I would be very interested to know how you got diagnosed with Parkinson Disease. Did your GP first diagnosis you or did it take a neurologist? What was the determining factor?
How did you get diagnosed?: I would be very... - Cure Parkinson's
How did you get diagnosed?
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TheresaCurley
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I thought I had carpel tunnel because my hand would hurt when I would write (from holding my pen so tight). I went to my GP & he noticed I wasn't swinging my arm & I had a little bit of a drag in my leg (both not real noticeable). He then sent me to a Neurologist, went thru tests to determine it wasn't anything else & then put me on meds & they worked. My husband (now ex), had been noticing something different about my stride when we would go for a run. We did 7 mini-marathons & I tried to improve my time but kept getting slower & slower.....
I was exactly the same! I developed a tremor in right arm but was having ongoing muscle spasms in back,so saw a neurologist.He noticed immediately that I was dragging my right leg and the same arm wasn't swinging.Also rigidity in that arm
laglag, it seems to me that so many diagnosed with PD are physically fit as you seem to have been - and still are.
Hi oiur. I'm not sure exactly how to respond to your comment and/or what you're trying to say, but I'll give it my best. Are you trying to say you have more of a chance to get PD if you are fit or you have to be fit to be able to fight PD or ??. I am not exactly what you call "physically fit". I have exercised on & off since my late 20's, mainly to keep weight off because my family has been on the heavy side, but I haven't been consistent with exercising until I joined Rock Steady Boxing (RSB) almost 10 yrs. ago. I am consistent with it because it has helped me fight PD & to keep it at bay. A lot of the PwP's that have joined RSB, and I'm talking in the 100's of people, have had very little experience with exercising. Some of those people have gone on to run marathons and climb mountains because of what RSB has done for them. It not only has strengthened their body, but given them more confidence in themselves.
laglag, sorry to be confusing in my post. My loose observation (which may be wrong of course) is that so many people on the board seem to have a history of being fit before being dxd with PD. For example, in your previous post I thought you were saying you and your then husband ran in 7 mini marathons and you were getting slower, that is how you realized something was wrong. 7 mini marathons seems very fit to me
I seem to hear numerous references like this and it strikes me that many with PD seem to have a history of exercise. To me, that is part of the irony of this disease state.
BTW, I can relate to the note you added too about not being consistent with exercise until dxd with PD. Though I've only been at it religiously for a couple of months, I have read some of the trials on exercise (and shared those links on the board) and now think of exercise as part of my PD medicine. Learning about the impact exercise can have on PD has also changed my concept of "exercise". I now work out much more vigorously, work out longer, and am much more focused on getting a blend of exercise to include skill cardio (requires more balance, tests coordination, etc), stretching, etc. I now workout every day ... I did miss a day and I saw a difference in my tremor. When I consider the impact exercise can have immediately - including on medication - and, if consistent, long term progression of the disease; I can see why so many with PD are pushing themselves to do things they might not have thought possible before. The board here seems like a great way to share important info on how we can regain control in fighting PD. Thanks so much for sharing info on RSB.
I just haven't noticed that a lot of people on this site are physically fit, but maybe you're correct. I wouldn't say I'm really physically fit even though I did 7 mini-marathons, I just trained properly. I would have never thought I could do such a thing until my ex talked me into & helped me train. That's pretty much what I'm trying to tell others about the boxing. They may think they couldn't do such a thing, but the trainers work with you so it is possible.
I really like everything you said in your second paragraph. You expressed my thoughts exactly. I'm not always the best with words. I like the idea of exercise being a "PD medicine". Did you say you live in the Tampa area?
Hi laglag, I am glad you liked the way the message reads. I do say daily exercise is my medicine, my primary medicine, and Azilect would be #2. I am just now starting to experiment with NAC based on the results from initial clinical trials. I still have a tremor but I am feeling much better and with more energy than I've had for a long time and I attribute that to the exercise. I love what you've said about the boxing class and I think 7 mini marathons requires some fitness! As someone pretty new to the site it was a casual observation that a lot of what I read seemed to come from those who were active and healthy prior to their diagnosis. My husband and I live in the Tampa Bay area with a dog and a cat.
I thought you lived mentioned living in the Tampa area. My husband and I are going to be vacationing in North Redington Beach in November. That's where we were engaged 4 years ago. I have 2 sister-in-laws & a nephew in FL. One lives in Orlando, one in Dade City (she did live in Tampa) and her son now lives in Clearwater. There are a few Rock Steady's around the Tampa area if you ever want to try one out, but it sounds like you have a good routine already. Keep fighting, we'll beat this somehow!
I have a theory that carpal tunnel is driven by Parkinson’s Disease, I have this problem too. Have you had carpal tunnel surgery to relieve the pain?
I took up Pilates as part of a weight loss programme around five years ago and my teacher noticed I was significantly weaker in my left side. For a couple of years I put my increasing slowness down to a trapped nerve in my back (although I suspected something else but didn't really want to know) until one day I stood up and my foot felt like it had been nailed to the floor. My GP sent me to a neurologist and two brain scans later, he diagnosed PD - the brain scans were not to detect PD but to rule other things out. My classic symptom was not swinging my arm. My GP sent me to another neurologist for a second opinion, which confirmed the first.
