[stevem53]

Hi Everyone..Welcome New Community Members..We are happy to have you here..Please continue to contribute

I dont have a whole lot to report this week..Ive been keeping myself busy, but I havent really felt very good this week..I seem to have dystonia in my toes on the right foot, and my coordination hasnt been very good..I definately have noticed a decline in motor skills in my left hand now..It is mild compared to my right hand, but it is a change in symptoms nonetheless..I havent helped the situation much by constantly pushing myself physically, and as a result have left myself wide open to increased symptoms due to fatigue, etc..I know its time for a med increase, and have been taking a double dose of Sinamet in the morning if I plan on engaging in high activity, and have taken extra during the day if I feel that I need it, but have only supplimented my basic drug regimen, instead of changing it..This seems to work out ok, and when Im just hanging out I find that I dont need extra meds..Instead of taking extra Sinamet, I used to just suffer it out before

Other than that Ive ben building some new traps and experimenting with a couple of new designs..It keeps me off the streets..

How was your week?

[Suffolkchris]

Steve

Sorry to hear about your week, mine has been physically tough too.

I have also just started to get dystonia in my left toes, my fatigue continues to worsen and, as we are the same age and were diagnosed at around the same time, I wondered what meds you are currently on if you don't mind me asking.

I have just taken the bold step to stop working, for now anyway. If nothing else I need to see what impact it has on my general condition.

Hope you have a better week.

Chris

[stevem53]

This is my basic regimen..and no doubt under medicated

Sinamet 3 x 25/100

Mirapex..2 x .25

If I go out fishing, or plan on engaging in any physically challenging activities, I take a 50/200 Sinamet instead of a 25/100 in the morning..Ive taken as much as 5 x 25/100 on a busy day

[Evon]

Steve and Chris, we seem to be on the same page. Same age, dxs at approximately the same time and having trouble with dystonia and fatigue. I am currently taking Sinemet 25/100 4 x a day, and 14 mgs. of requip a day. In April my MDS switched me to 4 x a day because I had end of dose dystonia after about 3 hours. I push myself to do too much and often feel that I have over done it. Chris, you will probably find you do much better now that you aren't going to work. Stress is not a good thing besides you should take time for yourself now. I find that sleep and exercise have a great impact on how I feel, we need lots of both.

[Todd]

Interesting week so far. My health care provider doesn't have a MDS close to where I live. In fact, they only have one in my entire coverage area which is insane for highly populated Southern California. And the one they do have, it takes 9+ months to get in to see him, takes me 2 hours each way to get to his office (in stop and go traffic the entire way) and he has a horrible reputation as well. So I've been fighting my insurance company to go "out-of-network" to see a local MDS that has been great to me. My local neurology department is horrendously bad, so I have no choice but to fight.

Well, of course my insurance company denied my first request, and then just denied my appeal. So now everything goes off to the State for an Independent Medical Review and a complaint with the Department of Managed Health Care. It's amazing how much I have to fight to get proper care, but I guess it's a fight worth undertaking. This is my health after all and I won't accept sub-par care.

The good news is, we're off to Hawaii for a much needed vacation! The resort we stay at has 4 private lagoons with white sandy beaches and crystal clear water, so I'm looking forward to doing some "floating" in those lagoons. Makes all my aches and pains go away and I almost feel normal!

Have a great week everyone. Aloha!

[Stitcher]

Todd, it is appalling that anyone has to fight for what is right. It is very sad that the MDS that your plan has enlisted to its network has such a poor reputation.

I have been very fortunate to have always been able to find excellent MDS physicians. My first was in Tampa, FL at Tampa General Hospital, then here in Baltimore at the Univ of Maryland, and now I am with an MDS in Philadelphia whom, gratefully, I do also like.

This is one thing about Medicare that is good...no referrals needed to see a doctor of any kind.

It is finally trying to rain here in south central Pennsylvania. The grass is brown everywhere. We need the rain badly.

Sitting around the house with little to do is not an easy thing to do. I have always been so busy in my life...grandchild sitting, stitching guild, always driving somewhere. Once I get registered with the local county transportation system, I will be able to get around better...still waiting for the registration forms to arrive.

I did receive my red shopping cart yesterday. I had ordered it online. I put the wheels on it and today I took it to the local grocery...one block from my home. It was an odd feeling rolling the cart along the sidewalk and through the store...but I am grateful to have the silly red thing...makes lugging groceries home a lot easier...no lugging. Shopping has been problematic since I got home from the hospital and have been unable to drive a car...one must take care not to overload the grocery bags. I was having to carry them home.

Tomorrow I will be walking across town to my psychologist appointment. Good exercise, right?!! My daughter has to be in Harrisburg at the main campus tomorrow, so I can't get a ride with her on her lunch hour.

What a pain it is to not be able to drive a car!!

Have a great week wherever you are in our great wide world!

[Suffolkchris]

Originally Posted by Evon

Steve and Chris, we seem to be on the same page. Same age, dxs at approximately the same time and having trouble with dystonia and fatigue. I am currently taking Sinemet 25/100 4 x a day, and 14 mgs. of requip a day. In April my MDS switched me to 4 x a day because I had end of dose dystonia after about 3 hours. I push myself to do too much and often feel that I have over done it. Chris, you will probably find you do much better now that you aren't going to work. Stress is not a good thing besides you should take time for yourself now. I find that sleep and exercise have a great impact on how I feel, we need lots of both.

Evon

You are right about same page, I also take 4 x 125 Madopar (similar to Sinemet) a day, plus 2 x 100mg Amantadine and I am about to add a low dose of Mirapex to hopefully ease the end of dose dystonia.

Too tired to exercise while I was working so hope this will change now.
Need to get myself as well as possible as am going on a Med cruise in August - first time I will have been abroad since dx and nervous about it to say the least. More than anything i hate the fatigue.

At least when I start Mirapex I have the gambling/sex/shopping obsessions to look forward too ...............................

Chris

[Thelma]

Steven

In a world so filled with hate and killings do you really see any humour in these pictures.

I know I will take a drubbing for saying this but they are sick in that they represent actual living people.

Who knows the influence of such bile out there.

Don't take it personal but really ?????????????????? l

[chasmo]

As a life-long conservative I thought it was humorous, although a little "over the top".

Your comment reminded me of an incident with an old friend on a flight to Memphis. There was a very unhappy baby behind us and my grouchy friend asked the stewardess if she could do something about the noise. The Stewardess said "Don't you like babies?" My friend looked at her with his best menacing glare and said ,"sure I do, frozen, on a stick!"

Single then, I thought it to be uproarously funny, now as a proud father of 5, I still get a chuckle out of it.

my point?? Look for the humor in everything, I guess......

hope you are doing well. you are in my prayers.

big hug up Canada way for you!!

your friend
Charlie

[stevem53]

Originally Posted by Thelma

Steven

In a world so filled with hate and killings do you really see any humour in these pictures.

Because Im a hopeless Bill Maher-Stephen Colbert-Jon Stewart-David Letterman-Conan Obrien-Lewis Black fan

I find humor in satire..Its not to be taken litterally

What can I say?