Brand new - doing ok


#1

Hey all, just a quick introduction, had the dx two weeks ago now and am doing okay. Am 34 and a single mum to a three year old, although with a good relationship with my ex who has been supportive. I work full time shifts which I am finding increasingly difficult, although strangely, sleeping after a night shift is easier than at night time.  I have a resting tremor in my left hand which is worse when I am tired or emotional and seems to go crazy in the first couple of hours after exercise. At the moment I am not on medication, I am seeing my GP next week to discuss what may be suitable, any advice and information on side effects will be appreciated.  I have always hated taking medication and I am notoriously rubbish at remembering to take it.  

I have spent some time reading a lot of your earlier post on here and it has given me a lot of reassurance and "ah, yeah, so that why.." moments.  I hadn't attributed the pain across my shoulder blades to PD before and also some ..toilet trouble issues!!

Reading every ones posts has made me attempt - easier said than done - to keep positive and like many storys I have read I find the most difficult aspects of PD the sleep and dealing with the reactions of friends and family.  My work and colleagues have been exceptional and for this I am very greatful.

Hi to you all and I hope this finds you all on a good day.

 


#2

                      Welcome to the forum Wiggy, my wife who has PD uses her mobile phone alarms to remind her to take her meds

                             Billywhizz


#3

Of course you will do what your doctor says but I can tell you my experience with medication.  The first neuro I saw said I should delay taking medication but the tremor in my hand was bothersome so I went to a second neuro who put me on the dopamine agonist, mirapex (pramiprexol) and the anti-viral, amantadine (seems to help surpress the tremor for reasons unknown).  Mirapex,  like all agonists, can have very serious side effects that your doctor will be aware of and will monitor a patient if he or she is diligent.  Fortunately, I suffered no side effects and like magic, almost overnight, the tremor disappeared.  Since then a third neuro (movement disorder specialist) added has Teva-Levodopa-Carbidopa and as long as I take my meds, I lead a relatively normal existence 4 years post diagnosis.

The thing to keep in mind is there is life after diagnosis and while we would all rather not have the condition, we have learned to live with it and I for one, am optimistic of a cure in the not too distant future.

Stay positive and exercise.  It is not as bad as it seems.


#4

hi 

i was diagnosed sept last year . i work shifts too , find the nights easier than the days . just have to make sure i schedule a relaxing day in to recover from them . with medication i feel back to my usual self ,just have to be careful i dont over do things 


#5

Hi Wiggy,

Welcome to the forum, and I'm glad you're doing ok. There are lots of helpful people here.

I'm also 34, and was diagnosed last year after about a couple of years of some movement issues and a tremor in my right hand and arm. I realise that I'm quite lucky, in that it doesn't greatly affect what I do from day to day at the moment. I've been taking rasagiline (Azilect) since September - no improvements or side effects for me for that one, but that drug is used (as I understand) as it may solve the progression of PD. I've just started on a dopamine agonist (Requip XL), but a bit too early to know how thats working for me at the moment.

I believe what wpgchap says too - Stay positive and exercise!

T


#6

Hi everyone and thank you so much for your replies.  Helps a lot to know that there are others having normal lives. I think my biggest fears are being able to look after my little boy in the future, he turns the grand old age of three next week.

Kittens3 - I am glad there are other shift workers out there too. I seem to suffer less effects after sleeping between nights than I do trying to get to sleep at night time when on days.

wpgchap - thanks for sharing your experiences, there seems to be so many different medications for different things that it all is a little overwhelming at the minute. I shall put Google to good use when on nights - work is overrated anyway!

Does anyone recommend any particular exercises that help.  I have invested in a Wii Fit which tells me that my left hand side is "wobbly".

 

Thanks for reading.

 


#7

I mostly walk.  I am from Canada and I walk pretty much every day, even at -40C, about 8000 to 10,000 steps per day.  Right now I am in Florida for a couple of weeks and manage about 17,000 - 20,000 a day.  I keep a blog of my passage with the condition since diagnosis.  I have put the address on the forum in the past but I don't want to wear out my welcome.  I have had 31,000 page views so somebody is reading it.  If you want the address, let me know.  I have been told some people find it helps them.  The Wii Fit is great.  I have one but I gave up on it because I needed to be outside.  If you can keep at the Wii Fit, that would be pretty much all you need.  The more you use it, the better.  I am convinced that exercise is beneficial.  Also, keep stress to a minimum if possible.


#8

hi my physio said balance games on wii fit are good but any exercise you enjoy as youre more likely to keep it up.