i,v had parkinsons for 11 years now and just in the past month my symptoms have rapidly worsened

[alanrob]

i am seizing up on a regular basis and some days can barely move also my tremor has become uncontrollable and i,m getting balance problems,my pd nurse said that pd doesnt deteriorate like that and told me to go to my gp and get tests for a virus which i did and it was negative i,m now in a state of limbo because no one seems to know whats happening and what to do about it so they have just left me to get on with it,anyone got any advice?

[jupiterjane]

HI,

Are you on any new medications or OTC vitamin's or medicines. Sometimes the medication they put us on can give you some crazy side effect symptoms. Why are you talking to the PD nurse and the Doctor. Do you see a Neurologist or movement specialist?

Hope you figure it all out!

Jupiterjane

[alanrob in reply to jupiterjane]

i emailed the neuro and all he done was bring my app forward from aug to june which doesnt help in the short term he didnt make any suggestions despite me emailing him again two days ago.

[arwenmark]

I think the nurse is wrong. PD can go along for a long while at a slow decline then suddenly take a nose dive and derteriorate quickly. This is particularly true if you get an infection of some kind or are suddenly under more stress etc. but it can just be the way the disease progresses for you.

I also suggest you see a MDS as soon as possible.

[Hidden in reply to arwenmark]

The nurse issss wrong. I have read that you can progress with PD even skipping a stage.

[johntPM]

Are you on levodopa based drugs?

Is your new condition like a permanent "off"?

Has anything, such as protein in the diet or constipation, happened to stop your drugs being effective?

John

[alanrob in reply to johntPM]

i,m on sinemet plus 2 four times a day,i get chronic constipation but i got some strong laxitive from the gp and it cleared by bowel but it made no difference i just feel like i cant hold myself upright and want to sit or lie down all the time and i cant manage anything with my hands because they are shaking too much,its extremely distressing especially for my daughter.

[alanrob in reply to johntPM]

yes i would say its like a permanent off.

[Hidden]

I have read that you can progress with PD even skipping a stage.

[Hikoi]

That is a large gap between meds Alan. I guess you have kept a diary of all this and your symptoms many times but i dont know how else to track what is happening. Hope you can find some answers soon. If not i'd just call an ambulance!

[alanrob in reply to Hikoi]

i feel like it at times as i dont know whats happening and i cant get any answers.

[PatV]

By sinimet plus do you mean CR? time released. I find it's unreliable. My doc added it to my sinimet so now I'm on 5 sinimet 25/100 plus 3 half sinimet CR. supposed to keep the wearing off at bay. I had same experience last year and we are still fiddling with the doses. Don't give up. You'll get some of your mobility back. It does progress but you can fight back!

[alanrob in reply to PatV]

i take the normal sinemet plus during the day and a cr at night.

[PatV in reply to PatV]

I tried that and found it was more effective to add half a sinimet CR to my daytime doses (3 per day)

[Kachimom]

I was on Mirapex for several years and in the last 6 months went rapidly down hill. Stiffness, freeze step, shuffle walk, stooping posture, using a walker. Finally went to a Parkinsons specialist. He said if you are on Mirapex for a long time it loses its effect and even makes the symptoms worse.. I've been on Sinement for about a month and feel 100% better. Maybe you need to change medications? Could it be that simple?

[alanrob in reply to Kachimom]

i,v never had a DA because of risk of OCD but i,v had almost all the other meds azilect madapor,amantadine,stalevo,entacapone etc.

[jebbers]

Have you considered another movement specialist?

[alanrob in reply to jebbers]

they are extremely hard to find in my area it took me ages to find this one but its not doing me much good.

[soup]

Get back to the nurse straight away if the consultant can't see you. The Parkinson's UK helpline also has a nurse service.

There is such a thing as an acute deterioration pathway which the Pd nurse should know about. She started you off in the right direction but you need to push for a follow up. The trouble with emergency rooms over the weekend is that they are staffed by doctors who know even less than we do. If you have an on call geriatrician with a Parkinson's speciality you will be in luck.

Where a bouts do you live?

[alanrob in reply to soup]

in southern scotland.

[soup in reply to alanrob]

Glasgow is a good area for Parkinson's research, are you close enough to that city to make a second opinion there possible?

