Hi Parkies, can any one shred a little light for me please? My husband is the Parky, he's on quite a lot of meds but he is doing ok for past couple of years, most say they wouldn't know he has PD.
His Nuero is brilliant, and promised him he would get him back to 95% himself in 12 months which he did do.
Another Parky that I don't see, but speak on the phone every 6 weeks or so, has left me wondering about meds.
She was dx same time as my OH, and all she gas ever been given is Madopar? And only recently the 6mg patch.
Takes 4 Madopar throughout the day, and a Madopar MR at bedtime, and also puts the patch on at bedtime???? As it did not suit when applied in the morning?????
Her speech is extremely slurred on the phone, she has trouble dressing and undressing, struggles to lift her arms up, can't turn over in bed, her toes crunch under, and all, in all, I don't think she should be suffering like this.
I suggested she gets a 2nd opinion, surely it can't be right that for 4 yrs all she has been given is Madopar and nothing else until recently the patch was added.
I know more meds aren't the answer to everything, but it's better than struggling through each day.
She did have cancer, which she was treated for, so maybe other meds aren't suitable for her??
Any thoughts or advice very welcome xxxx
Written by
allofatremor
To view profiles and participate in discussions please or .
Sounds to me like your friend could use more relief from medication, but that's between her and her Neuro. If she is not happy with her Neuro then I think getting another opinion is a good idea. It's just common sense. There's nothing that any body can do, she will have to make the decision herself.
Thanks Teresa, The thing is I always end up doing the work for everyone, she has asked me to tell my OH Neuro what she is on and get an opinion, but to be quite honest I think if she wants advice from my OH Neuro she should take the contact details and arrange an appointment. I just thought it seemed strange from what I have read about PD that one person should only be on Madopar and nothing else.
Most PWP are on different meds through out the day. Ie, my husband is on 5 different meds plus his patch.
Everybody is different. One medication can work. Carbidopa/levodopa is my mainstay and works for me. The key point is this other person is not doing well, therefore a modification to her meds is in order.
That said, it is completely unreasonable for her to expect you or anyone else to be a go-bewteen for her with a doctor. She has to take it upon herself to consult with a doc if she wants another opinion.
This disease is complicated enough and sometimes you don't always get the time you need in the neuro's office so you need to concentrate on your husband's needs during his appt. You could tell your friend how well you like the neuro and suggest she call ASAP to get an appt. and you believe he could really help her. As far as one med, that does seem a little different. I had breast cancer & was taking Tamoxifen for 5 yrs. for it so I couldn't take Requip during that time so my neuro put me on Sinemet. I like it better than Requip because I had more side effects with Requip.
I am really happy that your husband has a good Neuro, I am very interested as to which medication he has been prescribed. I am in UK and have seen 3 different neurologist and they all say the same, I am on Selegiline, requip and 9 x Madpor a day. It seems useless to me . At moment been off work since December mainly because of tremor. There are obviously different drugs I gather from reading these posts. Any info would be much appreciated.
Just so next time I see my neuro I can go with some more information and challenge him.
For some odd reason my tremors stopped after about 10 years so now I only take one B at night and PRN only occasionally. BUT therapeutically I took one every 4 hours up to 4 a day. After the first week, I was never sleepy at all after taking. Read contraindications on packet first. B may not halt tremors totally in your case, but it may be worth a try for even a couple hours' relief. Only take 1 at a time though.
I agree that she sounds over-medicated. God bless the neuros, but after 15 years battling this disease I can tell you that if I'd taken every med prescribed to me without a fight, I'd be dead by now (or worse). I would get as many opinions as it takes to straighten this out -- and above all, be courteously assertive. Make a chart of your symptoms every 15 minutes of your waking hours for at least a week; that way you'll have something to show the doc -- trust me, they love charts and graphs. And if they can see what's going on eventually you'll find someone to listen and help. Where do you live? Check the parkinson's foundation website and see if you can get to a Center of Excellence to be treated. Good luck.
Sounds under-medicated to me although some focussed physio and an exercise regime might help as well. I assume she is under a movement specialist? I met someone who, 12 years after diagnosis, I would not have known had Parkinsons. He told us that he had recently been to see the neuro, whom he had researched originally as one of the best, and in reply to "How are you?" said "Oh I'm all right considering I've got Parkinsons". The neuro bristled at tis and said he expected to get the patient functioning as near normal as possible. The moral of this tale being that not all medics have as positive an approach as they might have and don't keep up with current wisdom in the management of PD.
My thoughts exactly, my husband puts his specialist high upon a pedestal, he is just so grateful for his concern and devotion in helping him, if only they were all so good xxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lewy body disease
Substantial Effects from Mannitol
Different question
Ugh...
Is there anyone with DBS taking Madopar or Sinemet and then added Azilect?
