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Just told I had Parkinsons
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batexas posted:
Hi all, my name is Bruce I live in Texas and was told a few months ago that I have parkinsonisumes (I am sure that is spelled wrong) and was placed on Miripex .125 3x a day. This week I finally got a second opinion and was told I had Parkinsons. I have several of the symptoms but find that only my oral ability to communicate effetively is bothersome. It is hard to find words and stuggle in converstaions to get my thought out.

I am hoping that through this discussion I will be able to learn more about the conflict in diagnosis from two well regarded PD neuroloigsts and what changes I may be facing in the next 3 to 5 years.

Thank you in advance for taking the time to respond.
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worn1 responded:
batexas
First the progression of parkison is different for everyone. I can tell you since i have started on medicatiion my life has improved. before medication parkinsons had develped to the point i could not walk without falling, no use of the right hand or arm,vision problems,memory problems,speach problems and learning problems. the medications have helped with movement. i can now use my right hand and arm i can walk without falling and i do not take up 2 lanes driving. My ability to learn is still impaired, memory impaiered, spellling atrocious. I ause to have a memory like a steele trap and extensive vocabulary --no more--still shrinking. problems with speech. loose words and thought while talking. the strange thing is i know what i want to say but the words disappear. The only thing not affected is my knowledge of laboratory medicine. althought i know it is just a matter of time before it is. Parkinson destorys your brain slowly.it affects all areas not just movement. the sad part is you know it is happeining and can not stop it. you are looking at the slow death of who you are and hate who you are becomming. That is me you might not have those problems any time soon. you may be the lucky one to have a slow progression or almost no progression at all.
its a roll of the dice.

you asked the difference, here it is in a nut shell
Parkinson due to loss of dopamine. period
now you have Parkinsonism--What a list--
stroke
encephalitus
meningitis
progressive supranuclear palsey
cortibossal degeneration
toxins
head injury
certian antipsychotic medications
spelling may not be correct.

hope this helps
w
There are none so blind as those that will not see
 
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worn1 replied to worn1's response:
Haylen
can we please get spell check?
Thanks
w
There are none so blind as those that will not see
 
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lovedogs1955 responded:
Worn1 is right when she says that the progression is different for all of us. What I have found to be frustrating is the lack of knowledge about PD among health professionals, especially physicians. I don't have extreme tremors, which most people think is the only symptom of PD. My disease started as severe chest pain and shortness of breath. This pain gradually spread to all of the other muscles in my body and continues to be my main complaint. Two years ago, I developed drop foot on the right side and thanks to a custom made leg brace, I am again able to walk my dogs everyday. I also have a hard time getting words together and having problems speaking (called stiff mouth). Also, the past year, I have started having problems with initiating the swallow.

Keep track of your symptoms/complaints so you can remember what you would like to discuss during your medical appointments. Take someone you trust with you so that they can assist in helping communicate, both in getting your side out and in understanding what the physician is telling you!

This patient exchange has been very helpful to me and others. Stay tuned and best wishes to you Bruce!
 
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worn1 responded:
Bruce
I should have given you some positive instead of complete negativity.
First off there are worse things in life than Parkinson's. You can still move and science is progressing every day. They are just beginning to work on the other problems associated with Parkinson's. Your memory will not be destroyed. It just takes a while to come to the surface. For me it is names. The patch used for Alzheimers(SP?) is used also for parkinson dementia. It works. The more exercise you do the better. The saying use it or loose it is true with parkinson's. Keep away from negative people. They will suck the life out of you. Laugh as much as possible. Nothing make you feel better than a good laugh. Do not be afraid to tell your co workers. True there are some jerks but you will find out fast who your friends are. Also I have disovered-- working with an older group--that they do not try and hide it any more when they forget things.
They let there hair down so to speak. I guess they figure if you can share your problem they have nothing to fear. Encourage their questions. The more they understand the easier the work enviroment. One thing i did not mention earlier is the loss of balance. With the medication you may feel like you are normal again. Wrong. I thought i was even though the neurologist said I still lacked a sense of balance. I tried to move a glass coffee table top and landed face down on top of the glass top with my hands pined under the top. I had to laugh as the only thing that came to mind is I have fallen and can't get up. A sense of humor is essential to your mental health. Always look on the bright side--find something positive. I know a lot of people do not agree with me concerning pets. But My 2 have been a life saver. They know when Ihave reached rock bottom and lift my spirits. Also they are great conversation starters.
lovedogs1955 gave you some great advice about the note taking and a more postive response.
To sum it up a positive attitude with plenty of exercise does slow down Parkinson's. My symptoms are worse on my negative days.
w
There are none so blind as those that will not see
 
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batexas replied to worn1's response:
Thank you both, i really appresicate all the of comments. I especialy like the idea of having a spell check.... before posting. Laughing at myself is my excuse when my hands start temembling in a meeting, I mostly blame it on coffee. Anyway I guess this is the beginning of a new journey that I will face and deal with...

