View Full Version : Diadnosed Parkinism. Anxiety sky high

28-06-15, 02:40
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!

28-06-15, 02:56
Sorry I can't help you tana but be assured I'm thinking of you.

28-06-15, 05:26

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.

28-06-15, 06:38
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.


EDIT: this was the guy I was thinking of but he's not been on since the start of May:


27-07-15, 00:39
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.

27-07-15, 06:22
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

27-07-15, 12:04
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!!

27-07-15, 19:37
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?

27-07-15, 20:31
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.

27-07-15, 21:22
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?

27-07-15, 21:49
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

27-07-15, 21:58
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 .

27-07-15, 22:36
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. :)

28-07-15, 04:29
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:

28-07-15, 14:09
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!

28-07-15, 16:59
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.

28-07-15, 18:57
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 ----------

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:

28-07-15, 19:40
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!

28-07-15, 19:59
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?

28-07-15, 20:09
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:

28-07-15, 20:34
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

28-07-15, 21:17
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.

28-07-15, 21:30
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.

28-07-15, 22:56
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.

29-07-15, 01:07
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.

29-07-15, 01:29
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. :)

29-07-15, 11:49
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.

29-07-15, 13:54
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.

30-07-15, 00:04
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!!

03-08-15, 18:30
Just thought I'd say Hi and to see whether you have planned a break or holiday?
How have you been coping lately? :)

03-08-15, 19:18
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.

03-08-15, 19:48
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. :)

03-08-15, 20:03
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

03-08-15, 21:07
Get some rest, listen to your body. Maybe when you rebound a little a trip would be more realistic. Sending hugs :hugs:

blue moon
03-08-15, 23:27
Thinking of you tana,keep playing the games.

Love Petra x:D

05-08-15, 14:24
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.

05-08-15, 16:43
I think the support line is a good idea. They should be able to help a lot.

05-08-15, 17:29
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.

05-08-15, 17:41
Just get as much support as you can from every appropriate avenue. Really hope you feel better mentally and physically very soon xx

05-08-15, 23:09
Are there any you can attend? You might make some good friends there too?

18-08-15, 21:37
Been to GP. I saw neurologist in June. I asked my GP to chase scan appointment as I've still heard nothing. She has had a reply from neurologist that their original letter has been lost (that's actually what it says. No apology.) They are having to write again with details when found, so I know nothing right now. Don't know if scan was booked or not. Neurologist nurse and secretary at GP's are chasing it.

I am beyond fed up. Anxiety has turned overnight to depression. All I can do is sleep. How do I fight this? I feel like a non-person - a piece of paper that happened to be dropped in a waste bin somewhere. I'm too numb to even get angry.

Can anyone help me snap out of this?

18-08-15, 21:54
I think in view of this almighty cock-up that you have every right to have your referral fast-tracked through and you should have your scan at the time it was originally scheduled.

I appreciate that you have no energy to pursue this and it does take up a lot of time to keep on pestering them but a single phone call to the neurology department voicing your concern as to why an important letter has just been lost in the system when you have been diagnosed with Parkinson's a few months ago may make them look into this with more urgency?

You must feel gutted but please don't lose heart? It's another setback but you'll get there. Why are things so complicated when you really need a swift and reliable service from the NHS?

18-08-15, 23:58
Wow, you know I can definitely see why you'd be anxious and fed up with all of this. I can't imagine how exhausting emotionally and physically it has been on you.

The reason you don't give up is because you know you deserve better than this and deep down a part of you wants to keep fighting.

Hang in there. :hugs:

19-08-15, 00:10
23Tana, this happened to my Partner. So don't take it personally.
It will get sped up second time round, but I think that it is now the right time for you to get away and have that break. I know you don't feel like it, but believe me, you need it and it will help enormously. That's what we did. We got so fed-up with it in the end. So, please, please try and do something; anything. :hugs:

19-08-15, 08:19
One of these...:hugs:

These things always annoy me because when you have systems that work on appointments with follow up actions, they pump out reports of things that haven't happened in time or those that have been waiting too long. You would expect them to have robust system reporting for this and if your letter was printed and you didn't show it should flag something up surely? (I'm not saying you didn't, just that to them it should at least look that way as a doctor would be expected to be updating your notes with results).

