Dopamine Level's

[Shane]

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

[Debbielou]

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.

[Shane]

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

[Shane]

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

[jimdownunder]

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.

[Shane]

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)

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

[Shane]

@jimdownunder I understand your comments about the placebo effect now. I’m just not sure if its working or not. I’m noticing I’m feeling a little different and that’s really quite hard to quantify, but things just feel a little easier, my dexterity seems a bit better plus I feel a little bit more like me if you can describe what its like to be yourself. I up my dosage per the neurologist recommendations this week to the standard adult dosage. Surely the medication cannot work this quickly for me to notice little things as my logical mind says that nothing works so quickly and it must be a placebo effect

[Jumpinjackflash]

Shane,
I’m sorry to hear you have all these issues. Hopefully the L-dopa will do the trick. It did for me. It’s truly hell waiting for someone to give you an official “here what’s wrong with you and here’s how to treat it.” But unfortunately, trouble getting diagnosed is pretty common.

[DT]

@Shane, how’s it going with the meds?
Having read through your thread, my symptoms are identical. Currently waiting for a DATScan this Friday. I’m 40 years old.

[Shane]

Hi @DT

The scan is nothing to worry about, easier than an MRI if you’ve had one of those

As for me, something has certainly changed, even after this short amount of time. I feel more like I used to feel which to me sounds odd, but things just seem easier.

Really simple things which were becoming more difficult to the point of me having to hold things a different way to carry on. For instance, pealing a smallish potato or having to hold the fat end of the carrot just to peal it seems to have been removed to a large degree.

I keep trying the finger snap with both hands and I’ve certainly got more speed back on the left hand and where I really had to put 100% effort in to it, again it just feels easier too

The biggest thing though I’ve noticed is most of my internal tremors seem calm, laying in bed or sat in the chair, it’s quite a revelation and I’d forgotten what that felt like. Many of my muscles pains seems to be setting too even though I’ve been pushing hard with my exercise with the exception of yesterday and today.

Usually by this point, the issues would be forcing me to push though the pain to get going again with a trip to the gym or a run, yet today, I feel better than I’ve felt in a very long time and that even after having an EMG which was dreadful (can’t figured out if that or a lumber puncture is worse - the needle side that it EMG)

I really understand why the word placebo has been mentioned because even though things seem easier, I still cannot believe it the differences already, I still cannot figure out or comprehend the fact that do I have Parkinson’s or not and does this drug help other illnesses?

A word of caution though as I have found a couple of days where I’ve also felt floored too, but these have been days when my meals and meds haven’t gone according to plan.

I’m also waking up about one to two hours early in the mornings since taking the tablets (5:30 - 6:30). Not sure if this is because my bodies having a better rest at night/med/or something else

But apart from that, things certainly seem different in my case and for the moment, for the better

[DT]

This is brilliant news, @Shane !
Long may it continue Placebo or not, the fact that you’re regaining some of your dexterity, movements etc and lack of shake, is just brilliant- I’d like to think the meds would be fast moving! And I know exactly what you mean when you say about the carrots and potatoes!! I was a keen cook for years and still am, but the frustration is all consuming if I try and prep veg etc so I tend to stay out of the kitchen now.
Thanks for the advice on the DAT scan… When you had yours, was the radiographer vocal when you went for the scan, or did you really have to wait for your next consultants appointment before knowing the result?

[Shane]

Hi @DT

I had to wait for until my next appointment, but I’m sure it was very quick as they don’t want to keep you waiting for them

Obviously no one wishes to wish anyone well with the results of PD, but I do hope yours gives you the answers for you to move forward as not knowing is part of the battle

[DT]

Thank you @Shane that’s much appreciated.
Wishing you long, continued success with the current meds

[Shane]

@DT

Did you say you was having your scan today?

[DT]

Hey @Shane
Yes, it was today. Thank you for asking I’ve definitely had better experiences, but wasn’t half as bad as the MRI! Now playing the waiting game!
Did you have to wait long for your results? I’ve paid for a private consultation with my consultant on the 15th but really hoping I don’t have to wait that long.
How are you doing?

[jps1926]

Hi @ DT, if you were a keen cook you still are. Out of frustration and knowing I couldn’t keep doing all the prep work, I started to stay out of the kitchen, but found that more frustrating. So made myself get back into it. Might not always be as quick or neat as I use to be but it still tastes great and I need help getting heavy things out of the oven or and reminded to use oven gloves… oops burnt fingers again. Don’t stop what brought you enjoyment just find your new way of doing it. Sounds silly but really sharp knives help less pressure used to cut, chop & carve etc and now less nicks to my fingers. Though I think my Wife gets quite concerned if the tremors kick in when I have them in my hand. Also found lots of what I thought of gimmick gadgets really help, electric can openers, ring pull grips. Most importantly I am enjoying cooking again. Keep strong and bake or cook something you really like today

[Shane]

Hi @DT

If funny, time and my memory don’t always correlate together. I thought it was only a couple of weeks between the DaTSCAN, but reading my comments above brought back some of the memories and now I seem to remember it being quite troublesome to see the doctor. The wife sorted it out though and got an earlier appointment. I honestly cannot remember how long though, it could have been 8 weeks though.

I don’t think I’m as bad as you from what you have said and I was just a simple home cook. I did enjoy cooking all sorts, but I’ve fallen out of love with it to be truthful. It the same with my Lego technic which I used to built all sorts of stuff. It the fine movement I find a challenge. Having said that, I really need to re-visit them again as I’ve found I can sign my name again which is unbelievable, so that shows that some of my dexterity has returned. I’m also finding that around the time I’m taking the tablets, my right hand starts to twitch involuntary and about an hour to and hour and a half it settles down once I’ve taken the meds. Not sure if that’s an on off thing that people mention

I agree with @jps1926, don’t give up with cooking. I may not cook to the extent I used to as I’ve just lost interest in it, but I still do still cook, even though it’s not as fancy as it once was

[DT]

Thank you @jps1926. It’s all about the life ‘hacks’ … gadgets or simple solutions
I buy my veg already chopped, and meat. I will invest in some decent knives… although perhaps not whilst dexterity and tremor are so bad!!
I need to persevere and not rush too.
So, spurred on by your message, I baked a no- pastry raspberry and almond tart. Took me a while, had a couple of teary moments but I did it. Other half said it was fab
So thank you. It’s gonna take time but even today was a start.

[DT]

Thanks for the words @Shane. I’ve got my 15th Aug appointment so I’ll try and be patient.
I’m so pleased about the meds and dexterity… the test now is for you to try the Lego! I know exactly how you feel about writing and signing! You must be so pleased keep going!

[DT]

How’s it going with things @Shane?
Cracked the Lego yet…?