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Jobear2016 profile image
56 Replies

Just been diagnosed with PD does anyone have anything positive? It's quite scary! I take Sinemet and it helps somewhat but I am still really stiff down my left side.

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Jobear2016
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56 Replies

John Pepper's Parkinson's Disease Journey - youtu.be/_QVIdPo71gI

Pauldmd profile image
Pauldmd in reply to

I had read about John Pepper's phenomenal improvement after instituting a fast walking exercise regimen. This was the first video I have actually seen of its results. I have developed a very similar coping mechanism to control my symptoms. Despite John's emphasis on fast walking, I have found that I am able to function fairly normally despite being unable to exercise because of chronic severe back pain related to my Parkinson's disease. I was diagnosed in 1999 after a decade of what seemed to be incongruous symptoms. In fact, if it had not been for an offhand comment by my GP, which caused me to research Parkinson's disease myself, I don't know when I would have been diagnosed.

As a practicing dentist up until the time my fine motor coordination deteriorated, I had somehow without realizing it found a way to suppress my tremors. At that time I would tighten my muscles to keep from shaking while I was working, which only increased my back pain.

I had DBS surgery in 2008. The surgery was very successful but as my disease progressed it became less effective. The one distinct advantage it provided was a sense of where my brain needed to be stimulated in order to suppress the tremors. In fact, as I became able to suppress the tremors through concentration I found the DBS was interfering with my ability to do so. I now keep the settings just above zero, which provides me enough of a target to focus on but has no clinical effect on my disease.

The important take away from John's video is that approaching daily tasks in a slightly different manner can be enormously helpful. I came to this realization after a great deal of reading about Parkinson's disease and the recognition that the actions most affected are the ones we learn early and then do without thought. I am constantly aware of my stride length, foot position and arm swing when walking. I also, as John suggested, hold the glass differently. My own description of this process is "dancing with Parkinson's disease". In a way, you are choreographing your movements in a different way than you are accustomed to.

I admire John's fervor and spreading the word about his success with his techniques. Even if he helps a handful of people his efforts are worthwhile and admirable. I have found that while I am able to assist people, the enormous concentration that this kind of control takes is often overwhelming for people and they often do not remember to use these techniques in the heat of the moment.

It is easy to give advice to another when you are not in their shoes. I will share what has worked for me and you can take it for what it's worth. I came to the realization early on that the world does not care or notice that I have Parkinson's disease and that I would have to accommodate my surroundings and not the other way around. It is easy to become frustrated with people when they make things more difficult for you, but most of the time they are unaware of your situation. I have also found that I have had to give up almost all of my hobbies. Instead, I try to find joy and satisfaction in the things I can do, even if it is as simple as helping someone else. Which brings me to my last suggestion, keep your focus outward. If you are able, being assistance to others keeps your attention off of your own problems and can be satisfying as well.

I have looked at my own Parkinson's situation as a challenge to be overcome. Sometimes an obstacle can be removed, sometimes you need to adjust your course around. Attitude is everything. Exercising is of enormous help and I miss it terribly. This is a wonderful and supportive community. Please reach out if I can be of any assistance.

Jobear2016 profile image
Jobear2016 in reply toPauldmd

Hello and thank you for sharing your story. Best Wishes jo

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply toPauldmd

As a Doctor do you have any Alprazolam? I am 52 and was officially diagnosed over 6 years ago. I have experienced the same symptoms as well. After a year and a half trying to treat the symptoms aka the back we started looking at the cause. Do you know that anxiety can cause back pain? Yes I do to. The first time I took 0.25mg of Alprazolam my back just released. It was like magic. I know that 0.25 is an extremely small amount but that is all it took for me. I take it 3x daily and I no longer have the dagger in my back. I do get tight some times but I take a 4th pill it takes away the soreness.

Jobear2016 profile image
Jobear2016 in reply toSerenity_finaly-1

My neurologist said that anxiety often associated with PD. alprazolam? Will look it up.

Thanks

TheresaCurley profile image
TheresaCurley in reply toJobear2016

Alprazoalm is Xanax.

