Hello all,
Starting with the basics, I’ve recently turned 64, I’m a wife and mother, specifically mother/sometimes carer to our 37 year old daughter who has Down’s Syndrome and a dodgy heart. Although she is in supported living these days, she gets precious little support, so we are still very much involved in her life, with frequent home visits, family trips, etc.
My husband should have retired last year, but has put that off until the end of this year, to see a big project through. Lots of stress and long hours.
I have a list of health conditions as long as your arm, the most recent event was my second hip replacement in July. Oh, and getting bouts of sciatica wiping my legs from under me.
Now to the more relevant bit. On April 2nd 2024, I woke up with a tremor in my right hand/arm (dominant hand). It wasn’t shaking the day before. I have problems with my back. The lower back and hips have been investigated, diagnosed, and either treated or written off. My upper back/ shoulders haven’t been investigated, yet still cause problems, so I put this down to a trapped nerve. After no change, I saw my GP on April 9th. She checked with the local physio and decided neuro was the way to go, and sent off the referral. My GP had commented that the tremor was happening at rest. Her referral mentioned cogwheeling. Dr Google was consulted when I got home and I was introduced to the murky world of Parkinson’s. The more I read, the more odd things fell into place - noticing my arm not swinging several years before; a decrease in my sense of smell; talking, shouting, and hitting out in my sleep (apparently, I was freaking out some of the other patients in the same bay after my hip op, by muttering all night).
On November 15th, I was seen by a registrar who took my medical history, examined me, and concluded that she thinks I have Parkinson’s. However, she didn’t like the waking up with it, and ordered an MRI to rule out stroke. She suggested taking levadopa. Sorted out that I would get that from my GP dispensary, then dropped in that it would be very unlikely to help with the tremor! At that point we were interrupted. An angry patient was complaining about his appointment being late (we were seen over half an hour late). My appointment was ended immediately, so I didn’t get chance to ask why she thought this wouldn’t help, and what was the point of taking it? The Parkinson’s UK helpline got me in touch with a nurse, who couldn’t understand the comment as levadopa is the gold standard for tremors.
With Christmas fast approaching and lots of things in my diary for medical appointments, daughter’s opticians, visiting family, etc., I decided to put off the decision about the meds until January.
I have an occasional tremor at rest in my right leg now, and I keep finding my toes scrunching up. My toes on both feet seem to be uncomfortable. I have now been to a support group, had my MRI and the all-clear as far as stroke goes; I am about to see the specialist physio on Monday, and I have my appointment with the PDnurse for an assessment on the 30th. That will, hopefully, be when I get some answers/assurance about the meds. Then all I have to worry about are the possible side effects which terrify me.
Good evening Indie … Sorry to hear you are having all these stressful things going on in your life.
I am 70 & have Atypical Parkinson’s diagnosed following a positive datscan in
June 2023.
I first tried Madopar, I stopped this after 7 days due to my head feeling hot. I then tried Ramipril & stopped that after 10 days. I am now on Sinemet aka co-careldopa which I have been on for about 6 months. I started at a low dose & worked up to the 6 pills a day I am now on. I genuinely find it helps.
I have had vivid dreams & sleep issues with the Sinemet & take additional pills for that. Overall I am better off taking the medication. If you don’t get on with your medication you can stop it after telling your Parkinson’s nurse / GP.
One of the ways we know we have Parkinson’s is if the medication works.
Best wishes
Steve2
Hi
I’m currently taking co careldopa which is levodopa and another drug. I was told by my PD nurse that this is one of the most effective drugs they offer to help ease symptoms of Parkinson’s but that a tremor is one of the most difficult symptoms to counter.
I have a tremor in my arm and my leg drags a bit when I walk. Since taking meds my leg has improved and my arm feels less stiff but still at times shakes.
Hi @Indie , I have tremor as my dominant symptom but found that co-careldopa (sinemet in my case) was very effective in alleviating it. However after a couple of years I did get side effects of severe diskynesia. I’ve recently had DBS surgery which has eliminated the tremor completely and also the diskynesia.
Hi Steve2,
I’ve been reading loads of posts on the forum, and that’s the first time I’ve heard of Ramipril associated with Parkinson’s instead of blood pressure. Trying to get my head around all the meds being mentioned makes it swim!
I’m keeping my fingers crossed that the Madopar works.
Indie
Hi Singing_Gardener,
Congratulations on the DBS working so well for you. Long may it continue.
Indie
Thanks, JD2024. I guess I need to learn to allow for some hope.
Indie
Morning Indie … I meant Ropinirole … But I am also on Ramipril for high blood pressure. Good spot.
You are more with it than I am.
Best wishes
Steve2
Good morning, Steve2.
I really don’t know that I could go on to any of the dopamine agonists. I’m too afraid of the side effects. I’m far too impulsive already. May I ask how you have got on with them?
Indie
Morning Indie … Apart from dreams, nightmares, sleep deprivation I really have not had a problem with impulsiveness. I’ve only ever bought what I need, no overeating of anything. Nothing really. It is important to be on medication as I’m told it slows down the disease. BUT if you are untroubled by the symptoms you currently have then a delay may not harm you. Do ask your Parkinson’s Nurse.
