Chronic Health Conditions Discussion and Support

Easterncedar

(3,469 posts)

22. Getting the diagnosis is a shock. It takes time to get oriented to the new reality.

Reply to LastLiberal in PalmSprings (Original post)

Sat Nov 2, 2024, 07:14 AM

Nov 2

Be kind to yourself as much as you can.

The best online support community I know is based in the UK - healthunlocked.com. It provides community support for all kinds of movement disorders. It was a lifesaver for me when my beloved sweetheart was diagnosed with a rare neurological disease often misdiagnosed as Parkinson’s. There are people there from all over the world, so someone is usually awake when you are! It has great information and links to more. It has people who are navigating this just as you are. I made real friends there.

We had good results from two physical therapy programs. If you can find a therapist certified in LSVT Big (for movement) or LSVT Loud (for speech), I recommend getting started on these or whatever other physical therapy you might like as soon as you feel ready. Your doctor should be able to help with that. There are online resources for them, too. We saw wonderful results with them and I liked doing the exercises along with my guy at home.

It’s a lot to take in, but please be encouraged; you are not alone with this, and there are advances in treatment being developed all the time. Hang on!

I am glad you reached out. Good first step! Best wishes

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I was just diagnosed with Parkinson's disease. [View all] LastLiberal in PalmSprings Nov 2 OP

I have no words of wisdom, but hope displacedvermoter Nov 2 #1

Thank you. LastLiberal in PalmSprings Nov 2 #17

I'm so very sorry to hear that DarthDem Nov 2 #2

Thank you for the encouraging words and information. LastLiberal in PalmSprings Nov 2 #7

You are so, so, so very welcome. DarthDem Nov 2 #38

aw fuck... markie Nov 2 #3

Those were my exact words when the doctor gave me the news. LastLiberal in PalmSprings Nov 2 #15

Sorry to hear, a difficult thing to be told bucolic_frolic Nov 2 #4

Oh, sweetie crickets Nov 2 #5

I am so sorry to hear that jfz9580m Nov 2 #6

Research online SheltieLover Nov 2 #8

That's very rough; you have my sympathy. As someone who works on the forefront of drug development... NNadir Nov 2 #9

Are you eligible for deep-brain stimulation surgery? True Dough Nov 2 #10

60 Minutes did a great story on this. The results are miraculous. Native Nov 2 #36

I have a colleague who found people who had cured their Parkinson's MadameButterfly Nov 2 #11

I'll check these resources out. LastLiberal in PalmSprings Nov 2 #39

Not everyone is open, so it's great that you are MadameButterfly Nov 2 #52

(((hugs))) samnsara Nov 2 #12

Wow. Sorry for the news. 70sEraVet Nov 2 #13

Now that's hard for anyone to hear. As NNadir said in a previous post, there is definitely hope. BComplex Nov 2 #14

DUers are empathetic, knowledgeable and supportive. LastLiberal in PalmSprings Nov 2 #40

I'm so sorry. When you feel like discussing, I'd like to sinkingfeeling Nov 2 #16

I'm pretty open about stuff like this. LastLiberal in PalmSprings Nov 2 #41

This is treatable and manageable with medications.... FarPoint Nov 2 #18

This is a great time to be alive, medically. LastLiberal in PalmSprings Nov 2 #42

I am so sorry to hear this... Trueblue Texan Nov 2 #19

what are Big and Loud exercises? LymphocyteLover Nov 2 #21

LSVT Big and LSVT Loud are great physical therapy programs Easterncedar Nov 2 #23

They are copyrighted but... Trueblue Texan Nov 3 #62

Thank you for your encouraging words. LastLiberal in PalmSprings Nov 2 #44

I'm so sorry. I don't know much about treatment of the disease but I hope you can get the best care possible. LymphocyteLover Nov 2 #20

Thank you. I'm definitely getting the best care available -- my wife. LastLiberal in PalmSprings Nov 2 #45

Getting the diagnosis is a shock. It takes time to get oriented to the new reality. Easterncedar Nov 2 #22

Thank you. Your words are encouraging and informative. LastLiberal in PalmSprings Nov 2 #46

It was amazing to hear my guy's voice after an appointment Easterncedar Nov 2 #50

Hugs to you, my friend. HeartsCanHope Nov 2 #24

Thank you for your kind words and suggested support resources. LastLiberal in PalmSprings Nov 2 #47

Fight it! My local news did a story about a boxing program for Parkinsons patients. tanyev Nov 2 #25

That really sucks Horse with no Name Nov 2 #26

What a great list of information. LastLiberal in PalmSprings Nov 3 #59

I'm sorry cate94 Nov 2 #27

That sucks. Dear_Prudence Nov 2 #28

Keep on keepin on. Hope22 Nov 2 #29

You are doing the right thing... blue sky at night Nov 2 #30

OMG. I am so sorry to hear this. The only thing I can say is that they are coming up with such amazing ratchiweenie Nov 2 #31

Just hugs, prayers, positive thoughts, and love. a kennedy Nov 2 #32

I am so sorry to hear this. Still, be hopeful. jrthin Nov 2 #33

I'm so sorry XanaDUer2 Nov 2 #34

I'm so so sorry. I wish the best for you. I have MS and I empathize with you. I have been taking NAC as a supplement LiberalLoner Nov 2 #35

I know someone with PD Lulu KC Nov 2 #37

NAC is fantastic. It has saved me from bronchitis and covid. Clouds Passing Nov 2 #49

Sorry to hear this diagnosis leighbythesea2 Nov 2 #43

Exercise, especially tai chi for balance, yoga, mix it up, stay with it daily. Clouds Passing Nov 2 #48

Godspeed Groundhawg Nov 2 #51

I'm so sorry kimbutgar Nov 2 #53

So much study and research going into this disease. SleeplessinSoCal Nov 2 #54

Science is my friend. LastLiberal in PalmSprings Nov 3 #60

That is a tough diagnosis to get. I wish you strength for your journey. LoisB Nov 2 #55

Big hug to ya. Eko Nov 2 #56

My Dad has lived with it for 20 years AwakeAtLast Nov 2 #57

Your Dad is an inspiration. LastLiberal in PalmSprings Nov 3 #61

Well.....crap Bayard Nov 2 #58