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New and I wish to see how this works

#1

Hello. I'm a new account holder. I have been aware of the probable existence of forums, but not been inclined to try to join in. Like the group meetings. I am aware of the existence of my local group. I even made a phone call and spoke with an extremely pleasant lady. But I havnt taken the trouble to go. 

To be honest my symptoms are not intolerable. I'd feel like a cheat if I came across people who are going through really tough times. I don't wish to offend anyone. I think maybe when my symptoms worsen I'll feel better about joining in. I have said enough. I don't know if these comments will draw feedback. It would help.

#2

Hi

welcome 

idea of this is you dip in and out as you want 

it's good place to get information from people who have been there and done it as well as getting a bit of support . It's upto you how much you want to use it . The control is with you 

hope that helps x

 

#3
Hello Edxxxxx, Posting first time can be daunting. Everything about PD can be daunting. Take your time with it. I've jumped into groups too soon(for me) too. I was overwhelmed and took a step back. Depends on your age too. One thing I've noticed is people on this forum and at all the groups will understand how your feeling. Theres no obligation to be anything other than yourself. Take it easy. I'm trying to. DivineR
#4

Hi

 

I can understand what you are saying but maybe not what you mean.  Something made you make those first steps, contacting the group and joining this forum.  Whatever you might need you are entitled to as much as a member further down the line. I can only speak for myself but possibly for many others after diagnosis is the toughest time, coping, some would say going through a grieving process in the sense we are having to make new plans etc.  Further on it may be support advice with meds more physical than emotional issues. At the very least the forum is there if you need it.  It's a bit like owning a car and joining the RAC or AA   best to have it, in case you breakdown or need minor repairs.  

#5

Thanks for the responses.

Not knowing anyone with PD is not really surprising as we are in a minority. I have great chats with the consultant and the PD nurse when I see them. That's once, moving to twice, each per year. My wife couldn't be more supportive. She's my tablet alarm clock and she has a 50/50 say in the allowed med tweaks that I make. I have some discomfort as PD is a moving target. I'm pretty sure there's nothing new wrong with me compared to other PD patients. So it's logical, I think, that members of this forum (and meeting group members) experience my symptoms and discuss them. I'll jump in and ask if needs be, but first I must find time to scroll through previous postings so as not to cover ground already covered.

#6

Don't worry about covering old ground nobody minds,, if you have a question you will either get a response, referred to previous post etc.  At your own pace but there are lots of people on here you will be only too happy to help.  take care and kind regards to both you and your wife x

#7

Good day. Med change or not!

I joined the forum a few weeks ago. This is my first request for feedback.

I've leafed through several posts. I'm beginning to feel lucky with the comparatively minor level of discomfort and 'issues' that I have, compared to many others. 

Like many people I think my PD meds are excellent, but the disease is a moving target. A tweak here, a tweak there and I'm good to go. In fact I saw my specialist two weeks ago and she decided it was time for a change, based on my discomfort. I picked up Gabapentin and Amantadine yesterday and intended to start taking them today. Thank goodness. If I had started to take them yesterday I would have blamed them for one of the worst nights I can recall.

My current meds include Requip XL for the RLS that the other meds caused me to have. I will wean away from these in favour of the new tabs. I described increased discomfort. In particular back and leg stiffness  especially first thing in the morning.

I have been getting no more than 4 or max 5 hours broken sleep. I'm not too bothered by that. It's been like that for 6 years or so. But last night I got zero sleep. Which is not unknown but rare. I had that indescribable ache!!! When I lay down it slowly amplified until I had to stand up, and walk or stretch, to ease the pain.

There are a few ways forward but would like to know what people have actually had or got my problem have to say about the way to go.

Thanks and regards

 

 

 

#8

Hi,

 

Not sure if this helpfull or not but occasionally not sleepy, up all night cannot sleep theres me and my favourite dvd's , a glass of wine some olives and I call it me time.  I have just accepted it happens then sleep and a few naps back to functioning on parky normal rather than trying to achieve pre parky normal, if you understand what I mean.  To me its about adapting rather than looking for medication to counteract parky symptons.  I also am aware some of my non parky mates have restless nights stressful events, anxiety all the things we worry about too. 

