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Diadnosed Parkinism. Anxiety sky high
I have been diagnosed with Parkinsonism. I have to have a special PET/CT scan to show the extent.
My anxiety level is sky high, yet at the same time I feel numb. This means so many changes - where I live, changing the meds I'm on. My head is scrambled and I feel too weak to face it all.
Has anyone any experience of it please?
Any ideas how to cope with the level of anxiety? I've never been this bad before. Couldn't even spell the heading to this thread!
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Re: Diadnosed Parkinism. Anxiety sky high
Sorry I can't help you tana but be assured I'm thinking of you.
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Re: Diadnosed Parkinism. Anxiety sky high
Hi,
Yes there will be life changes. I assume you did a search of medication and prognosis. 25 years ago when I was diagnosed with Arthritis I started making the changes. The worst was being told it would rob me of ten years of my life. Some days I feel like time is up. It isn't over till it is over. But I'm sure you already know that. What can any of us say other than we wish the best for you and that you get all the help you need.
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Re: Diadnosed Parkinism. Anxiety sky high
Hi 23tana,
I am really really sorry to hear this. I can't imagine how this has made you feel.
I have no experience of this but I know Carnation's dad went through it and there is a fairly new member on here with so I will find him and post his details.
:hugs:
EDIT: this was the guy I was thinking of but he's not been on since the start of May:
http://www.nomorepanic.co.uk/showthr...ght=parkinsons
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Re: Diadnosed Parkinism. Anxiety sky high
Thanks Terry. I pm'd him and he replied. :)
I'm trying to deal with the anxiety and fear as best I can. It seems that having an actual condition is not what people want to hear on here. nmp was the first place I turned to, but unfortunately with little response. I was looking for help to control the horrendous anxiety, but I feel like a leper.
Maybe time to move on to a Parkinson's site. I hadn't wanted to do that as I'd wanted my support group to stay as wide as possible.
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Re: Diadnosed Parkinism. Anxiety sky high
Please talk to me peeps. Some of you must have had results, or be awaiting tests, that scare you. How do you deal with it please? I'm obsessing here
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Re: Diadnosed Parkinism. Anxiety sky high
23tana, I'm really sorry to read about your diagnosis and sorry I seem to have missed it when you originally posted. I can't imagine what you are going through. I don't have experience with Parkinsons myself, but am thinking of you and sending you loads of hugs. When did you have your tests? It is so hard waiting for results, although for me the lead up to taking the test is worse than waiting for the results. I think because in my mind, what is done is done after I have had the test - can't do anything about it then, ya know?
Do you have any support? Any family or friends who are helpful and assisting you through this process? What activities do you enjoy that you can do to pass the time waiting? Mindfulness meditations are helpful and there are loads of guided ones out on youtube for free.
Keep us posted if you like, I'm sorry you haven't had a lot of responses!!
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Re: Diadnosed Parkinism. Anxiety sky high
23tana, I don't know how I missed this Thread.
Yes, Terry is right. My Father had Parkinson's Disease quite late in his Life.
There are different types of Parkinsons and what you have to remember that it does not kill you, it is a condition that you have to adapt to.
There are Meds that can improve and control Parkinsons and you can lead a normal Life with the help of these for many, many, many years.
I think you have an assessment and they test you on your reflexes and balance mainly. They score you out of ten. Then they prescribe meds on the outcome of this.
Anxiety can obviously make Parkinsons worse and in my opinion it is related.
My Father was a severe worrier.
Parkinson's also affects sleep, I don't know if you have experienced this yet.
Now, patience was not one of my Dad's best points.
The best thing you can do is keep busy ALL of the time. No matter what it is, you need to keep the brain occupied with little jobs. And don't go to bed thinking, I can't sleep, I am worrying. Just lay on the bed with no intentions of sleeping. Listen to music, read a book, do a crossword, sing a song, just don't fret about the sleeping.
Keep in touch by phone with as many people you can. You need to feel the comfort and knowing of that.
I believe that you were on one of my other threads and said you lived alone?
What are your neigh-bours like? Are you friendly with them?
Maybe if you need to, you could PM me and tell me a bit more about it all, if you want?
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Re: Diadnosed Parkinism. Anxiety sky high
Sorry to hear this 23Tana. My dad was diagnosed with Parkinson's last year which was a shock to us all.
He is absolutely fine. The doc has him on new pills and he is still the same as ever. Talking to others about it lots of people seem to share that they have a relative/friend etc who has the condition and function as they always did.
There are plenty of useful forums about where you can discuss your worries and learn useful information. I researched a few things for dad. There are people living with the condition with a lot of useful advice and tips to give. Maybe there are support groups in your area too where you could make friends.
If you have any questions let me know and I can pop a message to dad and ask him.
Try not to worry. I know it's really difficult. Keep connected to other people.
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Re: Diadnosed Parkinism. Anxiety sky high
I can't offer you any advice from personal experience but I think it's really important that you continue to post on NMP, particularly on the HA forum where most people tend to visit.
