Non tremor dominated prognosis

Hi folks. Just hoping that there are a few of you out there who can cheer me up and offer a little hope! I've had PD for about 18 months now and as soon as I suspected I had it, hit it hard with lots of exercise, supplements and good diet. Trouble is, I feel that I'm not responding to meds brilliantly. I responded very well to Azilect but it's effects seemed to lessen after 6 months. So I added 6 mg of Requip but after only 3/4 months, my slowness returning with force. I thought listening to other posters that I might get away with this drug at this level for a couple of years so am rather disappointed. I have been under tremendous stress at work recently which hasn't helped but am concerned that as a non tremor type I'm in for a quick decline. Exercise never gives me the buzz and relief that so many get and coconut oil never had much effect. Sometimes I wonder during all of the sweating whether its tremor dominants who get this buzz? But I'd like to hear from any of you out there who aren't tremored and are - after a few years - still doing okay. Could do with a pick me up! Thanks

65 Replies

oldestnewest
  • Good after noon.

    I am 63 11 years with no tremor Pd. Doing good. Retired and living almost PD free.

  • Thanks Bailey. Actually I thought of you when I was writing the post. Hope you're okay.

  • Hi,

    I really like to know how you do it, do you take any supplements?

  • The simple answer is i take a lot of meds and keep busy and exercise. Yesterday when i woke i was completely without PD i had no pain no stiffness and it lasted for 3 hours. It was so great. I can go weeks without side effects.

    I take 1 50/200 extended release C/L and 1 25/100 C/L every 4 hours 24

    hours a day (6 times), I also take 1 6 mg Requip 24 hour release in the morning. I also take 2 fish oil capsules, one daily vitamin, and one d3 capsule. when I am busy I don't notice the down time. I also do crossfit 5 or 6 times a week. Doing crossfit keeps me strong and teaches one to push harder and don't give up. I go to crossfit if I feel like it or not. It is just part of my day. I never say i don't feel like going i just do. I have gone and just sat in a chair and watched and cheered every one on.

    My son and I buy non running riding lawn mowers and repair them and sell them. I do it just to fill my day. And the profit is high so that helps.

    My advice is to try any med your doctor will give you and don't give up when the side effects come. Just keep in mind they won't hurt you and ride them out. That is what i do and they become less and less over time.

    I had bad side effects that put me in the er but if i had known what i do now i would have just rode them out. I still have side effects but mostly light and only at night.

    Don't give up it took me 8 years to get it right.

    My personal best are

    405 pounds dead lift

    260 pounds back squat

    205 pounds front squat

    I did the following in 45 mintues

    1 mile Run

    100 Pull-ups

    200 Push-ups

    300 Squats

    1 mile Run

    Not bad for a 63 year old man

    PS

    I started Crossfit 2 years ago and had never worked out before then

  • Almost PD free?

  • yes see my reply above

    I work hard for it.

  • Hi Jeeves 19

    I've lived with the enemy some 12 years now and been taking 1mg Azilect per day for the last 2 Years plus all the other l-dopa meds

    and I've found Azilect effects has not redUced I am also tremor free for which I'm very grate ful for to see what some of the PD family have to cope with my heart goes out to them,

    In the mean time we never give up in the hope for a cure

    Keep positive

    Sunnysky

  • Thanks Sunnysky.

  • Azilect works best if you add some carbidopa/levodopa. Use a slow release version like Sinemet CR, Rytary, etc.

    Also take a look at NAC

    journals.plos.org/plosone/a...

