Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
Sorry everyone. This is going to be pretty lengthy but given that it's my introductory post I have so many questions and don't really know where to start. So please bear with me.
Though my husband is the one w/PD I am doing most of the research. Having only been given a preliminary diagnosis a week ago he is still in the hopeful (denial) stages that it is a pinched nerve, etc.
Having already done extensive research online I am pretty convinced otherwise but at this point feel no need to steal any last hope from him as 1) hope can be one of the strongest medicines available and 2) this didn't start yesterday and so if he needs a bit more time to come to terms with it - then so be it. Can you believe I'm actually relieved to hear it is probably PD as my mind had been reeling that he had ALS or MS?
I had an uncle who suffered from PD from about the mid-1960's to mid 1980's so I'm pretty aware of what to expect.
My first questions here don't concern resources as I've found them in abundance in this short amount of time. There is no end of info on symptoms, diagnosis, treatment, etc. What I am having problems trying to discover (and I realize there is no one-size-fits-all here) is what steps one should take after getting the diagnosis.
To begin with his neurologist says she would only classify this as pre-PD and has advised against meds at this point. I can understand that from the reading I've done but then I see so many posters talking about already being on meds just a few months post-diagnosis. And I saw an article on Medscape.com that says some specialists are now rethinking that waiting notion.
My husband has had a tremor in right hand and foot for about 9 months. I now know from my research that the pain he's had in his neck, the loss of smell, diminished handwriting skills, etc. probably mean that he has had more symptoms than just the tremor. I did make him a list of these things that he gave the doctor so she's aware of them. I don't think he's even aware of all his symptoms that point to this being PD. But again, I feel no need to burden him with that at this early stage. Or should I say - he probably knows but cannot come to grips with it at this point and so I shan't force it upon him right now. Other than the tremors (which are not extreme and pretty much only an embarrassment to him at this point) his daily lifestyle is not affected and I believe I'm currently more incapacitated over worrying about him than he is by the disease.
I do believe from my research that he needs to see a Movement Disorders specialist, if only as an adjunct to his regular neurologist.
I guess just to cut to the chase and get started somewhere - can anyone give me an idea of when or why certain meds should be started? Is it based on symptoms or on time of diagnosis? Should one see a Movement Disorders specialist early on or only when the regular neuro believes it has gotten to that point?
I know my involvement on this forum is going to be a long-term thing and so I don't expect to just sign on this one time and get all the answers I need. I guess alot of this is just my first opportunity to blow off some much built-up anxiety.
Ukelady - not sure about the nic but your avatar looks familiar from another forum I've visited. Is that correct? Is so, it's actually a good feeling for me as it gives me the sense of already 'knowing' you, so to speak.
Again, sorry all for droning on here. Just looking for a little comfort, I guess.
Though my husband is the one w/PD I am doing most of the research. Having only been given a preliminary diagnosis a week ago he is still in the hopeful (denial) stages that it is a pinched nerve, etc.
Having already done extensive research online I am pretty convinced otherwise but at this point feel no need to steal any last hope from him as 1) hope can be one of the strongest medicines available and 2) this didn't start yesterday and so if he needs a bit more time to come to terms with it - then so be it. Can you believe I'm actually relieved to hear it is probably PD as my mind had been reeling that he had ALS or MS?
I had an uncle who suffered from PD from about the mid-1960's to mid 1980's so I'm pretty aware of what to expect.
My first questions here don't concern resources as I've found them in abundance in this short amount of time. There is no end of info on symptoms, diagnosis, treatment, etc. What I am having problems trying to discover (and I realize there is no one-size-fits-all here) is what steps one should take after getting the diagnosis.
To begin with his neurologist says she would only classify this as pre-PD and has advised against meds at this point. I can understand that from the reading I've done but then I see so many posters talking about already being on meds just a few months post-diagnosis. And I saw an article on Medscape.com that says some specialists are now rethinking that waiting notion.
My husband has had a tremor in right hand and foot for about 9 months. I now know from my research that the pain he's had in his neck, the loss of smell, diminished handwriting skills, etc. probably mean that he has had more symptoms than just the tremor. I did make him a list of these things that he gave the doctor so she's aware of them. I don't think he's even aware of all his symptoms that point to this being PD. But again, I feel no need to burden him with that at this early stage. Or should I say - he probably knows but cannot come to grips with it at this point and so I shan't force it upon him right now. Other than the tremors (which are not extreme and pretty much only an embarrassment to him at this point) his daily lifestyle is not affected and I believe I'm currently more incapacitated over worrying about him than he is by the disease.
I do believe from my research that he needs to see a Movement Disorders specialist, if only as an adjunct to his regular neurologist.
