I have had Parkinson' for 7 yrs, 10yrs co... - Cure Parkinson's

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I have had Parkinson' for 7 yrs, 10yrs counting I the three yrs it took them to finds out what I had. The reason I am writingi tyo find ou

1mrnhenry profile image
19 Replies

does anyone ever live a normal day.?i mean I am going to right therapy now I come home and I feel like I am dying right in front of.veryone around me. Tell me how you feel please

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1mrnhenry
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19 Replies

Speaking for my self, normal is the past. I worry everyday for what my tomorrows will be.

1mrnhenry profile image
1mrnhenry

I could not function at alli have to take 2 pills every two hours

honeycombe3 profile image
honeycombe3 in reply to 1mrnhenry

I have looked online at your meds & I am amazed that you can function at all if that is all you are taking, especially after 10yrs. My regime is similar to BillDavid & many others with whom I am familiar: Requip (or another agonist) 3x daily, Sinemet (in some form) 3x daily & possibly other complimentary meds. The following is from info by the producer on the internet:

Information specific to: Sinemet 10mg/100mg tablets when used in Parkinson's disease.

'•people starting treatment with this form of this medicine will normally be prescribed a low dose. The dose will then be gradually increased.' If you do not think it is working, then talk to your prescriber. You need to talk to your prescriber. From the same site: Sinemet is also available as:

•Half Sinemet CR 25mg/100mg tablets

•Sinemet CR 50mg/200mg tablets

•Sinemet Plus 25mg/100mg tablets

•Sinemet 12.5mg/50mg tablets

•Sinemet 25mg/250mg tablets

Perhaps an increase using stronger doses less frequently would suit you - this is the norm.

honeycombe3 profile image
honeycombe3

No, I don't have all normal days...after 10 yrs dx like you I live from day to day. You say you are taking meds every 2 hours to keep going. Can you tell us what meds you take? That seems an awful lot. I take Requip XL 10 mgx a day & Sinemet plus 6mg daily. This keeps me from too much tremor &/ or freezing so my mobility is not too bad. I find the cognitive & emotional problems the worst. At the moment I mostly have good days after a spell of 6 months pain & depression. During that time I hardly went out.

1mrnhenry profile image
1mrnhenry in reply to honeycombe3

Well I take carbidopal/levodopa10/100 not very strong but so many of them. I am having a horrible time getting to sleep how about you?do you have a hard time

1mrnhenry profile image
1mrnhenry in reply to honeycombe3

My god I feel sorry for myself and now you have me thanking God for not being too tough on me. God bless you

BillDavid profile image
BillDavid

Hi I am 10 years out from diagnosis. Meds 1 mg Requip x 3, 25/100 Sinemet x 3 , 5mg Selegiline x 2.....Forced Exercise with TheraCycle, LSVT BIG Exercises, other stretching and strength muscle exercises most days. Biggest hassle is posture which effects forward balance. Use cane for walking because of bad knee, also limited by COPD. Most days are fine. For myself question....is your cup half full or half empty.....for myself half full. Deal with Stress using Benson Meditation and Relaxation Techniques. My Christian beliefs are strong support.

BillDavid

movinngroovin profile image
movinngroovin in reply to BillDavid

GREAT JOB MY FRIEND!

Pete-1 profile image
Pete-1

Sometimes have a day that isn't too bad. Usually have a good day if I have remembered to take medication strictly (well nearly) on time and have been able to stay active most of the day. Also sometimes take a couple of paracetamol. This takes the edge off pain from muscles that have been stiff and so aids movement

Forget tomorrow. live today! Do your best that is all you can do. I think we are all in the same boat (probably with a leak in it somewhere, so we are sinking slowly) somedays are stormy, some calm. Thats life (and British weather)

As my old Gran used to say ''Trust in the Lord and keep your Bowels open''. Keep knockin' on an' minding t' trams.

Make time for a good laugh in the day, if nothing else it will exercise your facial muscles.

rch21 profile image
rch21

A friend with MS said to me some time ago that his better days were his new :normal:. That works for me. My better days are my baseline now. That will change, but it lets me tell myself how I am relative to other days around that time. Each day differs, but for now the baseline includes certain limitations compared to a few years ago (such as not driving), taking lots of meds and not sleeping much. It also includes what I can do, including getting up in the morning (or night), exercise, coaching, reading, etc. Then it is just take today for itself.

PatV profile image
PatV

Your question made me realize I don't have a 'normal' or 'new normal' day.

I can do one outing a day, sometimes two if I plan. Planning is the key to everything. I am looking for home health aide. One day at a time!

1mrnhenry profile image
1mrnhenry in reply to PatV

I lie your answer. I don't know how well I feel yet today. I have to be at Physica.,therapy at 4 today I'll write later

Ok Maureen

1mrnhenry profile image
1mrnhenry in reply to PatV

Boy you sound like me. I can't stand how I am feeling this vey minute.maureen

PatV profile image
PatV in reply to 1mrnhenry

Remember it will pass. Focus on what you CAN DO to help yourself, distract yourself, help another person in some tiny way. Just showing up can be encouraging to someone!

racerCP profile image
racerCP

Best days are when you think of TODAY only. Nobody can predict tomorrow anyhow. My mother told me whatever your situation it could be worse so why worry? I hope you play lots of music, move as much as possible and enjoy whatever comes your way.

1mrnhenry profile image
1mrnhenry

a m going to therepyy now too

1mrnhenry profile image
1mrnhenry

I,am also going to therapy now it helps but,when I get home i am totally exhausted . I think every one knows how bad I feel because I always had so much energy. I know you feel like you are dying sometimes I tell God to come get me But he doesn't . Did you ever think this is our Penance on earth and hen hen we do die we go right to heaven. I hope this the right answer don't you? God bless you . Maureen

1mrnhenry profile image
1mrnhenry

In jus wrote a Iong letter did you get it.?

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