  • Hi Jeeves 19, I'm going now for 10 years with non tremor type Parkensons (yes I have no tremor) I was put on sinemet right from the start. I am still doing fine in my on times, although I am now on a very high dose of sinemet-i0 sinemet 25/100 mg a day-which is pretty high. I'm still "on" for most of the day and functioning-can still walk (A bit of shuffling or freeze-up in cluttered spaces) but that is quite normal to pd.Sometimes I feel that the no tremor is an blessing especially when I need to do something that needs a steady hand.I have also read an article about quick decline in PD without tremor but I have also seen posts from PWP that have no tremor and is going for 18 or more years. Parkensons is different with everyone, weather you have tremor or not. Parkensons is not easy on any of its sufferers. The fact that you responded to Azilect is a good indication that you do not have any of the Parkensons plus syndromes-if you respond well to sinemet it normally is accepted by the PD specialists as a indication that you have Parkensons with dopamine deficiency.No doctor or specialist can tell you how long you will be ok (a specialist told me three years ago I will become akinetic rigid (stiff like a pole) within two years-well it hasn't happened yet-and I am not waiting for it to happen either.It appears that your specialist do not want or put you on sinemet yet,but if you don't respond well to the agonists treatment, suggest sinemet (low dose) to your specialist. I pray that you will also experience the blessing of some good years of meds honeymoon as soon as your doctor finds the right combination of treatment that will be best for you.

  • Many, many thanks for taking the time. Best to you too.

  • I think you are measuring your decline against a sub-optimal medicine schedule.

    If you make adjustments you may come out ahead.

  • Hi Jeeves. We have chatted before, but not for a while. I only tremor when I am trying to do fine motor actions, like drawing a straight line or fastening a button etc. It is much worse when I am stressed. My major problems still are: constipation, insomnia, choking, swallowing, salivating, speech problems and memory. All of these problems get much worse when I am stressed.

    I gave up my high-powered job the day I was diagnosed, on the advice of my neurologist. I have had to go to the gym every day to exercise, because of a serious back problem. For the first two years after diagnosis , because I had a lot of spare time, I increased my gym by 50% to 90 minutes a day, six days of the week. My symptoms appeared to have got worse much quicker during those two years, so I gave up the gym. My late wife was very anxious about that, because of my back problems, so after 3 months I took up fast walking with her.

    She had been doing the walking program for nearly 3 years and had lost 14 kilograms in weight and had come off all her blood pressure and antidepressant pills. In fact she no longer needed any pills at that stage. After 4 months of fast walking for one hour, three times a week my symptoms started to improve and have never gone back to where they were in 1994, which was when I was at my worst.

    For the last 14 years I have not taken any Pd medication nor have I needed to see my neurologist. At 82 I live a 'normal' life and thank God every day that I gave p my job in 1992.

    It costs me 3 hours of fast walking a week, no medication and no doctors bills. Is that a lot to pay for good health? You might not fancy the exercise, but you get to love it, when you start feeling better. We are not all alike, I know, but give it a try, IT COSTS NOTHING!

  • Hey John. Thanks for the post. I think the issue for me is that the exercise doesn't give me the relief I'd hoped for. Ever since I knew I had something wrong I researched it and found out that either your fast walking or the high speed cycling were both for me. I've done both for about 15 months now quite intensely and I'm definitely getting worse. I'm not one of those people that reckons you don't have PD John, but I think the variances of the illness are bizarre and quite annoying! So many had relief from coconut oil but it made no difference to my symptoms. I have a theory that exercise makes more difference to some than others also actually. I've considered that I might have Parkinsons+ but know that I lost my sense of smell which isn't often a feature of CBD for instance. And there are other reasons why I don't think I have MSA. But I have to say when I hear some posters say 'exercise works wonders for me', I'm a little jealous.

  • Hi Jeeves. Did you do fast walking and cycling at the same time? You can do too much exercise and do more harm than good. You will not see much change within 6 months. You will only have just got up to one hour walking, which you should then continue to walk faster and faster. It took me 4 years before I knew that I was a lot better. It happens so slowly that you don't notice it. Be patient and don't do more than one exercise at the same time.

  • i am just like you at my wits end...up tp 15 cl a day same for exercise

  • Hello John, we have met and have exchanged emails....since then health issues have complicated and messed up my life and hopes!!

    I have been diagnosed with PD 6 years ago, no tremors but movements difficulties., I also have anxiety disorder, knee osteoarthritis ,insomnia, backaches...,lately backaches got worse & into left thigh and leg , was seen by a great spine specialist ( my husband back surgeon! ) and after MRI he recommended a spine cortisone injection which I got and it did released the strong thigh/leg pain but I still have backaches, more at end of day or after standing or going , for some time!!

