Newly diagnosed

Hello. It's 2 weeks since I was diagnosed and I'm scared. I'm waiting for a PET/CT scan and in the meantime trying to gain as much information as I can. Contact with others would really help as I just don't know what the future holds and where to start with decisions such as housing and finances. My flat has steep stairs so is unsuitable to stay in and I'm agoraphobic so getting out for exercise is going to be tough. Please talk to me and let me know how you got through the first months after your diagnosis. Thanks

27 Replies

  • "Agoraphobia is an anxiety disorder characterized by anxiety in situations where the sufferer perceives the environment to be dangerous, uncomfortable or ..."

    Your membership of this group will connect you with many friends and support.

    I was diagnosed, 2012, and from the beginning I have chosen not to take medicine.

    Search my Posts and Replies. You may decide to take medicine to treat the most severe symptoms. My study results has me recommending holding off medication as long as possible.

    Let us start by learning what form of Parkinson's. Do you have tremor dominant or Postural Instability Gait Disorder (PIGD)?

    Search my Posts and Replies.

  • I have tremors in my hands and a slow stumbling walk

  • My concern is the possibility of another disease or severe problem and not Parkinson's. You say dx two weeks earlier and with symptoms "I have tremors in my hands and a slow stumbling walk".

    Both hands! That is very unusual per my understanding is Parkinson's appears first on only one side of the body. Stumbling gait appears at a later stage.

    Maybe a second opinion, another exam is in order. As soon as possible. The CT/PET scan may have been recommended as the doctor already suspects your condition may not be due to Parkinson's.

    Let us know.

  • Thank you

  • PET/CT scan or MRI

    ditto i.e. "If you have already received a diagnosis from an expert, and are responding well to dopaminergic therapy, in most cases of Parkinson’s disease, PET and DaT scans would not add any new information, and may prove unnecessary." (the page that had this comment no longer is posted)

    "The bedside examination by a neurologist remains the first and most important diagnostic tool for patients suspected of having PD. When questions arise, some newer imaging modalities such as PET and DAT scans may aid diagnosis, when performed by an expert in neuroimaging.DATscan is FDA-approved for differentiating PD from essential tremor, but it cannot distinguish between PD and parkinsonian subtypes. A neurologist will make the diagnosis based on:

    •A detailed medical history and physical examination."

    Summary: The neurologist, not the scan, says you have Parkinson's, then you have it.

  • Thank you for replying

  • Hello Maddie. I "got through" the first few months after diagnosis by sleeping a lot and crying often. I realise now that I was in mourning - for the loss of my plans for a 'normal' future. But it passed. I began to tell a few people (which seemed hard to do at the time) and they were supportive and encouraging. I went on the Internet and found ParkinsonsUK, which led to interesting people on Twitter. My best weapons are humour and as much physical activity as possible. Planning for the worst and hoping for the best. Good luck.

  • Thanks. I'm at the sleeping and grieving stage. It's good to know someone else handled it that way.

  • Hi maddy, if you join Facebook, there is a very big group: Parkinson's online chatgroup. A lot to learn and share in this group!

  • I can see now that it took my husband nearly two years to get over the grieving and depression stage. It's a total shock and feels like life is over and I think he's realised now that it's not. Plenty of things he can enjoy and be grateful for. Plus he's sleeping better now, that seems to be the key to feeling ok. we are loving life in the short term, I hope you eventually do too. Cheers.

  • I had agoraphoblia for many many years .I do feel for you . parkinsons PSP doesn't happen overnight and you have unknowingly been held back because of it for much longer than you realise . tha has been enough to make top anxious in the first place and agoraphoblia .

    I belong to Facebook chPatkinsons chat as well , I think you might find it helpful as well as this site .

    you have lots of friends her without having to go outside .

