i just want my life back

i cant take it anymore. this is the most horrible disease. cant figure out what im going wrong. i was dx nov 2015, since them i have lost my job, my car and maybe my home is next. i just want to feel normal again. i cant get the right results from meds, now i take 4x a day 1/2 cl &1/2 extended release. 1/2 an azilect in the morning. how come so many people on here for 5+ years of PD say they dont have any problems with what medicine they take and they only take minimal meds, agonists and inhibiters.

43 Replies

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  • Hang in there. I sympathize with you I know what you mean. Parkinson's disease is very individualized different people, different symptoms, different speed of progression. Also, symptoms come and go and change.

    Parkinson's Cycles every 23 days, right now it is the 23rd day that is bad. Things should start getting a little bit better. That is according to my calculations, I keep check on my calendar. All the PDiers cycle at the same time.

  • "All the PDiers cycle at the same time."

    Really?

    Just the ones who are in close proximity to each other or every body?

    23 days? Please tell us more

  • pdrecovery.org/publications/

    Dr. Janice Walton Hadlock DAOM wrote Recovery from Parkinson's and Medications of Parkinson's disease. There is a link up above for a free download. Whether you agree with her ideas or not it makes a really interesting read and it is full of information especially on the medications.

    I Revisited the books and all I could find on a 23-day cycle was a footnote. Of course she has access to her books and she must have changed something and took the story out. She has a lot of Parkinson's patients, however she is not the one that noticed the cycle it was the people that work with her. They observed that the Parkinson's patients depending on the time in the cycle had either good or bad days, all of them at the same time. She has not been able to explain it, what is influencing the Parkinson's people.

    I do not know when the good or the bad days are supposed to be. I have started marking thebad days on my calendar and it does support the 23 days cycle.

    Of course I have Parkinson's and I am suggestible.

    Mary

  • this could be a clue, besides menstural cycles there are other hormones that cycle?

    I read somewhere a long time ago that female fertility hormone was seated in region of cerabllium also.

  • I had a hysterectomy more then 25 years ago and live on hormones. I've wondered about the hormone connection to pd.?

  • don't you have to stop taking these hormones after a time?

  • Hmmmmm.....sounds like a menstrual cycle. LOL I dfinitely want to hear more. I haven't noticed any cycle at all.

  • amazing, any idea why?

  • To me there seems something strange about the meds.

    You were only diagnosed with PD one year ago and yet you are taking 4 times a day

    you have gone right to C/L and half is extended release

    This sounds pretty heavy to me but I am not a doctor, but based on what I know others take it seems high.

    What are your complaints ? I wonder if you have any signs of over medication. Over medication can be worse than the PD. especially if you started taking too fast. I am not recommending that you reduce. That is up to a doctor.

    ******* WARNING DO NOT SUDDENLY STOP TAKING THE MEDS. It can be very dangerous. Withdrawal must be very slow and with DR guidance

    I would strongly suggest that you need to get a second and maybe third professional opinion. It is very common to hear that it has taken a lengthy period of time to find the right doctor. Family MD/ general practitioners do not come across PD often and they may over react, they should and must refer you to a neurologist but often do not. There are many specializing Neros who treat , Alzheimer, Stroke, etc and what you need is one who other Parkies recommend. You can find other Parkies at regular monthly support group meetings. Call the Parkinson society and they will give you the name of the local group leader and phone numbers etc. The society may also give you alist of Neros. GO to the meeting and ask them all what there experience has been and who do they recommend. The Neuro specialist that you should really have is called a"movement disorder specialist "

    Hang in there it will get better.

    Stay in touch

    Please advise what country you are in . Others will be by and that would be helpfull.

  • Gym bag this is great advice, and it would also be very helpful to know specifics as you suggested thank you for sharing

  • Hang in there. Sometimes it takes a year or two to find the right cocktail of meds. I no that sounds like a long time but once you have the meds down life can get enjoyable again.

    I believe that is why we are on this site. So we can better understand our selves and look for new possibilities.

    I believe Bailey said that he feels the best he has now than the last 10 years.

  • Hello Catlou

    Hall-9000 is correct about me. I had given up after 8 years. But a new doctor and C/L turned my life around. Just to let you see how good i am doing. My exercise for today was to run 1 mile do 100 pull ups, 200 push ups, and 300 full squats and run another mile. I did it in 45 minutes 9 minutes faster than i did 6 months ago. Not bad for a 62 year old man10 years DX with PD.

    Please tell us what problems you are having it may be the meds. I thought the symptoms i had where my pd but it was side effects of the meds.

    Never give up.

    Bailey

  • That's very encouraging. Thank you.

