I am finally posting after being a guest on this site for nearly three months. My mum was diagnosed late April with Parkinson's. On a visit to the GP he suspected she had Parkinson's and referred us to a neurologist. Upon returning home that night and doing my research I knew mum did have Parkinson's.
This was confirmed with two visits to neurologists in Sydney (we live in Oz).
She is on Madopar and so begins another struggle in her life (Breast Cancer is the other current one, tumours in her eye, broken wrists, knee replacements a few of the other "minor" ones). As my dad has passed on and I am an only child (married with two kids inc. a newborn) the onus is on me to make sure she lives as comfortably as possible.
This site is filled with so many amazing people and was the first site to offer me as least some hope. So many people who've had PD for 10+ years and going relatively strong (and Matt, wow!).
Given the fact that when I log in there are 50+ times more guests than members there must be so many more stories to be told.
I'll be seeing you all around the traps
Kind regards to all!
Welcome to the forum. I too am a carer - to my husband, but you probably already know that. You are obviously well informed as to what we are about on here and how glad I feel to know you came after being a guest for so long.
Your Mother is clearly lucky to have you. So many problems to cope with and admirably by the sound of it. I hope to see you around
Hi Rico, you're very welcome.
I'm Ray, 61 years old from Hull, UK. I was diagnosed at the age of 50, but with hindsight can see symptoms going back to the age of 20 (1970). I'm currently on a mixture of Azilect, Stalevo, Sinemet, Gabapentin and Madopar, plus Citalopram anti-depressants. I can't take any drugs from the Dopamine Agonist group, as they cause me severe side effects of an Obsessive/Compulsive Disorders nature.
Are you Oz born and bred, or an emigrant from the UK, or elsewhere?
As you know there are hundreds of folk on here all with different tales to tell, and all willing and able to provide an ear to listen and a shoulder to cry on. They'll be more than happy to share their experiences and give advice and opinions. Many of us have sleeping problems, so more often than not this means there'll be someone in here 24 hours a day.
As well as all the medical stuff we have the Social Club. This has games, puzzles and quizzes, and the Cafe, Night Sett and pub are used to chat about anything at all, from recipes and knitting to pets and football, from Marxist theory to Shakespeare's use of iambic pentameter. There are also several poetry threads. And if something's not covered which you think should be, just open up a new thread for it!
It's great to have another Oz to keep us up-to-date on things down under, both PD related and general chat (it's always good to be told what the weather's like there!). We currently get most of our Antipodean info from Tootsie, who's in NZ. And of course we could do with a cricket reporter down there.....
Well I hope to chat again soon; might be a good idea to remind us of the time of day/night there when you log in, otherwise we'll forget, and wonder why you're having breakfast while we're watching the late night news!
Thank you JC and Ray!!
JC: It seems I know you very well. I have read your posts with interest as I am in a similar boat to you. Always informative!
Ray: You are one of the 10+ years brigade I refer to, With all those problems you truly inspire.
How long have you taken Stalevo, Sinemet and Madopar for? I seem to remember you taking about 1000mg of levodopa with these three drugs?
I was born South of Sydney to (northern) Italian parents. Raised in Italy and Australia and have dual citizenship. My wife was born in Bromley, Kent.
I have much need for advice, I'll get that started on other threads :) Time difference in OZ is 9 Hours ahead of UK, 8 hours ahead of Italy.
Please don't mention the weather, cold and windy here, both exacerbating mum's condition - the cold making her very slow and the wind contributing to her hyper-anxious mood (another Parkinsonian trait from what I read), though I must admit that if my fence blew down due to 70mph winds I would be anxious too.
Thank you once again for the warm welcome.
During the later stages of my dopamine agonist (Cabergoline, which I stopped nearly 4 years ago), Sinemet CR was added to see me through the night.
Then the Cabergoline was replaced with Sinemet Plus for the daytime, still with Sinemet CR at night. Also Azilect each morning. After about a year they added Entacapone, to be taken with the Sinemet Plus - this was supposed to help break the L-Dopa in the Sinemet Plus down more effectively, thus helping it get across the blood-brain barrier more easily.
