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Parkinson's

9K views 73 replies 42 participants last post by  Missy 
#1 ·
This was not a good week. On Wednesday I was to see a neurologist about some issues I was having ,especially with my left arm. Turns out he's pretty sure I have the early signs of Parkinson's. My wife has given me a couple of articles to read . I haven't quite found the courage to read them yet lol. But I was wondering if I could find a buddy on the forum that has this disease so I could share and learn. Please email me privately if you're up to it. Thanks Dave .
 
#2 ·
I'm so sorry to hear this Dave. You seem like a person with a positive attitude in general, and that is half the battle!!I have lots of health problems, and trying not to let them get you darn is very hard sometimes. Hope you find a buddy to share and learn with.
 
#3 ·
Thanks Evelyn, yeah thank God for our spouses family and dogs.
 
#4 ·
Sorry to hear that, Dave. My RA and Fibromyalgia do get me down sometimes but it's nice to have others that relate so I do hope you can find someone here. There is also a magazine called Neurology Now that is free and I can get it on my ipad, too. Do a search on it and see if you can view it online, too. There was a good article on Parkinson's in this past issue - not the new one. You should be able to read older issues, too. It has a lot of interesting things in it and I got it originally after my son had a TBI from a car accident ten years ago.
 
#8 ·
Thanks for the info Kathie. So far in my 60 years I've only witnessed physical distress as Gwen has had Fibro and arthritis etc for years. Now I will need the strength to deal with it personally. We truly rely on others for support and thanks for yours.
 
#6 ·
So sorry to hear that, Dave. These chronic diseases (I have RA) are just miserable. It took me a long time to come to terms with my new, lower levels of physical ability. Kodi was a HUGE help in that process.

You are right to look for some peer support from others who walk in exactly the same shoes you do. While all of us with auto-immune diseases have things in common (I think Parkinson's is one of those, isn't it?) each disease affects different parts of our bodies, as do the treatments. It helps to have people who have been though it to talk it through with.

And remember, we're all here for you too!:hug:
 
#9 ·
Thanks Sheri Karen and Tracy Hugs for your support.
 
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#10 ·
thanks Karen, yep that's about the extent of my knowledge, Michael is certainly an inspiration.
 
#11 ·
Dave,
I am so sorry to hear this. I know it must be so difficult for you right now. I wish I could offer you some information, but I don't know anything about the disease. I hope someone here can help you. You have the love and support of all of us here:)

xoxo my friend
 
#12 ·
hugs Linda.
 
#13 · (Edited)
Oh Dave :( I am so sorry to read this. Like Kathie and Karen I can offer support for having something chronic, but no specific info on Parkinson's. Someone very wise on this forum suggested I find a Lyme forum... And at first I was like, "these people are crazy and much sicker than me" But I have learned a lot from them. I will say... Take everything you read on-line with caution, and take it slow online, it can be overwhelming. It's good to gather ideas, but be sure to discuss with your doctor.

Perhaps because they have found it so early, there is more they can do to slow it down.

I'm keeping you in my thoughts.
 
#16 ·
thanks Donnie.
 
#15 ·
Thanks Missy. I agree, there's a lot of poor advice online. I usually refer to sites like government or hospital sites when it comes to health.
 
#18 ·
Dave - I'm a Rehab nurse and have a lot of neuro experience, and so, I might be able to answer some of your questions . . .

But, first, don't jump to MJ Fox just yet. He acquired the disease very young. In itself, that makes his situation different. And, he has had it a long time now. I don't know how old you are, but I suspect you and I are contemporaries. That means you are not in MJF's boat.

Secondly, don't try to "swallow" the whole disease. You have a neurologist. If you have a good relationship with him (or think you can) listen to him/her. [If not, find another]

For now, there are a few things you can start with:
1. Understand what is happening with your hand
2. Learn how that is caused by Parkinson's
3. Learn about how the chemical L-dopa works in the brain
4. Learn how medications are used to minimize the symptoms caused by a depletion of l-dopa
5. Learn the value of exercise and rest
6. Talk to your neurologist - pick his brain

In other words, Dave, once you have gotten yourself past the initial shock, do what you always do -- read, study, talk to everyone and anyone, but don't assume that everything you read or hear applies to you. [Missy was wise to advise you to take things slowly.] Let your doctor help to sort out myth from truth -- and to understand what you need to consider and what to dismiss.

You are smart to look for someone who is steps ahead of you on this path. Many of us understand chronic illness and disability, but, I hope, someone can help you more specifically.

Understand that we are here for you -- to help as we can and to tell you to focus on all of your positives while you work on the not so good.
 
