Skip to content
My WebMD Sign In, Sign Up

Announcements

Visit the WebMD Parkinson's Health Center for information about symptoms, types, diagnosis, treatment and care.
Hello agaIN
avatar
donnadee49 posted:
Hey guys... long time no write!! I'm ok just having trouble mentally accepting PD that is steadily getting worse Yes I too have shortness of breath was blaming it all on COPD. My tongue weighs 300 lbs. this morning. and my left foot has a mind of its own.I only have "walking time" about 3 times per day now (1 hour or so after the sinemet) I can boogie on for 2 or 3 hours.. sometimes dancin'!! The frustration of getting OUT of bed is unbelievable. I now have a hospital bed but it is still a challenge.I live in A really nice ALF with employees who are learning more about PD. thanks to my big mouth. People seem to think this is all about the tremors. I have none b ut BOY DO I HAVE EVERYTHING ELSE!!! I'll b e back soon and try to keep with the program. You guys have saved my sanity m ore than once!! Happy Turkey day Donna Dee
Reply
 
avatar
lovedogs1955 responded:
Hi Donnadee49! I agree 100 % that most people don't have a CLUE about what goes on with PD. I am ashamed to admit that even I, a RN with over 32 years of experience) didn't really know too much about it except for the tremors. I have even had a hospital MD once ask me "why do you think you have PD? I don't see too much tremoring." OMG. Dr. Stacey, I have said it before----there needs to be some continuing education for both doctors and nurses. PD is so much more than anyone ever knows---that is, until you are stuck with it yourself. I seem to be the one educating everyone about PD, even some of my doctors, And, beleive me, I have several specialists. Getting disability was a challenge,but I am so glad that I was able to get the correct legal assistance for that. And, I am very fortunate to have such a wonderful support of family and friends. I keep all of you in my thoughts!!
 
avatar
worn1 responded:
lovedogs1955 has it right about education. I have had one doctor ask me about parkinson's. His father was diagnosed and he wanted to know what it felt like and what could his father expect. I wish more doctors would ask instead of pretending they know. I also have a big mouth and do not hesitate to answer questions. The more people know the better they understand. Also by answering nurses and doctors questions hopefully it will make it easier for the next person to be diagnosed for parkinson's at a earlier stage. Easier for those who need disability to recieve it. For those that make rude comments or make fun of the movements i do not hesitate in taking them down verbally. By the time i finish with my tirade no one is laughing,
w
There are none so blind as those that will not see
 
avatar
worn1 responded:
donnadee49
out of couriosity what is it that causes you to reject mentally your diagnosis. I also have problems getting out of bed. I have my meds bedside and 1 hour before I get out of bed I take my medications. This does 2 things: easier to get out of bed and meets the requirement not to eat 30 minutes after meds. I still work --no choice. I am beat by the end of the day. I take my meds just before bed which also helps. My right foot in the morning is the one with it own agenda Taking the meds 1 hour before getting out of bed also helps with this. I am not fighting my lef and foot pain by trying to keep it from bending in the wrong direction with getting my feet on the floor. Also if you are having problems with "heart burn" put the head of the bed in a slightly raised position and for swelling in the feet and legs raise the foot slightly. it may sound unconfortable but it isn't.

w
There are none so blind as those that will not see
 
avatar
donnadee49 replied to worn1's response:
Just for your curiosity,worn one... I am 63 yrs. old and have survived a LOT of bad s... in my life. It is hard to accept that God has giv en me something to deal with that I can't kick. So, I exercise, attempt to walk the hall at least once a day and keep myself lookin good(or so I am told) and never say never. As ichael Fox said I got PD but it doesn't GOT me.
 
avatar
worn1 replied to donnadee49's response:
donnadee49
The reason I asked I had been misdiagnosed for so long and told there was nothing they could do for me. In other words it was my imagination. I was falling staggering and no use of my right hand or arm. thank god for computers. So when I was diagnosed and started treatment for Parkinson's the pain left and I could start living again. I thought it strange to hear you were mentally having problems accepting Parkinson's
w
There are none so blind as those that will not see
 
avatar
Jeannie1955 replied to lovedogs1955's response:
Hello, so glad to be in this and getting some imput . My husband has Parkinsons D. His right hand then side began to shake very much then mostly that whole side, mostly when trying to do much. Has the gate walk. Also seems to have sooooooo many other things that go along with it! But he other complications too, so makes it hard to know which one it is! I was reading about the hospital bed as I also have been thinking about it. But he is very hard to do anything for. He just won't cooperate much at all.May I as this question? Have you noticed something going on with your mind? He is on Sinamet, but claims it causes more shaking so will will take it properly. Also has become incontinent and up many many times a night, even with meds for this.First o ne didnnt work so is now on another, Flomax I beleive.But he does things that make no sense to me, like last night, but has been other times, woke up many times for the urine prob. but besides sometimes falling, not using his flashlight or a light to see, found himself into the corner area of the bedroom trying to keep going into the wall even though he couldnt and knocked over a vaporizer that was there, I had it in the corner to avoid his running into it, but instead of sayin ganything and stopping trying to go through that wall! i woke up to the noise!and seemed to just not be with it at all not knowing where he was! or what he was doing??????? I just find that I can't figure this out for helping and of course most people just do not get it! they just don't understand. It is all getting frustration.I did not know if you had anything for imput as to what maybe does go on!? how long have u had it , if I may ask? ty so much for any imput and God love you.Take care I belieive in prayers, so I will pray for you.
 
avatar
Jeannie1955 replied to worn1's response:
Amen to that! How frustrating it must be. I will be praying .
 
avatar
Jeannie1955 replied to donnadee49's response:
Amen! good for you !


Helpful Tips

Sensory symptoms in Parkinson's DiseaseExpert
Sensory complaints in PD are not uncommon, and include visual changes, loss of sense of smell, restless legs syndrome (RLS), and pain. ... More
Was this Helpful?
64 of 80 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

For more information, visit the Duke Health Neurological Disorders Center