Hi @Shane
So nice to hear from you, so sorry for the delay in replying…
It’s very understandable that you’re feeling less positive given that you’ll be seeing the consultant very soon to discuss the whole situation. You must remember, you have come a long way in this time, and the results don’t lie! If these meds need to continue in order to afford you the best quality of life, then sobeit. You’ve also been very positive about the improvements… whatever happens at that appointment, whatever the ‘official’ outcome, I am sure they will continue to support you in making sure you get the best meds. You’ll be absolutely fine… keep adopting that positive attitude and continue to feel as well as you can be!
As for me, well, the good news is, the levodopa has definitely helped the general movement issues, and the right hand shake and continues to do so. It initially helped my curling toe problem, internal shake and stiffness in my upper body - but these symptoms are now back. I get tired quickly. But my biggest issue is sleep (waking during night) and associated, horrendous dreams, mostly death-related, or extremely negative. They prescribed a small dose of clonazepam, a sedative, but it doesn’t seem to be working. The trouble is, the day following these dreams is awful and I cry most of the day and feel particularly low. Not nice.
The good news is, I’m due to see my neurologist on the 23rd so at least we can review and amend! My physio therapist is amazing, she’s started me on the PD Warrior regime now and I’m walking my dog every day.
Slowly but surely.
Currently reading the Michael J Fox biography…very entertaining and postive. He writes so well. It’s a good distraction!
Please let me know how you’re getting on.
Very best wishes
Thanks for the positive words and your absolutely right.
Sorry to hear that certain things have not improved in ways you had hoped. I’ve had a few of the dreams and I’m glad I’m someone who historically never remembers dreams (the ones I’ve had involve my children and death too. Just horrible).
When I was electrocuted many years ago, I just started crying and I was told this was PTSD, I wonder if something like this is happening to you because of the dreams. It’s a really hard thing to explain why it happens. I know with me, mine was triggered in the place of work where it happened and I was able to see myself being electrocuted. I started to shake and cry uncontrollably. The first time it happened was about 3-6 months after returning to work. It was very scary as I didn’t know what was going on.
So maybe ask your neurologist as I suspect that there is no reason as to why it couldn’t be something like PTSD if the dreams are as bad as you say and your reliving them through the day
I’m glad you found PD Warriors and with time, I’m sure it has to help. I’ve also heard that it can take a long time to get the right combination of med to work, so just keep at them until you get somewhere.
I know I had a ruff time with one of the brands of Co-Careldopa and the chemist mentioned that it will have been the filler they use to make the tablets. He placed a note on medical note to not give me those again.
I think I understand the tiredness to a degree (although I’m sure mine are not as bad as yours). Some days I can be spent before I’ve even started. I’ve found these are the toughest days to push through with my exercise program, but once I’ve managed to push though, I do feel better for it. If however there is an easy excuse, especially when it involves outdoor activities, any easy option usually wins (since Jan/Feb at least), but I’ve also noticed a drop in my wellness to, so I’m now concentrating on the gym to get myself back to where I was in November (or as near as I can)
Good luck on the 23rd and let us know how you get on. If you don’t wish to do it publicly, you can always send me a private message (in fact if you just need to talk and get something off your chest for any reason, the offers there too)
So, still no diagnosis although my neurologist was a little different in his attitude (not that it was ever bad) as there had been a change in how I was previously. He’s keeping me on the medication for another 8 months (was going to be 12 until we talked about new symptoms)
He did mention that as I don’t look like someone who has Parkinson’s, I shouldn’t have had any improvements whereas I have. He mentioned something might be wrong with my dopamine receptors (but only in the word).
My 8 month continues trial is to see if I improve or get new symptoms. If I’m still somewhere near, then I’ll have to come of the medication to see what happens (which is fair enough). It seems as though he’s wanting it to show it’s self although he did mention only time will tell in my case.
If I don’t have some of the classic visible symptoms of Parkinson’s, it’ll be another DAT scan and maybe some others although he mentioned he hoped that wouldn’t be the case
So, some positives in this visit even though I haven’t been diagnosed yet
Sorry for the delay lovely, not been on the forum for a week or so.
So it’s good news that they’re going to keep you on the meds. But not so great news that they can’t give you a definitive diagnosis. As we all know, this can be the most frustrating and anxious aspect of it all because until you know what you’re dealing with you can’t properly move forward. Knowledge is Power. But in the meantime, you need to keep going. Eight months will fly by and you’ll be able to see where you are. Don’t look beyond that time, just keep doing what you’re doing and I’ll see where you are then. It’s certainly is interesting to follow your situation.
And keep pushing yourself. The Lego building is fantastic! And you’re good at motivating yourself so keep going!
Thank you for your encouraging words before. I know where you are! As they say, it’s good to talk! I have a neurologist appointment on Monday. Some of my original symptoms have returned☹️, So it will be interesting to see what happens to my dosage from Monday. Sleep, or lack off and incredibly bad dreams have been and still are my nemesis so I’m really quite keen to get some answers as to how we can try and curb this. As we know, lack of sleep definitely makes the exercise harder!
Hi @Shane
Good to hear from you
Unfortunately my appointment was cancelled as expected. No worries though, it’ll be rescheduled eventually! In the meantime, I have a good supply of my Madopar, clonazepam and citalopram so all ok
Sorry to hear about the appointment, but I’m guessing your probably happier not going. I know I was in Manchester just before everything got a bit more serious and as my wife nor me drive (I lost my license because of this illness ) we had a bus 50 mile round trip, it’s been a scary few weeks waiting to see if either of us get ill
It’s become a real problem running too as many people just don’t get it (in fact it’s infuriating me as I’ve always said, I don’t look like someone with Parkinson’s), made myself a bit poorly because it by running in areas which are just to much for me. Gastric fluid issues again messing with my throat. Seems fine now thankfully after a few days rest
I’m amazed at all the meds your on at the beginning. I’m guessing that’s because they haven’t managed to settle you fully yet
Keep safe @DT and that includes your family and friends too
