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Topic Escallation of PD symptoms - need advice Go to previous topic Go to next topic Go to higher level

By dkleinert On 2010.07.20 01:27
I have truly missed this forum. My computer contracted a bad virus, and I have not been able to use the internet for over a month...not even sure that I will be able to stay online long enough to send this. A lot of damage was done to my operating system, and so my entire computer will be replaced in a week or so.....until then..

I need all of your input and advice for my PD husband.

My husband who has known he had PD since Dec. 2004, has had his ups and downs with symptoms. But last Dec he had knee replacement surgery, and the subsequent rehab and physical therapy saw him in the late winter and early spring, feeling better than he had in years. During the recovery period after his knee surgery his PT (she has had both of her knees replaced and has done Triathelons) insisted that he go to the chiropractor 3 times a week on the opposite days when she came 2 times a week. Joe seemed to thrive on this regimine - we were all encouraged. Then he began having hip pain that made him stop all of the PT and Chiropractor. 4 weeks ago his orthopedic surgeon at Duke did a nerve block and a cortisone injection for the deterioated disk that was causing the hip and sciatica pain - that stopped the hip pain, but other troubling PD symptoms had started to appear by that same time.

Around the same time, we began seeing a new neurologist, and he did LOTS of blood tests and determined that Joe needed Testosterone and Pregnanalone and that Joe should stop his Mirapex because he didn't think it was helping him. So that has left Joe only taking Carbidopa/Levadopa 4 times a day plus his blood pressure meds and Abilify.

Now 6 weeks into the Testosterone, 2 weeks into Pregnanalone and 4 weeks without Mirapex, his list of symptoms he wrote down today are:

Hands (both) trembling uncontrollably
Insides shaky all the time
Drooling increased
Dizzy when he walks
Feeling unbalanced when he walks
Urinary urgency
Penis shrunken so that he cannot grab onto it to pee and so he wets his pants (this was a problem when he was on the narcotics after the knee surgery, but it went away).
Hands cramping all the time
Not able to sleep much
Nose running a lot

He is so discouraged and worried......I am also.

Will be calling the new neurologist in the morning to see if he can work us in ASAP, and also will be calling PT to meet with us to discuss possible new game plan.

Can any of you see anything that jumps out at you that could be causing this sudden exacerbation of PD symptoms? Could the Mirapex have been masking all of these symptoms? He was on Mirapex for 4 1/2 years.

I would really like any and all input. Have you had these same things happen? What should I do for my husband? Which way to turn?

I don't know what I would do without all of you.....hope this post makes it to the web and to all of you.....Love to all of you from Donna in NC.

By daisy On 2010.07.20 03:52
Hi Donna,

So sorry to hear of your husbands most recent problems. I stress that I am NOT medically trained in any way, but I would hazard a guess that your DH is now undermedicated. If he was on Mirapex for four years without many side effects then I would say he probably was getting benefit from them. Quite often I think that a drug is not doing it's job for my DH and it's only when I take it away and the symptoms return that I relaise it was working after all. You didn't mention what strength cardidopa/Ldopa your DH takes, but if it puts things into perpective my DH takes 10 x 110mg per day + + + all the other medications. My advice to you would be to contact your neurologist immediately. Can you see or talk to him soon?

By Emma On 2010.07.20 05:12

It is so discouraging and scary when setbacks happen, I'm sorry that you and your husband are going through this. It must be very stressful.

I really don't know if adding the new drugs and taking away the Mirapex could be causing his symptoms but I would guess that's the case. The timing of the new symptoms certainly seems to suggest it. I'm surprised that the doctor just took the Mirapex away because he thought it wasn't helping anymore. We've been through that with Requip, and more recently with the Sinemet. In both cases our neuro initially just cut back on the dose and had me report back to him in a week to see how it was going. Then he would adjust it again if need be to get to the best dose for my husband.

As far as your list of symptoms, my husband has some of them too. It seems pretty clear to me, although I'm not a doctor, that stopping Mirapex could cause the trembling and feeling shaky inside. My husband had that happen when his Requip was cut back too far. He's also had the shrinking penis thing for several years. His urologist told him that it wasn't really getting smaller but that with age, loss of muscle tone and increased weight it just appears to retract. He sits down to urinate anyway so it doesn't matter and he's gotten used to it.

You really do need to get back with the neurologist ASAP and find out what's going on.

I hope you get your new computer soon, I've missed you!

By Michele On 2010.07.20 08:23
Hi Donna, so sorry to hear of all that your husband has been goiong through. What jumps out at me is taking away his Mirapex. I would call your Neurologist about these syptoms and if you can't get an appointment soon, ask him/her to call you for a consult. I had to do this with our former neurologist often because it was impossible to get an appointment sooner than 3 months. Were you unhappy with your former neurologist? I have found that when my PD husband would see a new doctor, he/she would not change his meds right away, but wait and see for themselves what is going on.
I wish you both well and hope you can work this out soon. It's so hard being a caregiver and watching the one you love go through these tough times.

By susger8 On 2010.07.20 09:05
I agree that it sounds as if he is now under-medicated. Did you taper off the Mirapex, or stop abruptly? Stopping abruptly is NOT a good thing to do and can cause a lot of "rebound" symptoms, similar to what you describe.


By dkleinert On 2010.07.20 11:49
Oh - how much I am thankful for all of you! You are so wonderful for taking the time to write to me this morning. I called the neurologist's office and we have a "work in" appointment at 9:20am on Thursday. I gave Joe his Mirapex dose this morning after reading your replies, and have the timer set for every 4 hours up to the 5 times a day he was taking it until we see the doctor on Thursday. I, too, thought it was too drastic to just stop the Mirapex cold turkey.....glad you have that same experience. These drugs are brain chemicals, and it would seem that one should taper, not stop....again - you are such a great comfort to me. Thank you for being there....again I am hoping this post reaches the website...I am not sure if it will - poor lame computer. :)
Love to all of you, Donna in NC

By susger8 On 2010.07.20 13:44
I'm so glad we could help!