    Some of you have already read the following in other posts sorry!

    Each Parkinson patient has experienced different results taking CL, here is mine :

    Diagnosed 6 years ago , even though resisting taking medication, I got convinced by Drs and family members that it would improve quality of life! I started then LD and it was increased to 8 a days as PD progressed but it never removed all disorders!

    For my first time, in 2016 I have participated in a Clinical Research “Neurodegeneration and Brain Function in Aging with Parkinson Disease” . On 8/18 an MRI was taken while OFF medications since 6 pm the day before - 1st time on No medication since diagnostic - in the morning I suffered many times with Dystonia, freezing, needed my husband help for me to get ready...To our astonishment after noon I was able to get off the car by myself and then to walk on to the registration desk , perform many movement tests, take the bus, first golf cart ride , MRI etc ...with no problems , was fine and surprised from the positif result !!

    Since then with my Neurologist help , I gradually reduced CLto 4 instead of 8 and feeling well, more energy, less apathy , no more freezing nor Dystonia!!!!

    EXERCISES was my theory : weekly 5 hrs regular walk + 2 hrs Yoga class + 3 hrs exercises for PD class + I had started to follow your advice John Pepper for 3 x 10’ fast walk a week !!!

    Here is John's link:

    reverseparkinsons.net

    BUT because of worse backaches , thigh & leg pain I had to stop the fast walk , then after consulting my Neurologist Dr, I decreased 1 more CL tablet a day , only for a month as I have found out I could no longer fonction normally, had movements difficukties, needed help to get dressed & undressed etc...increased it to 4 again, which makes it better but not perfect!, especially on off time and at the end of a day with stress! Also my spine Dr recommended no exercises for a while , I stopped going to classes and walks , I will see him next week and will get his advices. I am hoping to return to waking 3 times a week , I realise going to exercises & yoga classes had been stressful because of driving distance too many days, I need to review my schedule but don't know what to give up!!! I think 3 days off exercises would be my incline to concentrate on office work, Drs appt , house shores or just relax! Arthritis specialist recommends I use a bike daily for 30', Xmas brought me one but I have not used it yet because of health issues!

    I realise and have to admit CL is a daily necessity!!! If spine Dr authorises exercising again , I am open for suggestions John and others, should I walk, bike that's it or add yoga , exercises classes?

    Best to all, keep fighting PD.😉

  • That's one helluva post girl!

  • Wow! If the 4 x CL helps you then stick to it. I would recommend that you sort out your back problem. I found that strengthening my core muscles helped my back problem. Weak core muscles means a weak back and having back problems.

    As far as exercise is concerned, I have found that I was doing too much exercise, so I cut out the 90 minutes of gym a day and just did the fast walking. You know the routine - Start doing 10 minutes every second day and add 5 minutes every second week until you are doing one hour. Don't overdo it!

  • Great to hear from you John ! Thank you for the suggestions. My Spine specialist sends me to physical therapy to strengthen muscles, and I have decided to go back to walking, and 1 hour /week Yoga + 1 hour /week PD exercises for now. Hoping after therapy ends to add fast walking ! I cross my fingers for better days!

  • Hi Bouffere. I hope you let everybody know how well you are doing with the exercise. That might encourage others to do so as well.

  • Oh yes I do , John ! Again Tuesday in a lecture I met this lady whose Mom has PD and I told her about exercises, we exchanged emails and as soon I was home I sent her the infos about the exercises for Parkinson 3 times a week I have been in ....

    Yesterday I scheduled 12 physical therapy one on one treatments for my back and intend to start using again my new Recumbent bike 1/2 hour daily arthritis Dr's order, continue walking 3 times a week for minimum 1 hour, adding 1 hour yoga and one hour PD exercises class if my body accept to handle it! My preferred time is outdoor walking!

    Take care and best to all!

