Parkinson's Movement
13,270 members11,859 posts

PD says I can only get dumber at an accelerated rate

As I read posts here i see we mostly concentrate on alleviating the physical symptoms and not much on the cognitive side. Both are of very great importance

You can probably manage to accept an accelerated decline in cognitive ability if you have PD in your 70s, or 80s and have accomplished some few things in life, but if you are in your 40s or 50s it is devastating and crushing particularly when the neurologists tell you "there is nothing you can do about it (apart from slowing it down a little bit)"

I'm in my early 50s and being a very late starter in life, I have many many things still to accomplish and need a lot of physical energy and high steady cognitive ability to push through. I can't think on my feet at public meetings anymore. My attempts to use my brain on the fly - I begin to tremor massively. Not only are my tremor symptoms destroying my ambitions, managing the disease on the whole is overwhelming

These days I can't even have formal meetings with colleagues and business partners without my tremors distracting and eventually destroying any good outcomes to the meetings

I shouldn't have to avoid formal meetings, I need to be able to deal with it, but I can't. I'm fighting a loosing battle.

This is a sign significant decline in cognitive ability and it depresses me

I am encourage though by some few people here whose technical posts indicates strong cognitive ability. People such as iqbaliqbal Kia17 and easilly .But when you enquire further you reallise they don't have tremor dominant PD, I think tremor dominant PD decreases cognitive ability faster than rigidity dominant PD

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I suggest to take 20-40 MG propranolol (indral) an hour before any formal meeting. This will greatly reduce your tremors as well as anxiety. The cognition ability temporarily subsides due to anxiety in such situations. Which medicines / supplements are you talking?

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Is propranolol a prescription drug?

At the moment I take Ropinirole 0.25mg X3, but not regularly at all because rather than it doing me any good the side effect worsens things

I also take Thiamine HCI 1.5g

omega 3 fish oil and cod liver oil

vit d3 with k2

I have purchased on amazon and thus soon going to add the following

Turmeric, super vit B complex folate, magnesium citrate

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Well before I had other Parkinson's symptoms I developed acute anxiety about speaking publicly. My voice and whole body would shake. I read about propranolol being used by some professional performers for stage fright and begged my family doctor to prescribe it. He did so very reluctantly, but it helped a lot. I hope you can get a physician to let you give it a try. I can totally relate to how this problem is affecting your life.

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Thanks for your post. If I may ask..

How quickly does it wear off?

How many minutes before public meeting/speaking do you have to take it?

What are its side effects?

specifically... Is it a PD drug or anti-anxiety/anti-depressant drug or for another thing?

and does propranolol actually (at least temporarily) help prevent tremors for a while?

thanks

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Propanalol is in a class of drugs called beta blockers. It is mostly used to control blood pressure and lower heart rate. You can Google it and get the information you are asking about. When I took it, I would take a tablet about one hour before I expected to be in the stressful situation. I do not remember the dosage.

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take it 1 to 2 hours before the speech or meeting. It's effects last from 5 hours to 8 hours

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Hi Grumpy77

Are you taking any medications for your anexity? I had depression and anexity a year ago leading to panic attack but a low dose of Zoloft has helped me a lot.Sadly Neurologists donot involve themselves and refer clients to GPs for adjusting things like Vitamin D or dealing with psychological issues related to the PD such as depression or anexity.

Talk to your GP. I am sure he/she will advise you accordingly.

Donot loose hope. If you have any questions share with us .

Have you contacted Dr Costantini?

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Thank you very much for the encouragement

Never heard of Zoloft but on next visit I will attempt to prompt my GP to prescribe it. I doubt though if it will ever work this way round (patient suggesting drug to be prescribed to GP)

Since igbaligbal's suggestion is probably a non-prescription drug (to be confirmed) I might be able to purchase that

Many thanks , suggestions much appreciated

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Sertraline, sold under the trade names Zoloft among others, is an antidepressant of the selective serotonin reuptake inhibitor class.In the UK people know it as Sertraline.

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Many thanks for the info

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My neuro prescribed Prozac (fluoxetine) for anxiety. Early days but there is a noticeable improvement.

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Be careful with Prozac. It made my husband start speeding and gambling and buying too much stuff we didn’t need, then he became suicidal. He is on mirtazipine now for anxiety which helps but makes him very drowsy in the mornings.

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Thank you for the warning. How soon after taking Prozac did it start?

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He was on it I think for ages but depression kept getting worse so the doctor increased it. He gradually got less depressed but just changed personality completely from really cautious to completely erratic then he got suicidal until one day he went on a walk and came back early and showed me that before he left he had laid all the papers and keys etc out on the bed for me to find as he planned to jump in front of a bus or truck. I had to get the psych unit to see him immediately. Be careful if you get urges to do things like gambling or impulse buying.

