Just joined

[Rose54]

HI

I’m Rose 54

Diagnosed last week after waiting a year for Nurology appointment .

Should be starting meds soon

Scared of the future

L

[Grammy80]

Hi Rose54, I just saw your post and your desire for the links to Zoom meetings. Bolt_Upright had sent me the links and I hope he sees this and responds to you. Another option is to go to my postings and read the responses to my 9/24 posting of 'newly diagnosed' and you will see the link. I've tried copying it before without success and Bolt_Upright stepped in with a proper link that worked. Today the gathering will be at 11: 00 AM CST and the second gathering is 7:00 PM on Thursday eve, CST. We just turned our clocks back in the US last night.

I had the same reaction you did, that it was over my head and like a foreign language but I learn a little more each meeting. Most of the people have been dealing with this for some time.

Could someone please respond to Rose54 with the link so she can join this group. Thanks and hope to see you Rose54.💞

[Rose54 in reply to Grammy80]

thank you

Any idea what time that would be in uk

[Grammy80 in reply to Rose54]

I think I referenced in chat....but the 11 am for me is 5:00 PM on Sundays for you. The 7:00 PM Thursday....would be 1:00 AM for you....but it you are up, why not join. Hope this helps, Rose54. 💞

[PixelPaul]

Welcome to the club that nobody asked to join. The diagnosis comes as a real shock to most. The most important thing to realize is you still have many years ahead of you. You have a lot of control over how good those years will be. I'm 6.5 years in and all things considered still doing pretty well. Regular exercise, a healthy diet and managing stress are vital. And this forum is an amazing resource, I have learned so much here. Stay positive and good luck!

[Rose54 in reply to PixelPaul]

Thank you

[Bolt_Upright]

Join us on Zoom:

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Koalas007]

I’m Margarida 50 Parkinson’s 14 advice don’t give trust to parkinson don’t give up your faith

[Koalas007]

I’m living Accrington

[CRMACK1948]

The kind of help and support you will get from NHS sources depends where you live,You will be assigned a Parkinson's nurse who can be really helpful in practical ways Most of them and neurologists will be very negative about alternative treatments herbs and supplements but many on this forum have had positive results and are happy to share.The only regime that keeps Parkinson's at bay is exercise.As soon as you can find out about PD Warrior classes They are a set of exercises especially designed to repurpose areas of the brain and they do work.They aren't hard to do but you need to learn the right way to do them and then do them every day The sooner you start the better chance you have of keeping fit for many years to come,Everyone gets something.Unlike cancerwhere we can do relatively little to help ourselves you can do loads of things to keep in control.This site is amazing,Iv learned more stuff here than from any of our health care professionals.You can start today to take control and we all will look forward to hearing about your journey

[Rose54 in reply to CRMACK1948]

Thank you that all sounds very positive

We have no Parkinson's nurse here at present as that are trying to fill the position.

I normally go to a Heart Care exercise class on a Monday but have recovering from hip operation.

My legs and feet are badly swollen and this effects my valence so l am finding it hard to walk without elbow crutches.

Manage about half a hour walk each day and will start exercises today as some l can do holding on things.

[Coletteflint]

Hi. I was diagnosed at 53 and thought my life was over. Five years in I can emphatically say that it is not. Parkinson’s can often be managed and managed well for years. I continue to live my life as before diagnosis with added tremor, cramp/rigidity and anxiety none of which are more than minor interruptions to be noted and dealt with. My top tips for anyone newly diagnosed are:

1 Find a drug regime that works for you and stick to it. Take your tablets wherever you go and take them on time. Note how or if food can make them less effective and time your meals accordingly.

2. Exercise. Primarily do something you enjoy (I love swimming (wild and tame) and do lots more of it now. I do online PD Warrior style classes, walk and go to the gym and I really enjoy it. Apart from the odd swim, five years ago I did no exercise. I am now much fitter than I was and my Parkinson’s symptoms do not bother me any more than they did five years ago.

