Surprisingly well. I’m really am starting to feel like my old self, had a few hiccups with the new batch of meds. Getting the times of day right. As I wasn’t given any recommendations with the first batch other that three times a day and it must be with food, I was snacking before hand when taking them and it seemed to work fine With only breakfast time being a meal time when taking them. However the new batch stipulated it had to be breakfast, dinner and tea which seemed to make me feel a little off. I went in search on these forums and it seems that having a heavy/large meal with them could stops them from working efficiently. So I’ve reverted back to how I was taking them before and all is well
I did read your post regarding your scan and even though it’s not a welcomed outcome, knowing is most of the battle and helps us surge forward to find out what our maximum new potential is
As for the Lego I haven’t started anything yet, but the urge is starting as I wish to make a fully transverse front wheel drive technic Lego model, one I tried earlier and as things just seem easier, it’s only a matter of time now
Apologies for the delay in replying; Just spent the last few days in Disneyland Paris! It was a great distraction, however my body isn’t thanking me for it! We booked it ages and ages ago for our two 16-year-olds and nine-year-old. They are very good at looking after me so we had plenty of rests and they were very good at making sure I didn’t struggle with even the littlest things.
I purposely left it until after the holiday to look deeper into the help I need to try and get, and the existing knowledge I need to build on in relation to PD. It really did come as a bit of a shock even though we knew beforehand that the consultant suspected it might be but then also feel it could be FMD. When I had my appointment last week with him, the course of action was to start me on meds, refer me to the PD nurse, and I was to go and research my local Parkinson’s branch including PD warriors. We were kind of hoping that by the time we got back from our trip the referral letter with the meds prescription would have been with my doctor, except as of today it is still not This is really frustrating as had hoped to start them over the long weekend. Never mind. It should be with the doctor by next week.
Glad to hear the meds are sorting themselves out for you and that you’re feeling ok. You are dead right… It starts with a diagnosis to kickstart a positive course of action🤞🏻I’m feeling better about it now, just keen to get going.
Any words of wisdom at this stage? I think I might also contact the helpline at Parkinson’s UK to get some general advice. I’m also currently on contributory ESA and it would be helpful to know from other’s experience, how this affects me going forward, now I have a diagnosis?
Very best wishes to you and thank you for your kind words as always.
Glad to hear you’ve had some great family time. No real words of wisdom to be truthful other than try and get yourself as active as possible. Took me almost 3 years to get to where I am today
Not sure what the worries is, but that’ll certainly a step in the right direction and keep positive plus try not to read to much about what’s expected to happen as we are all different
I run almost every day, I’d say that out of everything that I’ve been doing, that is the best thing I’ve done to keep moving. It seems an odd one, but since being ill, running is one thing that I seem to be quite good at too. It was difficult to start with
The level of concentration just to keep your legs in motion with your arms and body can sometimes be a challenge, but ultimately very rewarding especially for your mental well being
If you do give it a go (I do the my local Parkrun and joined a local running team), and your a little like me, you’ll never look back, I enjoy the chase (catching people) and the company afterwards when grabbing a coffee
Unfortunately, still no meds yet … Despite diagnosis on the 15th of August! Very frustrating but keep chasing.
Once mobility is better, I’ve decided I’ll be walking everywhere! I have a dog, so my aim is to take her out for long walks and build up. I’ve never really been a runner, or a gym person. But who knows! I may become the next Forrest Gump!
My consultant also advised me to start a PD warrior group so I’ll find out about my nearest one. Sounds interesting!
How’s it going?
Hi @Shane , took me an hour to read all your mail. But feeling more confident and determined to get up and get going , in other words , shake myself , at 82 and really feeling sorry for myself , its been a long three years of meds and a downhill run. But last night after reading all Shane’s mail , i decided to take my med in the morning to release all the screws I went into my shed workshop and made a beautiful bird box for the garden , I felt great, and my wife says I am tons better for being active ( thank you Shane) I didn’t miss the madapor , I just didn’t need it , God bless you all Ray of sunshine ,
Looks like I’m still an anomaly as the medication has made such a difference to my life, I emailed my neurologist to tell them of my changes and a letter arrived today saying that “he wishes to keep an opened mind and the response I’ve had to the medication is somewhat intriguing”
So, It looks like I’ll be having some more tests next year, still don’t know if I have Parkinson’s though even with the benefits the medication have brought to my life.