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Oh goodness that must have been awful. So pleased you were able to intervene. I’m not at all depressed but my husband is keeping a close eye on me.

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And at what dose?

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I’m sorry I can’t remember. It was 1 pill then one and a half but I am not sure what amount they were.

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I take mirtazipine but only at bedtime because it causes drowsiness. In fact, I only take 15mg (1/2 of the 30 mg originally prescribed) and it works well reducing anxiety and depression.

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Yes, my husband takes 30 because strangely the sleepiness is worse at lower concentrations (well documented). 15 wasn't enough to control his anxiety and made him sleepier.

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It’s a prescription only drug here in Australia. I’ve been on it since diagnosis in 2005. Yes in my 50’s. Not a great journey but one of consistent discovery.

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Tremor dominant pd is stress aggravated I know! It also affects multi taking but not intellect. I find Valerian as a temporary fix helps. But expect to be dopey when it wears off.

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Correction = multi tasking

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can you throw more light on Valerian, As usual - the first thing I always ask when a med is suggested is.... Is it a prescription med?

The UK very strict and you can never get prescription drugs to buy on the counter. Can you give more info, I mean also how bad are the side effects? Many thanks

First time I'm hearing that tremor dominant PD doesn't affect intellect. I really hope you are right, i really do

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Valerian is a herb. You can buy it from Holland & Barrett. I’ve used the Valerian plus product with Passion Flower which is stronger too strong for daytime use. It gets me through airports and associated hassle

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great! Many thanks for the info. I will research to find out if it is allowed into the UK. Unlike the Dutch the UK is stupidly overly-bureaucratic, particularly when it comes to herbs

They won't even allow cannaboid to alleviate pain for MS patients, how stupid!

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I agree I am older than you but still at 61 I am forgetting words , can’t spell anymore ( thank God for spellcheck) I have had tremors my whole life (famial heredity tremors)and stress makes them much worse!I was finally diagnosed with PD in Nov. 17. I have full blown body tremors , stutter and my mind goes blank when in a stressful situation and not even a higher dose of C/L helps! I feel your pain. God Bless and hopefully some day they will find a cure

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hopefully very soon, if the big pharma allow research, but they probably won't as they stand to loose.

Hopefully a brilliant maverick will break ranks soon

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You might try a supplement called Bacopa to help those frustrating times when your mind goes blank. I've taken this for a few years with noticeable results. I don't notice that it helped my tremors unfortunately, but it's not terribly expensive and you should nnotice a difference in a week or two.

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I took propranolol and it lowered my heart rate into an alarming rate of 42 ! That was taking one pill a day and my former Neurologist wanted me to take 3 a day !!! I asked him if he even ever looked at my chart?and that I felt one a day was to much and I would rather deal with my tremors which were bad enough even on the meds. He also would not diagnose me with PD although I knew that I had it.

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Cognitive functions are a big subject but my experience is that it’s the executive functions not the analytical problem solving. I finding that Thiamine is helping but it’s only 4 days in

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Let us know how the thiamin is working out for you!

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Holland & Barrett is a U.K. shop there’s one in most towns and they do internet shopping

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Oh great! Thanks for this info, I should be able to find one of their stores locally.

I particularly like herb remedies. thanks

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Genius Foods by Max Lugavere. I learned what foods fuel the brain.

I run a company of 25 employees and now I am able to participate again actively.

1) no brain fog, and I attribute this to diet.

2) Thiamine, energy and reduced symptoms.

3) CBD’s. Eliminated anxiety rarely used now.

I’m sharper now than a year ago this time.

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My symptoms started at the age of 29. Like you, I became so bad that I could no longer run my company because I could not speak properly and communicate my thoughts in the way that I had always been able to do.

My neurologist told me the same hopeless story that there is NOTHING I CAN DO TO STOP THE PROGRESSION OF PD! That has turned out NOT TO BE TRUE! I have reversed many of my symptoms! I have been able to stop taking the Pd medications for the past 15 years and NOBODY WANTS TO LISTEN AND FIND OUT HOW I DID IT.

Many have gone to great lengths to tell others that I do not have Pd. Why would they d that? In order to persuade others not to listen to me! I wonder who's side they are on?

I am now 83 years old and living a 'Normal' life, and am begging others like me to get together and find out what is the best way to produce the most GDNF in the brain, which we KNOW REPAIRS THE DAMAGED BRAIN CELLS. It is not a cure, but until a cure is found we can all get better if we are able to produce more GDNF and thereby produce more dopamine in the natural way.

HOW MUCH WILL IT COST TO FIND OUT THE BEST WAY TO PRODUCE THE MOST GDNF IN OUR BRAIN?

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EARTH TO JP: The secret is already out! Those of us back here on planet earth are already up to our ears in studies demonstrating the mental/physical benefits of 'vigorous exercise'. Most terrestrials are already well aware of both its benefits, as well as its limitations (but your missives from deep space are tremendously appreciated nevertheless).

One minor detail you appear to have missed as you float untethered through the cosmos, however, is the fact that no two people manifest the same PD pathologies. Nor do we have the same physiologies, physical abilities, or preferences. Thus, your curious inferences that people will be able to "reverse" their PD symptoms if they would simply contact you for 'fast-walking' lectures and follow the magical JP formula is troubling. This, together with your puzzling obsession with GDNF, is indicative of far too much time lost in space. Ground control hopes you find your way back to earth soon!

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Outer space to Ground Control, I am not hearing you clearly. Is someone down there doing a study comparing the levels of increased GDNF produced by various different forma of exercise? You'll have to speak up, I can't quite hear you!

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As HU Forum's resident space cadet, it is understandable that you could confuse GDNF with some sort of miraculous cure for PD. It's not. GDNF is only one of the various neurotrophic/growth factors generated through intense exercise. And, although NFs offer certain benefits, they are limited and fall well short of presenting any sort of cure.

Furthermore, even us mere earthlings understand that the benefits derived from regular vigorous exercise depend primarily upon the INTENSITY and CONSISTENCY of the activity - not upon the 'form'. For that reason, earth dwellers prefer the advice of credentialed doctors and researchers who recommend that we find activities that we enjoy doing and commit to a regular routine (based upon our individual preferences and abilities). The advice of random space cadets, together with their spacey proposals for spacey studies, serves no purpose among terrestrials. Try to refrain from snorting too much space dust while orbiting the cosmos...

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I have never claimed to be cured. I have never intimated that GDNF is a cure for Pd. You, and others like you seem determined to steer others away from the benefits that can be gained by producing more GDNF in the substantia nigra. The only reason I can imagine for that type of attitude is to steer Pd patients away from doing the exercise that will produce more GDNF and thus repair more dopamine producing cells and reduce the levels of Pd symptoms.

As long as I continue to do fast waling my symptoms are kept at such a low level that I do NOT NEED ANY FORM OF PD MEDICATION AND I HAVE LIVED A NORMAL LIFE SINCE 2002.

Who else do you know who has managed to do this?

What other treatment do you know that can do this for Pd patients?

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I think what you have to share is very helpful.

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Where do you buy space dust? 😀

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All indications are that JP has cornered the supply and keeps it safely stashed on the far flung Planet Oblivion where he is revered as a fast-talking, fast-walking super hero by all inhabitants.

*Fun Fact: JP is Planet Oblivion's sole inhabitant

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You know nothing! You do your best to deter others from believing what I am telling them, but if they have any sense at all, which I am sure they all have, they will see what your goals are. I just wonder if you have any conscience at all!

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An extraordinary ability to remain oblivious to prevailing realities - despite years of well-documented research/studies readily available on a given subject - is clearly the most outstanding characteristic among inhabitants of the distant Planet Oblivion (population: 1). 


The fact that vigorous exercise has health-enhancing benefits is already universally known. When Planet Oblivion's Supreme Space Cadet continues to announce it as if it's breaking news, it simply merits an increasingly bigger yawn each time.

When regular missives from Planet Oblivion go on to repeatedly exaggerate and portray vigorous exercise/fast-walking as something that will "reverse" PD, however, it becomes increasingly insulting to the more cerebral earthlings.

[I am well aware, of course, that all inhabitants of Planet Oblivion will remain oblivious to facts stated herein].

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I completely understand - I am 48 and have suffered the brain fog and anxiety with depression - some days I couldn't organise my way out of a paper bag and was limited to one objective for the day e.g. 'change the beds'.

I don't think I have tremor dominant PD - I have stress tremor like you though. Mannitol has made an enormous difference. I started on March 9th and so far have been anxiety free with levels of organisational ability still going back up. This half term my kids and I have had proper fun going out on complex day trips which is a big turn around. I have commented to people that I feel like I have a new brain. I'm also sleeping well - a massive improvement on the last few years.

I'm only able to speak for myself and, as we all know, PD symptoms come and go but it's been nearly 3 months (and I'm certainly enjoying it while it's like this) It's the only thing I've changed. I also take probiotics and vitamin D.

