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Posted 5/3/2009 10:25 PM (GMT 0)
I am a 39 yr old woman who has found that local parkinson support groups here tend to focus on the elderly.  I know this is predominately and elderly disease but what about the rest of us.  I am a young woman who enters  these support groups feeling out of place for the only thing we have in common is this crappy disease.  I hear that exercise helps but i am limited to how much i can excercise because i also have degenerative disc disorder, sarcoidosis as well as asthma and rls ( restless leg syndrome ) just to name a few I dont know where to turn i live in a very small community where parkinsons is not very predominant so resources ar e limited. Can you please give me some advice. 
Posted 6/10/2009 3:39 AM (GMT 0)
I feel for you Lil. I am 38 and understand completely. My advice is the same I give myself every morning. Just do it. I just suck it up and push as hard as I can to do it all. My PD, My Seizures, none of it is going to beat me. Period.
Posted 6/11/2009 3:00 PM (GMT 0)
Lil, You don't need any advice on finding support.  You've found it right here.  I attended a support group which met at a local hospital, but they never talked about PD!  They would have attorneys come in and talk about making out a will and things like that.  Forget it.  At HW you can talk about anything you want, within reason, and it's always your turn to talk and no one will interrupt.  You won't get the reaction that we usually get outside the forum.  "You have Parkinsons?  Oh yeah.  Like Michael J. Fox? Yeah, he's had it for years and he's fine."  There are no dumb questions and whatever you are experiencing you will find people who know what you're talking about.  Good luck and please let us know how you are doing. 
Posted 6/17/2009 7:50 AM (GMT 0)
I have just been diagnosed with PD, or as they put it, early onset PD (all the same I guess). I am a healthy 41 year old female who just had my first baby last year. I waited a little late to get started! He is now over 13 months. The only person I know with PD is my 75 year old uncle. I am hoping to meet people my age who are going through this to help me. I am so scared for the future (wanting as normal a life to see my son grow up). I am a very private person, but I feel I will need to open up about this. Hopefully this chat room gives me some insight and knowledge of this new chapter in my life.
Posted 6/17/2009 11:26 AM (GMT 0)
We do have quite a few younger members whom I hope you hear from.Another site to check is the young onset parkinson's association,better known as yopa.www.yopa.org.wish you the best Ed
Posted 6/30/2009 5:53 AM (GMT 0)

I was in my early 40's when diagnosed. I also sought out information from support groups and found folks mostly in their 60's and up, many of whom were fairly affected with PD. Although 'typical' support groups certainly serve their purpose, it wasn't what I needed at the time.

 

There are many alternatives such as this and other PD websites. There are wonderful folks out there who will answer any question or concern.  As yekkimo said, a good one is www.yopa.org   They've been having some issues with their website and chat, but it appeared to be working earlier this evening for the first time in several days. If you have issues getting to the site, please try again another time. 

 

Another alternative is to start your own young onset support group, which I did. Both the National Parkinson Foundation (NPF) and American Parkinson Disease Association (APDA) have literature on starting a support group. A support group can entail anything from meeting for coffee (decaf for me because of the tremors) to organizing meetings, symposiums, etc.  It's all in what meets your needs.

 

I was/am a private person also. But we are in the battle of our lives. The more we can learn and share, the better we all are. This isn't about you/me ... it's about fighting back against a disease.

 

As a 'younger' person (OK, I'm 52 now and not-so-young), I am a believer in exercise - rigorous exercise - for people with Parkinson's. I've been involved in a boxing-based fitness program (offered free of charge so no solicitation here) for people with Parkinson's. It aggravates my tremors for 30-60 minutes, but improves my symptoms overall for a couple of days. I would strongly encourage you to get involved in a rigorous - or any - exercise program. It's also a great stress reliever!

 

Best of luck to you!

lizzy4451

Posted 11/17/2009 7:43 PM (GMT 0)
I joined the forum today, My name is Rick, 50 yr. old, diagnosed 5 years ago.
For exercise, I hear that a fellow named John Argue has a set of DVD's called ' Tai Chi The Art of Moving' and it is a highly recommended Parkinson-specific program. I just sent for it and hope it helps.
My first neurologist overmedicated me, started me on high doses of sinemet, then stalevo (the highest dose with pills the size of a marble). I changed docs, found a good one at Cleveland Clinic Florida. She put me on a low dose, 25/100 5 times daily. It worked well for 2 years, less side effects, but I hit a wall a few weeks back and am seeing her tomorrow to tweak or increase meds. I am often sore and stiff doing simple things. My walking is terrible unless I am 'on'. My right side is affected, but now my left arm & hand is losing mobility and dexterity. It is scary because I depend on it so much for everyday tasks.
I have tried Azilect, Comptan with Sinemet, Requip, Stalevo and nothing except the Sinemet (Carbidopa Levo) has any positive effect for me. I may have to go to the blue pills or take more of the yellow pills (25/100) I am on.
If anyone experiences severe cramping in the ankle/thigh area, I would recommend botox shots in the area. Cleveland Clinic did it for me in 2007 and it deadens the nerves there and alleviates it. Mirapex used to put me in a coma, I was totally listless. My wife thought I was frozen or something.
I am also thinking of DBS, deep brain stimulation. It seems goulish, but it is frustrating only feeling good and functional a scant few hours a day and sore and stiff the rest of the time. A lot of success stories with DBS, but it is still new and it's hard not to be nervous about the procedure.
Good Luck to all, nice being here.
Posted 11/18/2009 2:13 AM (GMT 0)
I am 48 (which feels young to have PD) and I too went to a local support group meeting and, being perfectly honest, it depressed me. It was a young onset group but I was the youngest one there and others were more advanced which was a little hard to deal with as I have only been dx'd for about a year and don't have very strong symptoms. That said, I will probably go back (they meet every other month) and the social worker who ran the meeting was really good.

