Uniquely yours


#1

It is widely accepted that there are classic symptoms of PD.

For sure there are variations as to the degree one is affected eg tremor can be more prevalent in some pwp.

Generally speaking anyone with experience of PD can spot a fellow parky exhibiting the classic symptoms.

However, when it comes to treatment we are "unique"

How can that be?


#2

It is a good question. My thoughts are......

Most of the classic symptoms are motor effects. Non motor symptoms are important but much less visible.

It is easy to spot the classic symptoms if  you know what to look for but that doesn't help  you spot the people who are affected in other ways. I know some PwP that exhibit no symptoms detectable by the casual observer.

There are broad classifications of Parkinson's and this was very eloquently explained by Dr Michele Hu at the Parkinson's UK Royal Institution Lecture in November. Watch again at : http://youtu.be/Keuy__i-d0A A good understanding of this is critical to targeting some of the newest ideas for treatment to the right people.

EF

 

 

 


#3

Hi EF thanks for reply.

whats your opinion  on uniqueness, its a  phrase often bandied around.

how can it be measured; we are generally the same or surely nothing would work eg anti biotics

rather than we are unique i would say some of our drugs require better management than most levodopa timing and food intake can be critical

also the vagaries in preferences of particular drugs by neuros and patients lack of knowledge add to the mix

perhaps research into better management of our illness could point the way to better treatment

I welcome your thoughts and anyone else who wIshes to comment

L


#4

Hi, thank you for sharing this video EF.  I am a current participant in this research programme and have attended two appointments since my diagnosis in June 2011.
It was really interesting to see how results are being analysed and data collated to put us into 'groups' in the hope of giving better medication to those who would benefit.
However, I still think there is a lot of work to be done with neuros and Parkinson nurses to work together in the view of medications prescribed.  Why are newly diagnosed patients given such a wide variety of medications?  Why are some asked to 'choose' what medication they want?  I have personal experience of my neuro saying one thing and nurse suggesting another.  I was on 3 sinemet plus plus one azilect which I felt not enough to see me through a day.  One professional talked to me about splitting sinemet and spreading it out or maybe take a fourth tablet.  Another advised madopar, sinemet plus and rotigotine patches.
I do think the personal management of medication is important and I have always took my medication seriously and sought advice from fellow users which has helped me tremendously. I am careful what I eat and when I eat, I rest when I need to.  I know triggers that will effect my medication I.e tiredness and stress.  I delayed taking medication for as long as I could then started on 1 mg of azilect and a low dose of Sinemet plus and now take 4 daily, which gives my a good quality of life.  My Parkinsons luckily, I believe , would be classed as slow progressing.  How would I be now if I'd followed 2nd persons advice? I don't know.
Why is mine slowly progressing? do I do anything different to make it that way? Or is it a uniqueness.  I think part of this research should look at the different groups of 'levels' and ask what medication they take, when they take it, what their diet is like, what exercise and motivation they get.  

ali

 


#5

Thank you, elegant fowl, for that link.  It was an excellent lecture.  Particularly fascinating and new to me was the division of PD patients into types with varying degrees of specific symptoms.

It's good to catch up on research also.  Thanks again!


#6

 

I'm glad you liked the video. There were two other presentations that evening, both well worth watching. I'll post links to them too.

The suggestion that we each experience Parkinson's in a unique way is a bit of an overstatement but it serves as a reminder of two things. Parkinson's is a complex blend of symptoms not all of which are well understood. As people we value different things in life and that affects the choice of meds that we use. 

 

 

 

 


#7

https://www.youtube.com/watch?v=aECcGjpF5dM


Here is another one of the excellent presentations at the Parkinson's UK Royal Institution Lecture. Dr Alistair Noyce leads the PredictPD study which is searching for biomarkers that will allow earlier diagnosis. This is likely to be critical both to better understanding of the early phase of the condition and to making treatments more effective. Preventing degeneration is likely to be easier than reversing it.

These lectures are also featured in the latest issue of Progress

EF


#8

"As people we value different things in life and that affects the choice of meds that we use. "

I dont understand how different life values affect medication choices?

i have never had a choice in my medication and I have never been asked what I value in life either.

I do know  of others who were given the choice of medication on the day of diagnosis,  which seems an incredible thing to do.

Based on the 50 or so pwp  that Ive met over the years I would say the variety of medication and the treatment process varies wildly across the UK and the information given to pwp is very hit and miss too.

It is difficult for neuros when prescribing because the information they base their treatment on is based on feedback from the patient. Just because one patient is doing well on the day of a clinic and another isnt can be for a variety of reasons, even if both are recieiving identical treatment and were diagnosed at the same time.

eg  If one of the patients has eaten a full english breakfast before his levadopa then he will likely be in a different state to the other who realises this is a problem and avoids it.

It is likely that neither were informed about the importance of timing levadopa to avoid wearing off.

I have attended clinic when Ive been unable to walk but this was not due to progression of the illness but probably one of several things such as a sleepless night or being lazy in taking my pills. In fact I walked out after drinking a strong coffee. A remedy I picked up from other pwp and which my neuro recognises, but never mentioned to me. I did not adjust my medication and have not done so in the 18 months since it happened.

Yes we are all different in many ways but i see so many who accept that as a reason for increasing medication when things aren't working out without investigating the processes that are common.  eg levodopa is absorbed in the duodenum, to get there the stomach has to empty, high protein meals will delay the process.