A year later they replaced both the Sinemet Plus AND the Entacapone with Stalevo, which is simply a single tablet combining them both. This makes life easier, and ensures you take them both at the same time. I took 5 Stalevo per day. After 6 months they changed this to 7 times a day, but smaller doses, in order to spread it ou more evenly. They also increased my Sinemet CR dose at night.
About a year after that they added Madopar Dispersible 50mg to be taken whenever I wanted, max 4 times a day, for a quick-acting boost at times of stress, etc. If I use all 4 doses my total daily L-Dopa intake is 1400mg. (See my post dated 30 June 2011.
Good to see you have got the meds down-pat. From what I believe I have read previously, this was your PD Nurse who made these changes?
Mum been on meds for 6 weeks, still no change to her absent (left) arm swing. Bombarded both neuros with Parkinson's Plus queries. Asymmetric symptoms and relatively good results on physical examination (eg eye tests) give me hope they are right with their diagnosis of straight PD (who would have thought I would have said that?).
Thanks again! and a belated happy birthday for last week!
Yes, that's right. The PD nurse isn't able to prescribe, so she just makes recommendations to my GP, who duly does what he's told - like most men!
Have a good afternoon.
Thank you Rico
Informative eh? I am happy you think so. Someone (who must not be named) once lightheartedly described me as a chatterbox. I have been mildly paranoid since
JC, I won't tell you what somebody (or many people) once thought of me (maybe they still do
Like your Mum I got PD and breast cancer all at once; a debilitating mixture! I got through the cancer OK and feel much better now off the medication.
i note you're downunder. I don't know if your Mum is interested in complementary medicine but there is a pioneering naturopath, himself a PD sufferer in Victoria (Geelong I think). You might be interested in looking him up; John Coleman; he has a website called Return to Stillness.
I've found his advice most helpful in managing my own PD although I've only had his book to go on. He offers consultations i believe but you may of course be a very long way from VIctoria!
Glad to hear you are going well now after fighting BC!
Tell me about the problems fighting both diseases. I am willing to carry a cross (or 10) instead of mum!
I am interested in anything and everything which may help in the fight. Have signed up for John Coleman's newsletter. IIRC the emodules cost $50 per month so I may well go for them. Otherwise he is 100km north of Melbourne and we are 70 km south of Sin City (and there are 1000 miles between the two biggest cities in OZ).
Best wishes to you!
Hello Rico and a warm welcome to the forum. it's so nice to hear that you are prepared to support your mother, believe me when I say that she will probably need it. I was diagnosed at aged 50, I am now 61, I did continue to work as a full time social worker for my first 7 years. i retired early when I realized that I needed more support and assistance than some of my clients....sad innit!!!
Like Ray I am unable to take DA's as I had ocd problems with them, so I take Stalevo also, plus a few other little tabbies of course.
The best bit of advice I could give you regarding your mother is for you all to take each day as it comes, PD can be so changeable and people have different experiences and symptoms.
I look forward to seeing you around and I am pleased that you have gotten off the fence and finally joined us.....for the rest of you still sitting on that fence...come on...we don't bite. Unless we are on DA's of course.
Thank you for the welcome!
Hope the Stalevo has treated and is still treating you well!
Prepared to support mum, yes, but very very scared to tell you the truth.
Thank you for your advice! I'm all ears and with 11 years experience I sam sure you have a heap of advice.
Hi Rico and welcome, everyone here is really friendly and you can share your experiences and questions. I'm sure your mum is very grateful for your support.
This site sure is helpful. It's good to listen to real PD stories from real people ... and what better place. A couple of similar US sites are good but they do concentrate on possible future cures a lot (this is good too but my struggle is on the here and now).
Anyone prepared to bet that it's the chemo used to treat breast cancer that brings on the Parkinson's? It happened with my mum.
Anyway, get your mum a bone scan if she hasn't already, you can take daily and weekly pills for osteophorosis but you don't want to ignore it.
My mum was roughly the same age as yours when she got it 10 years ago.
They will probably have done a bone scan when looking at the cancer as bone secondaries are common. Your mum will have been cleared of that.
I had breast cancer and PD in the same year but PD symptoms predated cancer treatment. Having said that the fatigue which i attributed to PD stopped when I came off the tamoxifen cancer meds)