    Chantal

  • Hi Chantal. Please don't do one hour of fast walking if you have not been doing it slowly from the beginning of 10 minutes per walk for 2 weeks and building up slowly by 5 more minutes every second week. If yo are not walking as fast as you can, from the beginning you will get no Pd benefits. Please email me - johnpepper@telkomsa.net

  • I have been diagnosed 5 years and have no tremor. I'm on Sinemet and Azilect but I add in several supplements including Co-Enzyme Q10, turmeric, vitamin B complex, vitamin E and Omega 3. I also do tai chi, yoga, Dance for Parkinsons and Nordic Walking. Keeping fit is essential. I am still told that I don't look or act as if I had PD. Keeping informed and positive is vital. These forums are invaluable. Keep your head up high!

  • I have had non-tremor dominated PD for 10 of the 16 years I've been diagnosed -- and Sinemet + removing mercury fillings from my teeth are the only 2 items we've been able to correlate to that merciful absence. If I could restart my meds, I would stick with Sinemet alone (C/L) and not even THINK about taking an agonist! Don't know if that helps but that's my take. (Unless your neuro is open and has faith in your inner guidance, he/she will likely flip out at this suggestion).

  • What's wrong with the agonists? I admit they don't seem to work too well but I'm only on 6mg. But I think that's what got me investigating: so many people do well for quite a long time on this dose and I was surprised why it wasn't fixing me, especially when I exercise so hard. Then I found out that progression can be faster with the non tremor.

  • I was diagnosed with stage two Parkinsons in 2001, and have no tremor... I take sinemet 25/100, 14 pills a day. I asked my Neurologist if the medication was too high and he asked me if I was having any bad side effects from it... I said I wasn't and it helps me stay "good" and he said, then it's not too high. I have figured out that my "battery" has only so much charge... if I use it up too quickly, then I have to rest for longer periods. I have a passion for music, and have been playing guitar most of my life... I believe the music is keeping me in good mental health. Learning new songs and playing with different tunings, and in two bands keeps my brain working and challenged. I am going to be 65 in April and see no end for my music in the foreseeable future. I do suffer from loss of balance, rigidity and a slow shuffle from time to time, but for the most part, I'm physically able to do many things. Everyone responds differently to this monster, so try to keep that in mind. Try to keep a good outlook.

  • Thank you all so much for the encouraging posts. It's just the sort of stuff that one needs when you're a bit down. So appreciated. I don't think things are helped by having a senior post in a big school, but I'd be just as stressed if I had to retire as I have children to consider. Life's so tough sometimes.

  • I have been diagnosed for 11yrs, I have never had a tremor. I had DBS in Sep16, this has been partly successful, we are still trying to get the programming/drugs balance right. If Ropinerole doesn't give you any side-effects, I would suggest giving that a try. The thing I suffer with most is "freezing".

  • Cheers Andrew.

  • andrewj

    Is your "freezing" due to been on Ropinerole/Requip or is it your worst pd symptom? If so what other treatment you take that helps with the freezing? I am 46 yrs diagnosed 11yrs ago been with only 12mg of Requip but started freezing a few months ago. Does anybody knows if there is a specific med/supplement that aliviates this horrible feeling.

  • I don't take Ropinerole any longer because I suffered badly with the side-effects. However, for me, it was very effective at controlling my freezing. There seems very little I can do, or take, to combat this, it is very frustrating.

  • Sorry, Requip is Ropinerole, I would up the dosage of this, as long as you don't suffer with the side-effects.

  • Jeeves

    Ive never read or heard that non trmor people have a quicker decline and now in my 9th year ive lots of friends with pd and the ones with stiffness dominant are doing as well as the tremor ones..

    i have noticed that they often dont seem to get quite the relief from meds as the tremor people but they are all ok and sometimes i envy them with no shake! One friend 10 yrs on manages on long acting sinimet only and has an active life with young children.

    I remember you were hoping do be drug free for as long as possible but as you see everyone has needed treatment and i think it is especially hard to work fultime without adequate meds. Azilect has a mild effect, requip helps , personally i like using combined meds those two plus a little sinimet. I went up quite quick.like you but then i adjusted timing etc rather than add alot more.

