All the above comments are valid but what is really needed is a quality service of well trained Parkinson’s specialists who are forward thinking but most important of all it should be consistent countrywide. None of us should have to resort to these measures.
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I couldn’t agree more!!!
It should be the same across the board and honestly it was a total nightmare continually swapping from Neuro to Neuro because each have their own ideas…
Its about finding who you connect with. Our consultant works for us because we like the idea of trying new drugs and seeing what works, and that only worked because my husband was only 41 at the time and he wasn’t happy with constantly hearing about new drugs but not being able to try them.
I equally believe that we have some superb NHS Neurologists…strangely the Neuro we saw privately at the QE in B’ham we also saw on the NHS years later…no difference in service or how they treat the condition. I suppose my point is…don’t write off anyone…private isn’t always better…just find someone who fits with how you want to treat your Parkinsons.
Best Wishes
Beth
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Good morning Beth thank you for your advice and experience. I think that the medics must have a formula because your appointments are very similar to mine. I am currently taking Sinemet selegline and SR Sinemet : 6 times a day 75 mg per day. I think this causing stomach problems and pain but the only answers I get are they are not connected and I have had two ultra sounds which were negative. It is frustrating and exhausting trying to find my own solution. I think I have bought out the chemists stomach products. However I will struggle on .
Best wishes to you and your husband.
Hiya,
That sound like a good combination…My husband is not allowed agonists (Selegiline) at all now as he is in the minority who do not react well to them at all…
Our biggest annoyance of late has been dyskinesia…The reason I say be careful with self managing your dosage of Sinemet and even more so with agonists is you will be the last person to realise something isn’t right.
You can get addicted to that high of being “on” when your symptoms are better and you feel more “normal”…and before you know it you’re double your recommended dose…not a good place to be.
It will also make your dyskinesia worse and increasing Selegiline could give you stomach pain or stomach upset so Id maybe bring your dosage back to were it should be for a few months and talk to your Neurologist about possible medications for the dyskinesia you mentioned earlier. My hubby is on Sertraline 50mg in the morning and 50 at night for his and its been brilliant for him.
A couple of options to discuss with your Neuro might be:
-
Can you try a different agonist? Its not uncommon for people to change the agonist and Selagiline is absorbed through your gastro intestinal tract so if there is something in it that your body just doesn’t like…ta da…its going to kick off!)
-
Would it be possible to try a booster ( like Oppicapone) instead of an agonist?
Let me know how you get on!
Best Wishes,
Beth
Dear Beth
It makes me a bit weepy that you have taken the time to write to me. I have felt adrift for some time and having lost my father to Alzheimers in January this year I do not seem to be able to get the “black dog” off my shoulders. However your suggestions are uplifting to me. I suffer from dyskinesia for some years and find driving very difficult (I have an automatic with hand controls) which isolates me more. Have you managed to get rid of dyskinesia completely I would love to drive when I want and not rely on friends and husband. I will certainly flag up to my Parkinsons team your suggestions as they seem unable to help me at present. I would also add to anyone who thinks I may be a “pain in the backside” to my medics that I always take a print out of my diary and have questions printed - my husband takes notes because I find each appointment an ordeal (white coat phobia!). Thank you once again for your time and kindness. By the way how old is your husband? I have had PD for 12 years and in the early days felt almost well but latterly its all I can do to get up in the morning and I do not want to take anti depressants at this stage.
from a grateful Carol
I don’t think selegiline is an agonist - it is a MAOB inhibitor. I’m on rasagiline, which I think is the branded version of this. The dose is nearly always the same as well I think and doesn’t get increased with time.
Welcome to the confusion thats PD meds! Apparently its both!!!
Selegiline is a selective inhibitor of MAO-B , irreversibly inhibiting it by binding to it covalently. It exerts effects by blocking the breakdown of dopamine, thus increasing its activity.
and then
Dopamine agonist . Selegiline has been known by many names. Selegiline hydrochloride is the official United States Pharmacopeia (USP) drug name, but most clinicians know it by the older name, l-deprenyl.
Im going to take a hard pass on guessing which it is but I think the fundamentals of its usage might be the same??? Basically clearing the way to allow as much dopamine to reach the brain as it can.
You gotta love the fact that there is no straight answer! Grrrrrrrrrr Lol
Best Wishes
Beth
Hi Carol,
Im so sorry you have such an awful time of things. Sometimes it can feel as though that black hole will just swallow you whole and you want to scream for the top of a mountain to make people just listen to you and this is kind of what I meant earlier…dont settle, why should you?
We haven’t got rid of his dyskinesia but id say its halved…he can sleep now (as can I) and hes not dropping stuff all the time…it gets worse within the first hour of him taking a dose then calms again, and it gets worse if hes concentrating or is watching the footy!! Lol
My husband is 60 this year…When we met he was 40, diagnosed at 41, and they say you have had Parkinsons for about ten years prior to diagnosis so…he was quite young
For the first 10 years after diagnosis he was fairly unaffected and I was convinced he was misdiagnosed…he just had a slight limp and no swing in his one arm when walking but literally at year 10 his symptoms began to become more bothersome.
As for your comment that some people “may think you’re a pain in the backside to your medics” Id say no one here would think that as everyone has their own hill to climb…
I am vocal and passionate about this because I think this b*****d of an illness has taken a lot from him and I refuse to let it take his voice, his right to feel that he is being listened to and feel that everything that can be done, is being done, and yes I had to fight and no it wasn’t easy but the difference between where we were 10 years ago and where we are now…the fight was worth it, without a shadow of a doubt.
Always here if you want to chat, wishing you and your husband all the very best x Please do keep us updated, Id love to know if your issues get resolved
Beth
Thank you - I didn’t realise that I probably had PD for ten years prior to diagnosis that made me 56 and makes sense as I was under hugh pressure from my job as knowledge manager to an international shipping company. I am convinced stress has a lot to do with how you contract PD.
Will discuss with my PD team and will certainly keep you informed if I get help …
Carol
P.s. My dyskinesia
gets worse when I watch the rugby lol
Hey Carol,
Id love to know what triggers PD as I think would most scientists…
We looked back 10 years prior to hubbies diagnosis and we pinpointed it to a trip he went on to Nepal and had really bad heat stroke and I often wondered if that was the trigger?
The theory is that the dopamine in the brain is dropping but you initially don’t notice until around the 10 year mark when the dopamine drops to a level that you start getting symptoms and think “hello what’s happening here”
Good luck and I look forward to hearing how you get on
Best Wishes
Beth
Hi all , .
I was reading through all your discussions and it was quite interesting. As @Beth13 mentioned you won’t experience the symptoms of Parkinson’s disease until you lost around 50% of dopamine levels. So you might be started your symptoms long time ago but not noticed.
I am 43 years old and diagnosed 2 years ago. But I have been told by someone arou nd 8 years ago that my voice has changed but didn’t take into account. My husband always tells that I had less sense of smell and I blamed him and said he has over sense of smell. I had stiffness and pain on my affected side shoulder and put it down as I am getting old because I didn’t have any health issues until this diagnosis. But now if I see any of my patients with any suspected symptoms , then I will take time to explore more and give them advice.
Learning new things everyday…
Thank you
tinku.