You should have as much support if not more than regular HA posters. Quite frankly you should come right at the top of the list for support and help and maybe it would be good for other people to experience what it must be like to have a diagnosed condition and how to manage anxiety arising from your diagnosis.
I'm sure that Carnation will give you the best possible information and advice as will others who have personal experience. Please don't feel abandoned-I'm so sorry you have felt like this. I'm sure some people just don't visit this part of the forum much?
---------- Post added at 21:22 ---------- Previous post was at 20:50 ----------
There is a thread about diagnosed conditions on the HA forum and I wondered whether you might find it helpful and hopefully reassuring, 23tana?
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Re: Diadnosed Parkinism. Anxiety sky high
Hey Hun I can't possibly imagine what you feel about your diagnosis but I do second everything Pulisa says .
Whilst I do have a lifelong condition and I do know how hard that can be juggling all the balls in the air .
Please if you need a shoulder I am here XX
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Re: Diadnosed Parkinism. Anxiety sky high
Hi , my dad has parkinson's and i have done a lot of research about it so i can help him and my mum through it .
Firstly you need to understand that Parkinson's can be slowed down by meds, but when my dad was diagnosed they gave him the choice whether to take meds straight away or wait , he chose to take them and i don't know if that was a good thing but we won't know as it is under control .
Anxiety stress and life trauma can bring on Parkinson's and the more anxiety and stress you have the symptoms are heightened , my dad is a naturally stressed person and he cannot calm down so his symptoms are high at times .
The one thing i will advise you to do is to do as much research as you can about the help available and also you must keep active and do physio and also speech keep your voice exercised and sing sing sing because the muscles get weak with Parkinson's but the stronger you keep the muscles the less the symptoms , i know this because my dad has to do physio and when he lacks in his exercises he gets weak slower and he aches .
I hope i haven't scare you ,i just want you to be healthy and if you exercise it will help you a lot . Also join Parkinson's help groups they give you lots of advice and have tons of activities to help you .
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Re: Diadnosed Parkinism. Anxiety sky high
Hello FeeltheLove.
I posted earlier on this Thread as my Dad had Parkinson too.
I just wanted to say that my Dad was very active and lived to be 83.
He was as bright as a button, sang all day long and did not die because of the Disease.
If you ever need to chat. I am around for you. :)
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Re: Diadnosed Parkinism. Anxiety sky high
I'm glad you are getting a bit more support 23tana. I think this board is pretty quiet since there was a member with skin cancer on here who only had a few responses. I think that's just NMP really but hopefully now pulisa has raised this issue, and some others have found your thread, you will get more support going forward which seems to be the case.
Using a forum for Parkinsons will be a good idea to get tips on how to deal with the NHS as well as anything that can help is a good idea anyway and there are a few people here with experience too. :hugs:
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Re: Diadnosed Parkinism. Anxiety sky high
Thank you everyone. The shock is receding somewhat and I am starting to research my options depending on the result of the scan.
My anxiety level is still very high and I suppose it will be until the results are in. I'm trying to concentrate on keeping that and intrusive thoughts in check.
Your tips, comments and support really help. I'll have to supply everyone with earplugs if I have to sing my way through it!
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Re: Diadnosed Parkinism. Anxiety sky high
This must be a very stressful and challenging time for you and I do hope you get the results as quickly as possible-the waiting game is just horrible.
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Re: Diadnosed Parkinism. Anxiety sky high
Quote:
Originally Posted by
Carnation
Hello FeeltheLove.
I posted earlier on this Thread as my Dad had Parkinson too.
I just wanted to say that my Dad was very active and lived to be 83.
He was as bright as a button, sang all day long and did not die because of the Disease.
If you ever need to chat. I am around for you. :)
Thank you very much i appreciate that :)
---------- Post added at 18:57 ---------- Previous post was at 18:56 ----------
Quote:
Originally Posted by
23tana
Thank you everyone. The shock is receding somewhat and I am starting to research my options depending on the result of the scan.
My anxiety level is still very high and I suppose it will be until the results are in. I'm trying to concentrate on keeping that and intrusive thoughts in check.
Your tips, comments and support really help. I'll have to supply everyone with earplugs if I have to sing my way through it!
Ha ha don't worry about others just sing sing sing if they don't like it then they will have to join in with you :yahoo:
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Re: Diadnosed Parkinism. Anxiety sky high
Quote:
Originally Posted by
pulisa
This must be a very stressful and challenging time for you and I do hope you get the results as quickly as possible-the waiting game is just horrible.
I've an appointment to hear the results on 10th October. Years away!
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Re: Diadnosed Parkinism. Anxiety sky high
That's an unacceptably long wait! Could you ask to go on the cancellations list-there's always a chance that you could get seen earlier?
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Re: Diadnosed Parkinism. Anxiety sky high
My Dad had to wait ages too Pulisa. One was bout 3 months and the other was another 3 months. I don't know why that is. :shrug:
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Re: Diadnosed Parkinism. Anxiety sky high
Lack of staff, not enough clinics, too much paperwork..?