When my dad went off Requip, he was taking 12 tablets a day, and the neurologist told us to decrease by 1 tablet a week.

If your husband's neurologist told him to just stop the Mirapex abruptly, I would honestly advise you to get a new neurologist. Preferably a movement disorder specialist. The MDS I found for my dad was WAY more informed about the PD meds and about the late stages of the disease than his old "garden variety" neurologist.


By hubb On 2010.07.20 16:48
Donna - I too noticed we hadn't heard anything from you for a while, but then my PD spouse is having a downward turn too and I just haven't had time to post. He had been going along fairly well (still just on synamet and no other meds) and last Fri. when our helper was here, she remarked that he'd had a good day, balance good, he had walked outside, exercised for a while - and then wham, on Sat. he was a completely different person - couldn't stand by himself, totally weak, drooling all the time - all the uglies you can think of. Couldn't sleep very long at a time - lots of dyskensias in the legs - Sunday the same thing. Monday a little better, and today is better, but still has such soft voice I can hardly understand him. The past couple of days he has made remarks that are so far out I can't believe he said them - but today now he seems more coherent - and we haven't had any change of meds or any change of any kind. He does get constipated of course & when I add prune juice to his laxatives, that usually does the trick and this time, the calls were so urgent he couldn't make it to bathroom in time and I had noticed the shrinkage of the penis in trying to pee but had no idea it had anything to do with PD but should have figured - these days I can almost assume any change is due to PD - we have our next neuro appt in 2 weeks so I'm keeping a record so I can tell the dr. I do notice that if he's listening to the radio trying to get to sleep, he will have a vivid dream about whatever they are talking about. He told me yesterday morning when he awoke, that they were going to be mad at him because he didn't stop the oil leak - took me a minute to figure out he was talking about the Gulf oil problem which of course he has nothing to do with, and I realized he had heard the news on the radio while still half asleep - at least, we get a laugh ever now & then. Hope adding or subtracting meds will help - that's so hard to figure out unless you do it like you are doing now - adding one thing at a time just to see the reaction - sure wish there was a simple answer, but alas and alack, no such thing in the PD journey.

By karolinakitty On 2010.07.20 18:11
Donna so sorry to hear of your troubles.... Yikes ... I too believe that it is the Mirapex issue. I can't belive the neuro had you just quit it. THere has to be a weaning off period. or a getting started period. WHen i checked out their website they have it listed in the medical part ( the part for physicians and nurses) that it should be gradually reduced before changing or removing patient form the drug. THeir reasoning is "adverse effects" . Talk to your new neuro and ask him why he didn't wean him off this powerful drug. I couldn't find anything about interactions with the the testosterone or the pregnanalone, but would guess knowing the side effects of mirapex, why add the testosterone? I don't mean to be funny but with sexual urges rising with Mirapex and most other PD drugs is he crazy?? You know i'm honest Donna ... please take it as it is .............
even suggesting it without the Mirapex, for someone with PD? You know i'm not medically trained but I would question if it's something he can live without.
I know my one friend who is taking it, it helped with many issues he was having but if you're already down why make it worse. It seemed he was doing so well there after the knee surgery. I do hope things work out on Thursday.....

By sannph On 2010.07.20 21:29
Your post brought to my mind an incident with my husband a few months ago. His symptoms seemed to get worse almost overnight. We discovered that he had a urinary tract infection; it really set him back and it took 2 rounds of antibiotic and about 2 months to get back to where he was before. His dr called in a lab order; we didn't need an office visit. When they had results they called in a prescription. Hope things are looking up for you soon!

By LOHENGR1N On 2010.07.21 00:05
Donna, The biggie is as all have said the withdrawal of the medication. The tremors internal and external, dizziness hell just about everything he wrote down can be symptoms of drug withdrawal (which we go through when changing med' doesn't have to be an illicit drug to experience withdrawal). The heat and humidity also stresses the heck out of Us, leaving us shaky, exhausted, lightheaded, dizzy, off balance. Hands cramping can be the disease or signs of heat distress or dehydration. All this on the table become ingredients for anxiety, cause everything to ramp up all these symptoms. A vicious circle.

Everyone has given you great thoughts on what the causes may be. Try to calm down both of you, take a deep breath, turn up the A/C, get out a paper list the problems and suggestions and while waiting for the Doctor's appointment, see if you can make sense of some of this. (even if you're stumped at least you're being proactive and doing what you can. It will also help to calm you just the trying to figure it out instead of dwelling on the effects trying to just ride it out till Thursday. We're all pulling for you guys. Take care, best of luck and hang in there. Sincerely Al.

By dkleinert On 2010.07.22 07:12
A million thanks to all of you and Hubb, Sue, Karolinakitty, Sannph and LOHENGRIN. I so needed to read your posts. We go to the neuro in a couple hours. Our PT came over yesterday and she thought the sudden removal of Mirapex was a mistake also. I have read so many of the information sheets on all of these drugs, and they all say to taper.....but he is the doc, so I didn't argue with him - should have! The PT is going to have my DH coming in 4 days a week now, and she is going to strengthen his pelvic floor muscles, core muscles and overall get back on track.....exercise is so important for him. I have a list of questions for the neuro today....will be back in touch - thanks again for being there. Once again - I am seeing 1 character at a time slowly appear on the computer screen - my computer is so sick....hope this makes it to you. Love and Hugs to you my dear friends. Donna in NC

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