    I reckon you are completely usual in your experience and that you are actually managing on a very low dose. You may get more reward from exercise if you are better / higher medicated.

    Best wishes

  • Nice post Hikoi. Thanks. Hope you're well. I think that I used to read all these stories about exercise and low/no meds and thought 'that'll be me too'. I went on requip in November (early) but have had a definite worsening of symptoms in the last fortnight. This followed a very stressful week at work and I found myself thinking that I might go up to 8mg. But then then I thought: hold on, all the exercise and supplements ought to be holding me on this 6mg for a couple of years, not months! That's why I started doing some research and found academic papers declaring the nonT to more aggressive/rapid. Upsetting as it rather takes power out of ones hands. I'll always exercise, won't stop but my goal and vision has been a little shaken to be honest. I always found that NonT are more susceptible to dementia which hurt.

    But thanks for the insights into those that you know doing well. Always a tonic. Maybe they'll come up with something to cure it one day?.

  • hang in there, keep up the exercise! have a glass or two of wine everyday!

    and if you are having a bad day, remember tomorrow will be better!

  • My husband has had non tremor PD for 15 years. Besides the usual carbidopa/levodopa over the years I have always given him 400 mg of Coenzime Q-10 with the neurologist's permission who felt it couldn't hurt him and might help. He is still walking slowly but on his feet after 15 years!

    He is pretty far along in the disease now as far as weakness in his legs go and memory problems but recently has been put on Rytary which came out this past Fall and it has been a big help.

  • I should have also told you my husband worked 10 years of those 15 years. ... computer work. He also walked 1 mile a day for a long time (he hated the gym) and then 1/2 mile until it was too much for him. But I really feel that 1 mile walk, etc., was very important when he first was diagnosed. He does mild exercises at a Day Care Center now. He has always felt exercise was the most important thing and you might not realize it but it is helping! Keep moving and keep your chin up. So many treatments are being tested and will be coming out down the road.

  • I don't get the same buzz I used to get from exercising, but I do feel calmer after I exercise. I enjoy that. I wonder if the loss of the buzz is due to the drop in dopamine. I am on azilect and the inosine trial.

  • Jeeves. Do I understand correctly that you are taking Azilect and ropinerole - but not Sinemet? I was on that same regimen my first year (was DX with Non-tremor dominant PD just over 2 years ago at 55.). The agonist worked to a point but I wasn't able to move as much as I wanted to with my exercise (tandem bike, walking, swimming, boxing).

    I added Sinemet last spring, titrating to 3 25/100 pills a day. The first time the drug kicked in, I was on a morning walk -- suddenly I was striding as I had in my life before PD. It was such a sharp transformation, as if I’d spent the previous year in a virtual reality filmstrip “This Is What It’s Like To Get Old” and now could get on with life.

    Except of course, I still do have PD and I get those glimpses of "Me, Older" daily, several times a day - whenever the CarbidiopaLevodopa wears off. A year in to taking it, I’m at 4-1/2 pills a day - and lately feeling a wear off before 4 hours are up. Still, given how poorly I'd walk otherwise - as seen during my off periods - I am happy w the decision to take it.

    As for the exercise, I usually don’t get a rush from it but I feel like hell If go more than a day without. All along I figured the exercise wasn’t just for the immediate release/relief but also provided a more long term benefit in terms of Growth Factor. So I exercise.

    I”ve also found sleep a huge factor. As with exercise, if I skimp on sleep Im paying a price. Reducing stress can also help. Is it possible to at least reduce your workload?.

    Thank you for your question and for drawing out so many to talk about NTD PD.

  • My pleasure Motal. Hope you're still cycling.

  • Oh, yes. 3-4 days a week. aLately finding music helps enormously w the cadence.

    About which, this recent posting by Pamela Quinn may be a help.

    pamelaquinn.net/blog/2017/1...

    She has a really dynamic playlist in there. You can get way beyond 85 rpm in a heartbeat...