Was working on a job as inspector for a 2 mile jogging path and a coworker ask what was wrong with my arm. I said nothing and he said why do you have it on your chest. I did not know it was on my chest with my right hand on my shoulder. Ask my wife how long i had been doing this and she said about a year. I asked why she said nothing. She said she thought that i was doing it on purpose. Then off to the Doctor and then to a Neurologist who said that i had ALS (Amyotrophic Lateral Sclerosis) a death sentence. This was friday and talk about a bad weekend. By the way just said it walked out never came back and just sent me home. Went to another Neurologist on Monday and got the correct DX.
that was 11 years ago.
Bailey, every time I am reminded of that neurologist's dreadful behavior I get angry all over again. It's so beyond unconscionable the guy should have his license revoked.
Sorry i will try not to remind you again.
It does not bother me any more 11 years have past it is a faint memory only brought back by questions here.
From now on i will only send it in a private message.
Take a happy pill for me and have a good day LOL.
Bailey
Here is a picture of me taking a walk only half a mile the weights are only a total of 95 pounds.
facebook.com/photo.php?fbid...
How do you send a "private message"?
Left click the person's name. look on the right side of their page and click message
in reply to Beckey
I totally agree with Beckey. That Dr. was insensitive and unprofessional! It made me feel angry as well when I read Baikey_Texas' post.
Unfortunately insensitive and uncaring Dr.'s are becoming more and more common these days.
I don't care for my General Practitioner for the very reason, after i had a scare with chest pain and she finally ran tests and found out what was casing the problem she came into her office handed me a paper with the word Tachycardia written on it and told me to go home and look it up on the internet.
She offered no follow-up, if you have questions you can call me, how to resolve the problem, how serious it was, nothing but go home and do your own research.
She should have paid me for that office visit and for doing her job for her.
Very unprofessional. My experiences with the medical profession here lately are making me afraid to even seek medical advice/help.
My Father has a saying "When the Doctors tell you that they are practicing medicine that is what they mean they are practicing."
I am glad you found a better Dr and got a correct diagnosis.
Love, ~ Darkflower
TheresaCurley in reply to
I think the doctor's are insensitive because of the way the medical system runs these days. Not trying to defend them, but trying to understand. I think that what happens is they see a patient every 15 minutes and it becomes a mechanical job working on a disease not a person, not a caring anything other than getting the patient out of their office as fast as possible because they are an hour behind schedule. Never been to a doctor that isn't at least 1 hour behind schedule.
in reply to TheresaCurley
I agree with you. I know my Nuero over books because he will be behind schedule and patients will start talking and find out there are more than 1 patient with a 4pm appt but rather 2 or 3 ppl with that appt time. I feel like I should start moo'ing because I feel more like cattle they are herding thru their office rather than a patient. lol
No no please. This is the first I am hearing this. Remember the nap. A nap dos not show weakness.
GP first diagnosis , slight hand tremor
I am the caretaker. My son (at that time age 53) March, 2014, woke up with DOUBLE VISION, slurred speech, and very tired. He was put through many tests, MRI, etc. A Neurologist suspected PD and referred him to a Motor Specialist Neuro. He told my son that he had PD and "there is no cure and don't expect in your lifetime a cure or means to slow it down". He put my son on C/L-dopa. My son was VERY upset. He immediately went to see his GP. He never went back to the motor specialist, also sought out a different Neuro than the one who had referred him. This third Neuro suggested to my son that if he wanted certainty to take a DatScan. The DatScan confirmed the PD. He currently has multiple symptoms, a great deal of pain from his stiff neck and lower mid-right back (dystonia?). He likes his current Neuro and finds a great deal of support and guidance from him.
What is wrong with some of these doctors?! It doesn't take much imagination to put yourself in the position of someone hearing a serious diagnosis. Good grief. Terrific that he found a neuro he likes. Support and guidance are everything. As a mother, my heart goes out to you.
Thank you, Beckey. In past hindsight, maybe some doctors become hardened. Other feedback my son has received is that some Neuros feel that by giving the worst scenario the rest is uphill. I think it would have been easier to have heard if the Motor Specialist had added a few words....."Much research is going on and is accelerating, but so far we have no way to cure it or slow it down...much like other illnesses that people live with"...... that would have been kinder and given HOPE.
in reply to enjoysalud
AGREED!!!!
Ideal!
in reply to enjoysalud
Dear enjoy salud,
How awful!! It seems like Dr's have gotten lazy and un-caring with no compassion for others at all! it makes me very upset when I read these kind of posts.
I remember when I was little the Dr's seemed to be so much better, smarter and kinder than the new generation of physicians.
They treat you like a disease in a text book they once read and tend to forget that there is a person with feelings behind this illness. i'm glad that your Son sought after and found a Dr that he has confidence in and that he trusts because that helps alot.
I am still struggling to find the right General Practitioner and although I don't really care for my Nueuro because I feel like he doesn't listen to me, I am trying to find a way to get along and make it work. There are not alot of Nuero Dr's in my area without a long drive and i do feel like he does have my best interest at heart although sometimes he is hard to communicate with and seems to forget how the patient must feel.
Not having any children of my own, I can only imagine how upsetting that must of been for you to watch your Son be treated so poorly. I would have been very upset if he were my Son, as I am sure you were.
All the Best to you and your Son,
Darkflower
enjoysalud in reply to
Thank you!
