hi Guys im struggling beyond belief with my mum who has parkinsons and has had for 2 years - she is on ropinorole and sinimet and is a mess.

[Reeves]

I would like some advice on her medication and help - she cant hardly speak now - feels sick and dizzy daily and so weak she cant even get out of bed - she has had stints in hospital over the last 3 month - I have social services coming in from next week......... its the weakness and sick and dizzy I need to deal with - her neurologist has never changed her medication since he first saw her 2 years ago - has anyone experienced this?

[kavanman]

,Hi, I too struggled with the medication similar symptoms but not as bad, I was diagnosed 3 years ago. My advice to you would be demand answers from the consultant cos this is not right, these people are not above reproach and do not be afraid to stand your ground and when push comes to shove they don't know what its like to have parkinsons .My own situation has settled now but that is because I see a new consultant who was shocked by the amount of meds I was on and he was prepared to listen and advise me on what to do, not just give me more meds and say see u in six months.

[eh110575 in reply to kavanman]

Sad to say but Neurologist have not been my most admired doctors. And I have seen a lot of doctors in 63 years on the planet. I know you all are saying that I am taking out my own frustration about the disease on the doctor who should be my most important doctor. Perhaps that is true. I would say this to any young person studying medicine, if you want to be a doctor that is the least demanding, least stressfull, easiest speciality then be a neurologist who's main tools are the rubber hammer and a RX pad!

[sweetiang in reply to kavanman]

It is a well known fact that doctors nowasays are prescription-mad.. They just dish out pills at the drop of a hat. There are some good docs, but most just want to cut, burn and poison

[Hikoi]

Reeves

Hard to reply without knowing which country you live in. In UK i would ring Parkinsons nurse, the Parkinson help line. This isnt right.

[maryalice]

Reeves,

I live in the USA and it may be different where you live, but I'd take her to a new doctor. That doctor is not treating your mother with the respect and care she deserves as his patient. It makes me angry that she is being treated so poorly. She's so blessed to have a son like you who is concerned for her. I've had Parkinson's for 15+ years and one thing I've learned is you have to stand up for yourself with doctors. I'll be praying that you find the right doctor for your mum. Please keep us posted.

[bigmama53]

This is so sad and appalling. I live in the UK and I run a support group for PWPs and some of my members have had similar experiences.. Your first call should be your doctor to register the condition your mother is in. Ask to be referred to another neuro for a second opinion. Failing this demand another appointment with current neuro and go prepared with all the questions you want answers to. Also contact your Parkinson's charity and see what help they can offer. If you're in the US you can have the additional support of the MJF Foundation. Like many before me have said, you have to stand up for your mother because she can have and must have quality of life and she should not be going through what she is going through now. I hope your mum has relief very soon. All the best.

[alanrob in reply to bigmama53]

this kind of treatment from a consultant is disgraceful and in my experience it happens a lot it needs to be highlighted more often and the clowns that act like this should be struck off some neurologists have no pride in their jobs.

[bigmama53 in reply to alanrob]

not all neurologists are bad. I have had two good neurologists since I was diagnosed almost 10 years ago. There is also another neuro colleague of my specialist who is spending time educating doctors and other clinicians, physios and nurses on the complexities of Parkinson's. Because it proved very useful and was well received, it is going to be repeated in 6 months' time.

[Jash]

Keep demanding the attention you're not getting. While we don't have a cure, there are a lot of treatment options. Sending my best to you and your mum. When I was not happy with the drugs i was taking, I quit taking them or cut back. Because there is no cure, there is no right answer--unfortunately, it's trial and error-- but there is always another path to follow.

[soup]

When did you last see the neurologist? Did you get a prescription for anything that would calm the sickness? Is the Ropinirole a slow release version? That often causes less nausea.

Sometimes people can't tolerate Sinemet but do well on Madopar. Treatment of Parkinson's is like juggling. Your doctor sounds like he/she is either not aware of your mother's condition or they don't know how to juggle. Be firm and change doctors if you need to. What you describe is not to be tolerated.

