Newly diagnosed

I just stumbled upon this website. My name is Nicole and i was diagnose with parkinson's in January. I don't have a lot of symptoms as of yet and am wondering what to expect. I was feeling funny when i walked, almost as if i were on a boat. I am now on sinamet and don't feel that way really. But, i don't know what to expect. My dr. didn't do a good job in explaining what lies ahead for me. Thank you

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  • Hi Nicolem,

    You don't say where in the world you are but there are some excellent websites out there that will give you the information you require. However, there is quite a lot of misinformation too.

    Social media and forum sites can be very heavy on personal anecdotes and scare stories. Take your time and look around before you believe everything you read.

    Do as much exercise as you can. A good range of exercise is probably best.

    If you are in the UK, let me know and I'll help explain how things work over here.

  • Please could you let me know too? I'm moving back to UK after living overseas.I'm in early stages

  • In the U.K. You will be allotted a specialist consultant through your GP. Depending on the area in which you live, this could be a general neurologist or a neurologist with a Parkinson's interest. It would be worth asking your GP what she/he knows about the system and the neurologists before you are referred.

    You can request that you are sent to a specific consultant if you know the one you want.

    Most areas have a Parkinson's Disease Nurse Specialist, although this is not guaranteed. Nurses see you between consultant appointments. The aim is to see a member of the medical team every 6 months at least.

    Parking nson's UK has local staff and a telephone helpline to signpost you to benefits, local support and adult health and social care services.

    Their website is one of the good ones.

  • I am north of Detroit Michigan

  • You should move to Canada...It is very close to Detroit

  • Best of luck,England has a good health system,especially in treating PD.

  • Hello, I am just north of Detroit Michigan

  • Ok, somebody here must have information about support and reliable information for your location.

    Beware pinning all your hopes on anecdotal evidence wherever you read it or see a video about it.

    I use Parkinson's UK for my information.

  • Welcome to the forum! Search and browse the posts you'll find tons of good info, especially on the "newly diagnosed" questions. Not sure what your age is for young onset the prognosis is a bit different than later in life. Yeah docs rarely explain a lot, so it is up to us to figure it out. Parkinson's seems very personal experience. Basically Sinemet does not work for some people after 5-7 years and they need to take more, which adds dyskinesia or involuntary movement and eventually do DBS surgery. However on this forum there are people who take it longer and through healthy lifestyle and seem to be doing ok much longer.

    Before Sinemet is started many start first on Azilect, so you might try that see how it works for you. Some get very good results with early symptoms and it delays Sinemet intake. Then you start using both. For me Azilect did little and Sinemet helped me a lot in combination with Azilect.

    It is important to keep active lifestyle and if you have not been doing it, you need to start immediately.

    Good luck!

  • Hello Nicolem

    Being diagnosed with PD is not a death sentence you are just intering a new phase of your life. No two PWP (person with Parkinson's) are the same. Your path is your's and your's alone. PWP have the same life span as every one else. My advice is to fine a good Doctor that will listen and treat you as one of a kind.

    Most PWP progress slowly over a years and live a normal life what ever that is.

    Just keep moving don't slow down. There is a natural that says a body in motive tends to stay in motion and a body at rest tends to stay a rest. This true of PWP. Just exercise and take your meds and you can live a good life.

    I do not have tremor but i have most all other symptoms. I am 63 11 years with Pd and do most anything i like. I ride my bike and do crossfit several times a week. You need to exercise and stay in shape it will help you deal with PD and tends to slow down progrestion.

  • Maybe your doctor is helping you stay open. Each persons PD can be different. I take sinimet too working well. Avoid stress take exercise. Good people are on this site but as I say keep open mind all being well you have lots of time.

  • We do tend to be left in the dark about our future prospects. Contrary to what we are tole by our doctors, there is something we can all do to overcome many of the symptoms of Pd. Medication is not one of them. Medication only tends to mask some of the symptoms, but it does nothing to slow them down or even to stop them. We can do a lot to help ourselves. Let me tell you my story and take it from there:

    My first symptom started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with Pd in 1992 when my symptoms, most of which were being treated with medication, had slowly got worse and worse. Only when I started to shuffle was a neurologist able to diagnose the Pd.

    Because of severe back problems, I had been going to the gym every day, six days of the week, since 1968 and until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I therefore decided to stop going to the gym.

    Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared. By 2002 I was able to come off all my Pd medication, and have continued to be medication-free ever since. I am 82 years old now in 2016 and live a 'normal' life, full of purpose!

    Many Pd patients think that they will not be able to do Fast Walking! I have found that many other patients, who had walking difficulties, even those who were wheelchair bound, have been able to walk normally, once I have shown them how to use their conscious brain to control the movement. I go all over the world successfully showing hundreds of Pd patients how to walk properly, with only three exceptions. One could not stand on his own legs and the other two were unable to understand how to use their conscious brain. Above all else, walking costs nothing and everybody's health improves, when they do fast walking, and if you put everything into it, then that may include you!