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That’s so interesting. Some swear by mannitol. Do u think it has anything to do with yr type of tremor ?

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I'm afraid I can't really say - I just started taking it after some people on this site raved about it and it looked like one of those things you can try without risk. I did it after signing up with Clinicrowd to get dosage and I now take it at night as it can cause wind and at night neither I nor anyone else notices and it's gone by morning!

My theory is that my Parkinsons is gut related (rather than chemical exposure or heredity) and so the mannitol is creating a better gut environment and hence fewer destructive things are travelling up the vagus nerve to wreak havoc in the brain.

I can't really comment on the type of PD I have. Nobody's ever said. It manifests itself more in lack of five motor skills and slowness rather than tremor (which is mainky after being on a stressful situation like playing music in front of people as has been mentioned above)

The last time I went to the neurologist I asked about the extent to which PD meds help non motor symptoms and he said sometimes they don't because PD affects more than just the one dopamine related neurological process. This Mannitol seems to help in those areas for me.

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I’m sorry but I have to object to the “if you’re older pd is easier” idea! My dad is recently diagnosed at age 77. He is a registered blind Braille user and an author and this diagnosis is devastating to him and us! He can’t use his Braille machine because of the tremor, one dot in the wrong place can change the meaning of the whole sentence and losing words is something he really struggles with. As he said recently it’s all so unfair!!

I am sad for you getting this dreadful disease young but just because you’re older doesn’t mean it’s easier! I hope you understand why I had to say simetgibh

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So very sad to hear about your Dad. I use a stylus, because of tremor. I am not blind, and I don't know if that could or would help. I agree that just a little tremor is enough to mess up, like, with me, tapping the letters on my phone. The stylus really helps. I use a wire-mesh tipped stylus.

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Read what I wrote again. I never said (or implied) that older people with PD have it easier!

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You might want to consider voice recognition software. I use it. It has an audio playback feature. In the US it's Dragon. $80.

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Agreed.My husband has rigidity dominant PD.So he doesnt tremor and thinks normally but hes getting forgetful but he has a masking face and can get bad tempered when i remind him to do exercise.But he does jerk when he sleeps.The truth is he still cant accept he has PD!

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Actually, Grumpy77, I , also, have tremor dominant PD. Also, 7 is my favorite number. Also, because I am a musician and public speaker, I have had similar problems when I've gotten in front of many people. This went on for a number of years and got worse. You are correct, in that the physical symptoms and cognitive abilities are both very important to address. I have worked very hard at improving my cognitive abilities, by challenging myself to study and learn new things, every day. I choose various subjects. For example, I challenged myself to become technically savvy, in terms of usage of smart phones, recording techniques, photography, and medical and astronomical subjects. By doing this each day, I have been able to retrain my brain to stay actively curious and quick thinking. I read a lot. I had been getting just a little lethargic, but I refuse to accept cognitive decline any sooner than I have to. Also, there are brain apps. and exercises and quizzes, that I do regularly, to keep myself sharp thinking. Clearly, tremor of the hands, head and shakiness in my legs was presenting a big problem for me, also. I was in my 60's at the time. I had resting tremors and essential tremors. Several years ago, luckily, I was referred to a neurologist, who specializes in movement disorders. He gradually upped my Sinemet dosage and added another prescription medicine that has all but stopped both my resting and essential tremors. I have to make sure I take the medicine at regular intervals, so that there are no off times. I'm up to 1 and 1/2 Sinemet tablets three times a day. Now, when I have to do a speech or a performance, I have very little tremor and I have been able to resume public appearances. I'm sharing this with you, because it gave me hope, which I didn't think I had. I am now in my 70's and along with the medicine, and working at improving my thinking abilities, I exercise, with aerobics and walking 60 minutes every day. Also, stretching exercises are very important for me, before and after aerobics. It is my sincere hope that you will be able to procure the services of a neurologist-specializing in movement disorders, and that you will get the help you need, so that you can regain the hope of living with PD, and turn it around, like I did, and make it a winning battle. May the odds be ever in your favor.

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Intelligence seems to be like blood pressure. It can rise and fall and is affected by diet. Reading the posts here has convinced me that pd must be more common in people who think more and.apply more logic than the average bear. You may have had to reroute your fields of interest for survival. This is a really long way of suggesting that you change the parameters that you measure your cognitive function with. I think most people think they have average intelligence and start assessing from there. What if you find that you function at a higher level than most people to begin with? I spent a lot of time with people experiencing dementia and believe two things. One is that their cognition was affected by.the dispositions of the people they interacted with and two was that they seemed more peaceful unless they were over stimulated.