[honeycombe3]

Hi Reeves,

I'm so sorry to hear of your mother's condition. I guess that you are from UK (social services) & that your mother is receiving some treatment for her symptoms as she has been admitted to hospital. Was her neuro involved in this? On this site you can access the combined experience of 100s of PwP but there are some basic pieces of information which are needed to start the ball rolling.

How old is your mother? Was she diagnosed by the same neuro 2 yrs ago who is treating her now? What doses of PD meds is she taking? Is she being treated for any other conditions?

I wonder whether her PD is one side only? I ask this because I've been dxd for 9 yrs but my PD is still left-side only. This has led to angina being undetected for some months as the symptoms are similar & possibly contributed to 2 heart attacks, the most recent last week.

I am 65, dxd 9 yrs taking Ropinirole 8mgs & Sinemet Plus 5 daily. Over the past year I have experienced bouts of dizziness, nausea & weakness (with occasional spells of diarrhoea) which no-one is able to explain. I have an excellent consultant, GP & PD nurse.

[Partner]

Hello Reeves

Please consider trying homeopathy - my parter has used anti-vertigo remedies with great success. One of them is Cocculus, for example, but everyone is different, so you should consult a registered homeopath.

There are also remedies that help with tremor, rigidity and other symptoms of PD. Remedies may be used alongside conventional meds.

I know many people are very anti homeopathy and I always contribute on this topic with trepidation, as I don't want a barrage of negativity on the topic. I won't reply to any such postings, and can only say that Science needs to catch up -- indeed there is a new branch of science called quantum biology, which may well hold the answer as how homeopathy works.

With very best wishes

Partner

[rtag in reply to Partner]

Dear Partner, please don't "contribute with trepidation" on the subject of homeopathy. It is clear that while science has made progress in understanding and treating PD, conventional medicine is not the be all and end all. There are many shortcomings of conventional medicine with regard to this disease (and others). The drugs, while very helpful for some, cause side effects and can be quite scary. Any alternative ideas that work would be welcomed!! It is important to look outside the box. I do agree that science needs to catch up. Please, what remedies help tremor? Can you extrapolate on quantum biology? I would welcome your insight.

[Partner in reply to rtag]

Hello

My trepidation was because of a barrage I received in this very forum!

There are quite a few remedies that help with tremor - perhaps the one most often quoted is Agaricus - BUT what works for one person doesn't necessarily work for another. Also, the bet remedy depends on where the tremor is, and other associated problems (salivation, rigidity etc.). Please do find yourself a homeopath.

Re quantum biology

I discovered this because I listened to BBC Radio 4 'Material World' bbc.co.uk/news/science-envi... --

an item on the sense of smell and the theory that it works by quantum tunnelling. Through homeopathy I have recently begun to be able to smell, having had no sense of smell all my life.

There was a related programme from bbc.co.uk/podcasts/series/d...

Quantum Biology

Mon, 28 Jan 13

Duration:18 mins Jason Palmer looks at the emerging field of quantum biology. From smell to navigation, it seems that some of the hardest problems in biology could be solved with the insights from theoretical physics. I hope it's still available.

It's all very exciting! I'm really happy to be able to share this info with you

Partner

[rtag in reply to Partner]

Partner, Thank you for sharing all this. I haven't yet had a chance to check out the links, but I will. Just wanted to say thanks...

[Blondir in reply to Partner]

Hello - rtag is absolutely right that Partner should not have to have trepidation about trying to help others. If someone told me standing on my head in a bucket of Rocking Horse Manure for2 hours a day because t would ease my PD I would

be out there with a shovel trying to find some

A bit about me as if Partners metioning of Homeopathy caused a barrage of negativiity then I could be in for some fun

I have always been scientifically orientated , a metallurgist by profession and 20 years worth of Quality Systems and Auditing make you sceptical - and I take some convincing but I believe I have an open mind - this is important for what follows :-