#19 ·
Secondly, don't try to "swallow" the whole disease. You have a neurologist. If you have a good relationship with him (or think you can) listen to him/her. [If not, find another]
I think this is particularly good advice. I was REALLY lucky to have a good rheumatologist from the start. But I hear from so many other people with RA who are in much worse shape than I am, partly because they didn't have docs they felt they could develop a true partnership with, and therefore didn't get as good treatment, as fast as I did. With all progressive diseases, it's important to learn how to slow that progression as much as possible. For each person, that is a little (or a lot) different, and it takes a lot of good communication between you and your doc to get it right.
 
#20 ·
So sorry to hear the news, Dave. My father was diagnosed with Parkinson's when in his 80s and did quite well with it, as it was controlled with medication. He lived alone after my mother passed, when he was 87, and was able to take care of himself until he was 91 and broke his hip. (This was not related to his Parkinson's. He actually was in the hospital due to a UTI and fell out of bed). He lived until he was 93. I hope I have his genes for long life.

I know it's a scary diagnosis but be strong. I wish you all the best. We're all pulling for you.
 
#21 ·
So sorry DAve, Beau's mom give's good advice. First, get to a good neurologist that has an interest/specialty in parkinsons. THere are lots in ONtario and I'm sure you are already seeing one/been referred. Don't be afraid to seek a second opinion if you don't have a good relationship with your doctor. It is good to seek others that are going thru the same thing, however, realize that many diseases present differently in different people, so that someone else's experience is not always the same as yours. Educate yourself, but be careful about the sources you use and make sure if you're online that the source is from a university or hospital and that the information is valid.

Sending you hugs. You have a chronic illness, but that doesn't define who you are. And, your puppy doesn't care if you have a tremor, she will still lick your nose and curl up on your lap just the same. take care.
 
#22 ·
Oh Dave, I'm sorry,it's a lot to take in, good advise above from others, take your time with information. Getting such a diagnosis is just such a shock in the beginning it takes a while to absorb it. My partner was very ill with a serious neurological illness, very like Parkinson's, and my best friend has been diagnosed with Parkinson's. So I do have some close experience though I have not been sick myself. Take your time, reaching out to others for both you and your wife will be helpful. I'm sure there are P support groups in your area too. Because of MJFox there is new research being done all the time! Thinking of you and Gwen.
 
#23 ·
Oh my gosh Dave, I am so saddened to read this news! :(

I will be praying for you, I too know how hard to it is to be given a diagnosis of a chronis lifelong condition. The "good news" is now that you know hopefully you can work with your dr's to control syptoms and slow progression.
We are all here for you cheering you on! (((HUGS)))
 
#25 ·
Saddened to read this-the Dr I used to work for has Parkinson's. He is about my age-67-he did retire but is still doing good. Just take one day at a time-cross one bridge as it comes-you have a dr I am sure you trust-most important-and you study everything so that is a good start. Though I don't know a lot about Parkinson's so am no help there just know we are here for you to lend a shoulder when you need us.
 
#27 ·
Dave - My husband was diagnosed in June 2011 with PD. It IS scary at first but you will get past that. It is a matter of getting used to the "new normal" ! I want to encourage you about the future. They have really good meds available and Jack is doing very well. He takes carbidopa/levodopa and the last time we saw the doctor he said that he could not even tell he had it! (There are a lot of people praying for him I must add ! )
 
#31 ·
yep
 
#30 ·
To Lynne, Lorraine, Mary , Tuss (wish I knew your first name lol ), Jody,Tammy, Tere,Pat , Beth and Anne, thanks so much. Sorry I can't answer you folks individually, you've got me crying. Thank God for you people, you don't know how much you mean to me. Your replies are wonderful and will definitely be helpful. I will take one day at a time, and I hope God will help my family through this. God bless all of you. Where the hell did the group hug icon go? :grouphug: lol
 
#32 ·
Ah Dave that's not a fun thing to hear. I'm hoping you found a buddy on the forum to talk with to share and learn. I have a friend who's doctor miss diagnosed her with a bad cancer. She was given a year to live with no treatment. Well it turned out she didn't progress like he thought and she never did have what he said. I guess I'm just praying he may be wrong. What kind of test is it? If you don't mind sharing?:hug:
 
#34 ·
Thanks Suzi, actually there is no definitive test. It's more or less a determination from the symptoms. Mind you they do rule out things with a bunch of electrical shocks and dexterity tests. Funny thing is I can do push ups ,lift a heavy box , but have a hard time tightening the lid on a jar with my left arm. He noticed a bit of a slow left leg when I walk and sometimes my speech is softer. I guess it's the combination of tests ,but there is no blood test or MRI test that shows something definitive. I have a lot to learn , as this is pretty sketchy right now.
 
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