Going it alone


#1

Hi,

I have posted before on the forum, about being unhappy with my meds. and lack of empathy from my neurologist and PD nurse. After extensive research and reading other people's advice, I have decided to take charge of my own body and listen to what it is telling me.

I was diagnosed with PD 3yrs. ago and put on 10mg. of Selegiline, but given Elderpryl by my surgery. This increased to another 5mg. to be taken in the afternoon. Eighteen months ago, Ropinirole XL was introduced and gradually built up to 12mg. a day. Sometimes it was RequipXL and sometimes SpirocoXL. The side effects, I suffered, were as bad as the disease itself. My neurologist suggested that I come off the slow release meds. gradually and see what happens.

Well, I have done all that and feel better and more in control, but my body is telling me I still need something to alleviate my PD symptoms, so I have decided to take Macuna Pruriens in tablet form. As I mentioned, I have done endless research into this and am going down this route with some trepidation. As I see it, there IS no cure for PD, so whatever meds. you are given will only relieve symptoms and as everyone reacts differently, there is no definite 'right' way to proceed.

My worry is, that when I see my PD nurse in a couple of weeks, she will disapprove of my actions and give me a hard time. How can I convince her that at least I want to give this a go?

I know many of you have used Macuna before and would welcome some advice please, on how you convinced your PD nurse and neurologist, to go along with this. 


#2

Hi Twinks

Initial thoughts are there are two ways of looking at this  -

One is that if you explain your reasons to the specialists as you have done here they should respect your views. . Maybe you could agree on a time scale for your experiment, keep a journal, report back for an assessment and then either continue with Mucuna or resume meds.

The other way is that it is your body and nobody can force you to hand over its care to the NhS. If you had decided to go private there would be no opposition, or refusal of care if returning to NHS in the future. Remember this, in the unlikely event of the specialist being obstructive. Also, it is not as if you are rejecting a cure, only meds that are generally very hit and miss in their control of symptoms.

Best of luck!

Let us know how you get on.

S


#3

     Twinks...Its unbelievable the different amount of different drugs  PWP are on,but i suppose people have different symptoms. My wife takes sinemet plus 4 times a day and rasagaline once, her problems are mainly fatigue movement and balance amongst others. She is waiting to see her neuro not seen him or PD nurse for 8 months....still waiting. Good luck with what ever you try cos you never know                                                   

                           Billywhizz


#4

Thank you Supa and Billywhizz for your words of encouragement. They mean a lot and have given me the confidence to talk to my PD nurse, when I see her shortly.

I AM keeping a journal of everything, Supa and I like your idea of agreeing a time scale for my experiment. I think I do need to go armed with good motives and arguments for what I'm doing, as usually I am made to feel a nuisance/stupid, for questioning conventional meds., by my neurologist or PD nurse.

I hope your wife sees someone soon, Billywhizz. I hadn't seen my neurologist for 18 months, so I emailed his secretary and an appointment came through the next week! 

Unfortunately I can't afford to go private, as I'm 66yrs. old and a retired teacher. I am prepared to change hospitals though, if all else fails. I'm in the lucky position of being close to three.

I will keep you posted!

Twinks.


#5

Hi Twinks,

Good on you, only you actually know how your PD feel's therefor you are the best person to decide on what medication regime to follow and we are all in this sort of situation I'm sure at some stage or other with our condition in common.

My last medication review my sister came with me, I to am around the 3 year mark since dx & I stunned my sister when my Pd nurse was talking with me in-regards to adding a new drug to my ever increasing list. My symptoms have decided to throw distonia at me as well for this I currently use the Apo-Go pen in injection format my PD nurse could have had what he was thinking written across his chest because I could tell he was about to suggest the Apo-Go pump before he had a chance to suggest it I firmly spoke and said " are you thinking about the pump" he replied yes at which point I said No my sister piped up who is this patient here and who is in charge? David the PD nurse did reply stating Karen knows her condition better than anyone else. Why? was the next question my answer was "think about it you have said before that I have a thing about my appearance so me in a fitted dress and something attached to me that I feel looks like a stoma really is not going to help me cope with my condition" I know for a fact it would impact on me in a negative manner. Result we agreed on an alternative that I had researched myself. 

I am know to be quite stubborn and make my decisions based on what I feel is right for me to do this you have to be strong willed and firm to the point . My mother in law recently described me to a friend whom has also been dx as a very determined young woman who will not take no for an answer.  So my advice to you is thus state what you want clearly and stay strong with what you have decided to do, if she tries to give you a hard time then I would point out that you are the person in control of your body so the final decision will be made by you.

Never forget that you always have the option to complain if you feel you are not being treated in a respectable manner and if necessary as you say you can always change Dr's PD specialist and nurse as well as completely transferring to a different hospital's.

