PDwife
2 posts
Apr 13, 2009
12:08 PM
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After 2 years of hand/shoulder weakness and tremors, my husband was diagnosed with Young Onset PD last month. He was given Azilect and told to exercise a lot. Shouldn't we know more? I know it's a broad question, but can anyone tell us what happens now?
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lefty44
10 posts
Apr 13, 2009
3:12 PM
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Your husband's condition mirrors my own quite closely. I was dx in Jan. 2009 and am taking azilect with great results. Keeping a positive attitude is essential. With the right meds and support, he should live a long and productive life. Remember,this is a very slow moving disease, especially if it's treated early. Hang in there,
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qwik
21 posts
Apr 15, 2009
4:38 AM
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The initial shock is the worse I vew beendignosedfor 5 years and im still functioning quite well. Diet exercise and rest are very important as is dealing with stress. what state are you in?
qwik
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Mihai
1 post
Apr 15, 2009
12:38 PM
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I was diagnosed at age 33. I'm now 40. It is possible to live successfully with PD. It is frustrating, and it is progressive; but, I can think of many worse things to have! Exercise! Get adequate rest! Take meds as prescribed! The "off" times are a problem, so do all you can during the "on" times. The key is to adapt and adjust. Just don't give up!
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PDwife
3 posts
Apr 15, 2009
12:42 PM
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Has everyone here continued to work for a long time? Or is it just different for everyone? Any groups in Ohio for patients and or caregivers?
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Mihai
5 posts
Apr 15, 2009
12:53 PM
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I still work...plan to for a long time. It just takes me longer to do things. Where in Ohio? I'm near Cleveland (actually work in Cleveland).
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Kelly
3 posts
Jun 11, 2009
12:36 AM
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I have just joined and have introduced myself under Working and PD. I have been diagnosed almost 5 weeks now, but have been having symptoms for a while. My doctor started me off on Mirapex (a very low dosage) 3 times a day. I had very bad side effects, so they are now having me take Tigan before the Mirapex to help keep me from throwing up. It seems since I have started the medicine, most of my symptoms have flared up (does this happen or is it advancing). The pain in my shoulder has decreased and I now have strength back in my fingers. However, I now have terrible spasms in my feet (wrote about this earlier) that will not stop. Out of all the things I have been going through, this is the worse. It is sooo painful. I don't feel like I am having cramps, just these nonstop spasms. Does this come and go as with other symptoms when people talk about having on/off days? I am a 41 year old healthy female and this has just put me in a state of shock. I don't know how I am going to deal with all of this.
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Mihai
70 posts
Jun 11, 2009
9:18 AM
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Kelly, I'm wondering if your "spasms" are really dyskinesias (involuntary movements which are usually the result of too much medication)...most of us deal with them as the medication dose initially takes effect. You might want to research that and/or ask your doctor about it. It may be unrelated, but maybe not. Peace,
Mihai
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Kelly
4 posts
Jun 11, 2009
1:27 PM
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Hi Mihai I have only been on my med for about 4 weeks now and only on the full dosage (.5 mg - 3x day) for about about 2 weeks. I called my doctor about this spasm problem and he said it is definately from the PD and that they may need to increase my meds. All of my other symptoms are improving a little, so I really don't want to do that. He said a massage would help, but did not say anything about taking a supplement. I read where it is good to take Magnesium when having muscle cramps/spasms, so I got some at store. i also read about soaking your feet in epson salt. I am going to try both and see how I do. Have you or anyone else tried alternative treatment for symptoms instead of increasing your med dosage? I have just been diagnosed and b/c I will be on medication all my life, it seems like if you can stay on a low dosage for a while, the better. I realize some people cannot, and I may not even be able to, I am just surprised my doctor mentioned that given I just had an appt. with him and he said I was responding well to what I was taking (this was before I called him about the spasms).
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Mihai
72 posts
Jun 11, 2009
2:12 PM
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Kelly,
If he increases the meds and the spasms increase or get worse, then they are probably connected. It's such a double-edged sword. Maybe others here can offer some insight. I hope it all works out for you. Stay in the "driver's seat" with regard to your treatment process!
