Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
Hi all,
I have a question, some advice and or dicussion would be highly appreciated!
One of my best friends has a nurological movement disorder. Her nurologist can't narrow it down...I think this has something to do with the type of testing isn't around or accurate or something...
Either way, they think she has either Dystonia or early onset of parkinsons, personally I don't think it's early on set I think it's full blown.
She is 26 years old.. she's had trouble ever since she was a teenager she said but in the last 6 or so years it has been worsening i've seen a huge change in the last year I've known her.
They have her on medication for Parkinsons which is helping her alot.. but now I think she's either getting use to or something as traits are starting to show again..if she doesn't have the medication she can barely function.
Some of her symptoms are;
* EXTREMELY dry skin,
* Her muscles clench up, they're so tight she can't straighten her fingers or her toes and her bones in her toes have sort of re-set she has permenate bumps on the joint areas, her calves are extremely cleched and tight too.
*She can't stand still, if she stand up straight she ends up falling over just standing still, this becomes an issue say when she cuts up vegtables some one else ends up doing it.. she'll stumble every time she cuts because it chucks her balance off so badly.
* she can't sit still either she does the same thing,
* she cant hold her fingers or arms our straight she shakes them uncontrolably, there's no way she can bring over a drink or cup of tea it ends up everywhere.
*she clenches her teeth,
* she can't walk very well, one of her feet sieze up badly and it drags along, and she walks oddly sort of like it's a real effort and I suppose it is for her with her body so tensed.
So while her medication is helping her, if she doesn't take it she can't function and it's evident if she misses 1 of her 3 pills daily you notice it!! But I am noticing her medication wearing off I suppose, it use to almost fix this stuff up completely, now it is putting her back to mediocre even she is noticing it...she goes back in January to the nuero so I am sure they'll re-assess her.
Firstly does anyone have either of this conditions and if so do her symptoms ring a bell?
Secondly, her clenching causing her so much pain, besides hot baths and heat do you have any idea of things to help her pain? Or even things she should avoid? The doctors told her alcohol would help her body relax...but any do's or don'ts to help with pain? I'd really like to be able to help her...I feel so sorry for her :( Her and her fiance soon to be husband next year are going to be trying for children almost straight away...purely for the fact she's getting worse so quickly.. she's worried she'll end up on a wheelchair..and really if she keeps going she probably will =/
Any tips or experiences, help advice, anything would be so appreciated...I'd just like to be able to help, make things easier for her.
Sorry for the LONG post,
thanks in advance for any help!
I have a question, some advice and or dicussion would be highly appreciated!
One of my best friends has a nurological movement disorder. Her nurologist can't narrow it down...I think this has something to do with the type of testing isn't around or accurate or something...
Either way, they think she has either Dystonia or early onset of parkinsons, personally I don't think it's early on set I think it's full blown.
She is 26 years old.. she's had trouble ever since she was a teenager she said but in the last 6 or so years it has been worsening i've seen a huge change in the last year I've known her.
They have her on medication for Parkinsons which is helping her alot.. but now I think she's either getting use to or something as traits are starting to show again..if she doesn't have the medication she can barely function.
Some of her symptoms are;
* EXTREMELY dry skin,
* Her muscles clench up, they're so tight she can't straighten her fingers or her toes and her bones in her toes have sort of re-set she has permenate bumps on the joint areas, her calves are extremely cleched and tight too.
*She can't stand still, if she stand up straight she ends up falling over just standing still, this becomes an issue say when she cuts up vegtables some one else ends up doing it.. she'll stumble every time she cuts because it chucks her balance off so badly.
* she can't sit still either she does the same thing,
* she cant hold her fingers or arms our straight she shakes them uncontrolably, there's no way she can bring over a drink or cup of tea it ends up everywhere.
*she clenches her teeth,
* she can't walk very well, one of her feet sieze up badly and it drags along, and she walks oddly sort of like it's a real effort and I suppose it is for her with her body so tensed.
So while her medication is helping her, if she doesn't take it she can't function and it's evident if she misses 1 of her 3 pills daily you notice it!! But I am noticing her medication wearing off I suppose, it use to almost fix this stuff up completely, now it is putting her back to mediocre even she is noticing it...she goes back in January to the nuero so I am sure they'll re-assess her.
Firstly does anyone have either of this conditions and if so do her symptoms ring a bell?
Secondly, her clenching causing her so much pain, besides hot baths and heat do you have any idea of things to help her pain? Or even things she should avoid? The doctors told her alcohol would help her body relax...but any do's or don'ts to help with pain? I'd really like to be able to help her...I feel so sorry for her :( Her and her fiance soon to be husband next year are going to be trying for children almost straight away...purely for the fact she's getting worse so quickly.. she's worried she'll end up on a wheelchair..and really if she keeps going she probably will =/
Any tips or experiences, help advice, anything would be so appreciated...I'd just like to be able to help, make things easier for her.
Sorry for the LONG post,
thanks in advance for any help!
You may already know that no two people with Parkinson's suffer exactly the same way, that is if she definately has it, and many of the symptoms may be common in other illnessess too. I hassen to add we all differ in the way we react to various meds.
To be honest I can only urge you to get a proffessional opinion....
I wish you well..
Yours Sincerely Dirk !!;O))xx
xx
As Tate mentioned the Neurologist at Monash Clayton first suspected I had Dystonia from my symptons, Myoclonic Dystonia to be accurate, as a trial I was put on a medication called Levodopa/Carbodopa to contol the tremors which I later found out was medication used for Parkinsons. The medication worked so well that he is now considering Early Onset or Juvenile Parkinson's. I must be a mystery because I have been a case study where a room of Neurologists analysed me. I haven't seen the Neurologist for roughly 6months but continue taking medication and I have started a journal as I previously wasn't paying that much attention to my symptons. I believe the reason I haven't been given a diagnosis because they want to be 100% sure. I would love to hear about other peoples experiences with this condition and how they deal with it, I would like to go to my next appointment full of knowledge and there might be things I'm missing which could help with a diagnosis. Thank you
P.S Sorry about the long post too
I have found I cannot be passive and leave it to the drs. because this disease is such an individualist disease. I have to make a list of my symptoms. And guess what - in my PD the symptoms come and go. Anything you want to know you will be able to find it on Daily Strength, NPF and all the other sites.
I know that with your being 26 years old you will not want to read all this stuff about illness but it is for your best interest. 26 is not too young for Parkinson's - MJ Fox was 30.
My first neuro told me I could either live with Parkinson or die with Parkinson. Being informed about PD is definitely living with PD.
It helps to use a neuro or movement disorder specialist who specializes in PD. Not all do.
I was dx'd when I was 47 (55 now). I went right on Carb/Leva (sinemet) so I could continue to work. I take the meds every hour at this point. There are higher doses available, as well as extra long lasting versions.
I know of a person who showed symptoms when he was 17. He's in his 40's now. He's had DBS (Deep Brain Stimulation) surgery, and it really helped.
There are a lot of options out there, and, since this disease is progressive, you will have adjust your meds periodically.
My neuro basically lets me self medicate. This makes it nice for me. It sounds like your friend needs the meds more often. Maybe 4 per day. In time it will change again, if she does have PD.
Your observations will help the doc, so go with your friend if you can.
Your friend is lucky to have such a good friend.
All the best,
Fred
Lollly is who I am speaking about, I got her to join up I thought it was be of benefit to her :)
What you've written is interesting and when I see her in a couple of hours I will tell her and get her to read it.
Thank you all again! Its hard being informed about a disease the people around you know nothing about. Thats why this website was a god send when I was diagnosed with Endometriosis!