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Larry, My thoughts are the same as Charlottes! Try to get your brother to a Movement disorder specialist to revaluate. His PD has rather progressed very rapidly. It does not sound classical PD. Emily ----- Original Message ----- From: "charlotte A mancuso" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, June 28, 2002 3:34 AM Subject: Re: Need more insight on brother in Dallas Texas > Hi, > > Is your brother seeing a Movement Disorder Specialist? When you say PD > Dr., do you mean a general neurologist, or one that specializes in PD? > > Because given the information you have provided, some things seem wrong. > For classic PD, he seems to have advanced very rapidly. I'm assuming > that he is taking 25/100's, 4 times per day, and I agree that is not very > much. Also Parlodel is the oldest of the agonists. Has his doctor tried > other drugs and dosages? IMHO, if a patient is doing as poorly as your > brother without increasing the Sinemet and trying the new agonists, and > also adding Comtan to improve the response to Sinemet and increase his > "on" time, then I would say that your brother should immediately get > another doctor, a PD specialist, to evaluate him. Evaluate him regarding > the specific diagnosis, and his medication prescribed. Regardless of > whether his Dr. is supposed to be a specialist, from what you have > written, I think he is incompetent, negligent or both. I seriously > question his diagnosis and/or his medication regimen. > > Good luck, > > Charlotte Mancuso > > On Fri, 28 Jun 2002 00:16:10 -0400 Larry Wilson <[log in to unmask]> > writes: > > Hello all. > > > > My sister-in-law just took my brother to the PD Dr. June 27 and he > > did not > > increase his dosage of Sinemet and Parolodol. John is on minimum > > (sinemet) > > dosage - 4 times a day 7 am, 11 am, 3 pm, 7 pm John is 6 ft. 2 in. > > and > > weighs 116 pounds. He is being fed by tube in the stomach since his > > episode > > with pneumonia - aspiration. John is now too weak to walk, cannot > > talk, and > > has a poor quality of life in the nursing home. They do not give > > him > > physical therapy. He has relatively little interaction with anyone > > until > > his wife comes late in the evening after work...she also goes by on > > the way > > to work. John was diagnosed PD about 5 years ago. The last 3 1/2 > > years he > > had been staying home with a sitter. Now with this feeding tube he > > has been > > placed in a nursing home. > > > > I have been out to see my brother in Dallas Texas twice within 3 1/2 > > months. When I left him in April he was reading the paper (maybe), > > alert, > > could walk with my help...we walked the corridors up and down...he > > took the > > remote control and recognized he had it upside down and would turn > > it around > > to begin using it....then flip continuously...(probably like I do at > > home), > > shake his head yes or no, smile, make some type of "face", seemed > > alert, > > could catch a ball and throw it back very hard - continuously and > > not tire, > > could squeeze my hand very hard...to the point of hurting, could > > latch onto > > my arm and would not let go....we had some good times together...but > > he > > could not talk, could not walk without help, and would not cooperate > > with > > the nursing staff. > > > > I tried to get him on physical therapy before I left - again. He > > had been > > on it but they said he had "reached his peak" and they had to take > > him off > > Medicare Physical Therapy. They agreed to put him back on if I > > demonstrated > > how I walked him. I took the two physical therapist (both women) > > and had > > them watch while I got him out of bed, got him up, and walked him. > > The two > > physical therapist looked frightened while I got him up. The "long" > > and > > "short" of it was that they could not do any more for him because > > they could > > not do physical therapy with John and he threatened them > > apparently. I > > asked for a male therapist and they said that was out of the > > question. > > Consequently, John is not getting any exercise. He is not active. > > In my > > opinion the two physical therapist were incompetent. But one was the > > head of > > the "company" that contracted with the nursing home. > > > > The question. If John has severe PD shouldn't he be taking more > > medication > > than what he is? According to the PD doctor his shaking is not > > noticeable...present medication seems to be doing the job for > > shaking. So > > he did not increase the medication. > > > > John has had all the classic symptoms of PD. Age 67. 1) Shuffling > > of feet > > since 1994. 2) voice gradually reduced in volume until no voice even > > though > > he appears to "lip" words, 3) Gradually lost his ability to walk. > > 4) His > > handwriting would be large until it "tailed off" to a very small > > scribble, > > 5) His shaking of the cup of drink would spill he was shaking so > > much (the > > shaking apparently has been controlled), 6) could not swallow very > > good from > > 1998-9 until now (he would get food backed up in his mouth and would > > finally > > swallow too much and choke. 7) his head used to shake but now I > > believe he > > is too weak to shake it 8) Began to swallow into his lungs so he had > > a > > stomach tube put in. 9) He has lost weight from 170 down to 116. > > He now > > appears to be very weak. > > > > It would appear John has classic PD - and severe. And medication > > does not > > appear to make any difference. > > > > We are going to try to get him into a PD clinic in Dallas (I thought > > when I > > left they were going to do that but the Clinic would not give John > > the DR > > requested - so his wife cancelled the appointment. > > > > Does anyone have any thoughts that could make a difference? Being > > in > > Georgia I cannot get out there very frequently. I have gotten some > > good > > ideas from your comments....but it appears I am the incompetent one > > in > > attempting to put all of this together. Question in the back of my > > mind - > > am I being a realist? > > > > Thank you, > > > > Larry > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn