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Momof4boys    1

Hello! I am sooo grateful to have found this forum! I'm a 41 year old mom of 4 boys and sadly was officially diagnosed with PD yesterday after receiving the results of a DaT scan... two months ago,  I saw a neurologist who felt I was parkinsonian, and a month later saw another for a second opinion.  She felt I was not Parkinsonian and was certain I have PD, but wanted to send me for the DaT scan as confirmation.  I have been having symptoms for two years ( they started when I was  seven months pregnant) lack of coordination and stiffness in my left hand and foot, rigidity, and slowness of movement.  I also have mild tremors that started a few months ago. I always knew in the back of my mind it was Parkinson's. Although I had mentally prepared  myself for the diagnosis,  it has been very hard for me to accept and my mind goes to dark places.  Will I be able to be an active participant in my kids' activities as they grow up?  Will they embarrassed about my PD as my tremors get worse? Will I be able to continue to work for years down the road? I try so hard not to dwell on the future but I am finding it very challenging.  About a month ago, the neurologist who unofficially diagnosed me, started me on Mirapex and I have increased the dosage three times since then. It has definitely helped a little with the rigidity and stiffness, but I am still having bradykinesia and slight tremors.... she wants me to start on a low-dose of Sinemet  in addition to the Mirapex and honestly I am terrified after having read about possible severe dyskinesias a few years down the road. I have the prescription but have not  started taking it yet.... my symptoms are currently not so bad that  they are severely affecting my life and activities...I am going to call my doctor today and ask if I can just increase the Mirapex instead and not start the Sinemet just yet.....does anyone have advice to give? I am really struggling with this decision!    I should also mention that I have been brisk walking twice daily for a month now and hope to find other activities that interest me and keep me moving, I will not stop!  Thank you all so much for listening and I am so  glad to have found people who can relate to what I'm going through! 

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adams234    242

Hello Momof4boys,

I was diagnosed at age 35 and started on Sinement about 8 months later. Best decision I made. I felt so much better. Like I was 10 years younger. Best thing you can do is research. There is a lot of negative press out there about Sinement (aka Cardopa/levodopa) The latest research show that waiting for fear of dyskinesias is un-founded. Yes those of that are on sinement have a greater chance of having them but it is just part of the progression of this wonderful disease. You will find people who say stay away from it and those like me that say don't wait. Patriot on the forum uses only exercise to treat his symptoms and this works for him. I could not use just exercise seeing as I need some relief from the side effects of the disease just to exercise. Since taking drugs I keep very active and most days people wouldn't be able to tell I have PD.

Yes you will get to do activity with your boys. You may have to adjust the way you do them or plan more time to rest but you can still have an active life. I still work full time and have a full life outside of work. The good news is your boys will grow up with you having the disease and will think nothing of it. If you oldest is old enough to understand a good discussion with him may help.

What has helped me the most..... exercise, staying active, eating healthy, maintaining an active life, working hard on not dwelling on what the future could have been and might be, living for every moment, and planning for the worst while hoping for the best.

I hope this helps.

Feel free to ask me anything

Blessing

Adam  

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LAD    216

Well said Adam! 

Momof4boys-I will reach out to you when I have better access to a computer! For now, welcome to the forum and you will be ok!!

LAD

Edited by LAD
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Linda Garren    752

Hi, Momof4boys.  Welcome to our Parkie family.  :-)

Is the neurologist you are seeing an "MDS" (Movement Disorders Specialist)?  It's very important.

It's also a real plus if the MDS you see is with a university-based teaching and research hospital.

We have found that if you have both of the above two things, you will be in much better stead for your care. They are most likely to be up on the latest research, care, and treatment.

You'll find so many good people here who will be able to give you good advice and information from their experiences. 

Linda

 

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RNwithPD    168
8 hours ago, Momof4boys said:

Will I be able to be an active participant in my kids' activities as they grow up?  Will they embarrassed about my PD as my tremors get worse? Will I be able to continue to work for years down the road?

Welcome!

Yes...it is extremely likely that you will be an active participant in your kids' activities as they grow up. Most young-onset PD patients progress relatively slowly and remain active for a long time.

No...they will not likely be embarrassed about your PD as your tremors get worse. It will be something they see every day while growing up and will most likely not pay much attention to it.

As far as work is concerned, it's highly variable depending on how the disease affects you. 

With respect to the Sinemet and Mirapex, I had exactly the opposite experience. Mirapex was horrible and did little to help. Sinemet has been great for 6 years now.

Hope this helps.

Kevin

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Momof4boys    1

Thank you all sooo much, this really puts my mind at ease!!!! Having the support of people who can relate is invaluable!!!! My neurologist  is a MDS but has only been practicing for a short while (she's in her 30's) and I don't think she's associated with a research hospital....we live in Maine and there is not a big selection of doctors unless I went to Boston maybe....thanks again for welcoming me here, I look forward to being part of this group!!!

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LAD    216

I am a mom of 3 boys, I was diagnosed 3 years ago. It is life changing but it's not going to define you. You choose how to respond to it. With young boys I'm sure you are always on the run. Start exercising....there are lots of different PD specific options. Get your kids involved-let them do it with you. Exercise is the one thing EVERYONE can agree is helpful. I do a program called PWR! (Www.pwr4life.org)and my husband and I take dance lessons.  Find something you like! 

Life will be different but it can still be great. You will keep fighting because you're a mom and that's what we do! 

 

LAD

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Momof4boys    1

Thanks so much LAD, these inspirational stories are what's going to keep me going!!! And my family of course, I can't afford to slow down! I'm  definitely going to look into the PWR program, I could use a new exercise routine....thanks!!! Everyone have a great day!

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LAD    216
2 hours ago, Momof4boys said:

Thanks so much LAD, these inspirational stories are what's going to keep me going!!! And my family of course, I can't afford to slow down! I'm  definitely going to look into the PWR program, I could use a new exercise routine....thanks!!! Everyone have a great day!

You are very welcome. I sent you a personal message. 

LAD

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Momof4boys    1

LAD,  I have not been on here in a few weeks and I see that you have sent me a personal message  but unfortunately I am still trying to figure out how to get it !!!!   Hoping to spend more time on here now that the kids have gone back to school and things have calmed down quite a bit! So happy to  have found you all! 

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LAD    216
10 hours ago, Momof4boys said:

LAD,  I have not been on here in a few weeks and I see that you have sent me a personal message  but unfortunately I am still trying to figure out how to get it !!!!   Hoping to spend more time on here now that the kids have gone back to school and things have calmed down quite a bit! So happy to  have found you all! 

You should be able to Just tap the envelope by your profile picture. I think I was just replying to you😀

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