TheresaCurley in reply to
Having children and grandchildren I know that when one of them hurts physically or emotionally it hurts you more than if you had the physically or mental event yourself. Sending you tight hugs enjoysalud, there is no greater pain than seeing your child suffer.
I GOOGLE AND EVEN FIND HOPE, UNDERSTANDING AND POSSIBILITIES, ON UTUBE.
Thank you folks. I need to find out whether or not I have Parkinson's. I have tremors in my hands (resting tremors) and my jaw chatters. I've gotten weaker and weaker these last couple of years. I find that I'm doing things in slow motion, and my mind gets very jumbled easily, and my muscles ache. I have terrible balance and sometimes I have a funny walk. These are just some symptoms but you get the idea. I have a Neurologist appointment in Nov. Couldn't get an earlier one.
I burst into tears when I heard the bad news, but in the days following I started to feel better than I had in a while. It felt good to be involved in a course of treatment. I found out there was much I could do to affect how I felt.
Becky I was the same.I cried and cried but then I thought well I finally have a diagnosis.After years of scans,MRIs etc
BE PREPARED, IT'S NOT HOPELESS. I FOUND OUT THERE ARE ALL KINDS OF PD, HEREDITARY, (RATHER RARE) VASCULAR PD, CAN BE AVOIDED, PROTECTION OF ESTROGEN, AND PERHAPS A DOZEN MORE.
IT'S AN ILLNESS OF THE AGED WHEN SYSTEMS ARE WEARING/TEARING, SO IF ONE SUPPORTS THOSE SYSTEMS WITH PROPER NUTRITION, ETC....IT'S NOT SO HOPELESS. THIS IS JUST MY TAKE OF THIS MALADY....I FULLY EXPECTED TO BE THAT FIESTY OLD WOMAN AT EIGHTY YEARS OLD.....I WAS HIT WITH THIS AT 69...THEREABOUTS.
I'm 68, how old are you now?
I turned 70 august 5th. I'm not bragging, but until this business with movement problems...and i'm not exaggerating....many will tell that I looked decades younger, on my good days. I actually wonder if it has any bearing with my movement ailment.
it's like I lost the template, genetic that is. my shape shifted from swelth to dumpling.....I won't bore you.
People have said I look young for my age also. Also not bragging but maybe you have something to it? My profile picture was taken last year at 67.
yep.you've got that unlined face.
as long as I don't screw up/squint my face I have no major wrinkles/folds.
my mother had a relatively smooth skin on her death bed, she was of Germanic/mix stock, you look Nordic as well.....could be British, and I bet you never smoked. (leaches one for b vitamins, that and birth control pills..)
Congrads on turning 70. My daughters birthday is August 5th.
Happy belated Birthday.
thank-you Hal, not very happy last couple years, but things are going better. oh, and a happy one for your daughter as well.
Went on statins, lost memory, thought it was Alzheimer's, went to neurologist who said it wasn't that but PD. Had stopped statins in meantime and memory returned but went anyway.
where are you now?
Dying from heart damage. Had a mild failure with edema last Fall, given Myrbetriq for urinary in continence (mistake), got a UTI resulting in sepsis and renal failure. Not a direct result from PD but severe anxiety gradually hardened the walls of heart and anxiety is a big part of PD, as are UTIs.
are you a senior citizen at least? very interesting, anxiety a big part of PD, I should be dead then. not being able to find a doctor has been very stressful. social medicine has drawbacks....that's another story.
is the renal failure permanent? what are you doing to help your heart?
Stiff hips on running, loss of sense of smell, small writing, minor tremor in left hand and left arm not swinging while walking. Went to GP who referred me to Neuro. Diagnosed by Neuro first visit.
All those things separately i could explain, collectively i knew it would be bad news.
Bailey , i have my arm in a similar position, bent at elbow across chest.
I hope you get a dx. All the best.
Hi Theresa. My Pd symptoms started in 1963, when I found that I could not throw a ball properly. during the yeras 1963 to 1992, I regularly presented with more and more Pd symptoms, which were treated individually, with no success. In 1992, when I went to see my GP for a chest problem which was also Pd related, he noticed that I was walking badly. He first sent me to a physician, becasue of all the problems I was having, in the meantime, he thought that I possibly had Pd, but he was not qualified to make that call. The Physician took one look at me and also jumped to that conclusion as well, but he said nothing. He examined me thoroughly and suggested that I see a neurologist, which I did. The neuoroloist also took one look at me and before he examined me he said, "You have got Pd". My GP mus have told both of them what he suspected.
In my book I have listed over 40 Pd related problems, some of which were the same symptom as others but different presentations.
Whay do you ask?
John
The reason I ask is because I have developed tremors starting late last winter but it is just another symptom of a long list of symptoms that my GP has pretty much written off as hypochondria (though he never said it). I've had weakness for years getting worse each year -- more so on my right side to the point that my muscles in my right leg have noticeably atrophied. Muscle pains, poor balance, move in slow motion and more, but you got the idea. Last year he sent me to a neurologist to be tested for MS. The Neur did some imagining, I think it was a Cat Scan or MRI not sure which. When they determined I did not have MS he recommended B12 shots and left it at that. I was too embarrassed to pursue it and have just been living with it. I felt I was being treated like a hypochondriac or a silly old lady. I'm 68. Now that I started having tremors the GP said it was too sudden of an onset of tremors to be PD and was most probably ET and I should wait and see if they stop. Well I found out by accident that if I take an antihistamine the tremors get better so I've been taking NyQil at night and Benadryl in the day time. If I stop taking the antihistamines the tremors are very annoying. They seem to be resting tremors not action or intention tremors. I am still able to Paint (on Canvas, I'm an artist) but when I'm relaxing watching TV my hands and my jaw shake. I finally got my GP to agree to a Neurologist appointment, but it is not until Nov. The tremors and over all condition has been getting worse since I've had some family chaos (which has since been resolved).
