New to forum


#1

I was diagnosed with Tremor Predominant Parkinson's in March 2012, aged 55, after developing a tremor in my left hand  several months prior to the diagnosis. For some time before that I had experienced vivid dreams and nightmares but had not initially made the connection with Parkinson's. Since 2012 the tremor has extended down my left side and also up into my face. Movement, balance and coordination remains relatively good. I take 1mg Rasagiline and 4mg Rapinirol each day but have been told that little can be done for the tremor as far as medication is concerned. 

I have been married for over thirty years and family are very suportive and understanding as are my friends, work collegues and employer. Following diagnosis I have found it difficult to cope with some elements of life and found that I have lost a lot of my self confidence and self esteem

At the moment I am working full time but finding it more and more difficult, not just the physical aspects but also keeping motivated, focused and concentrated. I would like to finish work but deciding on the best time and the best way to do that is the question and hopefully can gain some advice on the forum regarding that subject.

 


#2

Hi Flyem, welcome

There is a thread on this very subject, er, somewhere. But it bears repeating.

I think this is a big dilemma, and i face it too. On the one hand, I want to retain my identity as a "worker", not a "PwP". On the other hand, i have lots to do outside of work and I don't want to stay in work till I drop (perhaps literally) and not be able to do them. On the one hand i want to go when i'm good and ready, on the other i might tarry too long. On the one hand I want to continue earning a salary, on the other hand um, actually, the same. One the one hand I don't want Parky to get me,  on the other I don't want to decline in my job to the pointthat people want to get rid of me.

Decisions, decisions

Best of luck with yours

Semele


#3

hi, this is the first time i have posted on this forum, i am a 46 year old staff nurse and i was diagnosed in march 2014. the first symptoms appeared 3or 4 years ago when i had stiffness and lack of power in my right hand, progressively a tremor became more marked in my right hand and leg. over this time i kept going back to the gp who investigated me for thyroid ,diabetes etc until my optician again referred me back to my gp for deteriorating eyesigh when it was noticed that i had one sided arm swing.one gp said i was one of his 'anxiety patients' then i was referred to the neurologist locally. After consultation i was referred to the specialist and had a DAT scan last October but had to wait until March for the diagnosis. i am a recently divorced lady who has two teenage sons and thought it was due to the stress but obviously the symptoms continue. initially i was working up to 46 hours per week but have had to reduce my hours. currently i am off sick due to the effects of a fall and ongoing hip pain. Iapplied for the PIP in April and am  still awaiting a response. initially i was commenced on sinemet 125mg 3 times per day but this has been changed to controlled release 4 times a day but has the side effect of vivid dreams. i would be grateful to hear from anyone with similar stories or if i can be of help


#4

Hello Hawkeye

Welcome to the forum

Unfortunately pip claims  are taking quite a while to process at the moment  my claim for pip was started in September 2013 i had to wait till March 2014 for a assessment  and was awarded pip after the assessment 

I am was diagnosed last August at 47 yrs old  after going back and forth to gp with various problems tremor, stiff and aching  when getting up from bed and from the chair , painful shoulder , i started on Azilect which did not do much for me so i then started on Sinemet but they gave me terrible nausea so i came off them and started Madopar which i now take 125mg   5 times a day  , i used to take the Azilect late on a evening but i did find that i suffered from some very vivid  and on the odd occassion distrerssing dreams , my pd nurse suggested moving the Azilect to early morning which stopped most of the dreams i do have the odd one now and again  but not to often


#5

Hi I am new to the Forum.  I was diagnosed 5 years  ago after intermitant tremor in right leg, loss of power in right side and stiffness. I take Azilect and prolonged release mirapexin.  I retired last year as I was so slow and felt pretty useless.  Three months ago I started physio with a fantastic therapist. She has helped with nutrition, my mental state and building my core strength. At my last specialist visit he commented that the improvement had been remarkable.  I still have some tremor, I am still slow and my waterworks turn on at the sight of a toilet but I am more in control of my body and thats good for my soul.


#6

Hello Juju,

could you share a little more about your work with physio therapist - sounds rather good?

What did he get you doing?

Also interested in the Galileo machine - I think I have seen them in John Lewis or Selfridges - this is when I wish I could win the lottery and have a room with Galileo and a treadmill!!

I hope you enjoy and get help from this forum.

 

Best wishes

Aberwells


#7

Hello Flyem

me dx Oct 23 2012, age now 68.

to retire or to stay working...  just a couple of thoughts - from my own experience I find the slightest stress brings on the judder in left hand.  Proof of how fragile the body and mind is.  I too have lost a lot of confidence.

I'm in different position to you in that I am retired but I am choosing to get rid of anything I dont need at home - clearing the decks and cupboards to enable me to really live as I choose and really to try to care for self.  Motivation is sometimes hard to come by - but I do try to do as much exercise as possible and do try to meditate and spend time with those important to me.

Working full time you won't be able to do this so much.  I feel that if financially one can step out of the work environment then there could be so many pluses - ime for self, time for exercise, time for physxiotherapy, time o enjoy walk amongst automn leavs.

Have just noted that your post was on 8th October - maybe you are closer to making your decisions?!

 

Go well and carefully

 

A


#8

Hi Aberwells,

The Galileo is manufactured by Novotec GmbH and Vikki my therapst is a distributer.  She uses the Galileo for proffessionals.  She tailors the programmes for each individual and responds to how we are feeling at the time.  She mixes yoga,pilates and deep tissue massage.  She explains the purpose of each movement and I am much more in tune with my body now.

This isn't a cure but it builds strength and power, helping with balance and your state of mind.

The home machines are  expensive and I would love to have one but as I don't do the lottery its just a dream.  Their is no substitute for someone who genuinly wants to help  and is good at what she does, so in finding someone like Vikki I count myself lucky.  Everyone living with PD should have access to this type f therapy.

Best wishes

JUJU


#9
I'm new to all this ...I have been dx with tremor predominantly ..no other symptoms ..will I get ful blown symptoms in time ..I'm so confused

#10

Hi hazewell,

like you I'm new to this and have been diagnosed only recently. I'm finding things a bit confusing but I'm trying to keep a positive attitude and not let things get to me. The medication Sinemet is making me feel tired but I'll keep at it for a while longer before I see my gp. I keep telling myself I may have PD but PD hasn't got me 


#11
Hi Hazewell and windy1949, As most people will tell you on the forum, it's hard to say who will get what symptoms and when. I find we all have similar symptoms but not at the same time. Concentrate on today and cope with that and not what might be. Some other threads on forum give good tips on trying to keep symptoms at bay. It's not always easy but all on here want to help.

#12

I totally agree with Divine R.  I try to live in the moment and concentrate on staying the best i can be to help me deal with the symptoms.  Eating healthily and trying to keep joints moving helps me, just taking control and dealing positively with my body.  I have bad days but sharing my fears with others who understand makes the difference.  


#13

Thanks JUJU and DevineR

Thanks for your replies, no doubt I will be looking for others thoughts regarding things that come up in the future and it's good to know I'm not on my own.

once I get past the initial emotions things I hope will be a lot clearer. Stay positive.