  • If you are willing we could use a little more information. What were your symptoms when you were diagnosed a year ago? What are they now? Wishing you Well.......

  • Hi Catlou. Take comfort from what I am about to tell you.

    1. There is no medication on the market that does anything to slow down the progression of Pd. Why is this comforting? It means that you are looking in the wrong place to do something to help you with your Pd.

    2. The only way I know to reverse the symptoms of Pd is to start doing Fast Walking. Why? because fast walking has been proven to reverse the symptoms of Pd. see this - bu.edu/neurorehab/files/201...

    3. What you put in is exactly what you get out. You have not yet tried to do anything that will actually help you. So start now doing something that will make you feel better and healthier.

    I don't know why you lost your job and all your money but whatever it was, just put it behind you and look to the future. I had to give up my job because of my inability to continue trying to do it. Okay, I could afford to give up my job, which you obviously can't and you have my sympathy. I know you can't live on sympathy so you have to do something about your problem. If you contact me on my website - reverseparkinsons.net. I will give you a copy of my book and I will help you to take charge of your life again. Stop feeling sorry for yourself and DO SOMETHING NOW!

  • John, I adore you for what you found out and for your continous engagement and support for others. I'm following a strict walking/high cadence cycling regime (6/w) with good results. I'm wondering only recently if there is a difference in efficacy between outdoor vigerous walking and treatmill walking. Do you have an opinion on that?

  • Hi Jens. Cycling is gooooood exercise, but because it is not weight-bearing it does not do much for the Pd. But if that's what you want to do then do it and enjoy!

  • John, that is just not true that cycling doesn't work. Fast paced cycling (80-90 rpm) at least three times per week has shown through research st the Cleveland Clinic and elsewhere to reduce PD symptoms by an average of 35% after just eight weeks. I do much more than that and have almost no symptoms after nine years. I'm 71 and finished my sixth ride across Iowa last July. Walking at a good clip is good, but it's not the only thing that works.

  • Hi NanCyclist. I was not aware of that study. Can you please give me the website where I can pick that up?

    Does the improvement last?

  • Pedalingforparkinsons.org. Search for Jay Alberts. "It's not about the bike,it's the pedaling". You can also just google Jay Alberts Parkinson's and there are several articles from him and his lab. My results have lasted 9 years and counting.

  • Well done! After nine years you shoud be more or less free of most of your movement symptoms!

  • John you are still using an old 2008 reference, surely if you are right about your claims for fast walking we can see something more recent.

    It does not say fast walking has been proven to reverse the symptoms of Pd.

    It does say: The findings SUGGEST the dose-dependent ben- efits of exercise and that HIGH INTENSITY exercise can normalize corticomotor excitability in EARLY PD.

  • Hi Hikoi. What evidence are you looking for? if you would like copies of emails from people I will email them to you.

  • Hi Hikoi. I am unable to find your last post on this matter, but as usual you keep harping on scientific evidence for what I am doing. I have spent a whole hour looking for scientific evidence and only came up with one, which is very important.

    medicalnewstoday.com/articl...

    It is the only one I could find. But I am not a scholar, you obviously are.

    Here is another interesting one

    jnnp.bmj.com/content/75/12/...

    Your lack of interest in any proof that fast walking is helping hundreds of Pd patients is very frustrating. The fact that scientists are not carrying out scietific studies on Fast Walking does nt mean that it does not work, it only means that there is no desire on the part of scientists to try to prove that Fast Walking works.

    The medical profession has nothing to gain by proving that Fast Walking works and the drug companies would stand to lose a fortune if more Pd patients were persuaded to do fast walking.

    I don't need to ask whose side you are on!

  • Hi John as a lifelong cyclist with PD I know it helps and there is so much info regarding research out there to back this up.On the days I don't ride I do try to do a fast walk but wouldn't give up the bike for fast walking.

    blog.brainfacts.org/2013/06...

    Dynamic High-Cadence Cycling Improves Motor Symptoms in Parkinson’s Disease

    Angela L. Ridgel, Robert S. Phillips, [...], and Kenneth A. Loparo

    And at the Cleveland Clinic, Dr. Alberts et al. found that when people with Parkinson’s pedaled on a stationary bike 30% faster than their preferred “voluntary” rate (or forced exertion), they not only gained in aerobic fitness, but also showed improvement in motor function and coordination as well as manual dexterity. This improvement was retained some weeks after the exercise stopped.

