Newly diagnosed with Parkinson

Thanks Teresa - good to talk with you too. 
Do you know how to fix my tag?
No other therapy besides loud - as far as I know. My therapist is certified in a number of techniques so she might have slipped in an exercise or two outside of the Loud therapy. My swallowing is better but still an issue. 

@lsdemspey Steve, I'm not sure how to fix your tab - let me check with @johnbishop another Mentor and see if he knows what can be done to change it.

Teresa

Hi Steve, You'll see that your @username has now been corrected to @lsdempsey.

Hello @napier

Welcome to Mayo Connect! I am Teresa, a volunteer mentor with Connect and also a Parkinson's patient. I'm pleased that you found our online discussion regarding Parkinson's.

How long ago were you diagnosed? I take it that you are currently just exercising and not using meds?

Have you taken the Big exercise program through a physical therapist trained in the LSVT Big Program? Here is a link to a Youtube video introducing the LSVT Big program, https://www.youtube.com/watch?v=fpTqcWs2NUY

I had not heard of "Big Hand" before however, I did find a hand exercise program on Youtube, here is the link,
https://www.youtube.com/watch?v=Ez2GeaMa4c8 I have tried it and it is quite good.

Do you have any problems with your handwriting (becoming very small, etc.)?

I look forward to getting to know you better and having you share about your experiences with PD on Connect.

Teresa

Hello Teresa, thank you for this. Is there a mechanism for us to have a brief private message or phone call, please?

@napier

While Connect does not encourage private messages because it is important for the whole Connect Community to be part of discussions you can private message me if you wish. At the top of the screen you will see an envelope. Just click on that and it will take you to the Private Message feature. You then click on "Compose" and put in the user name (in my case, @hopeful33250) and then fill in the subject line, and the message area. I will answer within a day or so.

Teresa

I have had PD at ripe old age “49” and now I’m “64” . Early PD! Anyway, I’d like to know more about the thiamine regiment. I taught aerobics for “26” and then PD. At first I only noticed slight signs with PD. It was about “8” years before it really kicked in. I’ve had DBS and it worked really well for about 3years. It still helps but I use sinement which on a regular basis . It’s a long story . I exercise 3 x a wk but my balance is still suffering at times. Does anyone have problems regulating with Sinement carbadopa/ levodopa. I’ve had a Neurologist who monitors my progression. Anyway, that’s a little of my story.

"about the thiamine regimen.." facebook
parkinson's high dose thiamine hcl
https://www.facebook.com/groups/232260083958797/about/

Hello @jansheridantfac

I see that this is your first post on Connect, welcome! I am sorry to hear that you are having problems regulating your Sinemet.

Our stories sound very similar. My PD symptoms began at the same age as yours, however, it wasn't easy to diagnose (no tremors then and still none now, etc.). The first neurologist I saw thought it was early stage MS, the second one said early stage PD and the third said I might not know until my symptoms got worse. To make a long story short, when my symptoms did get worse (mainly balance and foot dragging) I saw another neurologist who put me on Sinemet and there was a vast improvement.

My symptoms now tend to be minor compared to what you report. One suggestion (you might have already tried this) is to add Stalevo to your drug regimen. Stalevo has the same ingredients as Sinemet, but one additional ingredient, Entacapone, which makes the drug last longer. You can also take Entacapone alone and add it to your Sinemet. The cost of this med has increased significantly over the past two years. (Drat those drug companies and their arbitrary increase in price of older medications which should all be Tier 1 - but I digress).

Another thought, I live in SE Michigan and I have a friend who has used a Sinemet pump (part of a clinical trial). It works quite well for her. I'm not sure if it will be on the market as a result of the clinical trial, but you could look into it. It works somewhat like an insulin pump and gives you a steady stream of the med.

Since you exercise on a regular basis you are probably familiar with the BIG program both for movement and voice and you have probably been involved in Physical Therapy. I find that my need for PT is about twice annually as my balance and general coordination tend to decrease without that constant treatment.

I look forward to hearing from you again, @jansheridantfac ! If there are any other questions or thoughts you have will you please post them?

Just wondering (and only if you want to share more) has your sleep, handwriting or voice been affected by your PD?

Teresa

My story is very similar! Diagnosed at same age and had DBS 5 years ago. 2 yrs ago had battery change and now need another one! Anyone else going through batteries so quickly?