The wife thinks I’ll be having another DaTSCAN when enough time has passed as that has been commented on within the letter
Oh well, at least I know on the meds I can take a break from my extensive exercise regimen. Something I was unable to do without the meds plus the ability to write and sign my name again (this one feels so odd and a little exciting for some reason - had to sign my name today and I still cannot believe it when I see myself doing it, it’s like I need to pinch myself) together with many other little bits which together are huge
I wonder if there is anyone else out there similar to me who could shed some words of wisdom?
Hey @Shane
So good to hear it’s going well for you
I keep thinking of your situation and keeping the faith.
I’m day 8 of Madopar- increasing the dose still, every 3 to 4 days. Tremor still there. Stiffness too. But I think it’s early days.
Doctor surgery gave me more Madopar instead of anti-d’s on Friday - didn’t realise till I opened the packet to take one on Friday- so crashed and burned last night Taking it easy today. Parkie nurse tomorrow.
On a slightly different note, investigated the PD warrior program- there’s nothing in Dorset at all!? May need to dig deeper into this.
Sorry to hear your medication isn’t having the same effect as mine. It also seems that these warrior things are maybe a little hit an miss in many areas in the UK which is a shame.
I would say, get yourself down to the local authorities gym to see if they have any classes. I started on one called “up and active” when I was at my worst. You can go at your own pace and I know the one where i use/d (still do on an off) was full of people who were/are quite a bit older than me. With that said, everyone is a great bunch and really look out for each other with age not even being a factor and like I said I only found out about it by walking in and asking a question
That’s how my exercise program started plus the fact that I’d read about vigorous exercise being beneficial which I’m 100% sure it is
As for me, I think it’s 24 months, so if I have to have another scan, I suspect it’ll be around aug/sept 2020.
One thing that has been very noticeable to others is my running times (not to mention everything else that I’ve mentioned which are mainly things I can notice) have started to change (you’d expect that from someone who’s body was working correctly at my age), but prior to taking the medication as I’d been slowing down (by quite a bit too) even though I’d been putting effort in.
I know I’m quite a complex patient, but like most, I’d love a diagnosis to what’s wrong with me and also the answer to why the medication is improving my life if it isn’t PD.
One thing that has always struck me, I was always under the assumption that if it walks and talks like PD then it probably is (which I know mine is extremely difficult from that point - hence I knew i was in for the long haul). My real conundrum on this assumption though is, if the medication follows the same improvements, does that also mean its probably PD too.
I know my neurologist didn’t expect any improvements and did mention that if we see a change in your writing we’ll know. Now he’s not reiterated that within his last letter, yet I seem to be following some of the usual patterns with writing, freer movement plus many other little things (which to me are transformative to my life). It a little bit perplexing to me
Hey @Shane! Nice to hear from you!
I’m still here! Week 4 of Madopar and I think I’m actually starting to feel some difference, in that I feel more free in my movement The nauseous is passing now thank goodness.
Seen the PD nurse who’s referred me for physio, and occ therapy. Joined my local PD support group. Taking it all a day at a time.
Glad to hear thinks are changing and moving forward (all be it slowly) for you. Wonder if it’s because of the different types of meds that we’re on that are making the difference?
I understand about the nausea, I felt it was a fair trade off, my stomach still feels a bit iffy now and then, but hey ho and all that’s eh!
I’m about the same as I was last time thanks, had some more off days where I’m completely zapped. But a trip to the gym usually corrects it which is really had but luckily I’m still very driven and I feel the benefit afterwards
I think some of my off days are because I’ve not eaten correctly before taking my meds (or taken them later or early than I ought to), so I’ve been being a little bit more strict with this side (before I allowed an 1hr as I was fed up with just eating for the sake of taking the meds). I think I’ve also figured out the timing on my meds now (hopefully at least), as my small juddering effect on my right hand as stopped.
I hope your progress carries on and you get to a point where the meds bring much more relief as mine have done
I do have to agree, I think the timing of the meds as well as the dosage, are the key.
