I’m pretty sure I have Parkinson’s. My walking has slowed the last year , frozen shoulder and my fingers are twitching . GP said they would refer me to get checks although didn’t seem convinced. I now have all over body twitches which I think are caused by the extreme anxiety I now have. Surely it doesn’t progress in a few days? I can’t see a way forward and just see myself with no life ahead . I’m traumatised. If I have it is there a way forward.? Sorry
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Hi Alison, and welcome to our friendly forum community. I just wanted to say hi and to let you know that we have a lot of very helpful information on our website at Parkinsons.org.uk. You can also call us at 0808 800 0303 for free and confidential one-on-one support.
I’m sure other members will jump in to welcome you and help to answer your questions. Meanwhile, I’d encourage you to look around and see what you discover.
Best wishes,
Zofia
Forum Moderator
It’s difficult to tell. I went to GP when my left hand became unruly - couldn’t touch my thumb to fingertips and finding it difficult to pick things up - I was told to do a bit of physio. Two years later diagnosed with Parky’s!
With hindsight I can now see that it has been with me for at least 15 years!
It didn’t accelerate quickly for all that time, but in the last year and a half it has really kicked in.
Be persistent. Get a referral to a neurologist. When I was referred, (remember the ‘do physio’) the neurologist watched as I walked to his room, sat me down, and said ‘You’ve got Parkinson’s’ easy as that.
Whatever it is you have, it should be identified, if only for your peace of mind.
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Hi Alison sorry things are difficult at the moment. I had a tremor for over a year but thought it was caused by being on lithium. When I finally spoke to my GP it was a year before I could see a consultant and get a diagnosis of Parkinsons. Please let me assure you that being told one has Parkinsons is not much fun but nor is it a disaster. I take 8 tablets a day, get tired more easily and suffer with anxiety, but compared to friends who have or have had cancer, ms, m.e. ,macular degeneration etc I think I’m quite lucky. I do hope you’ll get a diagnosis soon, everyone on this Forum understands what it’s like. I wish you all the very best.
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I’m sorry you’re having a rough time at the moment. I just wanted to say, if it is Parkinson’s, then there absolutely is a way forward.
Everyone is different, but I find the physical symptoms change a lot when I am stressed or anxious. I take comfort from the fact that Parkinson’s is a fairly slow condition, I feel like at least I have time to adjust to each challenge.
I was diagnosed two years ago, and feel like, although it’s not exactly easy, it is manageable.
Hang in there, and I hope you get some answers soon.
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Change your focus , there are many natural options that can help with PD.
I suspect that your anxious state is making things worse for you, I was in the same place when first diagnosed. Have a look at YouTube for PD and keto diet , PD and intermittent fasting, PD and red light therapy / photomodulation and the success stories will calm you down I am sure , all is not lost .
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Hi Lar
It might just be best for Alison to get a diagnosis for her problems rather than trying to treat something she may not have. At this point in time she has not been diagnosed with PD.
Regards
Doug
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Hello Alison,
Please make sure that you have actually been referred to your Neurology department, in order that you have a date to focus on.
Let your GP know that you are feeling extreme anxiety symptoms and he/she may be able to have you moved up the waiting list
If you do have Parkinson’s your life is not over, it is going to be a different kind of normal.
Let us know how you get on.
Graham
Hi all
Got referral to neurologist and had DAT scan. I went private as I was going insane. I wish I hadn’t as it showed I have very early stage - just a twitching finger - and on examination by neurologist before scan he said I did not have it as every test he did was negative. He said it will probably be 5 years before I need medication. I feel my life is over and am crippled with anxiety. I keep thinking I won’t see my grandchildren grow up or my youngest daughter get married. I cannot function . Please please can someone help me by saying they are having a normal life afew years down the line as I feel I have nothing to live for. Thanks you all
Hi @Alison6, I was diagnosed in 2017 and progression has been very slow. I’m still able to enjoy trips abroad - most recently to Mexico and Guatemala - and to babysit for my grandchildren. I think this is the case for many people so try not to worry too much. Do you think the anxiety might be a Parkinson’s symptom? Before my diagnosis I used to get really bad anxiety - so much so that I had to give up work. But after I was diagnosed I was prescribed rasagaline and the anxiety pretty well disappeared.
All the best
Clare
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Hi Alison, thank you for reaching out on this forum. We’re so sorry to hear that you’re having a difficult time with your diagnosis and we wanted to let you know that you’re not alone. We’re here for you, as are others in this community.