I get freezing episodes where I can’t move. Before Sinemet I had a bad episode & ended up in hospital for a day.
Best wishes
Steve2
Oh dear! I’m glad to hear it was only a day.
At least, with the wealth of drugs the medics throw at this condition, they seem to find something that works.
Indie
Hello Indie
I was just catching up with a few posts on the forum and yours caught my eye and I felt I had to respond to it. You clearly have an awful lot going on aside from your own health problems so it is hardly surprising that you are feeling somewhat overwhelmed with everything - which is not an uncommon response in someone newly diagnosed with Parkinson’s. If I am reading your post correctly the main issue is yout concern over the possible side effects of the medication which to use your words ‘terrify’ you. It is worth remembering that all medication, even those you might buy over the counter for something as simple as a common cold, have side effects, and in that Parkinson’s meds are no different. It is also true that not everyone will experience side effects of any medication, prescribed or otherwise, and if you do the severity and impact will differ from individual to individual.
I don ‘t deny that the side effects of Parkinson’s medication can be awful but, as you will have seen from earlier replies, changing the dose or even the brand for example can make a big difference. Ropinirole for eg, often comes in for a lot of criticism but I have been taking this drug successfully and with no undue side effects since my diagnosis 15 years ago. It’s horses for courses - finding what suits you.
The fact is there is no cure for Parkinson’s and so the current treatment is symptom control and for most that means medication which for the most part is very effective and gives you back a quality of life you otherwise will not have. There is no doubt that the whole issue of meds is a complex and challenging one that needs to be considered carefully including if and when the time is right for you to start (or stop) taking one drug or another. Ultimately the choice has to be yours, but don’t get so caught up in the list of side effects that you are talking like they are a given, they aren’t - and you may not get any.
Best wishes
Tot
Hi Indie
I’m avoiding dopamine agonists too because of the risk of ICD. I just learned that there is also dopamine agonist withdrawal syndrome.
Re meds the joyrney for everyone is different. The question is what is right for you.
I’m taking rasagaline which is an MAOB inhibitor.
I’ve also just started looking at B1 protocol and will duscuss with my neurologist.
Sending light
Hi indie i was diagnosed in2019 i take levodopa for my tremor no use at all but keeps other symptoms at bay i take propranolol for tremor 80mg twice a day this helps my tremor i also take neopro patch for restless legs which at the moment doesn’t help, there are loads of side effects but i dont get any only vivid dreams if i take meds at night if your unsure there are lots of people here who help about everything so you’re not alone
I would suggest looking at alternatives that can help pd , information on YouTube.
Red light therapy aka photomodulation.
Keto diet for Parkinson’s, works well and you could include intermittent fasting which helps the cells in the body cleanse via autophagy. And last but not least exercise as best you can even small walks can help.
Have a look you may be surprised. Good hunting .
My thought is not to get caught up with internet treatments. Always check any treatment with your neuro or PD Nurse. Many internet “treatments” end up not improving Parkinson’s or extending life but emptying pockets of cash and filling them with disappointment.
Doug
Hi calv1960,
Thanks for your reply. Unfortunately, I can’t take beta blockers. It’s a go-to for A Fib, but they had to go for a calcium-channel blocker instead due to asthma. I’ll have to keep my fingers crossed for the Madopar. 
Indie
Hi Douglas,
Thanks for the warning. I’m on Warfarin, amongst many other meds. This interacts with so many things, especially food/supplements, etc. (usually all the ones that are meant to be good for you!). I’m not going to be expecting anything to work! I haven’t listened to the Movers & Shakers podcast yet, but I’ll see what tech they’re testing in yesterday’s report.
Indie
Hi Lar,
Thanks for the suggestions. I’m afraid the diet/fasting is a non-starter, being on Warfarin.
I’m keeping a look-out for devices which get the backing of the PD community. Things like Cue+ and Beech Bands would need to prove they are safe with a cardiac arrhythmia, for instance.
Indie
Hi Indie I have had PD and other illnesses 2010 and after being told that I had PD was not a shock? The reason I must admit
did not know anything about it. I also had a lot going on as my father had passed away My mum still lived in same house but found out that she had dementia. so each day we went to check on mum, so i can see that you have yours hands full, this is just what i think?? meds we all could give you a list as long as your arm BUT??>? what suites one just might not be tight for you. A lot of PD folk have REM when they sleep, do check with Doc.nurse as this is Rapid eye movement and you can live your dream. My hubby has this but does not have PD but it is one of the things that we might have, It took 7 years to find out about REM> sorry back to your case, I think you need a little help. With what you have not only illness but hubby and daughter you are having a lot to cope with (I know us women are good but there is a cut off) I would get in touch with your social worker (she will be registed with your council) I know some times we cock up our noses at social worker’s but they will give you advice and help, and as we get older we should be trying to enjoy life, I found when i contacted my mums social worker she was so helpful so when i need help i got in touch with mine, and they listen, ps Drugs when you see your PD nurse they have been trained to put some drugs together and know what goes with what,
Indie do please stay in touch as all the Forum member do care.