I’ve changed my timings to 7:30 am, 12 noon and 4 pm. This seems to be much better first thing in the morning for me, although I agree with you, I can just about take a biscuit with it let alone anything else for breakfast! It seems to be good enough to keep me going although I’m wondering if dosage perhaps should increase slightly for me. I see the consultant on 7th October so I shall ask him then. Still have a slight shake even with tablets but movement definitely slightly easier. I was taking my last tablets at 6pm but my goodness, the dreams and interrupted sleep were awful! So the nurse suggested last dose at 4.
I appreciate I may be some way off feeling considerably better but I’m happy with where I am right now. I’m trying to learn how to take it easy when I need to, which is not easy for me! I will say, I so appreciate that I’m lucky in that I have a lot of support around me, professionals and family, and I don’t work so the pressure is off.
Yes, I’ve had some very bad days too. I’m very glad you’re remaining resolute with the exercise… it definitely helps you, doesn’t it
Keep going. You got this.
You’ll be pleased to know I’m signing up to some yoga and tai chi next week! Our local PD branch has some brilliant guest speakers and I’m off to coffee morning in a couple of weeks to meet some fellow young PD people!
I’m immersing myself in the positivity
Slowly but surely.
It sounds like things really are moving in the right direction for you @DT
I’m glad you’ve also found a group of young PD’s in your area, there is one in my neck of the woods too although I won’t be going until I’ve had my diagnosis confirmed
Good on you for signing up on some activities too. With luck, that will help you in other areas as it seems exercise is so important to accompany the medication
I think that there is some muddled thinking in you posting.it’s not dopamine levels that drop off but the neurons dying that use dopamine to fuel the neural system. The reasons for this drop off are still subject to conjecture and research.
Taking exercise is very beneficial for PD folk and should have no effect on your DatScan results.
It is certainly good to take responsibility for your own condition by reading up on the disease. Try to avoid feeding off individual statistics possibly taken out of context. It’s very tempting!
PD is an absolute minefield of half truths and dodgy stats. This is inevitable because nobody really knows for sure what triggers the disease and everybody’s symptoms and experience of the disease are different. Nevertheless you will find lots of useful info on this forum. Best of luck!
I think your right about the information out there. It’s certainly a mind field. I guess we don’t all process information in the same way too hence me maybe not interpreting the dopamine part as you expect, so thanks for enlightening me a bit further. I’ve been lucky enough to be speaking with another member on here who also runs and they have very helpful in giving me a few links for people who do quite a bit of exercise like myself (this seems quite a rare thing anywhere). It’s been quite a relief and quite informative as these of from people with Parkinson’s and not scholars who have seen in part with what I’m experiencing
Saw you’d posted in another thread and I just thought I’d ask how you are getting along?
I see my neurologist in a few weeks to see what he says about how I’ve responded to the medication and his verdict about my condition. It’s certainly a funny one for me, everyone who knows me says they’ve seen a real change in the 8 months I’ve been taking them and I certainly feel more like I used to before things went shall I say, a bit wonky
Certainly feeling a little trepidation creeping in to which is to be expected I guess. I’m in two minds about the medication to. They’ve helped me so much, but I’m also concerned about the long term prognosis on them (as many people are), yet the difference they’ve made is quite remarkable and the thought of going back to that daily fight plus everything else that went along with it does fill me with a dread, but is the short term gain the right attitude to have considering it could be a long term fight.
I guess, I’ll have to wait and see what my neurologist says going forward. It’s very odd as I felt more positive before than I do now and I just wonder if that’s because I hadn’t tried any medication before hand and now I’ve reacted to the medication, what does it really mean. Can the drug help with other conditions and I’m just seeing the benefits or does it really mean that I have PD
This is really frustrating as had hoped to start them over the long weekend. Never mind. It should be with the doctor by next week.
you’ll feel the benefit and the meds may just stabilise you over time
as the medication has made such a difference to my life, I emailed my neurologist to tell them of my changes and a letter arrived today saying that “he wishes to keep an opened mind and the response I’ve had to the medication is somewhat intriguing”
Taking it easy today. Parkie nurse tomorrow. 
The nauseous is passing now thank goodness.