3. Join a local Parkinson’s support group. You will be able to find one on the PUK website. Three years ago I joined MK Working Age Group (WAG) and met a fabulous variety of local people living their lives whilst coping with Parkinson’s in all its forms. If Parkinson’s causes you a new problem someone in the group will have had it and found their own way to deal with it before you. They’re all happy to talk (and laugh). We meet socially once a month and do regular walks, boxercise, table tennis and dance lessons together. I really feel supported by people who I am sure will be lifelong friends.

4 Carry on living your life. Try not to let Parkinson’s stop you from doing anything - just adapt if necessary. I have found Mindfulness quite helpful. And can highly recommend the book Mindfulness for Health by Vidyamala Burch and Danny Penman. I also really enjoy the Movers and Shakers podcast.

5 If money is an issue get help to sort it. You don’t need financial worries on top of Parkinson’s. Citizens Advice can help with financial concerns generally and Citizens Advice and PUK can help with things like claiming Personal Independence Payment. I have also found a wealth of information and advice from people in my local WAG group.

If you had asked me five years ago I would not have been able to see anything positive about my diagnosis. Five years on I am fitter and more active than I ever was and although I would jump at a cure, I can honestly say that what has followed on from my diagnosis has actually changed and enriched my life.

[Rose54]

Thank you

I have found the support group in my area

Only need to a arrange transport to get their as l don’t drive.

Great believer I mind fullness and meditation along with supplements

Your post sounds very positive

L will show it to my Son who lives with me and will be my support through this

[gregorio]

Hi, I am 6 years in, med free and as others have said, I have stiffness and tremors. In the beginning I was prescribed C/L and Azilect,, treatments for conditions I didnt have yet so I stopped them all. Diet, supplements, exorcise and positivity. my story /posts and updates are on here for you to read. good luck. research, research and research.💪

[Flavia73 in reply to gregorio]

Salve posso chiedere come ha fatto ad eliminare C/L e che integratori utilizza grazie mille

[BriMeister]

That's horrible Rose, but its getting like that in the States, As Corporate America takes over health care, wait times have tripled, But if you can find a private Neurologist they can get you in in a couple of weeks, At least for now. God Bless

[Rose54]

I live on small island so what we have here is vey limited.

I was lucky that the Neulogist comes from mainland to hold a clinic

[Eddie129]

hi Rose. I’m sorry that you have the same diagnosis as the rest of us. What helps? Good diet, lots of exercise, positive mindset and this amazing group that are here to support you. There’s a lot of information out there and it can be very confusing.

there are Facebook pages that are also helpful. I follow Parkinson’s Warriors, Parkinson’s alternative healing and Parkinson’s B1 therapy - the one that Daphne Bryan moderates. (she also wrote a great book on B1 therapy. That’s available on Amazon. Worth purchasing.)

we have come a long way with Parkinson’s and therapies that are available. There’s a lot on the horizon as well. Stay positive keep your chin up and know that this is not a death sentence.

Best of luck to you

[Rose54 in reply to Eddie129]

Thank you so much

I am hoping when on meds my walking will improve I am 4 months on from hip replacement and still on crutches so getting about places is hard.

You are all so positive which has given me such a boost

I was reading some of the replies to my Son last night which made him more positive

Thank you

[Freiburg61]

hello Rose, I‘m 63 and diagnosed in 2019. It may sound strange, but in the end I was relieved to know what to deal with. I‘m not longer suffering , I can do a lot exercise, enough time for me, good diet , medication , all the things are mentioned above. And one really important and heart jumping thing is : I have a lot of time with my Grandchildren, that would not have happened otherwise . And I knew a few nice people more.

Take care

[Rose54 in reply to Freiburg61]

Thank you for your reply

I hope when medication starts l will axle to do more.

At present l do half a hours walk a day and a few bits indoors then l had enough .

Unfortunately my only Grandson lives a long way away so u

Only see him a few times a year. But there always Sype