  • Motal. Do you use any sleep aids (amitriptalyne, melatonin) or you just 'sleep'?! How many hours can you achieve? It seems to be a bit of a pot of gold for many PDers. Desired but somewhat elusive.

  • Jeeves.

    If I get 5 or 6 hours of sleep, it's a good night. That's usually interrupted - about 4 hours is all i can sleep on one side. Cos of my lack of side-to-side mobility, I'll wake up and have tp go thru the very conscious effort and tussle of turning to sleep on my other side.

    As for sleep aids, melatonin made me dopey after 2 nights of taking it. I don't take anything consistently at bedtime.

    Are you on line or doing computer work late in to the night? I ask cos the thing that most helped me go from 3 hrs of sleep to 5 or 6 hrs was getting away from the computer, phone screens at night. That screen's rays are keeping your brain from triggering the melatonin it normally would produce. No melatonin, no sleep

    To avoid repeating myself, here's a link to a post i replied to a couple of months ago. (It also links to a Harvard Med study on the subject: )

    healthunlocked.com/parkinso...

    It takes some discipline to shut down the electonica a few hours before you want to sleep. As with so much in PD-World, I get it done with a lot of help from my friends. In this instance, my husband has throttled back the internet access to my computer after 9p.

    Which may explain the delay in getting back to you..

    Motal

  • Can I suggest a book written by Nick Littlehales called 'sleep' I downloaded it on my kindle , he works with elite athletes, it's really easy to read and really interesting, dispelling the myth we all need 8 hours a night !! It gives lots of ideas to help you get good quality sleep. 😀😀

  • and me to you! Thanks a lot. I was taking Amitriptyline for ages and ages, way before I 'got' PD. I relied on it for years to give me a great sleep and it removed many of my chronic aches and pains. I have actually read that some scholars are detecting a link between PD and long term usage of this drug. It was a life saver for years and now I'm wondering if it was actually a killer! I'll never know. Now on melatonin. It works reasonably well but I wake up too early and have been told that I need timed release which sorts this problem out. Oh for the days when we were 16/17 and sleep never had to be coaxed or engineered. Best.

  • I have the non Tremor PD and I found The Agonist did not work for me at all, made me feel quite ill, but the sinemet works great. I take a little extra when I exercise, otherwise I feel like gravity has increased and it's a real slog to keep moving.

  • Thanks Enidah. I'll bear that in mind.

  • I haven't been told which type of PD I have, but as I only shake occasionally I assume it is the non tremor version.

    I have improved over the past year taking azilect, magnesium and NAC. My most annoying sympton is my left thigh muscle never relaxes.

    Recently I have started to split my azilect dose takinghalf at night and the other half 12 hours later. It seems to have helped and my leg is not as annoying when watching tv in the evening.

    Have you tried NAC?

    I am 52 (53 next week!) diagnosed a year ago.

  • Astra, much NAC do you take? I was thinking of trying 600 milligrams in the morning and then again at night. I have no idea how much is the right dose but I like to give it a try.

  • I now take 1000mg as I have it in powder form. I suggest you start with 600mg first for a few months. It dries out mucus membranes at first until your body adjusts, and can give you a dry mouth and constipation.

    If it works for you then double the dose after a while.

    Will be interested to hear how it goes.

  • thank you so much for the information! I am much more likely to keep taking it knowing I'm not alone. I will do as you suggested, start with one and then work up.

  • Yes. I take NAC along with a range of other supplements (mainly anti-oxidants)

  • My hubby has tremor dominant PD but adding Amantadine to his regimine helped with the stiffness and rigidity in his shoulder tremendously! He is on Sinemet and supplements. Might be worth a try.

  • I just got back from a 10 mile bike ride. Not as impressive as it sounds as it is very level where I was riding. I realized, having this topic on my mind, that I don't get much of a thrill anymore from riding but what it does do is get rid of my anxiety so when I get home I can actually relax. It lifts my depression and anxiety so I make myself do it. Part of what helps is getting out of the house and being around other people. The thrill is gone, but the peace of mind is worth it. When that goes... well, I don't even want to think about it.