Pauldmd profile image
Pauldmd in reply toSerenity_finaly-1

My back pain seems to be associated with my resistance to stooping forward. I had started to develop a stooped posture almost 10 years before I was diagnosed. My symptoms are very advanced but so well controlled that my neurologist said that if I walked into his office for the first time he would never suspect that I had Parkinson's disease. I'm on no PD meds presently and haven't been since 2008. I am by no means "cured" of PD. Compensating for my symptoms is a full time job. Looking back, I had started developing some significant symptoms in my late 20s. I am now 64. If I do not spend every waking minute focused on my movements, speech, even breathing, I am essentially bedridden. I am thankful for my ability to do this but its a tough trade. I am able to do things I would otherwise not be able to do, but doing them takes an enormous toll. However, when I am able to get on the floor and play with my grandchildren it makes whatever effort it takes more than worthwhile. I am also blessed to have a very supportive wife, 2 daughters and 2 wonderful sons in law. Having PD has made me appreciate every day and the people around me.

Serenity_finaly-1 profile image
Serenity_finaly-1 in reply toPauldmd

After hearing your story I hope I'm as well as you 10 years from now.

TheresaCurley profile image
TheresaCurley in reply to

John has a lot of follower's that believe they can be cured with fast walking. Exercise is very healing for the body and highly recommended for all PD patients. I however am a skeptic and do not believe you can be cured of PD by exercise and believe that those who claim they are were misdiagnosed. JMO

laglag profile image
laglag in reply toTheresaCurley

Don't ask me why this popped in my head, but...Do you believe in Santa Clause? Might have something to do with the placebo effect? And that exercise has shown to delay and help symptoms of several diseases.

Jobear2016 profile image
Jobear2016 in reply toTheresaCurley

Hi I can only walk very slowly so don't think that plan is for me!

Pauldmd profile image
Pauldmd in reply toTheresaCurley

Judging from the video John posted he certainly does not seem cured if his PD. He is merely managing his symptoms better than most. I have had success as well using similar techniques but don't consider myself cured. I appreciate what you are saying. Perhaps people are using the word cured generously. What John is doing takes a great deal of willpower and concentration, fire which he deserves a great deal of credit. His evangelical zeal in spreading the word is admirable. For whatever it's worth, I'm not someone who ascribes to the philosophy that if i can do it anyone can, so I am more reserved in my sharing of my coping techniques. I have found that both patients and spouses may become frustrated and disappointed if they cannot duplicate my success. I agree with you wholeheartedly that anyone who is "cured" of PD with exercise never had it in the first place.

stevie3 profile image
stevie3

Hello. Tell us a bit more - what age bracket are you in, what country are you from? How long have you had symptoms? I'm a 58 year old woman living in the uk just going into my third year post-disgnosis but like a lot of us I'd known something was wrong for a good couple of years prior to that.

I was partly relieved when I was diagnosed and partly shocked. I'd thought it might be something worse, but I'd hoped it was a trapped nerve (although I knew it wasn't really). The positive news is that you will come across people on this forum living active full lives years after diagnosis. It means some adjustments, but there is life after PD. Exercise is critical, there are differing views about the effectiveness and side effects of medication and there is a lot of helpful information about supplements. Take some time and look around the forum - I credit it with giving me more resources than anything else.

From a personaL point of view, I'm still working 3/4 days a week, I go to the gym as often as I can and I exercise daily. I take aziclet and 6mg of ropinirole and I also take a number of supplements and aloo some 'alternative' stuff you'll read about - you have to work out what's best for you. Emergen C has really helped my stiffness. I'm doing ok, today, and today is all any of us has!

Jobear2016 profile image
Jobear2016 in reply tostevie3

Thanks for your reply. I am a 55 year old woman and have had symptoms for 7 years. Like you I hoped it wasn't PD but sort of knew it was. I live in the UK too. I have not heard of aziclet or emergen C ???

stevie3 profile image
stevie3 in reply toJobear2016

Aziclet is a prescribed medication. Emergen C is a supplement you put in water - someone here recommended it to me for stiffness. I take a sachet every night in water, you can get it in Boots or on Amazon. Where's your neurologist based?

Jobear2016 profile image
Jobear2016 in reply tostevie3

At the local hospital (Scotland). Like you I had a bad experience with someone being really negative and it really brings you down!

Best wishes!

jrg54321 profile image
jrg54321 in reply tostevie3

I think you are referring to Azilect. I have been on it too for the past six months, and it helps me.

Bailey_Texas profile image
Bailey_Texas in reply toJobear2016

For some reason when i read you are only 55 i started to cry and feltextremly emotional. I was 52 when they told me. i wasted 8 years of my life taking meds and doing nothing else. Then i started Crossfit. I went if i felt good are not never missed a class, Some days i could barely walk. The people there would some times have to pull my hands off the weights. I could not move them. I never told my family but some times after class other members would have to almost carry me to my car. Never felt embarrased they were and are like family. If there is a crossfit gym in your area go it will change your life. The more i went the stronger i got.

