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By lovemymum On 2009.08.24 06:57
Hi all,
My mum has recently been diagnosed with Parkinsons and I am full of mixed emotions about it. Mainly because I've known for quite some time that something was wrong, but just didn't know how to tell her. When I finally did tell her what I'd noticed she went to the doctor and was fobbed off many times by doctors putting her on more and more medications, but nothing helped. I even went to mum's usual doctor and asked her to take a look at mum because I was concerned it was parkinsons. Now 18 months later they finally referred her to a specialist and he said straight away yes parkinsons.
Now I'm relieved that they found something so that they can start treatment, but I'm devastated for my mum.
My mum's mum was diagnosed with PD about 6 yrs ago and has had a fairly sharp decline. So I'm also concerned that it''s one of those rare genetic PD.
The specialist has put her on medication and it's made a big difference, but I'm worried that the medication wont work forever and shes still quite young.
Anyhow look forward to discussing things with you.
Regards,
Love my mum.

By annwood On 2009.08.24 15:05
Welcome to our group. I hope that you will stay with us and let us help in anyway we can. Do not let some of our posts frighten you. Many are in the very late stages of PD but have had many good years before this happened. We also have some patients on our forum that can give you answers from the patient's viewpoint.

My advice to you is to enjoy your mum during this time. The medicine is working, which is a good thing, and she may have many, many good years ahead. Every PD case is different so just because your grandmother had a rapid decline doesn't mean your mum will. The genetic component is yet to be proven in this disease. My father's identical twin had PD but he didn't. There is a lot of research going on in PD and treatments seem to be improving so hang in there.

Try not to worry so much - there may be time for that later but not now. What happens will happen and you won't be able to control that so try to let go. I would tell you to read up on PD - knowledge is power.

By lovemymum On 2009.08.27 21:47
Thank you Annwod for your encouraging post.
I know I shouldnt worry so much. There are some days the medication seems to have almost completely got rid of the symptoms, but other days she has gone almost back to where she was before the diagnosis.
I wonder what the benefits are of holding off taking the medication until things are really bad?
I'm wondering if PD can cause personality changes? It's just that mum has made quite a few strange decisions lately. I.e. becoming obsessed with her footy team above all else. Including putting off my sister's first visit with her new baby. They were going to come over from interstate and my mum said no she wanted to go to the footy.
My son's birthday was last month and I invited them around for tea to celebrate and she said no because she wanted to watch her footy team play on tv!!
Nothing has been said to the specialist about this, but wonder if these sort of things could be anything to do with the PD diagnosis.
Any opinions or advice would be greatly appreciated.
Thanks,
lovemymum.

By susger8 On 2009.08.28 08:44
The symptoms of PD definitely change from day to day. It's part of the challenge....sigh.

Over the years there have been theories on holding off on meds until later in the disease, but I think that has been found not to have a benefit. Your mother's doctor is probably the best judge of how to handle that.

Yes, PD can and often does cause personality changes. And obsessive behavior is fairly common -- it can partly be the disease and partly the medications. Mirapex and Requip are particularly known for contributing to obsessive behavior.

Some people get into gambling, porn, compulsive shopping and the like. Your family should keep an eye on the charge accounts and the checkbook, no joke!

By lovemymum On 2009.08.30 09:56
thanks susger8
It's all very new for us all.
I think we will just have to wait and see how things go. It's still very early since the diagnosis.
Maybe we will wait until her next appt and see what the doc says her response has been to the meds.
thanks again.
Cheers,
love my mum.
:)

By Kalispell Kathy On 2009.09.04 09:05
I suggest getting Dr Ahlskog's "The Parkinson's Disease Treatment Book". It is written simply and answered so many questions I had or hadn't even thought of yet. You can get it through ebay or interlibrary loan. You need all the information you can get in order to handle this disease, because it gets complicated and you need to be the expert, since the medical profession, by and large, isn't very knowledgeable in this area. I'm an RN, and I certainly wasn't until my husband got his diagnosis. Hang in there.


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