Benedryl often works in relieving PD symptoms as it changes the choleragenic system.
Yes you are so right. I found that out by accident when I had a cough.
My wife kept asking me why I didn't have arm swing in left arm, she said I had a funny gait running with my head forward, I just told her it was old age. Took a couple of years like that until other people started asking me if I had a sore back, I was stiff looking. First Dr I went to told me if I didn't have PD he was Dutch. Funnily enough my wife was happy at that, she said she finally had something to go on, something to combat. Me, not so much.
I went to see my GP with symptoms of anxiety (so severe that I was having panic attacks that my husband thought were fits) and tremor in right hand. GP also noticed right hand side postural issues. I have a history of cancer so he not unreasonably assumed I had a brain tumour and referred me to a neurologist. She tested my walking, balance, rigidity etc , though at the time I had no idea what symptoms she was looking for or what diagnosis she would make. She sent me for both an MRI and a DatScan. The MRI was clear and ruled out cancer. The DatScan showed depletion of dopamine in the left side of my brain. She pointed out that I had no right arm swing and a slghtly dragging right foot (I had noticed that my right shoe sole was wearing more than my left, but not known about my arm). She concluded that I had Parkinson's and recommended either Sinemet or Ropinerole with no suggestion as to her preference. Through Parkinson's UK I discovered the local Parkinson's nurse. She was wonderfully understanding, very experienced and confidentially suggested I take Sinemet. I responded immediately. Problems I hadn't associated with Parkinson's (or mentioned to my GP) such as back rigidity and shoulder pain disappeared after only a few days. The anxiety greatly reduced, which in turn stabilised the tremor. Having now read up on PD I realise that I had symptoms many years before I sought the correct help. I had been greatly fatigued for a few years which I had simply put down to old age (though I couldn't understand why my contemporaries had so much more energy). I have been having physiotherapy and even surgery for back and shoulder problems that all appear to have been caused by PD for over 10 years. My handwriting had also become so small that I resorted to using a sharp pencil to write since I couldn't find a biro nib fine enough to be able to read my tiny print. By looking back at my appointment diary I could date this to almost two years ago. I also realised that I should have noticed that I had an arm issue. For example, when whisking an egg, the whisk would be in my right hand but I would be moving the bowl around with my left instead of moving the whisk. Similarly, when washing my hair, I would move my head instead of my hand/arm. I had also noticed that my right ankle/foot had increased in girth, but initially thought my new shoes were just not made evenly! I ached and found it difficult to get out of bed, but put it down to an uncomfortable new bed. All PD related muscle issues. I had had a slight hand tremor for at least 15 years and just ignored it.
There were a few factors that lead us to believe something was very wrong. One being most people thought I had a bad back. Second was severe anxiety would come and go. Third was my girlfriend noticed my gait was odd when running or walking. So my GP who wasn't quite sure sent me to a neurologist who diagnosed me with PD.
I started having issues in 09 at 19 but thought nothing of it (I had just had my 1st child) in 2013 things got worse I went to several doctors (the wrong ones lol) I was given a DX of everything from stress to "your just crazy" finally in January of 2015 I went to see a Neurologist that took me seriously and listened to me in the end agreed that i really do have PD at 26 I was DX but I have a family history of PD my great grandmother my grandma my dad and now me
Martin, our son, was born with learning difficulties (a genetic disorder) and was always slightly clumsy. He got around by himself quite easily but, 5 years ago, when he was 43 we noticed a tendency to drag his right foot. He was referred by our GP to a neurologist who treated Martin with various drugs but didn't offer a definite diagnosis. The neurologist eventually passed Martin on to one of his colleagues who was more active in this field and who immediately changed his treatment which resulted in Martin being in A&E until 3 in the morning. Afterwards the consultant was reluctant to offer any other change of treatment. Our GP, in desperation, wrote to the National Hospital for Neuroscience and Neurosurgery in London and got an appointment with Dr Foltynie. On arrival for the consultation Dr Foltynie said straightaway that Martin has Early Onset Parkinsons, and that most such cases in the country ended up at his door. Martin is on Sinemet and hovers between freezing and dyskinesia. He has no tremor but a recent side effect is that his speech gets difficult to understand as the day goes on.
Bailey_Texas in reply to
What dose does Martin take.
Like his name it is my middle name.
in reply to Bailey_Texas
Martin is on 187.5 mg Sinemet, 6 times a day and Sinemet CR 250mg at bed time. The dual toll of learning disability and PD has aged him over the last 5 years. He is 48 but looks much older, and weighs only 50kg (110 lbs). We have no expectation of improvement in his condition but hope that it remains stable.
TheresaCurley in reply to
I am so very sorry. The pain of seeing your child suffer is the worse possible pain a parent can have.