It's so annoying when this happens and it makes all our highly paid doctors look like a bunch of numpties that you wouldn't trust handling your phone bills let alone your health! (If you don't pay those bills by the expected date, guess what those systems send you automatically :doh:) I've always disliked this pass the parcel they play when they refer you yet you have to go through your GP a lot of the time to speak to them for you.

I really do think your GP should work harder. As pulisa says, just picking up a phone and speaking to a human being to book something in means getting priority. My dad had a minor op last year and it left him with pain and he asked his GP to chase the hospital up as they had said to come back, the letter got lost and it was up to my dad to chase his GP to be told it was lost and no apology like you. We really shouldn't be expected to be chasing them, they should have a system capable of handling the management of their patients. The private sector seems to manage this.

I think the best thing would be to get some sleep and have a break from this for a short time, even overnight, and you may feel less sick of it. I had to chase my GP 3 times for a referral to CBT, with no explanation of why it wasn't happening, and it was the last thing I needed. But sadly, sometimes we have to push to make them do their jobs and you will get what you need quicker. Don't exhaust yourself though, kick the GP and let them kick the others for you, then you put it to rest for a bit and distract yourself with things to make you feel better and let it come back to you when they have sorted their mess out.

I hope it is sorted soon and I hope you find something to keep you happy right now and that your anxiety isn't affected too much by this. Vent all you want on here if it helps or just have a chat.

20-08-15, 19:17
How are you 23Tana? :hugs:

Have you managed to sought out a break of some sort?
I wish there was more I could do for you, but I am here if you need to talk. :hugs:

20-08-15, 20:19
Thank you for your replies everyone. Still nothing heard about the scan yet. I'm thinking of ringing the clinic myself to see if it's been booked in.

Carnation I am going to go to my sister's for a few days. I can relax there. Her children will keep me busy. I haven't seen her for 2 years so we have a lot to catch up on. Thanks for your offer to talk.

20-08-15, 20:57
I'm glad that you've made some plans and that you're going to see your sister. I hope you'll feel better just by getting away from it all xx

20-08-15, 22:37
Oh, I am so pleased you are getting away. :) :hugs:

01-09-15, 19:40
How are you 23tana? :)

01-09-15, 22:49
Hello. I had a good few days away. Came back exhausted after playing with the children and talking to my sister! You were right - the break did me good. :)

Last week I rang everyone remotely connected to my case that I could think of. The radiographers secretary remembers booking a scan date because of my surname. She doesn't know if admin sent out a letter or not. She's chasing it and so is the Parkinson's nurse. Needless to say I've heard from neither of them yet.

I feel like I'm stuck - absolutely helpless. Invisible. I'm exercising and contributing on here to keep me sane. My head feels as though it could explode any minute. I am so angry and scared. I know the delay won't really change anything, but my anxiety builds until I find myself back in bed again.

Sorry for the moan. Thank you for asking. I hope you are doing ok.

01-09-15, 23:02
Don't let that be a one off 23tana. Make plans for your next trip. You have to make plans; it's something to look forward to and keep you going. :)

It doesn't matter what you do or who you speak to regarding your appointment.
Unfortunately it will only happen when they seem fit to do it. :mad:
In the meantime, coming on here; playing games and chatting to people will help to pass the time and keep your mind reasonably sane.
You have to watch out for the nights drawing in. That can also be a depression trigger, so look at other ways to give you purpose and something to look forward to.
Can you do any voluntary work for a charity or maybe join a club of some sort?
We have to keep going 23tana. We are alive and days must not be wasted.
You need to associate with as many people as you can; you don't know, you may make some new friends. Even if you go to the Library every so often. You are getting out, doing something and meeting people.
I know it is hard and you must feel scared and feel alone, but don't be alone. There are some lovely people out there and please join a help group, so that you have some professional help too.
Keep strong and Positive. :hugs:

02-09-15, 03:34
Thank you Carnation. I know we're headed for the SAD season. The dark wet days always affect me. I have daylight bulbs in the lights. I used to do a lot of model making, but can't do the fine work now because of the tremors. I need to find a new hobby for this winter.

I have to ask my GP to refer me to the local Parkinson's nurse and support worker. Then I'll be able to join the local group.

03-09-15, 23:40
Yes, I am not looking forward to the 'SAD' season either. We will have to find something to occupy ourselves. If I think of anything, I will post you. :)

I think it is a good idea to join a group, even if you decide no to use it, it is there as extra support if you change your mind.