Take care,
Mihai
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Kelly
5 posts
Jun 11, 2009
2:54 PM
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Mihai,
I am still unsure as to what you mean by dyskinesias. I thought it meant something like moving your arm or leg uncontrollably. My foot doesn't shake, but when you look at it, you can see something pulsing inside. I am calling it spasms. Sorry for the ignorance, all these words (as well as symptoms) are new to me and I am trying to understand.
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Beccapooh
68 posts
Jun 12, 2009
8:01 AM
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The doctor that I saw yesterday told me, in no uncertain terms, that there is NO weakness in PD. Hm? As soon as I said that sometimes have muscle weakness, I was told, by definition, I could NOT have PD. I wonder why doctors are so different the world over? I also have those weird "pulses" in my feet. I've had them since prior to taking the meds though. It looks almost like a heart beat in there, but, the feeling in the inside is that of a twitch for me. If they get more intense then, it hurts, but, the "small" ones are very similar to the eye twitches that I experience. I would think that more information would be important, yet, I've also experienced myself, the fact that doctors seem to like to "keep things secret". I know that the terms are confusing for me, too. I don't really understand the difference between a twitch, a cramp, a spasm, a tremor, etc. etc. I know that I was just treated horribly at the doctors office because of my choice of words. I wish that there was some way that we could all use the same terms for the same issues, but, we can't, I guess. I'm not sure why we aren't just given every piece of info that we ask for. I wish that there was something that we, the patients, could do about being "sent on our way", ignorant to our own conditions. Seems really unfair. Good luck. I'm sorry that I wasn't really much help.
Last Edited on 12-Jun-2009 8:48 AM
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Kelly
6 posts
Jun 12, 2009
10:04 AM
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Thanks for the reply Beccapooh
I agree with you about doctors - makes you wonder how much they really know. My brother is a doctor. It is interesting that he mentioned that doctors will rule everything else out and say it must be Parkinsons, or it must be MS. I guess there is no clear diagnosis, which leads me to ask are all of the symptoms clear? Like I mentioned, my doctor said my foot spasms were b/c of PD. I only started having them after my other symptoms seemed to have been improving (tremors, pain and tone). This hurts more than the others though. It sounds like it is just what you have been experiencing, except a little more severe. What have you done to help ease them? When did you get diagnosed with PD?
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Mihai
75 posts
Jun 12, 2009
11:55 AM
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Sorry Kelly, You're right...your "spasms" are probably not dyskinesias. I was not thinking of the spasms as internal pulses. That's something I haven't experienced...at least not yet! Good luck to you! Mihai
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PDwife
4 posts
Jul 02, 2009
5:47 AM
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Beccapooh, Switch doctors. Our doctor at the Cleveland Clinic sat for an hour and just listened to us talk about my husbands symptoms and concerns before he even began the whole "tap your foot, hold out your hands, etc" My husbands very first signs of PD was weakness! For your doctor to say, "By definition you can NOT have PD." is just ignorance of the disease. The reason it is such a frustrating disease is because there are no "definitions." There is no way to be sure that it is PD, you simply rule out everything else. They can't say that it will progress in a certain way or that it will be helped by meds. Every person is different. I suggest you find a doctor who listens and makes you comfortable. We are all in for a long haul with this disease....you might as well get as comfortable as possible! :-)
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Mihai
112 posts
Jul 02, 2009
7:51 AM
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Becca, I agree with PDwife...get another neurologist. Many of us have "weakness"...I have great difficulty with very simple tasks (like turning a door knob, etc.). I feel weak when I try to do those tasks. I've read about the fact that if the muscles were "tested", they would be "normal" and show no sign of functional weakness; however, the PD has the effect of mimicing "weakness". I don't know if this is what your doctor was trying to convey, but he certainly didn't do an effective job of explaining what he was saying...you don't need that. Find a new doctor. PDwife...I am also seen at the Cleveland Clinic. I like my neurologist very much. He's very patient and does the same thing...listens! Who do you see? I see Richard Lederman. Peace,
Mihai
Last Edited on 2-Jul-2009 7:52 AM
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brooksie
32 posts
Jul 02, 2009
12:24 PM
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Hi, PDWife- From what my neuro has told me is that the body or muscles involved are not actually weak; it's just that due to PD, our brain "perceives" a muscular weakness. I too sense weakness in my right arm, yet upon examination by my neuro, I have just as much strength in both arms. BeccaPooh- I would confirm just what your doctor means by "no weakness". Kelly- Welcome! I am 41 and was diagnosed last year after being mismarked as having essential tremor (for 7 years). At times, I really freak out and some days just go about as normal. To really complicate matters, I just became a new mom in March. While it's twice as exhausting, I think, due to PD- it's twice as rewarding! I appreciate every moment with my son much more than I probably ever would have otherwise. Do I worry about what my body will be like 5 years from now? Yes, it's only normal, but I must say that PD has really allowed me to finally live in the moment...something that all the meditation books in the world had failed to do. Hang in there! There will be good and bad days, but just focus on each day, be happy when you wake up, focus on what you accomplished, even the little things, or experienced each night before you fall asleep. Being positive is the best advice out there!