As far as meds go try them all. Take as much as you can stand. I will not sugar coat it. You will most likely have mild to unbearable side effects. Learn what they are and don't be scared they will pass. I have went to the er several times when i did not know what was happening.

I take 6 50/200 er carbidopa levodopa, 6 25/100 carbidopa levodopa, and

2 6 mg requip every day. At first i had some side effects but they have almost went away.

THERE IS NO REASON TO DELAY MEDICATIONS.

THERE IS NOTHING TO GAIN BUT A LOT TO LOOSE.

START NOW YOU WILL NEVER HAVE MORE TIME THAN NOW.

With hope for your future

Bailey

Jobear2016 profile image
Jobear2016 in reply toBailey_Texas

Thank you Bailey, and sorry you were upset.

Best Wishes to you too

Jox

Bailey_Texas profile image
Bailey_Texas in reply toJobear2016

Just part of it emotions run wild. It was a true to me. i wsh you the best.

12stargate profile image
12stargate

Jobear2016

Be of good cheer.

There is life after diagnosis of PD.

In fact, I have learned to live a more sane and compassionate life after diagnosis.

Stay in touch with us and other folks on fb.

You will find the journey fascinating.

Much love to you from Eva G. :)

Jobear2016 profile image
Jobear2016 in reply to12stargate

Thanks Eva. Best Wishes to you too x

laglag profile image
laglag in reply toJobear2016

Welcome! I agree with Stevie3's comments as well as Eva's. I was diagnosed 13 yrs ago and have ways to still have a life after my diagnosis. This website has a lot of good ideas and a lot of good people.

Jobear2016 profile image
Jobear2016 in reply tolaglag

Thank you!

Fredzu profile image
Fredzu

Have a Plan! So many forum members have plans that work for them and you can borrow from them.

Know that you are different, special, and you will fit your plan just for you.

For me, a big part of the plan is exercise. Funny but, I always feel good when I exercise.

Fjohn1

Jobear2016 profile image
Jobear2016 in reply toFredzu

Hi thanks for your advice.

Something positive hmmmm " I know, you always have an excuse. " When my daughter spent 6 hours for a kidney stone I used the Hey Doc can we speed things up I have Parkinson's and I am about to start making a scene. Not that I can help it. Oh here is another I can't make it to your 2 year old's birthday. You see a bunch of children hyped up on sugar in a extremely confined place is going to make me freak. Here is my favorite , I am not sending Christmas Cards any more, it is to stressful and my hand writing gets small after the 3rd card.

enjoysalud profile image
enjoysalud in reply toSerenity_finaly-1

Hal-9000, thank you....for the humor which is soooo good for my soul. I loved the Xmas card excuse. I hurt for my son and you lighten my spirit.

Bailey_Texas profile image
Bailey_Texas

HELLO

i was told i had Parkinson's 11 years ago. With the meds and exercise I live a great life. I am better now than 11 years ago. I do most any thing i want to do as long as my wife lets me. I show no outward signs of Parkinson's.

The most important things you must do is exercise, have a positive look about life, reduce stress, and take Prescribed meds.

Exercise in my opinion is not setting in a chair moving your arms and legs. Hard high intensity, sweat your ass off laying on the floor gasping for your next breath exercise.

PD can be life changing for the good or bad it is up to you.

Give PD hell and stomp it in the ground it can be done.

Bazillion profile image
Bazillion in reply toBailey_Texas

Great to here from you Bailey

Jobear2016 profile image
Jobear2016 in reply toBailey_Texas

Thanks for that!

Tmarsella profile image
Tmarsella in reply toBailey_Texas

Baily: What meds did you start with and dosage? I'm newly diagnosed, age 76. Starting with Mucuna Beans /Tyrosine . Suggestions?

Opt8 profile image
Opt8 in reply toBailey_Texas

Bailey, Thank You! Your words made sense and inspired me to move forward!

SallyS profile image
SallyS

Exercise like crazy ...in warm water if possible...I'm still kickin after 6 years with PD. If you think youre losing your mind or don't want to continue living, go see a good shrink....right away!!!

Jobear2016 profile image
Jobear2016 in reply toSallyS

Thanks Sally

m-h1 profile image
m-h1

Hi job ear . Yeah I was diagnosed just two years ago . It's devastating at the time. Seemed the world ended. Feeling sorry for myself,staying in the house, thinking there was no future .