Have you been told that you are likely to get OCD/impulse control disorders with dopamine agonists because of a previous medical history or are you just nervous of them because you have read so much? They might be worth considering if you don't have high risk behaviors already.

You can also be prescribed a dispersible form of many meds which act as a 'rescue' med for quick relief of symptoms.

There are many ways forward at this stage but you need to kick start the process through your GP of PD nurse. Good luck and don't take no for an answer.

[alanrob in reply to soup]

i,v had another bad day today just cant move at times and when i can my co ordination is poor and my legs dont go where i want them too,i,m also starting to get twitching of the head and face especially around the mouth,i intend to kick up a fuss tomorrow with my neuro and the pd nurse they dont seem interested if i was paying privately i bet they would.

[Sunnysky]

Hi Alanrob I've also experienced this rather rapid increase in symptoms for about ten years I was able to function fairly well but now have a lot more "off" periods which include tremor and freezing and the old shuffling step have you tried different meds or combinations of meds I recently added Amantadine and neuro patches also still on my count oil you hopefully you will get some relief also watch your diet it makes a difference if you eat 80 percent fresh food and no junk. Keep positive Sunnysky

[alanrob in reply to Sunnysky]

thank you.

[mktbob55]

I suggest you increase your sinemet by 1 extra per dose and see if you are undermedicated. If your symptoms lessen you are closer to an answer

.I hit a bad stretch a year ago and went from Stalevo 100 4x/day to stalevo 150 8 x/day.

[alanrob in reply to mktbob55]

will give it a try.

[Lizzie7]

Hi Alan, I'm sorry to hear that. I have the same experience after 10 years though I do have some 'on' periods, they are less frequent and they never did last that long. I seize up and it's frightening and my tremor often stops me from doing things. I also get the restless feeling like restless legs/body syndrome, this makes me feel that I need to crawl or writhe on the floor or stand up to try and feel better. I have been taking Madopar 2x 100mg, five times a day and my consultant has increased the dosage so that I can take them every three hours.

[alanrob in reply to Lizzie7]

sorry to hear that lizzie,i totally agree its frightening when it happens because you dont know how bad its going to get and it also worries me because i have a 13 year old daughter to look after.

[alanrob]

will do,thanks

[Lizzie7]

I'm sorry, it must be very worrying Alan but try not to worry (easier said than done I know!) children are more resilient than we think they are and I reckon there's a coping mechanism in all of us. As others have said I think that you probably need your medication looked at. I 'like' Madopar because it has given me less side effects than all the others that I've been on and my neurologist doesn't seem to mind trying me on the higher dose. I've also been given the chance to be considered for the operation DBS. If you don't mind the thought of that, go for it and request the chance of being considered for it, as I've heard that it's successful in most cases and reduces symptoms greatly. I'm a wimp but I might consider it later if nothing better comes along. All the best Alan.

[alanrob in reply to Lizzie7]

thanks lizzie, i am also considering the DBS option but my daughter wont hear of it i think we need to sit down and have a major talk about it,i wouldnt have even considered it a year ago but things have changed so much that i am going to consider asking for an assesment.

[Hidden in reply to alanrob]

Ultrasound surgery for PwP

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[Lizzie7 in reply to alanrob]

Good for you, It's never an easy time.

[answerseeker]

Hi,

My husband is the one with PD, almost 11 years now. What we have learned as things change, it helps a lot of look at what is different in his life that could be having an impact and we often finds ourselves laughing that the little things than can.

Of course, everyone is different and he has chosen not to go on any meds for PD as long as he manages without. I am a nutritionist and have done a lot of research on lifestyle factors that make a difference along with tracking the things he noticed have made the biggest difference for him.

He also has had some progression in the last 3 years which seems from what I've gleaned to be typical whether you are on meds or not. That being said, when all of a sudden a number of things begin to get worse, we have usually been able to identify things like a change in diet (especially if he has slipped into eating more refined carbs), not getting enough sleep (minimum of 6.5 although 7-8 ideal) and a not so obvious infection. Once he had a period of dizziness getting up which an alert Internist identified as being caused by an inner ear infection (there was no pain) and once that was treated that symptom went away.

So while you are waiting for your doctor to figure it out, what do you know has changed in your life about the time your symptoms increased? I've found stress of any kind and timing of meds or supplements can be productive avenues to explore. Just maybe there is another answer than it being from a rapid progression of PD.