    Many neurologists throughout the world, who have never examined me, have told their patients that I do not have Pd and should therefore not listen to anything I tell them. I have been examined by four different neurologists, the last of which was in 2015, and they all told me that I have Pd. The problem is that I look so well and because there is no cure for Pd, I obviously don’t have Pd. It is not my fault that this is happening to me, but I am determined to share my good fortune with every other Pd patient, at no cost to themselves

    Obviously there is a lot at stake here, especially for the pharmaceutical industry, who have spent billions looking for a cure, and neurologists, because I have not needed to consult a neurologist since 2002, other than the one I asked to examine me in 2015.

    View my website - reverseparkinsons.net and contact me from there.

  • Become informed, do as much as possible to be happy and living a fulfilling life just like anyone else.

  • Hi Nicolem ! You might try calling the National Parkinson's Foundation, now located in Silver Spring, Md. They have free manuals they give out to patients explaining the disease, what your family should know,symptoms,what to eat, various drugs, and on and on. That one call will help you out ! Good luck ! From a fellow patient, Pam

  • Stumbled, Parkinson's great pun.

    good one

  • B1 Thiamine therapy

    Doctor Costantini remembers that helping his very first patient, afflicted by an acute ulcerative, set him on the path towards countering Parkinson’s disease. He advised her to inject herself with two mg of Thiamine per week. “In the first 15 days of the therapy the patient was relieved of exhaustion, irritability, pain in her feet and calves”– says doctor Costantini- “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine.An important detail”,adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

    ultimaedizione.eu/costantin...

    Oral Allithiamine

    raypeatforum.com/community/...

    Since most people would not have easy access to thiamine injections, an alternative is oral allithiamine. It achieves the same concentrations (and cellular activity) through oral administration as IV or IM thiamine Hcl. So, oral allithiamine at a dose of just 100mg twice a week should be able to replicate the results of this study.

    ncbi.nlm.nih.gov/pubmed/978282

    "...Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized."

  • Hi Nicole

    I am a Australian female

    I have been diagnosed For 8 yrs

    With 5 yrs of symptoms before diagnosed

    I wish that I had been told 8 yrs ago about the utmost importance of exercise, it has to be something that u r passionate about

    I recently read "Brain Storms" which gave me some hints on handling unexpected PD symptoms

    Don't be afraid to ask your medicos any question that pops into your head

    This site is good because we all have PD

    Many hands looking, searching, passing on clinical trial results etc

    Good luck with your PD journey

    Kas

  • Hi Nicole

    I live in Canada.SoI am lucky to have three neurologists who I have consulted,Plus my GP(family doctor or General physician).Each doctor told me a different expectation of my PD.I will have my second visit to theParkinson Research

    Institute next Tuesday.I am on Sinamet too.the last doctor advised me to increAse the Sinamet to four times a day

    taking four pills each time.I am suffering from disruption to my sleep and my GP advised to take half of 5 mg pill of Zoplicone before going to sleep.However he advised me to check with the Specialist(I will see him next Tuesday)... I have. Restless left Arm....no shaking yet!

    Good luck

    Shakiralwarid

  • I M A 70 yrs old male who lives in Canada.I am Canadian of Arabic descent,.I suffered my first health shock when I was48 years old.Have been in remission since '94.

  • Welcome, Nicolem.

    It's good to have you here. I've not been involved with any support group since my official diagnosis about 1 1/2 years ago. I am now 68 years old and taught high school special ed. in Columbus, OH for forty-two years.

    I was devistated, depressed, and confused , and angry at the disease initially and my inability to do the things I used to do added to my tremors. My wife, as my caregiver, provides encouragement, help, and loving support through this time.

    Five months ago I fell in our front yard (not related to PD - I think), and the result was that I broke my neck (the first two vertebrae) which resulted in brain trauma causing me the need for SP (speech therapy), OT (occupational therapy) to help me with my cognitive, fine motor skills that would help me get through my day-to-day tasks, and PT (physical therapy) to help with strength, balance, and endurance. I still wear a neck brace from time to time to provide support for my neck.

    I've not been here at "Health Unlocked" very long myself, but I have found so many wonderful people who have been willing to offer support, encouragement, resources, answers and help in understanding PD, and a listening ear for me to gripe, complain, and moan about this disease.

    As you begin to adjust to your new diagnosis, you'll learn as I did here that it's ok to get mad, sad, and helpless.

    But, you need to ask questions and research what is happening to you.

    One of my favorite resources that I've found (there are many) is: a subset page of the American Parkinson Disease Association where you can download several kinds of Parkinsons booklets, and brochures for pwp and caregivers. This is the direct link to those pages:

    https//www.apdaparkinson.org/resources-support/download-publications/

    I am sorry for the length of my posting, but I hope you find the link I've provided helpful.

    --John

  • Thanks John for your words of encouragement.

    Take care

    Shakir Alwarid

  • Thank you John

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