We have lots of information on our website that can provide insight and guidance around symptoms as well as management of these which can help guide conversations with medical professionals. You can read more about this on our website here: Health professionals and Parkinson’s | Parkinson's UK
We also have a helpline where we can put you in touch with one of our Parkinson’s nurses who can offer their advice and guidance as you navigate through this process. It’s free to call and totally confidential: 0808 800 0303.
Please know that you can reach out to us any time. We’ll be here to support you.
Sending all our love,
The Parkinson’s UK Moderation Team
Thank you so much Clare xx how do you live with it every day in your head though ? It’s like mental torture for me. Every time I see my grandchildren I want to cry thinking I won’t see them grow up. My husband has been very supportive and I feel so bad for him. I feel like I have closed down completely and can’t function. I left my job which I loved the next day as I could not cope . I cant see a way forward and feel I will never be happy again as my life has been changed for the worst forever
Hi @Alison6, When I was first diagnosed I assumed that it would put an end to all the things my husband and I had planned for our retirement. We immediately booked a long trip to South America thinking that we would soon have to give up travelling but now, eight years on we are still planning trips.
My grandchildren are 8, 6, 6 and 3 years old and I certainly plan to stick around long enough to see them grow up!
I think I’m lucky because I have a very positive attitude and although the Parkinsons has slowed me down a bit (well quite a lot, if I’m honest) I am still prepared to make plans and look forward to executing them.
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Thank you so much again. My husband is semi retired and we had a trip to New Orleans booked for September which I cancelled in a blind panic . My grandchildren are 4 and 1. You have given me hope that life can go on but I’m mentally really struggling. When I was diagnosed the consultant just said I wouldn’t need medication for 5 years and then said goodbye with a referral into nhs for monitoring. I have had no support at all . My GP has been really good ringing me twice a week. He prescribed sleeping tablets which I need. I just feel cheated , angry and hopeless. If you don’t mind me asking how old were you when you were diagnosed? My youngest daughter is getting married next year and I’m doing full on catastrophising that I won’t be here . Thank you again for your support it means a lot xx
Hi Alison, you’ve come to the right place for support. You’re not alone and we’re here to help.
Please do consider reaching out to our confidential helpline service if you need us. We have a team of trusted advisers that can offer the best support on how you’ve been feeling. It’s available on 0808 800 0303 or [email protected]. You can see details of our helpline opening times here: Helpline and Parkinson's advisers | Parkinson's UK
If you do find yourself mentally struggling, we also recommend giving The Samaritans a call. They are available 24/7 on 116 123.
Take care,
The Parkinson’s UK Moderation Team
Alison,
May I ask your age please. I’m 51 and was diagnosed January this year and began meds straight away. Mentally I’m doing ok, a few off days but generally okay.
Hi Alison. I was 59 when I was diagnosed. I was put on rasagaline straight away and started on sinemet 2 years later because the tremors had started interfering with my ability to do normal things.
How old are you and what are your symptoms? If you’re happy to do your own research then I would recommend doing so and not necessarily trusting the professionals. My first consultant was very dismissive and didn’t listen to my concerns but I have a very supportive parkinson’s nurse. Eventually the consultant asked me to find someone else because I followed the advice of the PN rather than her. My PN then recommended another consultant who is a parkinsons expert and she has been amazing.
Do you have a Parkinson’s Nurse? I know it’s a bit of a postcode lottery but if you are lucky then they can be invaluable. I think one of the solutions is to make sure that you are informed as not all neurology consultants are experts in Parkinson’s.
If your consultant doesn’t feel that you will need medication for several years then I’m sure you will be around for you daughter’s wedding and probably those of your grandchildren as well!
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Hi Hannah I’m 61
Hi I’m 62
Thank you again Clare . I’m 62 and my symptoms are twitching finger and stiff right leg ( on and off).
My private. Consultant is a professor and he has now referred me into nhs where apparently I will have a Parkinson’s nurse. I’m not sure what he based his “ won’t need meds for 5 years “ on? I think the DAT scan.
I just feel so terrible. The job I loved where I had been for 20 years went the next day and I feel like I have no purpose. I just sit in all day as nobody apart from my husband knows and that’s the way I want it . I just feel like there’s no point to any thing and I can’t leave the house . Please tell me I gets better and thank you so much again xx