    I don't know how old you are but it was the menopause that I started to slowly come out of the agoraphobia , Having said that I never go anywhere alone ,me been now ,

    have you read Self help for nerves written by a Dr Claire Weeks . There are other books but I read hers after seeing her on the TV one days she was Australina and was on a lunchtime programme for about six weeks . I thought she was talking to me it was a light bulb moment

  • First you need NOT to be scared, That feeds on your Parkinson and will make everything worse. I ve had this since 2002 while yes it can be scary you need to arm yourself with info and Learn to life with PD. Yes that sounds to easy however what you decide to do with having Parkinson is how you live your life from this day forward.

    God Bless and Let s know who things are going for you. This is a great site and many good people here. Take care.

  • Thank you

  • Hello, Your diagnosis could have been something else and it could be worse. Parkinson's is a very individual condition. It impossible to predict exactly what symptoms will appear and when. Each person will go through their own unique situation. Exercise is the single most important thing you can do so make it a priority it helps both mind and body. I have had Parkinson's of 11 years now and had a difficult time going to the support meeting in my area, because is was hard to watch my future. I wise woman told me about it being individualized and not to jump to any conclusions a about my future. I have thought long and hard about her advise and only I an able to take my care into my hands. I exercise 3 time a week and I have a better mental attitude which is so very important. Take care or yourself first.

  • Thank you

  • If you re phobia prohibits you from exercising in public there are many options available. A stationary bike is superb for overall fitness and has surprising benefits for PD pt's. There are DVDs , TV programs and online programs. Just don't sit still!

  • Hi Maddie, I'm so sorry to hear of your situation but with the support from friends and getting the right medication sorted I hope you can carry on leading a near normal life. I have been diagnosed over 4 years and feel better now than I did then as the shock of the diagnosis sent me spiralling downhill. Accepting it is the first step and finding the right medication and support from friends I now control it rather than the other way round. You could join a local Parkinson's group ( your Doctor may have contact details) and they should be able to help you, as the members will have had similar questions and worries themselves. There is a lot of support and help out there, go for it and remember it is not the end of the world there are lots of fun to be had.

  • Hi Maddie, As Gail says, join the local Parkinson's group if there is one. There may be someone who can take you. The Parkinson's website should put you in contct with the local organizer.

    Also find out if there is a Parkinson's nurse who can visit you. Find the name of your consultant's secretary and contact her/him if you have any queries. I always ask the consultant if I can have a copy of any letter which he sends to your GP. Ask him if you can see a physiotherapist - there may be some group exercise classes available, if you can bring yourself to go.These are most useful from the socialising point of view, as well as the exercises!

    Good Luck.

  • Thank you

  • You are on the right track by going after information. In So. California, I teach a class for Newly Diagnosed. There are many myths and rumors: It is NOT a death sentence, people die with PD, not from PD. PD is not contagious, some symptoms can get better or even disappear (TRUE).

    IF you would like a list of PD Symptoms, send me an e-mail: with 'Symptoms' in the subject line at the top. It is the most complete list I have come across. This offer is open to anyone reading this reply.

    It is a shame that you are agoraphobic, because one of the best helps are the P D Support Groups. You can get many questions answered that I am sure you have. They have gone through a similar experience that you are having now.

    As you learn more about PD, you will be able to look at with less fear. There are many new drugs being developed, studied, and a cure is on the horizon.


  • Thank you

  • please send me information

    thank you


  • You will need to "E-mail" me @ - then I will send you the Symptom List. Someday I will post the information directly on this sight.

  • Sorry to hear of your plight Maddie. I think your feelings on being recently diagnosed are partly dependent on the way you were treated by the medical people you met. In my case the Parkinsons nurse, a strong, good humoured, compassionate woman, got busy straight away signing me in for a voice examination, a physical exercise group, encouraging me to join my local PD club and other activities.

    Rather than being alarmed by all this I actually enjoyed the attention I was getting from these professional people. The hospital was bright and well staffed and attitudes were generally positive.

    One amusing thing that might have helped was when I met a friend in the supermarket. When I told him I had PD he responded, 'Parkinsons is nothing.' Obviously untrue but it had a positive tone to it. I thought 'Maybe I'm letting this thing dominate me.'

