Any point in the medication for me?

About Parkinson's and health Newly diagnosed
1

Hi. I was newly diagnosed last week with PD.
About 2-3 years ago the symptoms started, all on the left side of the body, arm tremor and “wrong” swinging of the arm; then more symptoms the following year: wrist turning inwards and knee bending and poor quality of walking, (the tremor improves as the day progresses but it’s the opposite for the knee bending). Also foot clawing was the most recent one to develop but it only really happens when walking in my local towns, but doesn’t really happen when walking on foreign hols!

I should point out that I have other neurological conditions including sciatica for 13 years and 90% of the problem is with the left leg. I had a failed nerve root decompression in 2017 so now am not getting treatment and just get on with the fairly debilitating pain. This condition rules my life more than the others.
I also have a cervical spine disease whose symptoms started a couple of months before those of the PD. The symptoms started with tingly fingers and a crushing feeling in the wrist. The following year I developed a perception that I was going to fall over and indeed I had a couple of falls that luckily didn’t result in major injury. I had a neck operation 12 months ago that got rid of these symptoms.

I also have other symptoms: arm droop, foot drag, reduction in arm motor skills, arm weakness particularly when I’m lifting the arm up, and to me it’s unclear whether these come from the PD or from my cervical spine problem, and no doubt the consultants had to be careful with my diagnosis: they concentrated on my cervical spine first before looking for a brain problem.
In conclusion I am in my mid 50s and have 2 conditions that are attacking my mobility.

What I can’t do now: put up wallpaper, do 2 finger typing. Changing gear and pushing in the clutch are difficult but doable, but soon I will get an auto car.
What I can do: climb hills and walk over arduous terrain, drive. But most tasks especially needing arm/hand skills are about twice as slow as before.

My neurologist told me, once the final confirmatory diagnosis is done, they will try me with meds.

So my question to this forum is, if I can still live my life independently and partake in my hobbies, is there any point in meds for me? Especially in the context of possible adverse side effects (will the treatment be worse than the disease?). As I understand it the meds don’t cure or slow the disease they just try to improve on the symptoms, and there’s no guarantee here. Has anyone experienced a big improvement in the symptoms on taking the meds?

I have experience here: a consultant put me on duloxetine, an antidepressant, for my sciatica and after just 1 pill and a few hours the side effects were worse than the disease, so I took no more and had a bit of a battle with my GP. (Only 1 patient in 5 on duloxetine has a significant reduction in pain, but only after building up the dose to 4 times what I initially had)

Thanks.

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Hi Mountain Man,

Drug therapy is always a tricky one to answer, it is very personal to each PD sufferer.
Many will swear by their drug regime others never seem to get the right combination.
Personally I have not started any medication, I believe this is right for me at this time. I do not like the sound of the side effects and believe exercise is keeping me healthy. That said I will never say never as who knows what the future will bring.
Talk it through with your PD nurse, if you have one!
In the end it is your decision, what suits you as every PD sufferer will tell you we are all so different. Different symptoms, support and drug regimes.
Hope this helped
Good luck
Annie

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Hello,

I share many of your symptoms. Personally I would definitely try the meds. Although Sinemet is not a cure, I find the improvement in my walking, arm swing, fine motor skills, including typing make all the difference. I have no side effects at all from Rasagaline or Sinemet. Although I have now had PD for six years, I can live a normal life. I am not without symptoms, but find ignoring as much as possible my way of dealing with it.

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Hello, I have to agree with the comments already made even though one isn’t using meds and one is. As with so many aspects of Parkinson’s you can get advice, information etc etc but ultimately only you can decide what’s right for you. For me meds have been my chosen route and ten years on I’m doing ok. For what it’s worth, and it is only my opinion based on what you have written, if you are managing your life sufficiently well without meds then maybe you should carry on and decide later if things change. I would make one point for you to ponder on. It is true that the side effects of meds can make dire reading and be very off putting, the balance to this is how much your quality of life is affected by not having meds. PD is a chronic condition that will deteriorate over time. You will probably find as most of us do that there is little point in worrying about an unknown future which will be what it will be. The important thing is to have the best quality of life you can at any stage and if meds help this then should be seriously considered. Don’t miss enjoying your life today or making things more difficult than they need be because the long list of side effects influences your judgement on whether to use drugs or not. It is of course a consideration but I believe it must be considered only as part of the bigger picture and what is important to you in terms of quality of life. Your own situation is complex and no doubt makes decisions even more challenging. Be honest with youself and stay true to your self and you will make the decisions that are right for you. Good luck, I wish you well.

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Good morning all,
Really interesting views here - I was diagnosed just 10 weeks ago, I’m 40 years old, in pretty good health. My symptoms aren’t too affecting at the moment, but I do have slightly reduced arm seeing on my left side, I notice a little foot drag from time to time, slight tremor but I try not to pay as much attention to it now. What I mean by that is that when I was waiting for a neurologist appointment, I was monitoring my symptoms almost obsessively, as if I was trying to convince myself that the symptoms were minor, going away. I think I was in a bit of denial at that point.
I decided after the initial shock and upset of diagnosis had passed, and talking to PD nurse and doing my own research, that now isn’t the time for meds. I too was a bit concerned about the possible side effects kicking in, and I know I will have to use medication at some stage but for now I will try and rely on exercise and trying to keep a positive attitude. I have been affected by anxiety and mild depression in the past and I don’t want to go back there. It seems there is no right answer, just what you feel is right for you at the moment.

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Hi All,

I am 54 and was diagnosed May 2019.
I have not started any meds yet either, mainly because I feel I am still getting by fine, and I have had no previous history of taking any medication. I think I have seen, especially in older people, a morning breakfast of a cocktail of drugs, and the dosage seems only ever to go up accompanied by a long list of side effects.
My main problems are reduced motor skills in my left (dominant hand) and dystonia in my left foot.
This negatively affected my two main hobbies of playing guitar and road cycling.
I have found some new exercise interests. The first one is a really good non contact Boxing for Parkinson’s class, which is really good for big fast arm movements and trunk/lower body balance.
The second one is playing table tennis, which is fantastic fun and great especially for arm movements.
I have also discovered the Parkinson’s Cup, a seven a side football tournament that will happen in April in Worcester. The organisers are putting together teams on a regional basis.

The upshot of all this is that it has given me a lot of positivity and confidence, and is already making my left arm/fingers feel better.

I have also just recently taken part in day one of the First Steps programme.
When I spoke to someone there about the meds issue they suggested you could always try going on them and then come off if you don’t think it is doing it for you. Which is a fair point.

I just don’t feel I have heard a conclusive argument yet to convince me to take medication.

Keeping a totally open mind…

Scott

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Initresting thoughts here. I am 50 and was diagnosed just 3 months ago. I am on 1mg of Rasagaline which is I believe a very small dose. I too am concerned about possible side effects of meds. And I am not convinced my meds are doing anything to change my symptoms (which are very mild anyway). I am keeping up a regime of exercise including badminton, cycling and running - I am convinced this is what seems to help me most. Like everyone else said, your PD journey is unique.

Cheers :grinning:

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Hi Scott
I too was diagnosed in May 19 and to date have not been blessed with your positivity.

Your post has inspired me. Thank you

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Hi RockhopperDee,

May 19 is still not long ago and I bet you are like me in that you think about this condition every day.
It is a big thing to come to terms with.
Enjoying your time in the here and now is your top priority.
Remember, no one knows whats around the corner, for better or worse!
There seem to be a lot of interesting research stories ongoing at present.
Medical science will one day find a cure for this.
Good luck in finding your spark.

Scott

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You sound to be extra sensitive to meds, like I am. The reactions to some scare me away from any that I can’t live without! I was diagnosed 1998 but I recognized the symptoms in 1993 and never went to a doctor until 1998. I still do well with the PD symptoms, fibromyalgia pain is what gets me and now my 74 year old knees. I believe I chose right and would do it again. But it is each individual choice. I have found CoQ10 and Coconut oil to help me too. Do as you feel is right for you.

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Afternoon all,
I have found this forum really helpful in understanding a range of views and experiences when it comes to PD.
I was diagnosed a few months ago, and I made the decision to put off medication and do the very best I can to maintain a disciplined exercise routine and a positive attitude to life. Though my symptoms are mild at the moment, I am aware that things can change quickly with a progressive condition.
I feel increasingly reassured that this is the right thing for me just now, I turned 41 yesterday and am just taking things step by step.
All the very best,
Daniel

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Hi Mountainman

I am 54 and was diagnosed in February this year.
My intention is to delay the meds for as long as possible as I’m aware of the negative side effects they have.

My approach has instead been to address the symptoms in a comprehensive way. I mean by that in targeting the imbalances between my body and my mind.

This means as far as the body is concerned a lot of exercises ranging from yoga, Pilates and walking every day. It’s also means working on my diet; avoiding alcohol, greasy and sweet foods.

As far as my mind is concerned I have been meditating regularly and looking at past trauma that I’m trying to address through psychotherapy and autogenics.

I have also started medical qigong courses and healing sessions. I believe that western medicine has so far failed to clearly address Parkinson’s disease. I also believe that PD had probably existed for many hundreds of years but not been recognised as such. I am therefore turned to traditional Chinese medicine.

It is clearly still early days but I will keep this forum informed of my progress in particular if it can help others.

I would be keen to speak to other members who have decided to address their symptoms in a non-traditional way.

Michel

14

I ended up on meds as my symptoms were insidiously worsening. I am on a very low dose just now of sinemet (or the generics) 12.5/50 single tablets four times per day. There are no side effects except more dreaming and unusual dreams. But I had no improvement for at least a month, until pushing in the clutch with the left foot and changing gear with the left arm suddenly became easier. Nothing else has improved. My PD nurse said she is going to try me with dopamine agonist to see how that goes.