My wife has a friend who along with her husband have long had interests in alternative therapies - which have developed into an active interest in Crystal Therapy - before anyone presses 'send' please hear this out The Husband (lets call him Bob) Bob knows about my PD and asked me if I would be interested in letting him use me as a source of information for a 15,000+ word thesis he had to write as part of a qualification program - he asked me because he knew he would get honesty analytical answers. The expectations were not to relieve specifically the PD but possibly to relieve some of the periferral problems , general discomfort , tightness and constipation etc which all PwP's are familiar with . The project lasted about 8 or 9 weeks with 6 sessions an a thorough discussion at the end . I cannot explain it but against my judgement I feel that after each session I had benefited if only by having 'better days' for 2 to 3 days . It could be 'all in the head' because I was getting some attention , I spent each session lying on a couch - relaxed something I cannot normally do , I never stop even when I'm feeling really bad I push myself - It could be psycological I wanted there to be a benefit no matter how small.

AS I understand it the therapy is linked in some ways to some of the far eastern approaches - like Yoga , where there is a concentration on focusing and realigning the bodies internal 'energy'

There were some lengthy discussions and Bob got his thesis written and for a period of time I was less uncomfortable and generally a bit more positive

If nothing else this exercise had one definite benefit - a few more people who have had no direct connection with PD are now much more more aware of PD and its effects - from direct contact with a PwP over a couple of months - what did the people who reviewed Bob's thesis think as their awareness was raised vicariously

So for anyone about to press send stop and ask yourself this question - Have I raised the awareness of anyone to PD today ?

Partner thank you for giving me the opportunity to nail this one to the mast If you feel something is a benefit to you and your PD do it ( provided its not illegal of course) - don't worry what others think like PD we're all different

and don't knock what you haven't tried.until you have tried it

And if all else fails tell whoever is barraging you to go stick their head in a bucket of Rocking Horse muck if you can find any

Written wearing a tin hat by candle light from a dugout somewhere in the East Midlands

Blondir

[Trixiedee]

Hi Partner, I am very pro homeopathy. I'd love to find a homeopath who has successfully treated PD. Can you send me the details of your partners homeopath please?

Best wishes

Trixiedee

[Partner in reply to Trixiedee]

Hello Trixiedee

Well we are in the UK - not sure where you are! Our homeopath's website is naturalhealthanswers.co.uk/ . I am pretty sure she will advise you to find a local homeopath that you can see personally, but she does do consultations by email in extremis.

I have to say that not all aspects of the illness have responded, but quite a few have.

Good luck!

Partner

[Maria29]

I suggest you get a new Neurologist, one who specializes in movement disorders. Your mother should not be suffering like this. Some of these "Specialists" think too highly of themselves and are not willing to listen to their patients and the caregivers. Be persistent.

[roberto-sanchez]

I suggest you search in Dr. Newport blog. You can try Virgin Coco Oil instead of the PD medicines she is taking.

[roberto-sanchez]

Additionaly, refer to "fwes" posting in HealthUnlocked. The blog of Dr. Mary Newport is CoconutKetones.com

[PatV]

I have seen NO scientific basis for using coconut oil INSTEAD OF PD meds. Sounds like madness to me. For nausea I use crystal ginger.

[quirkyme in reply to PatV]

there are all sorts of medications for nausea. One of the best non-medical treatments is pot. I've never smoked put but in the US some states are allowing it for PD pain, and I should think for nausea, too. It's very effective. Dispensaries put it into an oil and you take it that way. My friend who was ill with bowel cancer had some in her freezer and it really helped a lot. I'm not at all into alternative medicine but this is legit. ( I used to work in a hospice. We couldn't prescribe it but I remember one patient who got it on her own).

[Coblrman]

I couldn't imagine the same meds for two years straight.

[leenie50]

It is important to find a neurologist you trust and and one who cares. My last husband suffered from PSP. It was called Parkinson Plus back when he was diagnosed in 1996. When you go looking for a new doctor as I think you should, ask the drs. if they specialize in Parkinson"s. If they say no, then ask if they know one who does. You can do this when making your first appointment. Your Mom deserves to be taken care of by someone who knows the disease. I assume you are her caregiver so it is your responsibility to make sure she gets the best. It may not be easy but it will be worth it!!

