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Twitchy mama

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I have recently been diagnosed with PD and am struggling to accept this new reality. I think it will take a while to sink in that this is forever - certainly not the retirement we were looking forward to! We are finding it difficult to tell friends and family - most are supportive. We went to a support group meeting last week and that was terrifying to see folks in much more advanced stages - it's hard to anticipate where we will be in a year or five years. On the bright side, I. Am feeling so much better on meds than I have in months! We have found a great neurologist who is starting us on the path.

I have enjoyed reading most of the posts on the forum and feel less alone than I did initially. So if I may walk alongside with you . . .

Twitchy mama

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Glad you found us and that you are feeling better with medication.  I remember that feeling well.  We look forward to having you as a regular and learning more about you and your family.  Take care,  Gardener

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Welcome Twitchy Mama. I was diagnosed 1 year ago, so what you are feeling and going through is still fresh in my mind. It took me a long time to realize that I was more than Parkinson's disease. I am now Adam, who happens to have PD.  

 

Hang in there and feel free to ask anything you would like. We have just about one of everyone here. Good luck

 

 

Blessings

Adam

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Thanks Adam for reminding me tHat I am more than PD - I seem to have lost myself! Janie - with a twitch!

It's good to have folks to walk with - thank you for being here.

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Just watch out for this weirdo that hangs out around here.... he's a little bit odd, and his sense of humor?? let's just say that it can be strange sometimes...........

Oh wait, that would be me...... never mind............. carry on........ this disease will do that to ya sometimes when you've had it long enough.......... <snicker>

Edited by AB-Normal
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Welcome Twitchy Mama...I like that name!

 

We have all been in the mental stage you're in now..the accepting phase..sucks doesn't it!! It took me a few months to even think about it without breaking down along side with my husband...it takes a toll on ya...

 

I'm not doing support groups for the exact reason you pointed out...I don't find it healthy for myself to stare my future in the face...some may call it denial, I call self preservation ....

 

You need to keep in mind at all times that one persons Parkinsons is not yours...we are all different..some progress faster then others some get non motor symptoms while others don't and so on. Don't compare yourself to the others at the support group..BIG mental mistake.

 

The greatest support is the family here..the people are fantastic and we are always available to answer questions, comfort you and at times give your head a shake when needed!!

 

Post often and relax...I'm less then two years and I'm still trying to adapt...the good thing is I have accepted it...this is the biggest hurdle but you must and will get there too...

 

Just trust in your self that you will handle this disease ....take each day as it comes....find love joy and most of all laughter in everyday and you'll be good to go!!!

 

My best to you,

Discovery

Edited by Discovery
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I wrote a response on. Another post about the top ten things I wish I could tell every newbie..

 

http://forum.parkinson.org/index.php?/topic/19873-newly-diagnosed/?p=102066

 

(I hope the link works..I'm not sure how to repost)

 

I'm 10.5 years since dx. -- still a PERSON with PD, not a PATIENT with PD.

 

Exercise is key to keeping yourself as far away from becoming a patient as possible.

 

I hope this helps you to be hopeful!

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I am 5 years since dx

One of the best in my yoga class. Can stand on my head or stand on one leg for 2-3 minutes, easily reach floor with my palms, etc

Do most of the work in the house, driving

This year flew twice from Tel Aviv to Redmond OR (25-30 hour flights with 2 connections) and back

 

Don't allow yourself to be weak! The more you move the better you feel

 

Good luck and welcome)

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Sorry your here but as you probably already noticed if you have PD this is the place to be ! Thing that I have noticed and I don't know if it's just me but if I let it get to me mentally I feel worse physically. I was diagnosed back in June but have had symptoms for several years . I have already taken a lot of info from here . There are a bunch of knowledgeable and caring people here ,so welcome ! Dan

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I strongly agree agree with point 4. made by CindyB.