    I soon became an enthusiastic reader of the Parkinsons UK journals, especially the one dealing with research, of which there is an enormous amount world wide, eg the work that is going forward on the Diabetes 2 drug Exenatide which was shown to help with PD. ( Testing drugs for other ailments on PwPs is a new interesting line of research.) The trials will not take as long as they normally do with neurological drugs as Exenatide has already been in use and is therefore safe. There are many other interesting lines of research going ahead inlcuding stem cells, genes, and various proteins.

    Joining up here with other PwPs was a good move. You certainly won't feel alone with your symptoms.

    Take plenty of exercise Maddie, in the house. Your physiotherapist or nurse can give an indoor exercise programme.

    I understand that with the agoraphobia things are very difficult for you, but try to keep up your social life where you can. This is important for mental health in general. It makes a difference and will help to keep you from going into possible premature decline.

    Finally, while Parkinsons is a progressive disease, nobody can tell in what ways and at what rate it is going to develop. We all have good and bad times. Those who are positive and who try to keep their lives as normal as possible have the best chance.

    Best wishes on you

  • Thank you for the reply. I'm just at the point of trying to make my mind set more positive.

  • Maddi, my heart goes out to you. I was diagnosed 4 years ago. I came home and slept for 3 straight days (my way of dealing with depression). There is a grieving process to go through - grieving for all the things you want to do in your life and now aren't sure about doing. From time to time, I still feel a sudden sadness come over me. I think that's still part of the grieving. The way I've coped emotionally and I'm sure has been what has kept me from getting really depressed is my belief in God. I am Christian, so I've read the Bible a lot in the last 4 years. I've also listened to a lot of Christian television (although, I have to be careful with that - some of those guys may mean well but it sure seems like they're promoting their own ego instead of Jesus). And, I've prayed a lot.

    I've learned that appreciation and gratitude aren't just nice attitudes, rather, they're extremely powerful attitudes. If I feel myself getting down or negative, I start thinking about things that I'm grateful for, and I really think it produces some kind of chemical in my brain - the change is that quick.

    Self massage has been very helpful to me - both emotionally and with the physical PD symptoms. When the medication begins to wear off and I start feeling bad, I sit in a comfortable chair in a quiet room and gently massage my face, head, and back of my neck. This seems to help the next dose take effect more quickly, and I get comfortable more quickly. (Lately, I've added playing a CD of nature sounds - bubbling brook and bird songs. This is helping, too.)

    Yes, exercise helps a whole lot. Try to find a way to do it inside if you can't go outside. You don't have to train for a marathon, just do exercises that are safe and stress your body just a little each day. That will help you be stronger.

    Parkinson's is usually a slowly progressing disease, so you probably have time to thoughtfully consider any housing and financial changes.

    If you start taking levodopa (the most common PD med), pay attention to what you'll probably be told about how to time it around your food intake. That's been very important for me.

    I was having lower leg cramps at night while in bed. I started rubbing a magnesium gel on them every night just before going to bed. I've had very few cramps since then. Magnesium helps us relax, and it is usually lacking in our diets. (Google 'magnesium parkinson's' and see what you come up with.)

    Just because the medical establishment doesn't know of a cure for Parkinson's, that doesn't mean there isn't one. It just means they don't know of one. If you want to hold hope in your heart for being healed, don't let anyone stomp on that hope. (There will be a few who try. I suppose they mean well, but they're not being helpful.) Hope, too, is a powerful thing, and I think that it also may produce a welcomed chemical output in our brain.

    Lastly, someone said something to me this morning that I've been thinking about all day. He said, "Parkinson's looks to we humans like some big, formidable giant that will certainly crush us. However, if we could imagine what it looks like from God's perspective, it probably doesn't look so big."

    Be well, Maddie.

  • Thank you for writing. I too am a Christian and have found prayer a great help, especially for rejecting negative thoughts.

    Thank you for all your advice.

    Regards, Maddie

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