I'm in the North of England . Despite what people say the British NHS has been marvellous.

With neurological help , Parkinsons nurse etc.

I also went to the local PD meetings wher you inevitably see people worse than yourself getting on with it.

I was stiff in my right hand side. Had tremors and felt completely miserable.

Medically I was put on a programme of meds which after two years alleviate 90% of my symptoms.

I was telling everybody I met that I had Parkinsons.

Sometimes as an apology for my tremors or slowness. Maybe because I just w the everyone to know what a bad had I'd been dealt and looking for sympathy. The only person hurting was myself !!!

SO ONE DAY I WOKE UP AND SMELT THE COFFEE.

I STOPPED FEELING SORRY FOR MYSELF.

AFTER TWO YEARS THEYVE GOT THE MEDS RIGHT. YES...IT TAKES THAT LONG . IM REPEATING MYSELF. ITS JUST TH PD ..SO WHAT.

IGO OUT MORE , MY WIFE DRIVES ME , I ENJOY VISITING WEATHERSPOONS PUBS FOR A MEAL OR JUST DRINKS .

I am involved with my local Church as Church Warden.

I excerise daily taking my old dog out.

THERE ARE A LOT OF PEOPLE WORSE THAN US.

IM 65 AND IM GOING To ENJOY WHAT IVE GOT LEFT .

I DONT TELL ANY BODY NOW WHATS UP WITH ME

I JUST GET ON WITH IT AND FEEL A THOUSAND TIMES BETTER FOR IT .

LOOK AT WHAT YOUVE GOT NOT AT WHAT YOU DONT GOT.

RIGHT JUST PREPARING TO PLAY KEBOARD FOR THE LOCAL STROKE CLUB. ILL BE THE HEALTHIEST THERE.

GET OVER IT.

MARTIN H

Jobear2016 profile image
Jobear2016 in reply tom-h1

Thanks for sharing your story, it's inspiring. Best Wishes jo

Beckey profile image
Beckey

Yes, it's scary. The most positive thing I can offer is exercise. If there's a Rock Steady Boxing near you, sign up!

Skymom2008 profile image
Skymom2008 in reply toBeckey

Amen! I live in Kingwood, Texas.

laglag profile image
laglag in reply toSkymom2008

There was someone from TX training in Indy last night, but I can't remember what part. I know it's a big state!

paddyfields profile image
paddyfields

It takes something like this to focus the mind.. I am sure I have done more in the last seven and a half years since diagnosis than I would ever have got around to without PD. I was a terrible ditherer but now I get on with things. I must say I am not enamoured of the "Get over it" advice as it implies its no big deal and one is making a fuss. For most people it is a big shock whether old or young and you cant pretend its not. There are lots of books by inspiring people with PD, e.g. "If I can climb Kilimanjaro why can't I brush my teeth" by Nancyclist (webname to name but one). As the title implies, PD is so individual that once you realise this, you will start making plans to enjoy life as no one knows for certain what the future will bring anyway.

Jobear2016 profile image
Jobear2016 in reply topaddyfields

Hi thanks for your advice!

Pete-1 profile image
Pete-1

It may be that you have been given a dose that isn't big enough. When I was first given Sinemet (Madopar, functionally the same), I couldn't tell the difference. After I was given double the dose the effect was like magic. I've been taking Madopar for long enouigh to make that effect less significant.

Have you or your Dr. taken into account that this drug takes an hour before the effect may be felt. There is a version that is dispersable and is absorbed after about half an hour rather than a whole hour. Useful to help you get going in the morning.

Usually it takes a few years before this medication becomes inefectual.

BaileyCO profile image
BaileyCO in reply toPete-1

Hello

I too am newly diagnosed. I was diagnosed in December 2015. I too found it was partially a relief as I had been told I was suffering from acute stress syndrome and thought I was losing my mind. I could figure out why by body had suddenly failed me at 55 years of age. My left side was affected and I lost use of 3 fingers and I work from home on a computer 10 hours a day and learned to type with only hand. I also walked with a terrible gait dragging my left side of my body and my muscles in my left arm would involuntarily tighten up causing pain from flexing muscles over long periods of time. I bought books on PD that were so depressing my husband would hide them from me. But there is a lot of positive books and websites and this is a disease that affects us all differently and you must find what works for you. My first instinct was to go to physical therapy and the first therapist I saw said you must see our PT Ginger and she can help you. Ginger teaches LSVT or BIG and this is the best thing I have done so far. It changed how I viewed my disease and taught me we can fight this disease. My advise is to continue seeking what works for you personally.