Support groups are excellent, but make sure you are in a group where members are in the same stages of progression.  Seeing a Stage 3 PWP was devastating to me. It is decades away, why put ourselves there unnecessarily. Better focus on living fully in the present. It is the only place happiness can really be found. The future can be scary, uncertain, gloomy; the past will only foster nostalgia.  I deal with PD as follows:

1. Keep a positive attitude

2. Exercises every day

3. Medicate (educate yourseslf and seek to find the perfect med cocktail for you)

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Hey Twitch! So where in Florida are you?

I agree with others...don't worry too much about what MAY happen. You will never feel better than you do right now, so have as much fun as you can. Party, laugh, travel, see movies, go to the beach...whatever. I am literally having more fun now than I have for the last 10 years.

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I'm 10.5 years since dx. -- still a PERSON with PD, not a PATIENT with PD.

 

Exercise is key to keeping yourself as far away from becoming a patient as possible.

Yep!

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I think the "support" group issue boils down to what type of "support" group you attend.  If you attend a group where they sit around and whine about their problems, then that could certainly be depressing.  On the other hand, if you attend a "support" group where the people are exercising and fighting their disease, that can be uplifting and encouraging.  When you attend a Delay the Disease group, Rock Steady Boxing group, or any other group where people are getting BETTER and slowing the progression of their disease, that is exciting.  When you attend a group where people have had their disease 10 or 15 years and are still self-sufficient and have actually reduced their medication or aren't taking any medication, you see that living a normal life is possible if you are willing to put in the work!

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I agree Patriot...if the support group is proactive with PD issues GREAT.....but if it's a round table discussion of wows then take a pass...

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I was feeling guilty about the support group but I like all your ideas better - I will look for folks who are living life to the max. Boxing must be the new hot exercise for PD because everyone is telling me about it! Somehow I don't see myself taking up boxing, but who knows!

MM, I am in North Port, almost neighbors. I am trying to make each day a good day and not focus on what is down the road - difficult for a person who always has a plan!!! I have discovered the delay the disease DVDs and they are great. Just remember that "life is good"

Twitch

Ps does the inside twitching ever stop? So days I feel like I'm going to jump out of my skin!

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I strongly agree agree with point 4. made by CindyB.

Support groups are excellent, but make sure you are in a group where members are in the same stages of progression.  Seeing a Stage 3 PWP was devastating to me. It is decades away, why put ourselves there unnecessarily. Better focus on living fully in the present. It is the only place happiness can really be found. The future can be scary, uncertain, gloomy; the past will only foster nostalgia.  I deal with PD as follows:

1. Keep a positive attitude

2. Exercises every day

3. Medicate (educate yourseslf and seek to find the perfect med cocktail for you)

 

Definitely agree with 1,2,3!

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I have recently been diagnosed with PD and am struggling to accept this new reality. I think it will take a while to sink in that this is forever - certainly not the retirement we were looking forward to! We are finding it difficult to tell friends and family - most are supportive. We went to a support group meeting last week and that was terrifying to see folks in much more advanced stages - it's hard to anticipate where we will be in a year or five years. On the bright side, I. Am feeling so much better on meds than I have in months! We have found a great neurologist who is starting us on the path.

I have enjoyed reading most of the posts on the forum and feel less alone than I did initially. So if I may walk alongside with you . . .

Twitchy mama

As long as you walk slow and drag a foot then grab your cane and I will race you. Just kidding. Sorry you had to search us out but glad you found us twitchy we need some new people as it's been getting slow around here.
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I was feeling guilty about the support group but I like all your ideas better - I will look for folks who are living life to the max. Boxing must be the new hot exercise for PD because everyone is telling me about it! Somehow I don't see myself taking up boxing, but who knows!

MM, I am in North Port, almost neighbors. I am trying to make each day a good day and not focus on what is down the road - difficult for a person who always has a plan!!! I have discovered the delay the disease DVDs and they are great. Just remember that "life is good"

Twitch

Ps does the inside twitching ever stop? So days I feel like I'm going to jump out of my skin!

Not sure if it ever stops but you kind of get use to it.

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