Over the last several years my balance kept getting worse. At first my doctor thought it was a result of a sciatic attack I had and prescribed tai chi. Looking back I had other symptoms I never thought were related like not swinging my left arm when I walked and my handwriting getting smaller. As my balance got worse my doctor after prescribing pt which did help, had me see a neurologist. Interestingly enough when I had a bad strain on my left IT band and the doctor prescribed a muscle relaxer and pain killer all my symptoms disappeared. I forgot to mention that my left hand would shake when I got nervous. And I have double vision which happened before the diagnosis too but since my dad has it I didn't give it much thought.
Dear TheresaCurley,
My diagnosis went just like many of the others who have already posted to you.
Mine started as far back, i think, as when i was 18 years old. I believe that I had very subtle symptoms and signs of PD if I would have known the info that I know now. i had a slight tremor in my right hand that would come and go every so often. Then when i was about 23 the tremor increasingly got worse. Until the tremor in my right hand was constant, shakey, my arm felt stiff and ached and I was having trouble brushing my teeth or writing.
The first Nuero I saw diagnosed me as having familial benign tremor, as my Dad has had a tremor in his right hand for many years that only affects his handwriting. My Mother passed away right after i graduated from Highschool after battling A.L.S. for 2 years, so when I started having more difficulty i was afraid that I may also have A.L.S.
I sought a second opinion when I started having more difficulty using my right arm and I noticed that when I walked it didn't swing or move anymore like it used to and then one day while I was grocery shopping my body just suddenly stiffened up and I was frozen and unable to walk. Ironically I was in the frozen foods section but I wasn't laughing and was rather frightened at the odd behavior my body was displaying. I didn't know what was happening and I didn't have a grocery cart because i was just running in to grab a few items. So I was hanging onto one of the freezer doors almost in tears when a lady in Nursing scrubs pushing a shopping cart asked if I was ok. I told her no that I couldn't move and could she help me get back outside to where my car was parked. She had me hang on to the side of her shopping cart while I shuffled my feet along the slick tile floor. She helped me out to my car and asked if I was sure I was going to be able to drive myself home. I assured her that I would be ok and that i would sit there until I felt well enough to drive safely back home. She told me that I should make sure and see a Doctor to make sure that I was okay.
I can remember sitting in my car embarrassed, scared and crying. I was able to drive myself home that day and after seeing a second Nuero and many tests to rule out any other illnesses and a MRI scan I was then sent to UCSF to see Dr. Aminoff who specializes in PD. During this time, Michael J. Fox had recently announced that he had PD and after listening to him talk about his symptoms and researching Parkinson's Disease on the internet, I was pretty confident that I too had Parkinson's Disease. Right after my 28th Birthday the Nuero told me "you have Parkinson's Disease".
I wish you all the Best and hope you get some answers soon.
Love, Darkflower
Be sure to keep your appt. The diagnosis doesn't have to be the end of your life, if you don't let it be. I've always felt that Acceptance and Action are important, as well as keeping a positive attitude. Accept the diagnosis, do something about it, and keep your chin up. The sooner you start, the better. Exercise has been shown to slow the progression. It is one of the best things you can do for Parkinson's. There ae a lot of good ideas on this website. If you have any questions, let us know. Good luck & keep fighting!
Hi Laglag. That is what I like to see here on this website. Keep telling everybody that Pd is not the end of the world. I have had Pd symptoms since 1963 and I now live a normal life, better than many aroundme in the retirement vilage. But they don't exercise the ay I do.
John
Thanks John. It's so frustrating to get people to exercise, especially when you know it works. You've seen results with walking, I've seen results with boxing, and Baily has seen results with CrossFit. If I wasn't already doing boxing, and know that it works, I would be trying your walking or Bailey's CrossFit. I would try most anything to get relief. I just don't understand why others don't. I have been on very little medication over 13 years and it's due to exercising. I know exercising isn't for everyone, but everyone doesn't have PD either. And I have seen results in the gym and I have attached videos on boxing and on the research that it helps and very few on this site have tried it. Some might say it's because they are too advanced, but I have seen with my own two eyes handfuls and handfuls of people that are in the mid to late stages of PD come in the gym and start using less and less of their canes and walkers and wheel chairs. I've seen people hunched over and taking baby steps, start walking faster and more upright after a few months. And I'm sure it's the same way with your walking. Why wouldn't someone want to try it? The only reason I can see is they don't have a way to get there, which I don't have a solution for right now (except maybe Uber?). I've never used Uber (similar to a taxi service) so I can't recommend it. Sorry I'm unleashing here but I just get frustrated because I just want to help others and they won't listen.
Hi Laglag. Your are preaching to the converted. It took me 8 years of fast walking to be able to come off all Pd medication, and to have no visible signs of Pd, even though it is still there. I would like to hear if the boxing and the Ctossfit training will do the same?
My feeling is that unless neuroogists tell ther patients that they MUST DO Certain specific exercise and become positive about their Pd and start to manage their stress levels, it will never happen.
I can understand the drug companies not wanting to encourage patients to do exercise but I can't understand the doctors not doing so.
Keep up the prssure.