    It Is Not About the Bike, It Is About the Pedaling:

    Forced Exercise and Parkinson’s Disease

    Jay L. Alberts1,2,4, Susan M. Linder1,2,4, Amanda L. Penko1,2,4, Mark J. Lowe1,3, and Micheal Phillips1,3

    1Department of Biomedical Engineering, 2Center for Neurological Restoration, 3The Imaging Institute, Cleveland Clinic Foundation; and 4Cleveland FES Center, L. Stokes Cleveland VA Medical Center, Cleveland, OH

  • Hi Bazillion. I don't decry the benefits of cycling. How many years have you been cycling? If it is as much as 4 years, then you should by now be free of many of your Pd symptoms. I fact, you should be able to com off any Pd medication.

    Cycling is controlled by the conscious brain. I have long been saying that Pd only affects the movements that are controlled by the subconscious brain. You don;t ave to think what you are doing, when you walk or write. You do it without thinking. When you ride a bike it is different.

    I noticed that the patient in the video was able to ride but was not able to get off the bike unaided.

    I have been able to show people how to consciously take control of walking, and any other conscious movement.

    After 24 years I still cannot walk subconsciously or write subconsciously. But I can do them consciously.

  • JohnPepper said: "Cycling is gooooood exercise, but because it is not weight-bearing it does not do much for the Pd."

    John, your information regarding cycling and PD is out of date. For example, it has been established that medication and high-cadence cycling have a similar effect on motor connectivity in PD. [1]

    [1] Beall E, Lowe M, Alberts JL, Frankemolle AM, Thota AK, Shah C, Phillips MD. 2013. The effect of forced-exercise therapy for Parkinson's disease on motor cortex functionality connectivity. Brain Connect 3:190-198

    ​​

  • It Is Not About the Bike, It Is About the Pedaling

    medscape.com/viewarticle/75...

  • Hi John,

    I just ordered your book on reverseparkinsons.net paid by paypal. I was diagnosed with PD in 2014 and I am 60 now. I have shuffling on my left leg and stiff left hand. (Tremors when walking.) Since I read about you in Dr. Norman Doidge's book, I increase my walking excercise and going to gym as well. On treadmill, I try to land left foot with heel first and followed by toe. However, in ten steps, I have two or three times landed flat foot which make me shuffle. It happens the same whether I was walking in the street or on a treadmill. The streets where I walk is in a hilly area and I notice that I shuffle more on uphill and plain but walk quite normal on downhill. I will read more when I get your book. Any suggestions for me.

  • Hi Maungwin. I was teaching a high-profile patient yesterday and that was his second lesson. He was doing the same thing as you, except that he could not see that he was walking in the usual way (subconsciously). Then I suggested that he concentrate on taking a longer step, because he had shown that he was able to put his leg out quite far in front of him, when I tested his movements. So when he concentrated on taking longer steps, he landed on the heel, as required. Problem solved.

    It is very hard to know when you are moving consciously or subconsciously!

    I wish you lots of luck with your book.

    Kind regards

  • Thanks for your reply John. I try to walk consciously as a mindfulness exercise. Sometimes due to fatigue and distractions, I miss concentration. I will keep moving consciously as you do.

  • Hi Maungwin. Two days ago I had a second meeting with a highly intelligent man, who was unable to understand what I mean by walking 'Consciously'. He was able to show me that he could stick both legs out quite far in front of him, but when he walks he takes tiny steps. So two days ago I said to him, take long steps, and bingo, he started to walk properly and while he concentrates on taking a longer step he walks properly. Maybe it is easier to concentrate on a specific part of the step rather that trying to concentrate on the whole step.

  • I have also found that it helps to consciously push off with the toes of my feet. It gets my feet up higher and helps prevent the scuffing.

  • OI!!!, Catlou

    Wot's all this

    I know it's hard when you're first diagnosed with PD.

    I've been on this site a few times now .and fellow shakers are getting used to my brick in the face comments.

    I was diagnosed in October 14. Lost my business my car my driving licence, self esteem ability to do what I used to. like you I was Wrecked Mentally physically and financial .MOAN ,MOAN. MOAN.

    Then one day a friend said he couldn't meet me as usual for a game of pool down the pub..he was busy . Next week same then he was ill week after .

    I'm a thick Yorkshire man but eventually started to click on.

    I confronted him and he spilt the beans.

    We're all sick of you talking about your damn illness .. Don't you think other people have problems?

    My Aunt just died, my niece has terminal cancer and the woman next door has just had a miscarriage.

    I went away tail between my legs .

    Week after my friend called to pick me up for our pool night . He drinks Coke.

    A bit awkward at first but we soon got down to some serious cue action.

    Now we just laugh when I miss the easiest of shots because of my tremor.

    SO WHAT?

    So Catlou I don't think any where in the world they'll make you homeless through PD

    Things WILL get better. Shake your head and count your blessings.

