New to forum


#1
Hello!

A few weeks ago my father was diagnosed with parkinsons. Since Christmas he has developed a resting tremor in his left hand, and also a 'no no' shake of the head sometimes..

Since diagnosed a connection can also be made to the anxiety and depression he has been suffering from for a few years. And maybe his slurred speech..

He has started taking 1 mg of azilect, but nothing else at the moment.
He seems to be mentally much better recently but the resting tremor still remains.

Hope to become an active member of the forum community!

words of advice, words on how his parkinsons may progress, or similar stories would be much appreciated - get in touch!

#2
Hello and a very warm welcome to the forum Imagine. I'm sorry to hear of your fathers recent diagnosis. The 1mg of Azilec that he is on at the moment is a relatively small amount, but the very fact that you can see some positive effects is a good sign. PD is a very individual condition and on that basis what works for one patient may not for another. With this in mind the usual next step would be for the neuro to gradually increase the meds until they reach the optimum which stops the presenting symptoms. The individuality of the condition also means that the conditions progression varies also. So it's very hard for anybody, even your fathers neuro to predict the future in terms of this.

For what it's worth, Ive was dx 11 years ago when I was 50 and at 61 I am still able to have a reasonable quality of life. One thing I would like to advise is, when your father is prescribed new meds or if his dosages are altered in any way, please monitor his behaviors. If you see any change in personality/character, habits ect inform the neuro or PD nurse. If you have any questions at all, there are many experienced people on the forum who will offer advice and support. Good luck.

regards
Glenchass

#3
Thanks :)

Theres a lot of questions i have but due do the individuality of Parkinsons are proberly unable to be answered!

My dads 60 and still working, wondering how long he'll be able to carry on working?

in 5-10 years time will he be able to climb stairs in his house?

What are the chances of me developing Parkinsons?

#4
Hi when you or a loved one is dxn with pd ,theres a moutain of questions that just cannot be answered ,your dad may not get any worse than he is now & maybe he"ll still be climbing the stairs in 10 years time, im 62 dxn at 57 , no meds have ever stopped my tremor but im still able to climb the stairs allbeit slowly , get yourself a book theres a wide choice out there,, itll answer many questions you have , and many of the good people on here can help,live life for today and enjoy, theres many meds out there to help your dad if needs be ,good luck ,parkypete

#5
hello imagine & welcome
there ,is no realistic answer to how long people will be able to keep working, whether they have pd or not. I would think that your father would be the best judge of this
.As to stairs,, I have found stair rails vey helpful. And I have heard good reports of stair lifts.
Please, talk to your father & ask him what help he thinks he needs
With my best wishes

#6
At.yhe moment my dad can do everything.. as once he uses his hand the tremor stops. its only when at rest. hes not keen on chattin about it yet.. thanks for the advice.. will continue to live in the present! :-)

#7
Greetings Imagine. A lot will depend on what sort of work your father does. My job involved operating machinery. I decided to try for an enhanced, ill-health early retirement pension, which was granted and I stopped work at 62. I would urge your dad to continue working for as long as he is willing and able.

#8
Hi Imagine,

Welcome to the forum, am new here, too. Have found posting to be of great help emotionally as well as with specific questions. Best wishes to you and your Dad, Lin2

#9
hi im bert iv had p.d.for 2yrs.6months finding it very hard

#10
hello bert & a very warm welcome,
I was finally dx 2 1/2 years ago and I was quite breezy about it. At first. For me the reality of needing help, of not being so independant has only recently struck home.
You will find much support & humour from members of this forum, & I have no doubt that you have much to give
My very best wishes to you bert

#11
Hi folks, just new to the forum and am glad to share my problems with someone. I was diagnosed with PD last january and commenced on a low dose of mirapexin,0.26mg twice a day. these tablets are prolonged release . Saw the consultant physician yesterday and told him i was feeling great. He informed me that he expected me to be downhill now and it really took the wind from my sales. He has ordered a DAT scan . I wonder how long i will have to wait for that on the NHS. Can it be done privately in northern ireland? i dont think so, anybody http://www.parkinsons.org.uk/pdsforum/newpost.aspx?forum=meet-and-greet&topic=new-to-for-4#know?http:Hopsticks//www.parkinsons.org.uk/pdsforum/newpost.aspx?forum=meet-and-greet&topic=new-to-for-4#

#12
Some consultants deserve to be properly poorly for a wee while and feel the fear.
keep talking.