What models did you make 23tana?

04-09-15, 03:11
I used to make model buildings and scenery for railway layouts. Some I sold, some went on our 12' x 9' layout and some on a smaller layout for my grandson. It's very precise, intricate work and I cannot manage now with the tremors. I don't know how to add a picture for here.

I also used to do embroidery. Maybe I could do cross stitch still. That's something to try....

What do you do with your spare time?

04-09-15, 04:48
My GF collects model trains so she would love things like that, 23tana. People obviously thought you were good at it to purchase them. They are very small so I can see how that would be very intricate work.

My GF also does cross stitch. The patterns seem pricey from what she told me (she gets hers off Ebay) but incase it's any help I have got a Douglas Macmillan shop near me and they have craft supplies in like patterns or wool/thread. Maybe a place like that would be a good place to pick up cheap patterns? I know mine has cross stitch pattern books in.

If you have a picture on the web already, use the Insert Image button to add in the address. If not, you can use the Manage Attachments button in Advanced on a post (it's also in your menus near the bottom when in your PM's). When you click on it you can use Browse to find the image file on your PC, select it and press Upload. This stores it in your user account so then you go into it (like when you access PM's) and click on Attachments right at the bottom, now click on the image file which will open it in a browser window so that you can copy the URL address. Now go to where you want to post the image and select Insert Image above where you type messages and paste in that URL. This will show the image in the post.

04-09-15, 10:10
I had to work it out to post one a few months back, it was trial and error.

What has just happened to you, happened to me, they came out as small boxes with no picture. Go into Attachments in your account and check they open properly (if it's blank, hit refresh so it comes up as this can sort it out). As long as they open, they will paste into the Insert Image function. If they don't, upload again as something hasn't worked. Sometimes just re-pasting into Insert Image works too. The images need to stay in Attachments whilst you want them on the forum though so if you delete them, they won't show anymore.

04-09-15, 10:18
Done! Anyone who can guide me to do something like that on the computer deserves an OBE (Order of the Best Expert) :D

04-09-15, 10:50
It's not showing in the post. When you paste in the URL into Insert Image, did you delete out the HTTP:/ that comes up in the box? (your URL would contain one of it's own)

It is a bit fiddly. I had to try it a couple of times to get it to work but after that it was fine.

04-09-15, 11:09
hhmmm scroll up. Both pics are showing to me.

04-09-15, 12:47
They show as 3 little boxes to me. I've had that trying to insert images off Google before. Someone else had that problem when they posted them as only she could see them. If you reinsert the images it should sort them out. If not opening & refreshing the attachment in your account can sort it.

04-09-15, 16:51
I am getting really excited 23tana, but I can't see them either. :unsure:

I have started knitting, but use to sketch and play guitar and piano.
I also repair old jewellery, mainly brooches.
I used to do flowercraft and when we had the pub, I was cooking most days.

I have always wanted to make one those quilts; like the one Dolly Parton sings about. :D
Your hobby must have given you a lot of pleasure. :)

04-09-15, 23:20
This is keeping you busy 23tana.
It still has not worked. :ohmy:
I had trouble too with attaching photos.
Have you tried a 'Cut and Paste' or 'Copy and Paste'?
I got there in the end, but I think it ended up with a link to the photo, I can't remember now. I will try and remember for you. :)

---------- Post added at 23:20 ---------- Previous post was at 23:05 ----------

Ok. I went in to the 'Advanced Mode' of posting.
Then I browsed in my 'Picture Files' on my computer.
Saved it. Clicked on it and 'Hey Presto'. It worked.
Don't know if this is the correct way, but it worked for me. :)

05-09-15, 05:12
Can you open the picture from Attachments? It should open there and you will have a URL in your browser bar. Then with Insert Image you just paste that URL but delete the part that automatically showed up when you clicked on Insert Image which will be HTTP:/

You may need to delete them and upload again add something hasn't worked. In Attachments it tells you if the upload is complete. I found that could be very slow and said pending for ages so did it again.

05-09-15, 08:35
I have no idea what you are all talking about as I'm a complete Dinosaur but I'm looking forward to seeing the pics!:D

05-09-15, 12:34
I've deleted them all for now. Will have another go later.

Pulisa - you and me both lol.