    Now go and get on with it.

    M H 1 England

    .

  • At first i told every one about my pd but did not talk about it any more after that. My first dr. told my family and me not to discuss when i was around it only made me dwell on it. I could bring it up but not them and it made for a lot better times for us. They would just talk among themselves and it is still that way after 10 years.

    There are a lot of way worst things than pd and i am thankful it is the only thing i have to deal with.

    So i say f**k pd and get on with life.

  • Regardless of tone of some comments made, if you can't have a rant on here, where can you? I don't have any problem in seeing how you could have suffered a downward spiral -job/income/mortgage. There comes a point in every long-term condition when you throw up your hands and say "I've had enough of this". Out of this sometimes comes a new way of looking at things and positive action. Perhaps if you can detail the sequence of event regarding the meds. you are on now others can add to the useful suggestions already made

    Ideally as has been said, you should be seeing a neuro.specializing in movement disorders,

    .Best wishes

  • Sorry you are feeling so bad. What are your worst symptons? The stress in your life at the moment is going to make everything PD related much worse. Things will improve when you can deal with that - so much easier said than done.

    Can you get back to your neuro and try some different meds. They seem to work differently in different people.

    Hang in there. Where are you living?

  • I'm going to read all the replies you got but I want to say I feel the same way. I'm newly diagnosed also. August of this year and my physical capabilities are very limited now and it happened very quickly. The meds are eliminating my symptoms but it's the fatigue, major fatigue, that keeps me from doing things.

  • did your recent exam include an exam of liver function.....heavy load of meds could tax liver, that's to be expected, but apparently pd folk are invariably low in taurine (most plentiful amino in human body, already) which is produced in liver.

    no point asking my one-trick-pony neuro.

  • thanks to everyone who replied. this site is amazing. as for my personal life i was a computer specialist/tech for a large school district here in the U.S, almost 17 years. i was in charge of three schools buildings. All the computers, laptops, ipad carts access points, and staff. i walked, lifted and did a lot of heavy work. My supervisor was concerned about my condition as it took over 1 year to get diagnosed with PD. I was walking slow, falling/balance problems and dragging my right side. It was decided that i go out on short term disability which is one year. they have to keep my job (union) available for me till then. that is 66% of my pay. needless to say that has created many financial issues as i am a single mom. My back also started really hurting so saw back surgeon who i know and he referred me to neurologist. one year later they dx PD. i also go to Jefferson hospital in Philadelphia and see a movement disorder specialist. started with neupro patch but that did nothing and kept falling off. started CL about 3x a day 1pill but it started to wear off too soon. tried entacapone made me feel real bad and jittery . so i went to cl controlled release to make it last longer but the wait time to get started was bad so now on 1/2 pill of each 4x a day. movement doctor added azilect but that really didn't do anything so i only take 1/2 in the morning for neuroprotective possibilities. i take NAC twice a day and isradapine channel blocker for my blood pressure switched to this as it is in clinical trials for PD. i have no tremors only slight occasionally while medicine starts to wear off. also my right side starts to drag and hard to walk. i feel it coming on around my mouth and my right lip looks like a stroke but had all kinds of tests everything else is negative. my balance is so bad that i cant do walking as my right leg is impaired even had a achillies tendon tear. i don't know what else to try. my doctors are very well knowledged. and listen to me. they both say i am an exception to regular PD and are open to trying different things. two years later i was back at the back surgeon ho is now sending me to have a lumbar facet joint injection (nerve blocks) and if that works they will do them with heat which last 3 years or more. once again - thank you for all your replies. i think i need to get moving more too.

  • just my opinion, but think you have to couple your meds with good nutrition to help your body cope with strong meds...reduce stress as well.

  • Hi catlou please dont despair u r not on your own.i know wxactly how you feeling becausei m exactly tfe same as you it it is worse and debilitating ill ness its taking everything i like doing.i was o.k. untik may of this year just been been ill since then.juģgling with work.moved in new house just out'of the blue i has effected my movement..i will have to give up my job due to this horrid illness.maybe u should ask to change your meds.i hope you feel better

    niludi

  • You've got a lot on your plate. We all want to feel normal again. In the beginning we are fearful because we feel strange and we don't want to be abnormal. We don't know what's happening to us. We feel like this is a big mistake. You don't even want to see other people with PD because you don't want to have their symptoms. Do you have a support system? Share what you're going through with other people. Keep talking to your neurologist and if he or she is not helping you change. Don't fight the emotions flow with them or you will feel worse. When you feel tired rest.If someone is speaking to you about something that stresses you out stop the conversation. I have more to say butt I am on a date with my husband and will and I will text you later

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