hi there- hi there- my name is fronya and this is all bew to me still. i was diagnosed
with young onset PD in may 2002. 5 months after i had an anterior cervical fusion and alot of the symptons stayed.
i'm 47 now and have a wonderful nueroligist who has worked with me for almost a year before we found the rite combination of meds. i'm leading an almost normal life but for one sideffect.
DYSKINESIA. AS MY HUSBAND DARRELL AND I CALL IT THE WIGGLES. i'm on stalevo-requip and symmetrel. the symmetrel really helped alot at first but it doesn't seem to be working quite
as well anymore. i'm taking it 3 times a day.
i'm open to any ideas to help me with this very frusting sympton. i have hurt myself quite a few times especially in the kitchen for i love to cook. sometimes darrell has to take over! my next nueroligist visit the 22nd of this month. i'd love to take him some new ideas on this problem.
thanx bunches
fronya 03-07-2005
If you would like to talk. I am here for you. I can give you the best advice I can with what I went through with my mom.
ladykassie-
I would really like someone to talk to. I hate to keep reapting the same thing over and over to my husband even tho he is a great listener it has to get old for him after a while. I have not talked to anyone that is involved with someone that has PD or that has PD themselves! I no i should go to a support group meeting but then i guess that would make this disease real to me, also i hate to bother people to drive me places that are to far for me to feel comfortable driving by myself.
I would really like someone to talk to. I hate to keep reapting the same thing over and over to my husband even tho he is a great listener it has to get old for him after a while. I have not talked to anyone that is involved with someone that has PD or that has PD themselves! I no i should go to a support group meeting but then i guess that would make this disease real to me, also i hate to bother people to drive me places that are to far for me to feel comfortable driving by myself.
Hi,
First thing is that you have to accept it.. it will make you life and situations that come across you easier for you and your husband to deal with. You have to. Acceptance is a huge part in any situation.
Please do that for youself and your husband.
I will write back to you soon.
'-)
Alice
First thing is that you have to accept it.. it will make you life and situations that come across you easier for you and your husband to deal with. You have to. Acceptance is a huge part in any situation.
Please do that for youself and your husband.
I will write back to you soon.
'-)
Alice
I thought Parkinsons was not passed through generations?
alice-
thats what they say, it's not heridity but i did read somewhere that there are more people effected that come from north or south of the equator. both of my parents come from poland. yes i'm a polack. the best little cook you ever met. i will try to find out my sourse of info. also don't you ever wonder why the doc asks you if any one in your family has had pd or has it now. it makes me wonder how many ways does one recieve PD?
thanx fronya
.. ;0)
Hmmm, never thought of that..
but.. let's help you.. you can ask me anything you want Fronya, I will help you as much as I can.
Hmmm, never thought of that..
but.. let's help you.. you can ask me anything you want Fronya, I will help you as much as I can.
I'm having a really hard time with dyskensia! It prevents me from socializing and I hurt myself(burns on stove-throwing things-dropping things and smacking up against the counters and stove handles. I have little bruises on my arms and hip area. I have even thrown my head on the corner of the range hood. 
have you told your doctor about this?
yes so we upped the symmetrel to 3xday. that helped for a while and its doing it again. i was sent to my nuerosurgeon 9I HAD A ANTERIOR CERVICAL FUSION)IN 2002. new mri's were taken last month and my neck is not bad enough to warrant another surgery. and when it is he will be doing a posterior cervical laminectomy. i see my nuero thy 22nd of this month.
Wow, Fronya.. you are going through some stuff. I also heard the sometimes people are missed diagnosed with parkinsons. I do not know anything about dyskensia. Maybe a new treament. Fronya, I am sure you have heard this all before, and I have no information to give you about that, just support and suggestions. Sometimes people from outside your comfort zone, and across the country can help you have a different perception of things.
Do you have any awareness when your dyskensia is going to start? If you do, that is excellent. Take some steps to learn how to control this. It will take a lot of energy to do this the first couple of times, but it gets easier. Your mind is a very powerful tool. Learn how to use it. Learn as much as you can about this to help you control. Don't give up. If you do, it wins and we don't want that. Do you have any hobbies, writing, arts, crafts, reading, anything? You can write.. you can write stories for children.
Do you have any awareness when your dyskensia is going to start? If you do, that is excellent. Take some steps to learn how to control this. It will take a lot of energy to do this the first couple of times, but it gets easier. Your mind is a very powerful tool. Learn how to use it. Learn as much as you can about this to help you control. Don't give up. If you do, it wins and we don't want that. Do you have any hobbies, writing, arts, crafts, reading, anything? You can write.. you can write stories for children.
alice-
thanx for the sugestions. yes i can tell when they are coming. i shall try your sugestions. have you heard anything about lessing of smell and taste as a side effect of PD or from PD meds. .i always make a list before i go to my docs. i'll ask him about this also.
cio
fronya 
p.s. alice-
what would make you think that i could have been misdiaginosed?
what would make you think that i could have been misdiaginosed?
It's just something I heard. I am not saying that you are. '-)
Yes.. my mom did loose her taste.. everything didn't taste good. Keep a close look at your tongue.. my mom got an infection due to the meds or something. I know this is going to sound heartless, but you might have to start looking into finding a GOOD place to for you to be. Some place where you can get 24 7 care. My mom, if she wasn't so stubborn, god, I miss her, I could of gotton her in a better place and she would of had the care she needed and maybe would of dealt with things better and learned how to handle situations. It's good for you and your husband to really consider this..
i am in a good place. at home with my husband and dogs. i'm only 47 and have a long way to go and i am learning on the way. iv'e been on meds 3yrs. now. you should have seen me before them big difference.
thanx for writing
fronya
I know.. and that is so great.. but I am talking more down the line Fronya. I didn't mean to sound it that way. Just for you and your husband in the furture.. Yes, you do have a long way to go. It's something to really think about. '-)
I'm so glad you said that cause i was really bummed last nite. I had a anxiety attack last nite. But now i feel alot better. How old was your mom when she was diagnosed?What meds was she on? have your heard much about DBS?
hear from you soon
fronya 
Hope I'm not being rude by jumping in on your conversation.I also have parkinsons dx in 98 60 yrs old .I'mcurrently taking mirapex,stalevo.I have been on sinemet,sinemet cr and selegine.The medications allow me to work,My major symptoms are walking problems,tremors left side,and numerous minor problems such as muscle soreness,minor swalloing problems speech and others.I have an excellent neurologist specializing in movement disorders,and a very undestanding wife .So i consider myself one of the lucky ones.My philosophy is keep a good attitude,exercise,get as much knowledge on this disease as possibleandnever give in to it.Wishing you the best,Again hope I didn't interrupt.
yekkimo
thanx for putting smile on my face!!!i'll never give searching for knowledgefor the cure and for research. it keeps me bzy.
thanx fronya