Perhaps look at non parky sleep advice as well relaxation ,  let me know how you are 

#9

Hello everybody, I am new to the forum but not new to Parkinsons, I was diagnosed in 2004.  My condition was slowly deteriated, particularly in the last 18 months.  I currently take Stanek (Stalevo), Ropinerole and Madopar.  I have been referred for DBS at Queens Square but there are several stages to pass through before it happens and clearly it is not a quick process.

One assessment is a Neuro-psychology/Cognitive test.  Can anyone shed more light on what is involved? The thought is making me nervous.

My main difficulties are with Dystonia, freezing, stuttering steps sometimes leading to falls.  I also frequently get severe pain in my lower left ribs which has been investigated but with negative result. Caused by PD? I am not sure.

This then is my introduction, not a topic as such so hope I haven't posted in the wrong place. 

 

#10

YesTeeHee, all input is welcome as it's providing inside info, so to speak.

I started taking the additional meds yesterday. Had about 6 hours solid sleep. (Exceptional for me) Not surprising after the night before, or was it the new meds? It's obviously too early to say. I'll be increasing the gabopentin to 2 per day after a week. Maybe review in a fortnight.

i like your 'me' time. I was only reflecting yesterday that to concentrate and / or exercise gently makes the problem less. Maybe I should do something with that time. Alternatively it's a question of climbing in and out bed trying to get to sleep before the symptoms return. 

 

 

#11

Hi Branwell,
By coincidence my appointment for neuropsychological assessment for DBS landed on the doormat this morning. the appointment is approx 5 weeks time at the John Radcliffe Hospital Oxford, (JRH).
I'll tell you the possibly relevant bits of what my letter says. Appointment will last approx 3 to 4 hours, with breaks. I've got to take glasses for reading. I've got to take a friend or relative with me that knows me well because they will want to speak to them too. The appointment will be split in two, 30 to 45 minutes for part one, then part two takes up the remaining time. The tests will include a range of verbal and visual tasks. The discussion part of the appointment will cover different aspects of thinking, mood and behaviour, as well as my education, work background, support network and medical history.


The psychologist will also ask about my expectations for the operation and what difference I expect it will make to my symptoms.
The letter also points out that this assessment is only part of the overall assessment process and completing it does not instantly mean DBS surgery might or might not be coming your way. This is the process at the JRH, others may well be different of course.

A friend of mine had DBS surgery just over a year ago at Queens Square, and he spoke very highly of all aspects of the people and the processes there, he was back working after barely a few weeks!

What we must not lose sight of is the fact that everybody who has PD are all different, lifestyles, symptoms, age, medications, general health, approach and expectations to name but a few of the variations on this huge theme......

Hope this helps.

Best wishes, Tractorman.

 

#12

Edxxxxx  do you do leg stretches ?  my physio taught  me and it has made a difference , less robotic when I first start to walk.   pleased you had reasonable nights sleep and  hope new meds work.  You will have to find a night time  hobby or catch up on a few things this makes a negative into a positive.

All,

Interesting and useful info. on dbs  my tremor has got much worse of late and my martini choice is always dirty but shaken rather than stirred.  

#13

Tractorman, I am very grateful for your reply, that is a lot more info than I have already.  I will update you once I have had my two days to let you know how it went and what was involved. Best wishes for now.

#14

Hi Tractorman, I have now completed my 2 day assessment and it was very intense, I found some of it difficult and some not so, but of course it is a bit nerve racking.  You have listed the tests and I would not differ from that.  I am now awaiting news of an appointment to see if I qualify for the operation.  I have to say the staff at the hospital were excellent and do their best for you.  It is not possible to know whether or not you qualify, as we know there are many factors to be considered.  I remain hopeful, all the best to you and I will keep watch for you in this forum.