[cjsg]

I know how hard it is to try to take care of someone with PD, when they are so sick they have a hard time even trying to help take care of themselves, and you dk where to go or what to do to help them. PD is different for each person, also the meds and dosage of them. Everyone has made excellent suggestions, my suggestion is don't forget to take care of yourself.

[hazey69]

For my Mum too her worst symptoms have been weakness, dizzyness, nausea and diarrhoea. My Mum has PD and is currently in hospital after having a bowel resection last Friday, we do not know why but she has had an increase in her sickness and diarrhoea since admission for the op, but always feels worse after taking the Madopar for her Parkinsons. She is getting to the point where she is so weak she wants to give up!! She has a history of sickness and nausea with the Parkinsons before she was treated, ( treatment started a few months ago when she eventually saw a neurologist) undiagnosed for a good 18 months she is now on Madopar for the tremor and domperidone for the sickness, she gets bouts of feeeling dizzy and unsteady and has passed out completely several times, before and since PD treatment. After several weeks of persistant D&V she has been rushed to this op, she has had intersusseption which is very rare and can be linked to cancer and other inflammatory bowel complaints, however there was no indication of this during the op. Does anyone know of Maadopar causing bowel complaints as severe as this? and could anyone suggest a good alternative? I have read mention of a slow release drug perhaps this would be better. Is this the one your Mum is on? If so probably no good either. Maybe homeopathy the way to go if she pulls through all this.

[MagicMax]

Hi Reeves,

You did not mention how much of each medication your Mum is taking. Sounds to me like she is taking too much sinemet and not drinking enough water. It is easy to become dehydrated when you have Parkinson's. Also, she needs to walk every day as much as she can to keep her strength up, and to help slow progression of the disease. There are now several reports showing that exercise slows the disease and even reverses some symptoms. Ropinorole makes one feel tired; so cutting the dose in half may help with more energy. Of course a good neurologist can also be of great help. Good Luck and Good Health -- Wayne

[simonlaverick]

My thoughts are from a non medical point of view. If I had been given medication that doesnt work id be on the phone, go visit, anything till I got actio. And excersise really works for me. My consultant is the best

[Judy-10]

My dad had a really horrible reaction to sinemet. Even at the smallest dose, he became delusional, and as the dose was increased, he became entirely incoherent and nearly mad. It turns out he has Lewy Body Dementia and cannot tolerate sinemet. Apparently, LBD and sinemet don't mix. Perhaps you could check into that.

Also, one of the strange side effects with my dad was an inability to talk. For an entire day, while on the sinemet, he was completely non-verbal. It was like a waking coma.

My dad was eased off the sinemet and returned to sanity. Though I must admit, he did lose a lot. His speech has not returned to normal, though he can talk somewhat now. I did some research and found a recent study from the FDA that said about 2% of people using sinemet may suffer loss of speech. See ehealthme.com/ds/sinemet+cr...

We have opted not to give my dad sinemet. It wasn't worth the insanity, especially since he is still able to walk and move around. My dad is back to himself in his personality now without the sinemet. He is peaceful and happy. Coconut oil has also helped a lot to regulate his dementia though it doesn't stop it altogether.

[quirkyme]

nausea can be very debilitating and demoralizing. Also post surgery, many patients have a depression and of course, PD can make people feel discouraged and depressed. Is there some way to get a social worker in to assess her psycho-social needs. If she goes to a church, a minister or church friend can do a world of good or any 'friendly visitor.' Does she have friends who could visit? what does she enjoy? If she can regain some normalcy, it might help.

[Polyanna007]

Reevesn:

I hope by now you haveseennanthor neurologist as all do not think alike. I was on the same two,medicationsv

[cabbagecottage]

Maybe a Parkinson's nurse might be more helpful and understanding .

[9284]

My husband and I live in Australia and we are so lucky that my husband has a very caring GP who first reckonised PD about 16 months ago and an excellent specialist who was so thorough He takes Madopar but both agree on dosages

The whole thing is sad and apart from him having no apathy I think he probably has dementia too

I hope you get help

[condor39]

All this from 5 years ago?