John
I guess I'm just as guilty as others. I haven't tried your fast walking even though you tell us you are off all PD meds and have no visible signs of PD. I will have to think about incorporating that into my routine. Will you be in or near Indianapolis in your tour of the U.S.? Indianapolis is not the ideal place to walk outside 50% - 75% of the year. Where do you suggest walking in the bad weather? I don't want to give up boxing. It really helps the symptoms and it's fun being with other PwP's and sharing experiences and helping each other in the process. I can't say I don't have ANY symptoms, because I do, especially if my meds aren't kicked in, but for 13 yrs. of being diagnosed, I take very few meds and there are very few people that can tell I have PD.
Hi LagLag. I will not be anywhere near Indianapolis unfortunately. I am planning a trip for next year but it will be mainly for the Southern states The USA is so big it is difficult to do it all on even 10 trips, let alone 2.
Walking fast is not convenient, I know. I live in South Africa, where I can walk every single day. The worst that can happen is that I get wet. The lowest temperature here in Cape Town is around 7 degrees celsius. In other countries with snow and ice they normally have indoor running tracks. That is not as good as walking outdoors on uneven surfaces. But beggars cannot be choosers!
The beneft of walking indoors is that there will be others using the track, whereas I usually walk alone, and get no social benefits.
With health isues as tricky as Pd, we have to make sacrifices in order to get on top of them. I do my walking early in the morning, while most people are still in their beds. I only do it 3 times a week for a maximum of an hour. 3 hours a week is hardly a sacrifice when you think of all the benefits I have derived from it. If anybdy is thinking of doing fast walking then they should start with a maximmum of 10 minutes, 3 times a week, at the fastest pace, which might not be very fast. Every 2nd week, they should increase the time by 5 minutes. After six months they will be walking for an hour and they will be walking a lot faster and they will be getting a lot healthier. Is that such a difficult thing to do?
Good luck!
John
John,
We actually don't have a lot of indoor running tracks. Most walkers use the shopping mall to do walking in the bad weather, but they are few & far between anymore. The weather is nice here now, although it has been a scorcher the last few weeks, so I will see about incorporating fast walking into my routine & let you know about my progress. I have been thinking of getting a Fitbit so this might be a good time to purchase one so I can keep track of my time and distance.
Thanks!
Debbie
Hi Debbie. Whatever it takes, whatever the weather, just get out there and walk your heart out!
Enjoy!!!
John
John, there are clinical studies (with humans) showing significant improvement of PD. There are animal studies that show reversal of symptoms and there are many more human trials underway (specific links in previous posts), and no doubt many that will be triggered because anything that can slow progression is important info to all PD patients. I think we are just beginning to understand the full impact of exercise. I agree with you that doctors should be having heart to heart discussions with every PWP about the impact of exercise. Thank you for sharing your journey.
Hi oiur. It may appear to Pd patients that doctors know little or nothing about these studies, but that is to be expected, as they don't move in those circles. Maybe patients should raise the subject with their neurlogist. If he/she says that exercise does nothing to help Pd, as the leading SA neurologist once did to me, then they should be looking for a better neurlogist. We should become proactive and not passive patients. It is our lives that are at stake here, not theirs.
John
John, that is beautifully stated. I am going to share these articles with my doctors on upcoming visits. Why can't the education process work both ways? Great point!
John, I am reading a book (sort of) by Augusten Burroughs on dealing and overcoming things that hit you in life (not the exact title), and here is what he says in his chapter titled "How to be Sick"...... I read a paragraph that I want to share with you and the rest of the board.
"The feeling of frustration one experiences when speaking to a medical professional is the result of 'trying to get a handle on this disease'... This is merely a coy rephrasing of one's natural desire for structure. It is only human to seek facts that can then be used to construct a sense of definition, if not certainty. But disease requires we live our lives fully and well, inside of the moment currently at hand and beneath the umbrella of uncertainty."
Hi Oiur. Do doctors derive any benefit by leaving us in the dark? I don't think so! Do they purposely leave us in the dark I dont' think so! Do they think we are all stupid? That is a generalisation, but they might just be tempted to think that we will not understand some things which would best be left unsaid! That is very likely! Never forget, doctors are busy people and time is money and they cannot afford to waste time! It is funny how money comes into many discussions on health!
John
When you say to walk fast, do you mean to walk as fast as you CAN or is there a specific speed you should be walking at? I am 78 and recently been diagnosed and would like to keep as fit as possible for as long as I can, so I intend to walk as often as I can, I think it is the only exercise I am capable of doing or at least enjoying.
That about sums up how I think also. I want to do what I can and enjoy it. If I don't enjoy it I will not keep at it, it's that simple. My Personal opinion is that if I 'Push' myself to do more than I enjoy doing it aggravates my symptoms so how can that be a good thing? I'm walking every day now but not wearing myself out.
Hi Geenet. When I say walk fast, I mean as fast as YOU CAN. I suggest that if you are breathing so heavy tha you cannot speak at all, then you are walking too fast. If you can speak normally then you are not walking fast enough and if you can say a couple of words between breaths, then you are walking at the right speed.
You need to rest for one day, after having done strenuous exercise. If you don't, your muscles tend to eat themselves up, in order to get the necessary energy to do what you are making them do. They then get smaller and your fat content gets larger.
To start with, walk for only 10 minutes, as fast as you can (see above). Then, every second week, add on 5 more minutes and walk for another two weeks before adding on another 5 minutes. When you are walking for one hour you are doing the maximum required to get the optimal benefit from the walking. Don't do more than one hour. Keep on trying to walk faster!
