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...
Getting the shakes under control was a priority for me. I have chronic pain from multiple car wrecks so the tremors caused the pain to go off the charts.
Your husband has to decide for himself at what point he is willing to put up with the inconvenience of the Parkinson shuffle and other symptoms. That is the point where his puts a hold on the increase of medications.
Some people are able to get their symptoms totally under control and no one would even know they have Parkinson.
It is good that he can still work. He may want to increase the meds enough so he does not shuffle, which may cause him to fall.
I use a lot of humor to address the questions and stares. He could tell them he is practicing a new dance. I use a walker for short distances, so I tell people I left my roller blades at home. If I use my motorized wheelchair, I tell people I only have a Learner's Permit so watch out. It seems to break the tension. So many people get nervous around someone who is having challenges and feel uncomfortable, not knowing what to say or how to act.
It is good that you can do the "Medical Talk". I have been the medical person in my family. I was the Caregiver, now the roles have changed and my husband has no idea how to understand my medical challenges. Very difficult.
My only advice is to check out the long term side effects of any medication that they want to put him on.
Best wishes-RJ
I've had PD for a very long time: 36+ years. In the last 15 years I've been on many different meds, plus I've had DBS for both sides of my body to help REDUCE any dependency on the meds, thus avoiding any possible long term side effects. After these many long years, I have thrown away the usage of all meds but Carbidopa / Levodopa (generic Sinemet).
What I will tell you, and this is my personal opinion based on personal usage with dire results,, get your husband OFF of requip, the sooner the better. Requip and its companion agonist, Mirapex, are by far the worst in side effects and your husband will lose control of all things requiring mental acuity!
Then, get a new doctor.. Preferably a Movement Disorder Specialist (MDS) who will prescribe a titration schedule of Sinemet for him This is a very slow ramping up doseage until his symptoms are under control, as time goes on, the dose will be tweaked to maintain his functionality.
You will read from misinformed PWP that C/L stops working after five years. That is a fallacy! I have been taking it for 15 years now with no side effects. I have friends who have been taking it for 25 or more years with no side effects! Carbidopa / Levodopa (Sinemet) has long been considered the "Gold Standard" in treating the many symptoms of PD!
IMHO: the side effects of Sinemet are much less serious than those presented by either of the agonists I've mentioned, Requip and Mirapex.
Do your homework on the agonists and not only will your husband benefit, but you will also in the long run. If I am an example, then your husband will have a "long run" also!
My prayers are with you both! Jim
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Meanwhile we have moved up to a dosage of 3 mg, three times a day (9 mg. daily) but still not seeing much improvement over 6 mg. I told him we can step back down any time but he is game to continue on so we may continue to step up until 12 mg. and then see how its going. He's never fallen but often has minor stumbles when turning or starting. This summer we rebuilt a back deck and spent many days walking across 2 in wide joists suspended between 3 and 10 feet in the air. He got a lot of satisfaction out of it but oh, I was holding my breath the whole time!
Then take that to local PT office and see if they can help him with those exercises and some core strengthening. Maybe he would not need to go to the local PT if you are able to help him with the home program. Just some thoughts.
Wishing you and your Hubie well. -RJ