Last Edited on 2-Jul-2009 12:33 PM
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brooksie
33 posts
Jul 02, 2009
12:30 PM
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Kelly, I also meant to address pain in feet. One of my very early PD symptoms was painful foot cramping. Mirapex did not seem to help too much but adding Levodopa therapy helped tremendously. My spasms happened while walking or exercising. Do your spasms happen while at rest (not moving)? Do they happen close to a Mirapex dosage? I ask because I also now get a foot cramp but it's more when at rest and after a levodopa or Mirapex dose- talk to you doctor. My neuro mentioned that it's hard to gauge the cause because BOTH a lack of dopamine and too much dopamine can cause painful cramping! Go figure. In my case, it's the result of too much dopamine in my system at once.
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Carol41
61 posts
Jul 02, 2009
2:00 PM
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Hi kelly,i havnt been dx yet,but i take those pulsin spassims in my legs mostly my left,sumtimes ther painfull most times ther not you can actually see it pumpin in and out on my leg :) i get them at nite time mostly
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DKBlues
1 post
Jul 04, 2009
12:04 AM
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Kelly,
You may be experiencing tendon spasms. I have had those for a number of years. I suspect they are PD related but don't know for sure.
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Kelly
10 posts
Jul 04, 2009
8:30 AM
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Thanks for all of the responses. It sounds like we are a lot alike Brooksie. As I mentioned, I am 41 years old too and I just became a first time mother last year (my son was born in May 08). I think I thought this baby was going to be born and be 5 years old (haha). I didn't realize how much they need you. It is very exhausting, but the best thing that has ever happened in my life. I am trying to relax about this whole thing and enjoy moments with him, but I can't help but worry how much time I have to be healthy watching him grow. I am a very private person, my husband is a professional athlete, which makes this harder to deal with (we haven't told many people and I need to talk about it). I hope to get some comfort on this website
Regarding my foot cramps/spasms in my feet, they seem to be worse when I am at rest. I don't know if I just don't notice them when I am busy (which I try to stay), but they are bad. I have followed my drs. order and increased my mirapex to 3 mg / day. I don't think my spasms are any better and unfortunately, I am now noticing chest pains and a rapid heart beat. I don't know what to do, I will call my dr. again Monday
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brooksie
37 posts
Jul 05, 2009
6:05 PM
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Hi Kelly, We do have a lot in common! My little one was born March 17th- he is a sweetie and brings such joy; I can't imagine life without him. I find that pregnancy made my PD a little worse, but not too bad. I'm also having a med issue. I'm not responding as well to Mirapex (I'm on .5 three x a day) post-delivery. I have many more side effects with meds than I ever had before: the Mirapex causes muscular stiffness plus a strange kind of vertigo sensation. I had to stop taking Azilect because it caused all over intense joint pain- what fun! As if we didn't have enough to deal with ;) I also notice that instead of easing wearing off of my Sinemet, Mirapex seems to make it worse! The more intense symptoms you are experiencing may have to do with meds- I encourage you to post this in the Pharmacist's forum. Keep pestering your neuro! You need too be absolutely confident and at ease with him or her. My doc saw me through pregnancy, and she e-mails or calls when needed. Document all your symptom changes and discuss. If he/she seems in the least bit dismissive...get a second opinion. Hang in there!
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