By the way, I don't know your other medical background, but I found in researching that often developing untreated hypothyroidism can present as a sudden worsening of symptoms in people with PD. Worth bringing up perhaps with your regular physician who you might be able to see more quickly.

Best wishes for getting some good answers.

[alanrob in reply to answerseeker]

thank you for your thoughts much appreciated.

[silvestrov]

The medical community amuses me with their fixation of viruses and Parkinson's disease. The standard PD testing for new drugs consists of lipopolysaccharides (LPS) and choose an antioxidant/drug... LPS is derived from gram negative bacteria. Another source of Parkinson's is, surprise, Lyme disease. The Borrelia burgdorferi, the bacteria which causes Lyme disease, is known as the 'Great Imitater' and has been implicated in as many as 300 different diseases including Parkinson's, MS, ALS, lupus, Crohn's, fibromyalgia....and it is so bad that the Lyme researcher, Alan MacDonald, found Lyme DNA in 7 of 10 Alzheimer's brain specimens from the Harvard Brain Bank.

Have you ever been infected with Lyme disease? Both Linda Ronstadt and Michael J. Fox had Lyme disease before they had Parkinson's.

The following link is about Lyme and Parkinson's/ALS/MS....and I think you will find it interesting: newswithviews.com/Howenstin...

Also, there is a Lyme documentary online and it is fascinating: youtube.com/watch?v=2JgR_Jf...(Not working as expected?)

I am making a documentary about anything related to Parkinson's and there is a large segment on Lyme. I think Lyme-induced parkinsonism is different than idiopathic (of unknown origin) Parkinson's disease because those people cured with TOA-free Cat's Claw were able to resume normal lives and had no damage to their substantia nigra. SN damage is part and parcel to Parkinson's disease and there has been only one case of Lyme-induced PD with had any damage to the SN but there was no alpha synuclein/Lewy bodies - misfolded proteins, upon autopsy. Another difference.

[alanrob in reply to silvestrov]

very interesting silvestrov.

[alanrob in reply to alanrob]

what exactly is TAO-free cats claw and where can i obtain it?

[silvestrov in reply to alanrob]

Here is the information, but it is only used for Lyme induced Parkinson's and can worsten idiopathic PD - the unknown type of PD that destroys the substantia nigra. nutramedix.ec/ns/samento

[Hikoi in reply to silvestrov]

Silverstrov i can't follow some of this, are you able to explain a bit more? Im lost here -

"The medical community amuses me with their fixation of viruses and Parkinson's disease. The standard PD testing for new drugs consists of lipopolysaccharides (LPS) and choose an antioxidant/drug... "

[silvestrov in reply to Hikoi]

The national cancer institutes are dominated by virologists as are the people who looked for the cause of AIDS and they found a virus (it was the only thing they looked for). There has never been a real debate as to the possible cause of AIDS and the debate continues behind the scenes. Hence, virologists hold sway in many areas of public health and viruses are attributed to be the cause of PD even though the best clinical models for Parkinson's disease testing occurs with products of bacteria. The substantia nigra of animals are injected/contaminated with lipopolysaccharides (LPS) - an endotoxin from the cell wall of gram negative bacteria - E. Coli, Salmonella, Helicobacter pylori. And are then 'defended' by a test drug to see if the drug is neuroprotective against lipopolysaccharides - LPS. It is the most common form of testing and viruses are not used for Parkinson's testing. True viruses can cause transient PD like states but bacteria have been more implicated. Besides LPS, Parkinson's is genetically related to Tuberculosis, Leprosy and Crohn's - 3 mycobacteria diseases (gram positive bacteria). The gram positive bacteria Nocardia asteroides, is in the same order as Mycobacterium tuberculosis, and is used in Parkinson's testing by the late Dr. Blaine Beaman and Japanese scientists at the Gifu School of Medicine in Japan. And we can't forget that the borrelia burgdorferi/Lyme disease bacteria, can cause parkinsonism.

Here is a case study of a lab assistant getting parkinsonism from lipopolysaccharides: endotoxin.gmxhome.de/

Also, here is an example of Dr. Beaman's Nocardia experiments:

theguardian.com/uk/2001/sep...

