Not dealing with this very well


#1

I was diagnosed in August and thought I was on top of things but today drunk a bottle of red wine and now moved onto glenfidich! Fedup with feeling like crap not helped with medication that doesnt help. Got a neuro appointment on saturday so hopefully will get some symptom relief ftom that. Somebody please tell me me that there is light at the end of of the tunnel cos quite frankly this is shyte. Sorry for the negativity...


#2

What are your symptoms and medication at the mo?


#3

Main symptom is muscle rigidity but its in my neck which is a total nightmare, but have loads of other problems, left arm is nexr to useless, insomnia, i walk like i have been on an all day bender, restless legs, i could go on.... I just need to man up derermined to not let this thing beat me. Currently on rasagaline 1mg which is uselesss


#4

I get you.  I was dx June 2011 following shoulder surgery.  I was 49, a good career ahead of me. Truth is, I couldn’t do it as I used to.

my initial prescription was selegiline (similar to what you’re taking) after a year I was struggling to walk.  Then I entered the world of sinemet plus.  My movement was restored and I had, have my life back. The only adjustment has been to introduce a slow release tablet (simenet cr) overnight.  I too am affected left side.... and....yes, good old insomnia.  Don’t panic, we do survive.  If I can be of any help, don’t hesitate


#5

Hi Wildrover,

Sorry to hear that you're struggling right now. Please remember that you can call the helpline on 0808 800 0303. Even if you just fancy a chat we are here for you.

Best wishes,

Tom

 

 

 


#6

Thanks Tom, I had a bit of a mini meltdown yesterday, much better today though. Learning already what alot of people talk about having good and bad days


#7

Firstly for Parkies beer is better than wine and spirits as it raises uric acid level. A hoppy ale is probably best of all. Also it does help if you drink with friends rather than alone. Secondly have you tried Mannitol? It doesn't help everyone but it may benefit those newly diagnosed best. It certainly helped me a lot and there are a growing number of people over on health unlocked who are reporting benefits. What exercise are you doing - this is absolutely key. If you can get an exercise bike and watch something whilst exercising this can help. 

Check out my profile for the rest of what I do and my symptoms. I haven't been diagnosed yet, though all my symptoms appear to match those of parkinson's and if it looks and quacks like a duck.... 

P.S. Does anyone else wake up in the middle of the night with a damp pillow that you have been drooling all over? I feel like a bloody St Bernard. 


#8

Yes, good and bad days, and lots of restless nights (check out the time of this post...).

I think it’s OK to have a release once in a while and OK to have a day feeling sorry for yourself.  PD takes time to adjust to,  Have you found a local group? That could be helpful...


#9

Hello Wildrover (great name!).  I am 7 years post dx and have been on amantadine, miropex and caradopa-levodopa for most of that time.  I presented with a signifcant tremor in my right hand and a minor one in my right leg.  I was prescribed amantadine and miropex and within 2 days my symptoms were almost gone and were totally absent within a week.  Later the L-dopa was added as a precaution.  When you find the right medication (I was lucky), life becomes near to being normal.  I have detailed my journey in my blog www.wpgchap.blogspot.ca   I am not selling or advertising anything.  It is just sort of a catharsis which I understand has been beneficial to PwP.  Try it out, you might like it.  In the meantime medication, positive thoughts, exercise and good nutrition should hide your symptoms and may actually slow down the progess of PD.  Stay away from expensive supplements.  They are of no use as they relate to the progress of the "disease".  Good luck.


#10

Wildrover,

Hope you feeling better , dont be tough on yourself as diagnosis is more than just a health issue its employment worries, financial and more ( sorry was supposed to be cheering you up)!

You may find the additional stress makes your symptons worse.  Anxiety and stress makes us tense , that includes muscle groups.  I am just getting over a blip, it happens but wildrover there are good times ahead, take  it slow, adapt when necessary .  

Things tend to settle down as you get your head round it,  there are many good years ahead, its just another battle , you've  been in them before and you are still here.  PD is no different select your unit, get some trustworthy comrades and get back on the pd battle field .  

Of course you are entitled to some R & R ,  there   is lots of light with  the occasional dark day ahead.