By the way, I seem to be bitting my tounge while sleeping? Last night was the 4th time in a month. Is this a possible symptom. It seems like every new pain or soreness brings the question is it PD or age. I am 58.

Thanks
batexas
 
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lovedogs1955 replied to batexas's response:
Hi Batexas! I like your new name. I am also a RN, but unfortunately have been disabled since 2006. I totally agree with worn1, who is also a nurse. Use it or lose it! Some days, my memory and speech is worse than "normal." What seems to be different for us with PD, is that with some cues, we can recall words, names, places, etc. That is so frustrating for me, because I used to have a brain like a locked safe!

Laughter for sure is what has gotten me through so many things over the past 10 years. ( I was diagnosed with cancer back in '02). Laughter and honesty has also gotten my family and friends though the rough days.

Here is a piece of knowledge another cancer patient gave me a long time ago and it definitely has worked. She said "have as many pity parties as you want. But, then get up, put your shoes on and get on with the day." Everyone has issues to deal with, it's just that ours are sometimes more visible!

Keep smiling and get a laugh in today!
 
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worn1 replied to batexas's response:
batexas
it could be parkinson or possibly medication. I know i use to grind my teeth and ended up going to an orthodontist for braces and i now use --for got the term---plastic guards over the lower and upper teeth. check with your dentist to see of there is some type of device or guard to protect your tongue. remeber parkinson affects everything. you will also discover as time goes on that what works for some will not work for otheres. it is a hit and miss treatment program. for instance i stand by mirapex others say it causes problems. one other thing if you find something that works for you continue to do it. for instance i knew the tradmill works for me but was told not to use it by the nuerologits. it is now recommeded. there is still a lot of missing information on parkinson. the programs are aimed more at treatment and not cure.
there is a group in the united kingdom that publishes info on parkinson. VIARTIS. check it out.
research parkinson. the more you know the better equiped your are to handle what is happening to you. ask Dr Stacy questions. he usually answers questions once a week.
Haylen will also answer questions if directed to her. by the way i am a lab tech not a nurse. i had considered nursing at one time but after 3 months of patients i decided this was not for me. I even considered psychology until i sat down with a practicing psychologist who was also teaching at the time. I have always been facinated with abnormal psych but i am not going to be hit and not hit back. so i checked out lab and love it. the area i wish i had tried is criminal paleontology. reconstruction of skulls to try and identify who the person was. i use to be great in art.

welcome to the community
w
There are none so blind as those that will not see
 
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worn1 replied to lovedogs1955's response:
lovedogs1955
glad your back!
I hate to say this but i am not a nurse. tried it for 3 months--not my cup of tea. I am a lab tech. we both take care of patients but in different ways. we both have to know what the doctor knows and our job also. what would the doctors do with out us
w
There are none so blind as those that will not see
 
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batexas replied to worn1's response:
It appears that I have two new friends to talk with. Thank you for welcoming me to the neighboorhood. You both have compassion, that is evident in your replies, so nurse or lab tech does it matter. I am still working, I am a green buidling consultant and talk for a living....for the last year or so it has been fun trying to find words that use to come so easy.

Lovedogs55, I had a prostatectomey last year so I understand, thankfully after radiation, my PSA as been non-detecatable. We have 1 dog, two horses, and 4 cats that have adopted are barn and home. They all are geat and help keep me similing.

Researching the web about Parkinson's and Parkinisoms frustrates my wife. So I don't get to do it often. Besides this sight do you recommned any others where chatting is possible. Talking with you is very helpful.
 
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lovedogs1955 replied to batexas's response:
I don't know of any other patient exchanges on the web. Most areas of the country have support groups, but I can't say that I have ever attended a meeting.

I forgot to mention that I have had a few periods of time where I chew the inside of my mouth when I am eating. My dentist did some filing down of a molar or two and that helped. I still have that happen, but not as much.