The beneft to your health, and anybody else who does not have Pd is inestimable. You will become very fit.
My late wife at the age of 57, after just over 2.5 years of doing the fast walking, had lost 14 kilograms in weight without dieting. She had come off all her blood pressure and anti-depressant tablets as well. She was not an exercise fanatic, in fact she never played any sport. She did not go to gym classes at school because of her antipathy to exercise.
Why don't you give it a go and stick to the rules?
Thank you for your explanation, I do like walking and now I have a very good reason to do it!
Neurologist thought so but sent me to see a neurologist movement disorder specialist to confirm. Dragging left leg, tremors in right hand, as well as slow movements.
I tell you honestly I'm not afraid of whatever the diagnosis is, I just want to get a diagnosis. Until I get some definite confirmation l will be convinced that everyone thinks I'm hypochondriac.
You may want to see a neurologist movement disorder specialist vs a general dx to get clarity.
Went to my G.P. and said I do believe I have Parkinson's. He said no but ran some diagnostics. I went back after he reviewed the data and said no but I will send you to a Neurologist. Went to the Neurologist and he said no but lets run some test. After the test he said no but lets send you here. I was so frustrated that I just stopped trying to find out what was wrong until a couple of years latter when an anxiety rich atmosphere made it so simple to diagnose that I could be diagnosed by most people walking down my street.
started to limp about three years ago, thought it would go away. finally went to emergency and they monitored my heart overnite and ordered an MRI. PD does not show up on MRI or scans but they presumed I had symptoms of PD. (I filled out questionnaire) because of my miniscule print, another indicator of PD. I wasn't told this I googled it. I could not move my hand from right to left....can't sign my name at this date. it's my right hand that is most affected.
I was told my heart was fine and if there was anything wrong with my MRI, they would get back to me. to be fair attending doc told me I needed a doctor to get the results, unfortunately, there is a shortage of doctors in the region....always has been.
I was suspended in limbo a long while. finally went to local hospital (really bad reputation, staffed with locals and I am a known foreigner, I guess is their problem with me.) because my right arm was cold, swollen...and I was afraid it was going to atrophy. that doctor referred to a neurologist.
when I went to his hospital to make an appointment, I was told I would have to wait perhaps eight months I think it was. a guy in emergency suggested a clinic in town that was talking new patients, and that doctor said she thought I had an autoimmune malady and when I asked which one, she said ALS. I didn't really buy that one, but she did get a neurologist to see me, who after having me scanned, told me that PD does not show up on MRI or a scan, and that the only way they can diagnose my PD was to see levodopa's effect on me. then he went on his holidays.
I filled the prescription, was going to try it because he told me, if I had PD I should have miraculous response.
when I read that some of the side-effects psychosis, schizophrenia, I said whoo!
I need more basis for taking a drug that has side-effects that are worst than my "PD". nobody explained my cold arm with bulging veins, (warmed up after about a week but still varicose-like veins just on that one hand.)
I don't have tremors, I would like to eliminate possibility of circulation problem and even an infection is a possibility. (when I went to local hospital, intake nurse glanced at the swelling at the base of my neck and said "looks like a muscle"!!!!) they have all shown me disregard for my concern that that "muscle" is a carotid (swelling was on both sides at one point) or distended lymph glands.
they haven't checked my estrogen status, nor suggested hormone replacement....i'm stupid!
that my friends is MEDICARE in Canada. lotsa luck with your Obamacare.....I just cannot see your Black Americans faring better than me, in Nouveau France.
Oh my, I am so sorry you are going through all of this grief to get a diagnosis. I think I should stop complaining about our health system here in Arkansas.
I developed a slight tremor in my right hand / arm. About 10yrs ago saw my GP who noticed other symptoms - handwriting, gait, right arm not swinging, etc. Subsequently i saw a consultant neurologist at my local hospital. He prescribed Sinimet 25/100, though I have to say it doesn't do much for me.
May I ask what Sinemet does do (as far as side effects) to you, as well as what has not improved with you since starting it? Has anything improved with it?
Also, what dosage have you tried? Are there any other things that you have tried? Is the dr. guiding you with rhe neds or are u doing this with help from other people, etc. Thanks!!!
I now come under the Parkinson's Nurse, based at our local hospital. (I live in the UK) It took a few years to get on her 'list', due to some incompetence in the neurological dept The consultant first put me on Sinemet Plus 25/100, one every 4hrs between 8am and 8pm, ie 4 tablets, according to the consultant it was the 'gold standard' treatment . I took this for several years but was of the opinion they didn't help much, if at all! I feel that exercise is probably of more benefit; I walk approximately 2 miles, 3 or 4 times a week, the walk usually includes a good hill, I cycle occasionally just a few miles and I am a bellringer at our local church (that is full circle ringing of bells weighing several cwt). I have been ringing most of my life and whilst my bell handling has deteriorated somewhat, it is still good enough to be welcomed by most towers. I also garden and a little DIY (I used to do a lot but now find it difficult to handle many tools).
About a year ago, the PD Nurse suggested that I increase the Sinemet dose to 2 tablets at 8am and 4pm (so now 6/day) to perhaps improve my limb control, gait, arm swiing - I don't think it has made much difference. Incidentally, I was told by my GP when first diagnosed, that there is no medicine that will treat tremors, I notice that the Sinemet leaflet actually warns that it may cause tremor!
Hope this helps
regards
Jim
Theresa, I felt that I was good health but after the loss of my 39 year old brother I noticed a tremor. Due to the anxiety surrounding the loss of my brother (while hiking / camping deep in the pacific northwest) I attributed the tremor to the emotional stress but eventually started to research the symptom and became worried. I have noticed that others mention PD onset coincided with a traumatic event. I also felt very tired. I was first dxd after seeing a movement disorder specialist / neurologist at Emory in Atlanta. He spent a good bit of time, close to an hour, testing me and offered his diagnosis with confidence, prescribed carbidopa / levadopa, or c/l, and shared that the medication would likely give me a good result for 5 - 7 years, following that he didn't offer a sunny outlook. I researched carbidopa / levadopa and became worried about this RX due to the dyskinesia associated with the drug that tends to occur in that 5 - 7 year timeframe (as I understand it). Frankly, I was distraught so I saw a few other movement disorder specialists / neurologists and they all agreed it is PD but were each very different in the approach to meds. I mention this because it seems important to get a variety of perspectives especially when it comes to figuring out the right treatment, which is very specific to the individual. You may want to consider clinical trials for getting on new drugs, etc.
I wish you the best. It has been a sobering journey for me but I'm trying to keep a sense of humor.
My PD symptoms came out when I was going thru a divorce. Like you say I think stressful situations will bring it out. Stressful situations also make my symptoms worse. I went to see a financial advisor and he was able to help me put a plan together so I could retire earlier than I thought which eliminated some of the daily stress. I also agree a movement disorder specialist is important because they are just more versed on the symptoms and the meds and such. Some talk of it taking many years to get diagnosed. I was lucky to have a GP that recognized the symptoms and referred me to a neurologist right away so I was diagnosed within a few months.
Build up all your systems ....it's probably not a coincidence that this happened after a traumatic event. It certainly did with my husband. Ibelieve that the trauma is a jolt which injured an already vulnerable system and it becomes harder and harder to maintain homeostasis in PD and that exposes one to deterioration of multiple systems. Anxiety has been a major factor in our PD journey. Read my other posts.
It took 10years to be diagnosed by a neurologist and start meds. Tremors on right side and body tremors.That all started 21 yrs ago.
This sure is beginning to sound like an uphill battle to get a diagnosis. A few of the symptoms that have been said on this thread I don't have. I still have my arm swing, and my writing is not micro, and I still have a sense of smell. I'm wondering if what I have could possibly be PD without these standard symptoms.
Theresa, It is tricky since there is no single test. You will definitely want to see a movement disorders specialist, a neurologist with expertise in Parkinson’s disease,to save yourself time and money, but there are 4 primary symptoms:
tremor (typically resting, one side dominant)
rigidity (resistance to movement, for example of your arm)
slowness or bradykinesia
impaired balance
You would display only 2 of these 4 for a diagnosis but a solidly trained neurologist in movement disorder would need to make the call based on an overall exam. The other symptoms you mention (arm swing, etc) are definitely associated with PD but are not classically used to diagnose PD-as I understand it. Michael J Fox has an amazing website and Mayo Clinic has a very good one for getting more information on Parkinsons.
Good luck and let us know how it goes!
My GP just started me on Carb/levo 25/100 3 times a day. This visit he had the time to go over what has been happening in detail and is finally convinced it is not ET. It was a very good visit. Since my appointment with the Neuro is in Nov the GP decided to do an MRI to rule out some things like a brain tumor. Really anxious to find out if this Carb/Levo helps.
You will know quickly.
I have only taken two doses so far and already I'm feeling better. I was having a really bad shaking day and now it's hardly anything. YAY
You might want to consider using Zandopa, an herbal from macuna pruriens as it has none of the side effects as drugs do. It has been reported on NCBI federal list of studied products as efficacious in early PD. The trouble with drugs is something docs don't mention....the effect wears out after a few years but you still have the disease and must then take stronger and. stronger drugs. We used it for yeasts in the early stage in order to extend the time before we had to use drugs. Zandopa Canberra ordered online. Make sure ALL your other systems are in good shape and use lots of supplements (see: Mark Hyman MD).
I will follow my doctors recommendations, but thank you for the suggestion, I will talk to him about it. I need to call him on Friday and tell him how it's going.
Read my posts. Doctors probably don't know about macuna but if you look it up you will see a lot of PDErs use it. Suggest you find the national institute of health study and show it to him, if it works, then good.
i was diagnosed by physiotherapist who suggested i see a consultant who confirmed the condition my GP missed it completely for possibly over two years
don't get it.
Three neurologists. First one said PD based on reaction (favorable to Cardopa Levodopa), the second and third at Mayo Clinic (I sought a "second opinion) following an 1 hour series of tests (mental and physical) plus a DAT Scan that showed depletion of dopamine in my brain. I should have believed Neuro #1, it was just hard to take.
DAT scan's are like an xray. Painless. You just have to keep your head very still for like 20 minutes. They inject something that is radioactive in an IV in your arm 15 minutes before the Scan. I also believe that you have to NOT take Carbidopa-Levodopa for some time prior to the scan.
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