Sometime if you feel the need for a distraction, try writing with a pencil in each hand, Try for a few minutes and focus on one hand at a time, but move both pencils. Don’t get frustrated with your first attempt. It is just an experiment. If you noticed anything, I would be interested to hear about that.

I tried this when my tremor was at its worst and was surprised at the results.

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Actually, it is my understanding that tremor dominant PD statistically has a far slower progression and less probability of dementia.

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I just had DBS surgery. I have just the tremor on 1 side,but very active. It was the best decision I ever made and I am looking forward to getting the battery hooked up and moving into a better place in my life!!!

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Congratulations! Please keep us posted!

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Give it some time before deciding it's the best move in your life. It may well be but it may also turn up with some nasty side effects (hopefully not). Just saying with DBS, from what I've heard, it's too early to call

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Yes I see it too w my bro. I’m trying to approach it on all levels. He knows that when he’s excited the tremors get worst. He even notices when he watches violence on tv in a show or movie he starts tremoring more. Interesting connections.

Maybe you can acknowledge your tremors to your clients and explain that your passion about the project makes you tremor more. Then get on w the meeting. Act like it’s nothing. As best as you can. Attitude is everything. (Not making light of PD just suggesting) good luck

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Good ideas!

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I can only speak from my own experience by no means is it a constantly downward spiral....I could hardly walk 4 years ago, and today I walk 15 kilometres per week. Every walk is a struggle but after a few minutes of shaky steps, my pace slowly increases until my pace is not bad at all..not as fast as others but not bad. The difference is when I gave up 6 years ago, never walked anywhere.... I was reinforcing the situation. I found the same thing at work..if I give up, I am not going to get anywhere...if I pace myself properly at work, (do a reasonable job in, not a very demanding one) rest properly in the evenings, keep busy in the garden about three hours per week, keep my mind busy with music, chess etc all at a reasonable pace, by not overdoing it, I have got much better since 6 years ago. There is a path back and some of it will just happen in the course of remission etc..I am not sure if my case is typical or not, but the improvements have come strangely in proportion to me (1) moving (2) having a good attitude towards keeping your mind stimulated (hobbies etc purpose)

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Thank you jogger. I’m going to read this to my bro n talk about it. I think it will really hit home for him. Thank you for sharing. God bless

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Mild Cognitive imparement in PD is the subject of many you tube videos and papers. It happens to us all at some stage but it is not dementia and does not mean we will get dementia. The challenge is to find strategies to cope with it.

Where did you hear tremor dominant pd cognitive decline is faster than rigidity dominant. I have read the absolute opposite. I think you would be surprised how much better you are and how well you can cope if you were properly medicated.

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Hi Hikoi. Are you sure you don't work for a drug company?

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Advocating that conventional drugs are helpful may not be acceptable to you but does not mean I am working for a drug company. I am merely reporting my experience and what I have observed and read over 20 years of having PD (10 pre diagnosis, 10 post diagnosis)

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Your claim to have been on Pd medication for over twenty years is most unusual. In addition to that, your ability to quote what I said three years ago is also time consuming and requires a lot of mental agility. I know of nobody fitting your Pd history that is so mentally agile. In fact, I don't believe your claim to be a Pd patient!

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You misread my comment about my experience but as has been raised before a few times it is not appropriate to take over others threads.

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I have not taken over this thread. I responded to the first post in which I compared the writer's experience with my own, as his was very similar. What happened after that was the result of other people's responses.

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And I responded to the first post too.

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I admit that i didnt read every reply here but I'd like to suggest you try low dose lithium. Start with 20 mg lithium orotate per day and after 2 weeks youll be told by your peers that you're the smartest person in the room. It happened to me. It was recommended by my great Dr S Todd Robinson in Lakeland Florida. He suggestedthat i read Nutritional Lithium: A Cinderella Story: The Untold Tale of a Mineral That Transforms Lives and Heals the Brain amazon.com/dp/1511716487/re...

After a few weeks i kicked it down to 10mg per day. Im telling you, its a miracle. I had so much brain fog. It was extremely frustating. After 2 weeks many of my coworkers were commenting on how smart i was. I have now been taking it 11 months and brain foggy blonde moments are never a thing for me any more.

And by the way there are studies that say propanolol use is linked to Parkinson's. I used to use it but i wont anymore.

Good luck. Try it. Its cheap and it works. Follow up in 2 weeks after you start ithium.

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Please read the small print in a drug reference book before you add anything. Check the drugs you are taking as well as the ones added. The absorption rate of Carbidopa Levodopa can be delayed or reduced by all kinds of things.

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