I guess just to cut to the chase and get started somewhere - can anyone give me an idea of when or why certain meds should be started? Is it based on symptoms or on time of diagnosis? Should one see a Movement Disorders specialist early on or only when the regular neuro believes it has gotten to that point?
I know my involvement on this forum is going to be a long-term thing and so I don't expect to just sign on this one time and get all the answers I need. I guess alot of this is just my first opportunity to blow off some much built-up anxiety.
Ukelady - not sure about the nic but your avatar looks familiar from another forum I've visited. Is that correct? Is so, it's actually a good feeling for me as it gives me the sense of already 'knowing' you, so to speak.
Again, sorry all for droning on here. Just looking for a little comfort, I guess.
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I miss traveling with my husband. Has anyone found a specific site regarding cruising for widow/widowers or any sightseeing trips. Not interested in being with couples and kids,,,I realize a cruise ship will have a portion size of families and couples, but perhaps they also put together a part of the cruise ship for groups of widows/widowers????
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A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
A movement disorders specialist will be able to work with you and your husband to decide when meds are appropriate. I think the more common approach is to start giving dopamine agonists as soon as the diagnosis is made, but I could be mistaken. My doc told me that I should consider the balance between the side effects of the meds and how well I am able to function. If his lifestyle isn't affected he may not want to start meds yet, but if the tremors embarrass him, he might want to try something to control them. He can always change his mind about taking meds. I think it will be up to him at this point since his symptoms are minor.
As for you, come here to ask ? or to vent as much as you need to. We all are familiar with the difficulties of coping by everyone affected by this disease and we'll help if we can. If we can't help, at least we'll listen. Hang in there.
http://patientslikeme.com/
This part about the meds is where I really get hung up and confused as I understand they don't hold the disease at bay and so if his symptoms are barely imperceptible then why start now? Of course, when I say imperceptible, that means to the naked eye of an observer and not what he is feeling that he might be hiding from me. He already knows I'm watching him like a hawk and so I sometimes am afraid he'll hide things to keep me from worrying.
My husband is not at a point yet where his tremor or other symptoms intefere with shaving, or other tasks, etc. Perhaps this is why the neuro says my husband is kind of like only "pre-PD", although I'm sure technically there can be no such classification. If you have it, then you have it.
She says since these drugs only have a certain amount of time they will work for you that it doesn't make sense to start them until absolutely necessary.
Would all here agree with that? At this point we've only just had the first meeting with her and so even though we were impressed one can never know so soon the level of her knowledge.
Welcome! You are correct; I'm also on PatientsLikeMe, and sometimes Neurotalk and YOPA, and I have a couple of fundraising web sites that I use the same pic on as well. It's the only RECENT picture of me that I like, so I stick with it :)
As far as medication goes, I know there's a lot of controversy about it, but I like my neurologist's point of view. He feels that PD medication has some serious potential side effects, so you have to balance that against your PD symptoms. I started taking Requip right away because my symptoms were interfering in my life (trouble playing the ukulele, for instance) and also because we wanted to see if my symptoms responded to the medication. They did. It's always a balancing act; PD symptoms vs. medication side effects. So, I suspect it will be up to your husband to decide if and when he needs the meds.
Please let us know how things are going, o.k.?
Marian (ukelady)
I'm still trying to figure my way out around here. Don't know if my responses to you and others should come straight through the thread, as a direct reply to your email or what. So please bear with me.
Anyway, I'm really grateful for the kind welcome you've all shown me.
I almost feel guilty trying to correspond on an equal level as I'm only a caretaker. And though I feel pretty overwhelmed and devastated right now I know what I feel is nothing compared to the mix of emotions all of you must deal with on a daily basis.
As time goes on and I become much smarter about this stuff I sure hope I can return the support you've all shown me. I have so much respect and admiration for all of you. If anything can help you all tame this beast that has grabbed hold of your lives, it will be this dogged determination to face it head on as you all are doing.
I can't help but reflect on my poor uncle who got this PD diagnosis even pre L-dopa or this God-send of the Internet. Can you even begin to imagine facing this without this resource we all take so much for granted today? Even though for many of those years I was a child myself, and no one had today's knowledge of this affliction, I feel so guilty for not appreciating or realizing exactly what my uncle and aunt (with 4 young daughters) went through for all of those years.
Just those developments in technology and knowledge themselves in those ensuing years give such hope that similiar strides will be made to help all of you in short order.
Thanks again everyone. I sure hope I can be as good of friend and support down the road as all of you have been to me in just these few days since I signed on.
God bless you all.
I can't imagine what it must have been like for your uncle and patients of that era. I feel so grateful for the treatments and resources we have now!
Keep writing!