I am 57 years old, so it appears that we are around the same age group. I have found some informative stuff on PD and printed it out or ordered it from the National Parkinson's Disease Organization. Got enough for my husband, two grown daughters, a close friend and myself. Even though I have been a nurse for 35 years, PD is an area that I have very little professional experience with, so I am learning as I go.
 
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worn1 replied to batexas's response:
batexas
lovedogs1955 has a good idea of printing out information and giving it to your wife and family members.
. For information and events check out the National Parkinson Foundation. In Sept they are having Natiional Move Day. I will be attending the one in my area. I found this is a great way of meeting different people with out committing to a group.
My husband has just made the 1 year mark post cancer surgery. 4 more years to go. If he is cancer free for 5 years the chances are his cancer will not return. I am 58 and would like to retire. But I need to wait the 4 years He has to be checked every 4 months. At that time we can sell and move to an area that is affordable.
I have found if I get plenty of sleep and avoid stressful situations i have fewer problems with words. Names though are a problem
As far as chat rooms on the web goes I have not checked it out.
w
There are none so blind as those that will not see
 
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cyntx2 replied to worn1's response:
I too am a relative newcomer to the PD society (I refuse to call myself a "parkey"). I was 50 when I first found out what all of the really weird symptoms I was having actually meant. What a relief, I thought, it's just Parkinson's disease! Oh it could be sooooo much worse! But having said that, it really is one annoying disease. I too have been watching myself give up one thing after another as I deteriorate, used to ride a motorcycle... now my balance is so bad i can't keep the bike upright all of the time, and ya just never know when you body is going to fail you and not respond like you expect it should. I would like to recommend a book I found that was extremely helpful to me and my family and friends. It is an orange book with a green insert on the cover titled Parkinson's Disease A Complete Guide for Patients and Family by Weiner, Shulman & Lang. It the most comprehensive, yet easy to read book I've found on the subject. Also the Michael J Fox Foundation website has a lot of good information and links. I also am a health care professional, still working, and i can tell you it is the biggest challenge of my life trying to keep up with my job responsibilities and with my coworkers. The best thing is that they all know what I am dealing with and are very supportive when i can't "find the word" as you described above. I told them when i became a liability to the company I will step down, but for now I'm going strong if not a tad overwhelmed. EXERCISE thats a key factor on staving off the debilitating effects on your muscles. Hang in there once the shock wears off, there is life after diagnosis, it just a different life... good luck! C
 
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myhusbandmyhero replied to worn1's response:
Hello. I was diagnosed with Parkinson's disease almost seven years ago, at which time my neurologist started me on Sinemet
(generic, carbidopa/levodopa). My first symptoms were left-hand tremors and loss of balance while standing still. I started with one pill a day. Now I have to take eight per day. I am also on Xanax to help relax my muscles when the muscle contractures (painful spasms) begin in my diaphragm, back muscles,and side muscles seize up and won't relax. That's the manifestation that confuses my doctor s, because they have never had a Parkinson's patient with that type of problem.

The early onset of dementia is frightening. I share your feelings of what I have become, wondering how much more damage this disease will cause. I do have my share of "pity parties," but I remain as active as possible.

Nan
 
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lovedogs1955 replied to myhusbandmyhero's response:
Nan, I also have the pain in the chest, in fact that was the first part of my body to really show something was wrong. SEVERE chest pain whenever I talk, laugh , or do anything with my upper body. It has gotten slightly better, but I just have to be careful to pace. My digestive system had taken a huge hit over the past several years. Multiple bowel obstructions, resulting in several hospitalizations and surgeries. The last major surgery was 3 years ago on an emergency basis---my large intestine had put itself into a huge knot and I had to have a foot of intestine removed because it had become gangrenous. Now, I have trouble with swallowing and my GI doctor has dilated my esophagus 3 times, which helps with the "full" feeling in my chest, but of course, not with the initiating of the swallow. My Neuro has tried me on Sinemet, but I had horrible side effects after only one pill and even 1/2 of a pill.

So, for now, we are treating my symptoms the best we can. Pain meds for the daily muscle pain, Neurontin for the neuropathy, Protonix and now Xanex for anxiety. Oh yeah, I forgot to mention that I developed foot drop in the foot that started with the tremors before they spread to the left side. Wear a leg brace and walk with a cane. My vertigo is bad, even when I am lying down.

So, that's enough for now, This forum definitely shows me that I am not alone with this stupid disease.


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