There are patients out there who  are doing well with pd whether it be because of what they do or slow progression I cant be certain but i think it would be wise to find out and if they are doing the right things then make them known to all of us.


#9

Hi Leyther

I find that I manage my PD quite well without any problems. I was DX in 2011, I refrained from accepting medication until I had come to terms that I definately had PD, and had read up on it. 2012 was my next Neuro appointment where by then my health had gone down hill, slowness, stiffness, cramps, deterioration in voice sound, depression, balance. The Neuro suggested Sinemet but I said I preferred Ropinirole because of certain side effects with Sinimet, I knew the side effects with DA's but was willing to take the chance. I still take Ropinirole XL slow release 14mg once daily and no other meds. I have been taking them, increasing the dose as and when needed, since 2012 to date with no side effects, I eat normally, drink within reason, enjoy life to the full apart from a few things I can't manage, I do have my 'off'' days but I consider myself to be very lucky in that my progress is slow so I don't know the reason why or when it (PD) is going to get worse,it will hit me hard.

Sheffy


#10

When I said 'we all value different things' (in #6 above) I was thinking mainly of the trade off of benefits and side effects of meds. I was thinking of the discussion about when to start meds, if & when to change the  dose and similar decisions. That is what Sheffy is describing too.

I agree with everything Leyther says about the importance of taking meds at the right time to make them effective. It is important that we learn what we can about the condition and treatments. This allows us to make the best of our own situations and possibly also to influence the direction of research.

EF


#11

Two very good answers EF and Shefinn

The reason I wrote this thread was to encourage others to speak about what works for them; what pills they take and how they take them; what lifestyle changes they have made.

I sometimes feel that uniqueness is used as an excuse by some of our medical teams and passed on to their patients.

My motto for dealing with pd is "there is always a way"

The way may be to alter a pill regime or a remedy like coffee. It may be exercise or more rest; it may be talking to someone or just waiting for my body to adapt to change.

To me the biggest step on the way to a better life with pd has been to understand that I have a role in my own treatment and that role is crucial to my well being.

I accept we are unique individuals.

What has worked for me I have found is finding a common remedy and adapting it to my circumstance.

 

L


#12

Leyther, I agree that the variables in this disease sometimes get too much emphasis.  If I have learned anything from this forum, it is that we pwp have many, many things in common.  That has often been the value of reading a post:  finding a technique of coping with or getting around a problem common to us.

And I like your chosen motto.  It reflects the optimism that is about as essential as exercise in counteracting the symptoms of PD.

Best regards,

J

 


#13

 

Hi Leyther & EF

When I was diagnosed I wondered how PD was going to effect me because there are so many forms of it. It surprised me just how many people (I have learnt on the forum) that were DX about the same time as myself or even just last year- the amount of medication they are taking. Had they been given the choice or had they just accepted what they had been offered. I tend to think that most of the meds taken for parkinsons do tend to give you more problems, it scares me to think when the time comes for me to take any added alternative meds how these are going to effect me and indeed which one to accept

Sheila


#14

Sheila, I think your symptoms and their effects on your everyday life will tell you when to add medications.  I took no meds at all until minor symptoms were growing into noticeable, annoying ones.  I always start with the minimal dose of a med and work up to greater dosages when I must.  After 18 years with this wonderful gift of PD, I'm taking maximum Mirapex (pramipexole) and minimal Azilect (rasagiline) and carbidopa/levodopa.  I still have a lot of room for increasing medication if and when I need to.

Don't fear side effects too much.  The odds are in your favour on most of those.  I have had only one issue of that kind:  Azilect caused dizziness when I first took it.  Cutting the dosage solved that problem immediately.  And I have had no other side effects.  You may be as fortunate as I have been, though I know there are those who haven't.  There is a little risk in almost any treatment, but to be living a normal life and engaging in my usual activities after so many years of PD, I feel it's worth that risk, especially in the case of Azilect, which delays PD's progress and could be the reason why I'm still in the first stage.

Best regards,

J


#15

 

Hello J

You cope really well with PD, and have learnt over the years to deal with it in your own way. I think we who have PD do tend to know better than the GP's etc., sometimes when we do need to increase our meds to adjust the symptoms of PD, in fact my GP has given me full control of this in that I just have to phone him to increase my meds and he obliges by writing out a prescription. I don't know whether that is a good thing or not but it certainly gives him a bit more time to see other patients instead of me! I feel it gives me control of my life in what I need. In fact I felt the need to increase my meds Sunday 25th Jan, on the Monday I phoned the PD nurse and left a message to inform her of the increase,but to date she has not returned my call. So most of the time we are left to our own devices.............. 

Regards Sheila


#16

Shefinn

What criteria do you use to judge an increase in meds and how is your neuro kept in the loop?


#17

hello Leyther

 

woke after 3am sweating in very cold room

 

night sweat have returned and I wonder why

looked out into garden and see pathways covered in snow

the first london snow of 2015

from other window see police passing by its burden of rooftop snow

Are you okay - why awake ?

this seems to be a new routine for me - sweats and unsettled sleep

 

will now drink the mug of hot choc and try counting back from 199

 

sweet dreams

Aber


#18

 

Hi Leyther

In my case I feel less able to function properly, in that I have more stiffness in my body,  my legs feel like lead weights when walking, I suffer more cramps in my body, and I feel more emotional and very weepy. This happens approx 3- 4 month intervals. The increase in meds is minimal, increasing by 2mg each time. Iinform my GP and also my Pd nurse, I don't see my neuro till June.

Sheila