05-09-15, 13:13
Bring back to the quill pen:D

06-09-15, 06:51
No, that one comes up with the box. I checked the code in the image and 5 others on the forum (including mine & Carnation's) and we all have a HTTP address but yours is HTTPS which is a secure connection so thats probably why it won't show. It's inserted correctly according to the code. I wish I had thought of that before you deleted the others as it might have shown something up.

Could you post it like you did last time and I;'ll have a look at the code to see if there is anything that looks wrong?

Sorry to hear about your anxiety and physical symptoms, it must be all very overwhelming. If you can get into a support group at least you would have some others going through these frustrations that you could gte advice off on top of on here.

Give the nurse a nudge, this happens with the NHS with them being so busy all the time. It's not what we want to do but it's sadly an extra frustration we often have.

For general advice, if the NHS are not being very helpful, would it be worth contacting one of the charities that deal with this? Maybe they have some information or just someone to talk to who can give you some recommendations?

Do you need a walking aid? This is probably distressing but have they made an assessment of your needs at home with things like this so you are safe? Things like handles for the shower? (I'm guessing they have to do this if your symptoms could cause you to fall)

06-09-15, 13:11
Terry I give up. :shrug: If anyone wants to see a picture, pm me your email and I'll send them to you.

I've spoken to the Parkinson's nurse 3 times. She keeps saying she's chasing it but obviously she can't run very fast. :winks:

I've had a home assessment . Unfortunately my flat is built from stud work so won't support handrails or a stairlift. So I'm going to have to move on top of everything else. :weep: I only go out with someone, so I can take their arm rather than having to use a walking aid yet.

I have emailed the local support group, but not heard back from them. Seems this is the silent disease lol.

06-09-15, 19:29
Hi 23tana.

My Dad did not have any walking aids; just me! :D
But, he did have a shopping trolley for extra support, which I highly recommend.
Something like a 'Sholley Trolley', which are really chic and practical and some of them come with brakes. They are recommended by the NHS for their sturdiness, but they are quite expensive, but you can get second-hand ones on ebay. It's just an idea.

Handrails are essential for your safety, especially for stairs and my Dad had someone come round to assess the house for what was needed.
You also get appointed a physiotherapist; weekly for half an hour.
(This I think was a waste of time, but it keeps you in the loophole and they can arrange anything that you may need). They are normally very pleasant people and very accommodating.
My Dad was 83 and could still walk; it was the balance that was the problem.

Do you find that you have a very sweet tooth now?
Apparently this is one of the effects of Parkinsons.
And how is your sleeping?

P.s. You must have been screaming with trying to get those photos uploaded. At least it gave you something to focus on for a while. :)

07-09-15, 00:43
Hi Carnation.

A shopping trolley is a good idea, just for extra support. Much less obvious than a walking frame.

My flat walls won't take handrails or a stairlift so I am going to have to move. Not a thought I relish.

I have always had a sweet tooth. I'm not sure if that's changed any, but my sleep pattern is hopeless - sleep 3 hours up 2, sleep 3 hours up 2. I don't feel rested by morning at all.

I stopped trying with the photos as I was getting angry and depressed with them. Keeping depression at bay is my main priority right now. If I go down it will be very hard to pick up.

Still no word from anyone.

07-09-15, 06:37
23tana, do what you need to look after yourself, thats what is the most important, we can always see the photo's the other way. It's not problem.

It's a real shame you are having to move on top of all this, what a massive pain in the backside on top of the rest!

I had an elderly neighbour who had this and he ended up living on the bottom floor of the house, as many elderly people do, but he was still walking around even in his eighties until the end. He had a trolley that he could put things on and move around the house with so he had balance but could deal with his meals too. He had it for some years before he got to that and was still going out and down the pub on foot for years before, just more slowly but he was old.

Is there no way to fix a board or something solid behind the wall that anchors to the main wall beyond, just for the rails?

Is the sleep issue due to this or is it the anxiety? I can sympathise with you on this one as I've been through issues with insomnia and it's very unpleasant. Thesedays I wake up every couple of hours but because my anxiety is more settled I have learned to roll over and fall straight back asleep again but I still don't feel rested most days. I think I need a better mattress though as I slept better at my GF's house a couple of weeks ago and she has one of those memory foam ones.

I hope these people get back to you soon, I bet you feel like everything is up in the air at the moment?