I have only told my family and closest friends and have not told anyone at work so it helps to use these forums to talk to people. I will say, I haved learned that with PD, it is really hard to find someone with a real similar story. Ages, symptoms, drug experieces, etc. all differ.

I am an avid excerciser (which is how I learned of PD because it first showed up when I was running) and I am convinced it is really important. There are many ways to get around physical limits in excercising. I cannot run but eliptcal machines at the gym seem to work for me (at least if I have taken my meds). I can also do sit ups and other ab excercises. SO hopefully you can find a way around any limitations. Even 20 minutes a day is huge.

Anyway, good luck finding what works for you.
Posted 11/18/2009 11:59 AM (GMT 0)
Rickatart,Welcome to HealingWell.Geetar is 100%correct in both counts .The variability of the disease,and the importance of some form of exercise.Wish you the best.Ed
Posted 11/19/2009 3:47 AM (GMT 0)
Rickatart,

I have heard John Argue speak and have a book by him. I haven't followed him in the past couple of years (heard him about 3 years ago), but he was about more than tai chi (although studies have shown that tai chi is great for people with Parkinson's). The book I have is good, but definitely not a rigorous exercise program (a comment, not criticism).

 

I am also an avid believer in exercise. I've been participating in a boxing-based, non contact, fitness program for people with PD 3 x a week for 3 years. It aggravates my tremor at the time, but improves it overall. The program is offered free of charge to pwp, so no solicitation here. There are a couple of videos on www.youtube.com Search on 'Rock Steady Boxing'.

 

lizzy4451

Posted 11/21/2009 1:11 AM (GMT 0)
Rick, I can tell you of my experience with DBS, which has been mostly positive, and I would be interested in the botox treatment.  I was wondering recently if this wouldn"t be of some help with tremors and I did a little research.  It appeared that there was a current study going on with no definite results yet.  Please get back with me and I'll tell you more than you want to know about DBS. 
Posted 11/21/2009 11:28 PM (GMT 0)
I found out I had PD about a month and a half ago. I decided to do some research on it because it was in my family history, not knowing this was something younger people can get. I have done much overwhelming extensive research to make sure what I was looking at was consistent and accurate. I also wanted to make sure that I wasn't jumping to conclusions, that I was very thorough. I was quite alarmed when I found that I could say yes to about 90% of the sypmtoms.

I haven't seen a doctor yet for an official diagnosis, because I know that one is most likely given through observation. I've been keeping a journal and want to take it to the right kind of doctor but am not sure which one to go to. I am most concerned that no doctor will believe me because I am so young, I'm 22. I am wondering, is a brand new pair of shoes with worn off heels convincing enough evidence? I don't intend to start treatment just yet since most of my symptoms are fairly mild and are not very consistent in severity from day to day. I have already been through a few rather embarrassing things when around others. I really can't be sure that seeing a doctor is worthwhile when the research I've done is so clear. All I have to gain really it seems is a piece of paper signed by a doc that says I have it. Any suggestions?
Posted 11/22/2009 1:29 AM (GMT 0)
Over the many years that I have met,and talked to people DX with pd I have not run into anyone as young as 22 DX with pd .I'm not saying it isnt possible.Some medications can cause cause pd like symptoms as can some non prescribed drugs and chemicals in young as well as older individuals.

Another thought is the large number of other diseases that have symptoms similar to pd. I won't mention them as you undoubtable found them in your research.

You need to see a neurologist,and get a second opinion.Wish you the best.Ed
Posted 11/22/2009 2:01 AM (GMT 0)
Mr. Prozac, You are young and very smart. I don't want you diagnosing me and you don't want one of us diagnosing you. If you have read everything about PD you realize that it is extremely unlikely that you have PD and you realize that the kind of doctor that you need to see is a movement disorder specialist. You will find such a doctor at a teaching hospital. In the Southeast we tend to go to U of Al at Birmingham or Shands Hospital at the U of Fl in Gainesville. With your experience in research you should be able to locate an appropriate doctor on line. There are treatment options including various meds and DBS sugery. Whatever the cause of your symptoms you would benefit from reading Michael J. Fox's books. Old farts like most of us can use PD as an excuse for sitting around, but you need to get proactive and remember you have PD, or whatever, it doesn't have you.
Posted 11/22/2009 11:51 PM (GMT 0)
Dear Prozac,


Certain drugs or medications account for about 4% of all cases of parkinsonism. According to some studies, patients who experience drug-induced parkinsonism may actually be at an increased risk of developing Parkinson's disease later in life.



With a history of Depression you may want to review you medictions with your physician if you have not already done so...............just my 2 cents worth today.



I wish you peace.



Kitt
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