#13
hiya imagine welcome to the forum,im ali bin dx 11 years in november im 42,there lot of surport on the forum and good friends to make ,x:smile:

#14
Hello Bert. I'm 62, diagnosed 5 years ago and with some help from medication, manage to do all the things I want to. I took early retirement at 58. Have got accustomed to my PD. It helps enormously if family and friends are kind and understanding. After all anyone can become ill any time. Good wishes.

Imagine, welcome to the Forum.

#15
Hopsticks, sorry skipped your post. I am speechless at the consultants words. Doesnt sound at all experienced. Hope someone from N Ireland can respond re possibility of private scan.

#16
Hi Hopsticks, I'm a newbie as well, but I've had PD since 2003. My symptoms began with a tremor in my leg, so my neuro thought that it wasn't Parkinsons, 6 months later I got a tremor in my hand. He still didn't think I had PD but I saw his registrar one day and she insisted that I had PD, so from then on I've been on Madopar and Pramipexole most of the time. In time, the tremor was controlled by the medication, which I thought would never happen. He sent me for a DAT scan which shows the chemical levels in the brain, which showed that it must be PD. I didn't wait long for the scan but if you were wanting a scan privately I would imagine you would certainly get it done quicker. I'm getting a MRI scan done this week and a dat scan next week. If you find that you are not happy with your doctor, you're able to change to another, by going to your GP and ask for a referral to someone else, or if you have a Parkinson's nurse you can talk about anything you're not happy with - my PDNS has been very helpful to me.

#17
Hello there to you good people out there in Parky Land.
I am 60, never had an illness and then since May this year (2011)have developed a hand tremor, leg tremor, feelings of anxiety and being physically unstable on my feet. My thought patterns are erratic and I find it harder to make simple decisions.I also have night frightmares and restless legs along with stiffness in my shoulders and other muscle groups.
This has disrupted my ability to work, with the obvious financial implications.
The man in a white coat has given me Mirapexin 0.088mg and Clonazepam (500 microgrammes).
I requested a low dose to start the regime.
I have not taken any of these yet as I want to hold off on the prescription meds. The logic to this is that once I start taking
these, I understand the withdrawal symptoms make it difficult to stop using them.
My questions are:
1/ Will these meds get rid of this unsteady on my feet sensation?
2/ Has any contributor on this site stopped taking these meds after lengthy use and if so what are the withdrawal symptoms.
3/ After stopping meds does the PD return worse than before?
4/ Is it the case that taking these tablets helps slow the progress of this disease?
5/ Is my condition likely to get worse quickly or is there a likelihood that it will remain stable for years.
I have been surprised by the speed at which the condition has come upon me over the last five months.
I thank all those whom have contributed to this forum which I find both informative and encouraging.
Repondez s'il vous plait.
Arsene

#18
Hi Hopsticks & Arsene
I'm a newbie here too (new to the forum but about 6 years since Dx)

I'm no expert on the disease but I recognise all the questions you ask. I asked those & more when I was diagnosed. Others on the forum may able to answer your questions in detail.

I don't there is any therapy proven to slow the progress of the underlying condition. I understand your enthusiasm to keep dosage low where possible. As I understand it the meds don't cause the condition to advance either. Attitude to meds is a very personal thing and I'd suggest you discuss it with your neuro or PD nurse.

I hope you find the forum a helpful place full of supportive & inspirational people.

Elegant Fowl

#19
Hello Bert too (sorry I skipped over your 'hello' post)

EF

#20
hi
my wife has just been told she has pd, and obviously it is a bit of a shock, we are both at the top end of our 70's, and at the moment i am coping but am finding the prognosis scary. she is taking madopar 50mg/12.5mg, which is not agreeing with her, but i understand that this is normal at the. reading the forum the symptoms she has are all listed, except she doesn't have any tremors.falls, shuffling, speech impediment, drooling, moods, occasional incontinence, and a lack of concentration. looking back i recognise some of the symptoms as far as three years ago.I am on a crash course of trying to find out as much as i can, and if there is any thing can do to relieve/mitigate the situation.
pq308