but a few days after starting Sinemet I was ably to type up a couple of pages with few errors and no frustration.

Jim
I recently went to the full tablet but have has side effects so back to the starter size for a rethink.
The 12.5 tablets are working well so no rush I think.

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Hmm, I wonder if I’ll be able to sign my name again with what you have mentioned @jimdownunder if the medication works for me (feel as though someone has pinched something from me with that) :thinking:

I must admit, even though my diagnosis is still a little up in the air and I’m in the guinea pig stage now. Friday whilst having lunch with my wife after my appointment was the first time I’ve felt scared for the future since suspecting it. Prior to this, even when diagnosed first time with PD I didn’t have the same fear in side as I guess was expecting it. The only side that upset me was my wife crying which partner wishes to see. Since then I suppose the unknown is what kept me focused and now that I’ll be trying the medication. If it works it’ll should in theory let the neurologist know what’s wrong with me and if not, well, nothing will have changed and I’ll just keep plodding on as I am but the trepidation feels somewhat more