I wish you luck with your next appointment and hopefully your be surprised by the reaction you will receive  when stating what your intentions are now with the Macuna Pruriens and please let us know how you get on. Best Wishes BB ( Karen ) Stay strong.


#6

Hi Karen,

Thank you for your advice and insight. I follow your posts with interest, as I can tell you are a strong , determined lady. Like you, I can be stubborn, but in a less confident way! So far, I have always gone to my PD appointments on my own, but think I may ask my husband to come with me next time, for a bit of moral support. 

I know the neurologists have a thankless task, dishing out meds. that can't cure this wretched disease. And they must get sick of listening to people moaning on about how they feel, but THEY chose their profession and should at least show respect for their patients views and ideas, even if they disagree. Unfortunately, mine is very dismissive and seems uninterested. In truth, I think he'd like to retire......he said as much, when I last saw him.

My appointment is on 21st. Jan., so will let you know how things go. Your support is much appreciated, thanks.

I will stay strong and positive!

Twinks.


#7

Good luck on the 21st, Twinks.

Could you share your experience with Macuna here, please? I've read a little about it and it sounds interesting.


#8

Well the first part of my plan went well. I went to see my GP today and explained what I was thinking of doing, regarding the. Macuna Pruriens.....and she AGREED! I needed her advice as to how I should bring up the subject with my PD nurse, who I see next week. I know she will try and talk me out of it. My GP was very helpful and came up with some good suggestions to back up my experiment. She will even refer me to another hospital, if I meet resistance. Feel much more confident now!

Twinks.


#9

Hi Twinks,

Good on you just remember you and only you are in charge of your body if your PD don't like it quite frankly tough.

Be thinking of you xx


#10

Thanks Karen.  xx


#11

 

Hi

I don't have much too add, except, we were all living with this for some a long before we started 'medication' i think that's rational enough to be brave in trying your way,with support, what do you have too loose I wish you success.


#12

Thanks sea angler. 


#13

Sorry to say that I chickened out of mentioning the Macuna Pruriens today, when I saw my PD nurse. This was all due to other developments, since last Saturday, when the DVLA refused to renew my driving licence! Thought it more important to fight for my license back, than introducing more controversy with her.

Completely off the Ropinirole now and feel much better, with a clearer head and no ill effects. Still going to try the Macuna however.

Twinks.

 


#14

Maybe you shouldn't mention it till you've been taking it for a while. That way, at least you'll know if it's helping or not (if it isn't, don't say anything!).

What side effects were you getting on Ropinirole XL? 


#15

Hi Tabbycat,

I had been taking Ropinirole for about 2yrs., gradually increasing the dose by 2mg., until I was on 12mg.

It made me feel slightly light headed and not quite 'with it'. Each time I increased the dose, I expected things to improve, which they didn't. The Ropinirole also played havoc with my eyesight, causing my prescription to change every 3 months, (expensive when you're paying out £250 a time, for new lenses)!!!

I continued taking Selegiline, but since reducing the Ropinirole and coming off it altogether, I feel more like my old self again. My Parkinson's is very mild anyway......I don't have dystonia or dyskinesia, just bradykinesia, a slow right arm and some clumsiness. That's the trouble with all these meds., we all react differently to them

And yes, I am going to begin taking half a Maucuna tablet, a day and see how I feel.

Thanks for asking.

Twinks.

 


#16

Thanks Twinks. I've just started taking Ropinerole so I was interested in your experience.

Keep us posted about the Macuna.


#17

 

Hi Tabbycat - not everyone has the same results and side effects on Ropinirole, we are all different. I have been on this medication since I was DX six years ago, with no side effects at all, I take 16mg per day and no other medication. In a way I think I am one of the lucky ones as others seem to have had problems, so hope you will be ok on it and find it beneficial to you, we all react in different ways to all meds at some time or other.

Best wishes to you and Twinks (hope you resolve your problem with DVLA also Twinks!)

Sheffy


#18

Thanks Sheffy. I guess people only talk about things when they go wrong, which is why we hear more about bad side effects and less about positive experiences. 


#19

Thanks Sheffy. I'm pleased it works for you. That's the trouble with P, no two people react exactly the same to the variety of different meds. they give us.

 On the case......regarding the DVLA saga!

Twinks.


#20

Twinks, I'm about to do the same. I've ordered the MP and a few other meds I've seen recommended to be taken with it. I've just been diagnosed and am not interested in starting with the conventional route. As far as I'm concerned, the standard GP and Neuro doesn't think outside the box about the condition anymore. The treatment is flawed and dated, so I'll try my best to experiment with other options first. Let me know how you get on and I'll let you know too! 

It's my body, it's going to deteriorate anyway, so why not try the road less taken (as the poem says).