Good luck and take care.

 

 

 


#11

Hi wildrover,

hope today has been better for you and that you are getting the support you need.

my husband has parkies, not me, but he doesn’t do much internetting and I can only speak from our experience over past 9 years. 

Parkys brings good and bad days or hours, we know stress and anxiety has the biggest effect on him and can block the action of his meds. But we don’t let parkys stop us doing stuff tho sometimes it makes things trickier. Last year we found the European Parkinson’s therapy centre in Italy, we haven’t anywhere like it in the uk tho some areas have first steps programme for newly diagnosed and that contains some aspects of Italy’s work. It was enlightening, empowering and hard work but it did improve his symptoms and we went back recently for a top up/kick up the backside to do the exercises!

diagnosis is a shock and it takes time and Italy’s therapy is informative and positive, oh so positive, ran by a lovely guy with parkies. 

Check them out and go if you possibly can,  I wish we had found it years ago! 

There are are few postings on here from folk that have been.

stay strong, stay positive, keep active.

all the best x


#12

Hello to all on forum,my name is George, it's my 1st time posting i was finally diagnosed in august with pd but had symptoms for years i also have fybromyalgia which is a nightmare alone been so depressed lately and blood pressure has been high amongst every thing else, feel like a moaner sometimes.Thanks George


#13

Hi George

PD on top of fibromyalgia. That's a tough one. Feel free to moan here, it helps lift the load a bit and someone usually replies. we're all in the same boat. I was diagnosed 2016. It takes quite a while to accept. There's loads of useful information on this site. Just pick&choose what you need. The freephone helpline is good too.

I seem to have had to make lots of small adjustments, and then some more. Some days are better than others but the key seems to be to keep as active as reasonably possible. I found it helped to get out and about a bit too. Even though I'm fortunate in that I live with my husband, I still found just a word or two with someone outside the home made a difference to my mood.

D


#14

Good  Morning D

Thanks for your reply, i do try get out but  fibro cripples me some days .I am on ropinirole for my pd but i think its raising my bp how are you with pd?.

George


#15

Sorry to hear you’re having a tough time George. I don’t have parkys, my husband does and my mum and brother in law did have it. They were all different. There is a programme in parts of the uk called first steps to help newly diagnosed people. It’s only in a few places, oxford has it but it’s defnitely worth seeing if it’s near you. The first steps programme is part of the protocol used by the European Parkinson’s therapy centre in Italy which focuses on 4 pillars of Parkinson’s - medication, lifestyle, exercise and psychology. It’s a very very good place to go to if you can. It’s educating and empowering and made a big difference to us both. Families are encouraged to get involved. There are some videos on their Facebook page that might help you now. Stay strong, for us Parkinson’s gets in the way sometimes but mostly it doesn’t stop us, we have to find a way around the problems and go for it anyway! Over 9 years we have learned the avoid stress, talk and exercise exercise exercise!  Colour your life x

hope that helps


#16

Hi George

I have right side hand, arm & leg tremor. Sometimes more than others. Stress exacerbates it. I also have a few other symptoms that I didn't initially realise were PD. (anxiety at times, constipation, fatigue...)

After a while I realised that knowing the cause of these other symptoms made it easier to deal with in that I stopped looking for the cause of them - if you know what I mean. I have slowed down a bit but some of that could be because I'm 64!

I take sinemet, which works ok for me. I have found it's really important mentally as well as physically to do some exercise and get out and about a bit - when you can. I realise you have added problems but it does make a difference. On bad days ease off, on good days do a bit more - but not so much it wrecks you for the next day! Bit of a balancing act.

D


#17

Hi Daffy,

Hope your well ,sorry only just getting back ,i have same right side i have been busy last few days been sorting out getting bungalow stairs in house becoming nightmare had 2 near misses with falling yesterday leg did not want to move.

George

 

 

 


#18

Hi George

My mistake. I should have said it's my left side that's affected. It must be even more difficult when it's the right.

Sorry to hear about the near falls. There seems to be a lot of readjustments to make when living with PD.

Hope you can get bungalow sorted soon.

Daffy