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What Kinds Of Symptoms Do You Feel During Your OFF Times?

A MyParkinsonsTeam Member asked a question 💭
Tampa, FL

And how do you deal with them and what do you do during these off times? Bean

January 22, 2021
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A MyParkinsonsTeam Member

My off times starts with weakness which makes it hard to control the tremors. I’m a painter but i stop when i get an off time. I àso find my neck feels as if i had my head lowered all day and just lifted my head . The back of my neck is sore and giving it a message tendsto help

January 29, 2021
A MyParkinsonsTeam Member

I feel very slow when I get up in the morning. I take my meds andI use the Inbreja.. it is two pills that you put in an inhaler. It helps bringing up the phlegm that keeps me from being able to swallow. It takes me about an hour and jthen I go into my hot tub and do my exercises.
. Then I feel a lot better. It doesn’t last all day though but at least I can start the day off right.. I put some pain killer on my back after the hot tub.
That is all I know to do I take my meds thru the day and just hope that I will feel good enough to make meals and other things that need to be done. Hope this helps. My dog sticks right by me, but he is disgusted too.

February 9, 2021
A MyParkinsonsTeam Member

My right arm/hand has tremors it seems like all the time now. It seems like it’s getting worse. I can’t tell if the cabadopia (I know I spelled that wrong) helps any but I take it 4 times a day. Sometimes my arm shakes so bad that it hurts the inside of my arm BAD. I’ve had these tremors on my right arm for around 4/5 years now. I haven’t got them anywhere else, just my right arm.

January 29, 2021
A MyParkinsonsTeam Member

Hi,
I will keep you informed. We are having DBS this March. Jeff is 64 and his medicine is maxed and he is having bradykinesia and dyskinesia more often . He has passed the tests and is a good/excellent candidate.
IN the past, We asked often about DBS and since the medicine was providing a quality of life with medicine that kept PD in the backseat we did not pursue it. The operation put us off.
Since retirement for Jeff, now 5 years, the last year has been a struggle and the pain to no pain left the 50/50 range into 70/30 ratio. This. is my view as the caregiver. My husband may say a different ratio and I may ask him tonight.
Anyhow, exercise is still the key to good days and bad days. I think the Keto diet is suggested for Parkinson but am guessing at that.
I just know now that my husband keeps putting me in the frontline of life and keeps retiring to the backline. I am doing more and he is doing less. It is difficult to balance for me to say, "no" you do this or you will lose this.
I am rambling now, the point is I may not want to put DBS off if the medicine do not work. You must have the triad they espouse. Neurologist, Movement disorder Doctor, physician.

January 29, 2021
A MyParkinsonsTeam Member

I meditate too and I believe it helps!

January 29, 2021

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