07-09-15, 08:22
Hi Terry

I've had issues with insomnia for years. It's worse at the moment. I'm trying to stay positive and rest as I can. I'm playing relaxation tapes and rejecting negative thoughts with prayer.

I feel like I've been forgotten, despite all my reminders to the health workers. I'm trying to put together my own exercise programme and diet. If it does no more than reduce my anxiety, then that is good. Every time I shake I have been panicking, so I am working on acceptance too.

07-09-15, 08:58
I'm so sorry that you have been treated so poorly by a support system which obviously needs a kick up the backside. You don't need the frustration of waiting for responses on top of the obvious worry regarding your diagnosis.

If you have the energy it may be worthwhile ringing them every day for a week until you get an appropriate response? You shouldn't have to do this but if you are persistent they may feel they have to act to stop the phone calls? xx

07-09-15, 10:41
Yes, acceptance must take on a whole new role with something like this. I would imagine that fighting against it would just make anxiety a lot worse. Perhaps thats where talking to others comes in like on here.

Staying positive is hard with these disorders let alone all of this too. It's easy when your mood is good but it is a real challenge when the negative thoughts come or mood drops. I think we sometimes have to accept that and be kind to ourselves for the day and gently pull ourselves out of it sometimes.

I'm not surprised you feel forgotten. I think we are very used to being numbers in an often uncaring system when it comes to common mental health problems like anxiety/depression but with something like this I would have thought they would have been spot on and this is really sad to see.

In a funny sort of way having to put exercise & diet together yourself might at least be a distraction from anxiety. I find getting stuck into something for hours does that for me when I feel anxious but I guess if the subject could be triggering, it's a very different story.

The body makes us sleep when it really needs it but it can be very frustrating trying to maintain a normal sleep schedule. I hope this restores itself as you find some of the stress decline as that really can't helping right now.

07-09-15, 12:11
I just spoke to the radiologist who does the scans. The scanner is broken. They have no idea how many weeks it will take to fix.

I've been told to go back to my Consultant to refer for the scan at another hospital.

Can I cry now?

07-09-15, 21:00
Of course you can cry 23tana. I do it all the time. :)

Ok. It's annoying, but now you know the reason. They haven't just forgotten about you. Another Hospital? It could be better for you in the long run if the other Hospital have equipment that works.
I think joining a group will be essential for you and should be done sooner rather than later. It will help you with a lot of issues and a problem shared is a problem halved.

Putting together your own exercise and diet programme is a brilliant idea.
Like Terry says, you have to do what ever it takes to look after yourself.

I don't sleep either. I seem to wake up after two hours. Then after another 4 hours.
I think it is the Anxiety. Terry is right again. We need to try and just roll over and try to get back to sleep, rather than get up and wander around the house/flat.
I have tried this when I have felt stronger enough to do it and it does make a difference. I tired constantly and with the depression on top, it makes it impossible to find that mojo. :unsure:

Keep strong 23tana. :hugs:

13-09-15, 21:21
Well I took the first step and have joined a singing group (to keep my vocal chords strong) and a movement group. I'll start both next week. I have someone to come to the singing group with me but I'll have to go alone to the other. Being agoraphobic going to them is a big step for me and my anxiety is increasing daily. I know I'll get to the singing one with my friend. I'm going to have to somehow overcome my fears to get to the movement one.

Still no word on the scan and no new appointment with the consultant. I've been doing everything I can think of to distract myself and stop the depression creeping in. I feel tired all the time but I can't just let myself retire to bed all day.

13-09-15, 22:01
Brilliant 23tana. Listen, don't stress about the one you have to go to alone. If it comes to the crunch and you are not ready to try on your own, at least you will have the other one to go to with your friend. It is good that you are challenging yourself though. I try to do this, because you need to keep positive and active.

I can't believe you have not heard anything.
Maybe it is like a boiling kettle. If you don't watch it and leave the room, it comes to the boil, so maybe concentrating on the other things in your life will make the kettle boil quicker?

I think you are doing really well 23tana. You are going to be ok. :hugs:

13-09-15, 22:34
Just been reading these posts.
Sending you hugs and energy 23tana xxx

14-09-15, 02:19
Thank you Carnation and sial72. Positivity and hugs much appreciated.

14-09-15, 05:41
Those groups sound good. Like Carnation says, even getting to one will help and they will help with the anxiety/depression too, albeit with some extra initial anxiety just going to them but after a few sessions you could feel much more positive about them.