I'm sorry that it's all been so long drawn out for you. It may be "routine" for the docs but not so for you or any patient awaiting results
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Re: Diadnosed Parkinism. Anxiety sky high
Yep. Think you got it right.
It was the same with my Partners Cancer OP. 7 months wait in total.
We got so fed-up with waiting, we just had to get on with our Lives.
That's what you have to do. Do what you can your end and keep your day full with things so it keeps your Mind off the worry. You can't sit there marking the days of the calendar, it will drive you mad and push the Anxiety up.
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Re: Diadnosed Parkinism. Anxiety sky high
Wow, can't believe they make you wait that long. That's unbelievable and a shame. I hope you are hanging in as best as you can.
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Re: Diadnosed Parkinism. Anxiety sky high
I guess it's a priorities issue and with it being non life threatening, you go in the queue. It's really sad given the fact this is a very scary problem to face.
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Re: Diadnosed Parkinism. Anxiety sky high
Apparently the scan I have to have (PET/CT) can only be done by a special machine of which there are only 4 in the country. So there are long queues.
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Re: Diadnosed Parkinism. Anxiety sky high
Are you able to take a Holiday between now and then. It will give you something nice to look forward to. I don't know your personal circumstances 23tana, but a break or change of some sort will definitely help. :)
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Re: Diadnosed Parkinism. Anxiety sky high
I saw my psychologist today. She's abandoned what we were doing and has booked a series of meetings to support me through until after I get the Parkinsons test results in October. I was really pleased. Just hope my CPN has as much sense when I see her tomorrow.
Carnation, I have thought about going away for a while. Maybe just a few days distraction. Thanks for all your advice.
The anxiety seems to subside a little, then bang it hits me again. Just like other people have said, things that seemed major before have receded into the distance now.
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Re: Diadnosed Parkinism. Anxiety sky high
How sensible and supportive of your psychologist and it's just what you need. Let's hope your CPN can be equally practical and supportive-grab whatever support you can from every available service.
If you think a few days away would help to distract you and give you a break from your everyday routine then go for it! Just think of your own wellbeing.
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Re: Diadnosed Parkinism. Anxiety sky high
I'm glad your psychologist is adjusting the schedule and sessions to be more supportive of you. That's really good. I agree with what others have said - do something for you. It's all about self-care and whatever helps your wellbeing!!
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Re: Diadnosed Parkinism. Anxiety sky high
Just thought I'd say Hi and to see whether you have planned a break or holiday?
How have you been coping lately? :)
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Re: Diadnosed Parkinism. Anxiety sky high
Hi. I've not been too good - had a stomach bug that left me in bed with nothing to do but dwell on things. Waking to horrid panic attacks every day.
Still not had a date for the scan. I'm not coping well with the wait. Have decided now is probably not the best time to go away. I feel weak and exhausted.
Thanks for asking. I appreciate it.
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Re: Diadnosed Parkinism. Anxiety sky high
Maybe you could go somewhere when you have gained your energy back; I think it would be good for you if can manage it.
Waiting for dates to come through is agonizing. I know it is difficult, but you just have to put that to one side.
The main thing is you get yourself well from the bug that you had.
Make sure that you eat and drink well, if nothing else.
Gain your strength back.
Maybe you could write some letters to people. I did that when I was cocooned for 3 months. Listen to music that gives you happy memories. Phone a few old friends from the past or something like that. :)
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Re: Diadnosed Parkinism. Anxiety sky high
That's really bad luck to get a stomach bug on top of everything else. I'm not surprised that you're feeling low and hope that you feel better and get that scan date very soon xx
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Re: Diadnosed Parkinism. Anxiety sky high
Get some rest, listen to your body. Maybe when you rebound a little a trip would be more realistic. Sending hugs :hugs:
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Re: Diadnosed Parkinism. Anxiety sky high
Thinking of you tana,keep playing the games.
Love Petra x:D
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Re: Diadnosed Parkinism. Anxiety sky high
The doctor has put my sickness down to anxiety. I have literally made myself ill worrying about this.
I am trying hard to change my mindset. Whatever type it is I already have it and the scan is only going to confirm the extent.
Bed is still my refuge but I am trying to get up more and do little things to distract me. I've contacted the Parkinson's support helpline and hope to hear from them soon.
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Re: Diadnosed Parkinism. Anxiety sky high
I think the support line is a good idea. They should be able to help a lot.
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Re: Diadnosed Parkinism. Anxiety sky high
That's a great idea. I was just going to ask if you had support groups around, but you got there first. Hope you are feeling a little better soon.
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Re: Diadnosed Parkinism. Anxiety sky high
Just get as much support as you can from every appropriate avenue. Really hope you feel better mentally and physically very soon xx
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Re: Diadnosed Parkinism. Anxiety sky high
Are there any you can attend? You might make some good friends there too?