  • It kinda looks to me like you are self diagnosed and that you seem to be determining your own medication and that you think that with the right mix of medication and exercise is going to eliminate the PD or eliminate any increase in the rate of decline.

    If so you will look back on this as being a huge mistake. I hope my intuition is wrong.

    Do not take mediation based solely on the advise of some strangers on Internet forums. Talk to a Doctor who is a Professional Movement disorder specialist.

  • One can't determine your own medication here in the UK. It has to be prescribed by the neurologist.

  • Hello Jeeeves just sharing my story. Ive dealt with symptoms for 10 years.Because I have very little tremoring most doc did not diagnose me which was very depressing. My symptoms seem progress where it was hard to get out of car, stand from a chair along with pain and stiffness. Finally my doc at usc tried carbo/levo which worked with lessening symptoms and showed evidence I have Pd! The doc added Azilect which further helps. The depressed part for me is that even my friends at first could not believe I have pd. I don't care about sympathy but just understanding. It is hard to be in crowds and social situations. Not knowing the future of this illness can be daunting I found being proactive has been a positive. Also music and exercise so helpful. Take care. We are in this togather.

  • Want to add: stress makes my symptoms worse. That is Important to do what we can to lower stress levels.

  • Hi Opt8. Yes, I know what you mean about the battle to get dxed. I still have friends who ask me if I'm sure I definitely have it! maybe I should take it as a compliment? I think most are schooled into thinking that the only symptom of the disease is a tremoring hand. It's nobodys fault really but it does indeed irritate as time goes on. Thanks for taking the time and I hope things go okay with you. best.

  • I was diagnosed four years ago. The first three years I was on Azilect and exercise. Then I stopped taking Azilect because I wasn't feeling well and started with the amino acid therapy which emphasizes the Mucuna powder. It's a natural form of levodopa. The protocol was established by Dr. Marty Hinz. Although my writing is still slow (but improved)I feel better and the mental focus is better. I still work but I'm considering early retirement. Most people would never know that I have Parkinson's

  • Also, they claim that this protocol will halt the progression of PD. We will see

  • Hi Jeeves I am non tremor diagnosed 2013aged 48 having worked in a stressful dangerous at times outdoors mostly and I needed to be physically extremely fit.

    It came as a shock when all I was experiencing was a tired left arm and a slight weakness and mobility in my left fingers. Fine motor movements like using a screwdriver etc.

    I was a gym jockey for most of my career had to be to do the job. I haven't been to a gym since as my self confidence took a nose dive initially and then I got lazy I suppose as I had to retire due to rules and regs at work.

    They did offer me a desk but that's not my thing

    I've bee retired since 2015 and now I find that my motivation is family cooking and my goddaughter whom I look after almost every second day she is two years old and believe me you don't need a gym after a day chasing her around.

    You need to stay reasonably mobile that's a given, but walking the dog or motorcycling does me now a days etc. I believe you need to slow down and do what you feel you are able I don't see the sense in over doing stuff as your body won't be up to it and in the end you'll feel worse as a result. Pd is not the end of the world it takes time to adapt is all.

    I still enjoy life to the full albeit get the hump sometimes when people comment on I don't look or act like Michael j fox. Not having the tremor is a bonus you'll have enough deal with. Stay strong if you feel like exercising do it but do it for you not to please others.

    Regards and good luck Henry.

  • Hi Henry. Thanks for a nice post. Very generous and insightful. I haven't got my hands on any CBD oil yet and to tell you the truth, am unsure about it at the silly prices they charge. Maybe an excuse to go to Amsterdam! If you can't sleep, try Amitryptaline btw. Gives me an awesome snooze but I took it for 15 years and I wonder if it brought my PD on sometimes. But I used to sleep for England when I took it. Still have one as a treat from time to time.

  • Cheers Jeeves I found when I took amitrypaline I was having very heavy sweating had to come off it. I watched some Italian videos on the oil and they were amazing if true it had almost an instant effect.

    Stay strong regards Henry.

You may also like...