If you can only do the one with your friend, it's a start and after a few sessions you may even feel strong enough to try the other one on your own.

It's all good progress no matter which you do. Good luck. :hugs:

14-09-15, 08:49
Maybe going to one or both of these groups will help you feel less on your own and more supported? Just waiting for appointments/scans must be so depressing and demoralising and now at least you are doing something positive to help yourself.

I really hope the NHS gets its act together really soon. You must feel very let down and rightfully so.

17-09-15, 18:34
How are you 23tana? Have you heard anything yet? :hugs:

17-09-15, 20:46
Nothing yet. I'm trying hard not to get depressed. The Parkinson's support person is coming to see me next week.

I've been to the singing group, which was scary. Fortunately we started with breathing exercises so I got my feelings of panic under control. It's movement class tomorrow. I'm more nervous about that, so I hope I get through it ok.

Thanks for asking

17-09-15, 23:30
I am pleased you went to the singing class, I think that will be good for you. :)
Good luck with the movement class.

Before the support person comes next week, make sure you have a list to refer to for any questions you want to ask. Make the most of the visit while you have them there.x

18-09-15, 08:33
Good luck for the movement class-anticipating the first class will be the worst bit and I do hope you feel comfortable there and that it brings you much needed support. Am pleased to hear that you have finally got someone coming round to your house too-as Carnation says, just make the most of the person's visit and make her earn her salary!:D(Don't know why I'm assuming it will be a woman?)

18-09-15, 13:16
Well I got lost on the way which didn't help with my anxiety, but I made it to the movement class. It was hard work and quite upsetting as it brought on the tremors. I managed not to go into a full panic attack, which I was pleased with myself about.

I got quite a lot of advice from the other members as to what to ask the support worker - enrollment with a speech therapist being a priority.

So now I'm going to take a nap and hope my heart stops pounding.

18-09-15, 21:16
Well done you, for making it there. :yesyes: :):hugs:

18-09-15, 21:35
Well done from me too!

21-09-15, 15:11
Saw my GP today and I spoke to the consultants secretary. They have no idea when the scanner will be fixed. I've to ring back next week. Doc still can't start my meds.

This is really getting me down. The anxiety makes the symptoms worse and now I feel on the edge of depression. It's a daily battle against my body and my mind.

21-09-15, 15:34
I thought they were going to send you somewhere else? :shrug:
Next week? Oh, this is getting ridiculous.
Look, the positive is they obviously do not think this is urgent.
But, the negative is the frustration and waiting and being mucked about.

I know it's hard but you must keep yourself busy with things so the time passes quicker.
My Father had Anxiety and Parkinsons and that is exactly why he had loads of jobs lined up to keep is mind away from worrying and Anxiousness.
You are alive today and will be tomorrow and next week and next month and so on, so live and make plans. Don't let the depression win, you have support on here, you have your classes that you have just joined and join that support class as well.
Try to get as many people around you as possible, it helps sooo much.
And never be afraid to ask for help.
Sending you hugs 23tana. :hugs::hugs::hugs:

21-09-15, 22:36
Thank you for the wise words and hugs, Carnation.

I've heard from someone else who had similar problems with our health authority. I guess they can't help the scanner breaking down, but there were so many promises of support when I was diagnosed that have not come to fruition.

I'm planning on going to Wales for a few days in October to see my mum on her birthday. I may extend the stay. And I'll keep up with the classes. I just wish I could control the anxiety as I know it's pointless.

Thanks again for the reply.

24-09-15, 11:04
I finally have a date for my scan. They have a cancellation on 1st October, so of course I said yes! Seems constant pestering paid off!

I am anxious about it though. The whole process takes 4 hours, with 25 minutes having the machine go round your head. I hope I can hold still.

24-09-15, 11:38
That's just 7 days to go! I know the whole process sounds very daunting and lengthy but I'm sure you will be offered some "help" should you need it particularly for those 25 mins.. Am really pleased that you have got a cancellation-you so badly need to have more information on your condition in order to move forward xx

24-09-15, 16:36
That's great news 23tana. Not about having something around your head for 25 minutes, but great that you now have some progress and not too long to wait. :)

As you know I will be away on Holiday, but I will look in from time to time. :hugs:

24-09-15, 17:21
Thank you pulisa and Carnation.