Several things: If you are having balance problems, your vitamin D levels are probably low. Low vitamin D levels have been correlated with poor balance. Also, low folate levels are associated with poor balance. The best form of Folate to take is methytetrahydrofolate and it should be taken with methylcobalamin - the most potent form of B12. The B12 injections doctors give you are cyanocobalamin - not nearly as effective as methylcobalamin. BTW, I have PD and take all the above supplements. 5,000 IU of vitamin D/day, 5,000 mcg of methylcobalamin/day (more can be taken if needed) and 800 mcg of methytetrahydrofolate/day. Also, PD patients suffer from inflammation and I highly recommend taking a fish oil supplement with a balance of DHA/Epa omega three - at least 600 mg of DHA. Low levels of DHA have been implicated with Parkinson's (as is inflammatory states): drfuhrman.com/library/lack_...

I actually take a combined DHA/EPA supplement; a flax seed supplement and a fish oil supplement. A study placed a group of non-operable back pain patients on 1,200 or 2,400 mg of fish oil daily and 60 percent stopped taking prescription NSAID anti-inflammatory meds: Ibuptophen, Alieve, acetaminophen...and 86% felt relief.

I am not a doctor but have researched the topic for years and am making a documentary about the what I have discovered.

[Norton1]

Hello Alanrob

I have Tremor Dominant Parkinson's, and have had considerable success with the medication Amitriptyline. It is really an antidepressant, but in low doses,30mg, dampens my tremors during the night and up to about 10.30am when it's effect lessens and I then take my first Sinemet dose. I have noticed too, that I walk much better before the effects of the Amitriptyline wears off (it has a half life of 12 hours). For anyone with sleep problems, it also has the side effect of helping there too.

Like all medications it has adverse effects such as mild cognitive impairment, tendency towards constipation and dry mouth, none of which are life threatening. The constipation I deal with by eating an all plant diet.

Why not discuss this medicine with your nurse, doctor or neurologist to see if it will benefit you too?

Regards

Norton

[alanrob in reply to Norton1]

i,ll certainly mention it,thanks.

[answerseeker]

Very interesting information. Like anything, there can be multiple causes for Parkinson's as well as other diseases that are grouped together (e.g. cancers). Coincidentally I just started my husband on cat's claw this week for some inflammatory issues that have gotten worse and thought perhaps a microorganism of some type might be involved. Cat's claw is effective for many conditions. Time will tell

[silvestrov in reply to answerseeker]

Cat's claw is fine for lyme-induced parkinsonism but I have doubts if it is good for (non-Lyme induced) Parkinson's : ncbi.nlm.nih.gov/pubmed/188...

[silvestrov]

The problem most people have with Parkinson's therapy starts with the drug Sinemet/L-dopa. Sinemet is tachyphylactic - it stops working. Sinemet stops working within the first 1 - 2 years and then from 2-4 larger and larger doses are required and drug induced shaking occurs. A better dopamine supplement is derived from the Mucuna pruriens plant and is sold under the name of Zandopa:

amazon.com/Zandopa-Natural-...

Zandopa is NOT tachylphylactic. Besides levodopa, the mucuna pruriens plant is high in 5-htp, the precursor of serotonin, important for PD, nicotine, a therapy for PD and alkaloids with include beta-carboline:

ncbi.nlm.nih.gov/pubmed/216...

[cowmom27]

Allenrob, I was diiagnosed in March 2006--had an employee physical for a new job as a staff nurse in a busy Emergency room in the AM & was diagnosed that same day.in the beginning I was on mirapex then switched to requip 3x/dsy but had issues with nausea ;& dropping off to sleep( duriiing mtgs and on a few occasions while driving!!)Working w/neurologist I was switched to requip cilia at bedtime with no problems. Up until this past Dec when I had a staph infection in my knee---in hospital for 5 days & my knee was surgically flushed. Prior to this people were often surprised on learning I had PD --as long as I took my meds sineme, on time I was a-ok!! Afterthe infection its been a nnightmare+-----if I sit too long have great difficulllty walking as my left leg won't move, my tremors are back, get worse when tired, my balance is off, having more issues wearing off and freezing episodes ----which I did not have prior tto Dec..Its been almost 6.months knee is healed but the pd is worse and I am not ready to give in and let pd take over!!! I am keeping a journal of symptoms, when they occurred , for how llong, emotional reactionds