Sheila in USA

Jobear2016 profile image
Jobear2016 in reply toBaileyCO

Thanks for your reply x

Jobear2016 profile image
Jobear2016 in reply toPete-1

Thanks, I will check about the dose with the Parkinson's nurse.

enjoysalud profile image
enjoysalud in reply toPete-1

Hi Pete-1, I'm curious if you have found anything to fix your double vision (medication wise)? My son is currently wearing 20 OD prisms (recent prescription) and today mentioned that his eyesight is VERY blurry. He has an appt with the optometry specialist (who prescribed these glasses) November 19th. Thanks!

Pete-1 profile image
Pete-1 in reply toenjoysalud

hello enjoysalud,

Well my vision is not far off normal now. To get this far i have tried eye patches, I have tried Botox injections and had operations to adjust the muscles that control the vertical and horizontal movement. sometimes known as "squint operations".

Eye paches are not satisfacory. They irritate the eye lashes. Botox is very unpleasant and gave about 6 good days when about 6 weeks may be possible.

Squint operations leave the eye feeling very scratchy. No pain though. The most awkward is not touching an eye with your fingers for, I think it was about 1 week for fear of infections. Sterile pads with sterile water was allowed to calm an itchy eye. I did get an infection needing anti-biotics.

I had 2 squnt ops. No infection from 2nd op. more careful

So 2 squint ops. and a pair spectacles with prism incorporated.

Vision now near normal. No result on medication causing this type of problem. I am ctting down on Pramipexole but this is planned to take up to 6 months.

Blurry eyes especially at the distance for reading.

I don't want to type any more just now hands getting jittery. Rather unpleasant.

TTFN

enjoysalud profile image
enjoysalud in reply toPete-1

Pete-1, thank you for replying, and sharing the steps that has brought you today . When you are able can you tell me what prism size was prescribed? My son has HORZ prisms, both his right and left is 10.0 BO (total 20). He recently had Acupuncture to help his vision. The needles are put near the eye, but not in them. The prisms helped him to read, do the computer, and watch TV, but last few days vision is blurry....could be results of Acupuncture.

CAN YOU READ WITH blurry eyes OR HAVE YOU given up reading?

Double vision, slurred speech, fatigue, along with anxiety were my son's first PD symptoms. It took almost 9 months to DX PD. He took a Datscan and we were told Parkinson's. His worst symptom has become a very stiff neck and shoulders that cause him GREAT PAIN with little flexibility. Last week told by Neuro that my son is ATYPICAL and that he has Parkinsonism.

My father had double vision, the stiff stiff neck, but was never DX with PD (that I know of). My dad's Kaiser MD had him on many many different supplements.

When you feel better and are able please tell me about your comfort in reading.

Carolinagirl123 profile image
Carolinagirl123

Hi Jobear, I was officially diagnosed two and a half years ago, but I had many of the symptoms of PD for much longer than that. My advice, which is easier said than done is to take one day at a time. Remember every day is different, some days you will feel great and some not so great. Always have something to look forward to, and exercise as much as you can. It is especially hard to exercise when you feel so stiff--I can relate to that! And remember you are not alone! Oh, and don't let yourself become a social recluse--I did that for awhile, and it only makes you feel worse. :))

Jobear2016 profile image
Jobear2016 in reply toCarolinagirl123

Great advice, thanks x

dreem profile image
dreem

Remember you are not any different than you were the day before you were DX. Don't look in the months and years to come Take one day at a time. Keep active. There will be times you may have to push yourself. Don't give up

Jobear2016 profile image
Jobear2016 in reply todreem

Good advice indeed!

TheresaCurley profile image
TheresaCurley

When I started Sinemet I found almost instant relief from my tremors but still had a lot of the other PD symptoms. It takes awhile for the body to get the full benefit of the meds. How long have you been on them? I'm pretty new to PD meds also. I started a little over two months ago. I have good days and not so good days. My major complaint is fatigue. The others are not so bad any longer.

Jobear2016 profile image
Jobear2016 in reply toTheresaCurley

Hi Theresa I have been taking Sinemet since August and am now on 6 x 12.5/ 50mg daily. The tremor has improved and not so many cramps but the stiffness is much the worst symptom.

cmHunter profile image
cmHunter

I'm 5 years in. Keeping busy keeps me going. Most folks even my own family doctor have a hard time realizing I have PD.

I do yoga, walk, and make sure I do something for someone else each day!

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