Hope you have a great holiday Carnation x

28-09-15, 13:05
Getting panicky about the scan now. Only 2 more days to go. I'm allowed to take my meds as normal before I go, so will take a Diazepam. I'm really feeling anxious about the machine being around my head. I hope it's not noisy like an MRI scan. Has anyone had a DaT scan?

Tremors are worse due to the anxiety and I've a constant feeling of panic. Tips for calming down please anyone.

28-09-15, 17:11
Hi 23tana
I had a head scan 6 months ago but don't know if it the same one, the one I did was not noisy.
Tips for calming down:
1. Check "Eft for anxiety" or "eft for panic" on youtube.
2. Watch Claire Weekes interviews on Youtube, she is amazing and for some reaso (despite her clothes and the way she speaks lol) she always manages to calm.me down.
Best of luck, sending you hugs and energy xx

30-09-15, 10:16
Last day before the scan. I'm permanently anxious and having panic attacks. I hope I can get through this!

30-09-15, 11:58
I will be thinking of you tomorrow. The worst bit is always the build-up as you know only too well. Get the scan over and done with and you'll be onto the next stage and will have gained more knowledge into managing your condition. Distraction will be nigh on impossible today-just hope the day passes as quickly as possible and then you're dealing with tomorrow and progress xx

30-09-15, 12:01
Agreed, the build up is the worst. Before you know it, it will be over. It's ok to be nervous about it. This is something you've been waiting for for a long time, it will be good to get it done finally. Thinking of you :hugs:

01-10-15, 16:44
Just back from the scan. It wasn't too bad. Now to wait for results.

01-10-15, 18:56
Glad it's over and you got through it!!

01-10-15, 20:15
Very relieved you got through it-you must feel exhausted?xx

01-10-15, 21:21
Hi 23tana. I am still away on my hols, but thought I would just take a peek at your thread. I am glad you got through your scan day ok.
Keep strong and positive and thinking of you. :hugs:

05-10-15, 14:08
Results tomorrow. Panic attacks today. Distraction isn't working so I guess I'll just have to ride it through until tomorrow.

The scan was nowhere near as scary as I thought it would be and fairly quiet - no ear muffs needed. I shut my eyes and the 25 mins seemed to go by quickly.

I know it's natural to be anxious about the results, but I really could do without it as I have questions to ask and want to appear rational not a quivering wreck. lol

05-10-15, 14:30
I'm sure you'll go well prepared with your list of questions written down for when your mind goes blank...if it does.

Thinking of you and good luck xx

05-10-15, 22:14
Good Luck for tomorrow 23tana. x :hugs:

06-10-15, 14:22
Good news. It's not Parkinson's Disease. It's Parkinsonism caused by the tablets I'm on. That's symptoms that mimic Parkinson's.

Stopping the tablets or changing them should allow all the symptoms to clear up. That could take up to 2 years or might only be months, they can't say. At least it's not going to get worse.

I'm so relieved and totally exhausted. I can't say thank you enough for your support. Thanks :D

09-10-15, 00:04
:yesyes: That's brilliant news! I am soooo pleased for you. :)
And, you won't have to move now. Fantastic 23tana. :hugs:

09-10-15, 08:44
Have only just spotted this but so pleased for you!! I can't believe that this wasn't suspected before and you have been through all this trauma........

You must feel so relieved but I'm sure you'll be feeling angry somewhere down the line? To think that tablets can cause such symptoms.....

12-08-16, 21:24

The amount of support I have had on this site has really helped me over the last year.

And in all honestly, I think it helps people with HA to be able to focus on supporting others on the site including with a diagnosis.

I want you to know that although I don't know a lot about Parkinson's I am here for you and, and completely get you when you said you couldn't even type the subject line.

The research into the condition has come on leaps and bounds, and no its not what anyone wants to hear but I know that you can get through this and still live your life to the best of your ability. As anxiety sufferers we make this difficult for ourselves, but in some ways this will be able to help you appreciate the important things in life rather than focusing on every little thing that could go wrong. Essentially your fear has become true, but rather than let that consume you you can embrace it and turn a negative into a positive as they say.

Easy said than done I know.

But the NMP community are always here :).

12-08-16, 22:11
The OP hasn't got Parkinson's? Another cause was found fortunately.

17-10-17, 19:57
What tablets were you on???