New member Damon 4309
 

Hi everyone. I am new and would like to take a few minutes to introduce myself please keep in mind that computer skills are limited.

My first symptom was 2 days before 2000 December 1999. My index finger started shaking. Also my right arm did not swing with walking. DX came in 2005 and was previously called "parkinsonism" The first 10 years a slow progression. When new symptoms developed I was given more medication..
12 months ago I started getting bad. I have to use a wheelchair sometimes I never know when . My "on" time is now less than my "off" time. My life is upside down and I am having problems in every area.

I am 58 and retired on SSDI at 55 about the time my cognitive abilities started
to decline. There are so many thoughts that I want to share. My "meds" are causing hallucinations and I started gambling and all areas of acting out. A few weeks ago my body started to get rigid and turning over in bed is struggle There are days when I appear normal which confuses people because I do not need the wheelchair.
My Sinemet dosage is every two hours as I take the following

25/100 carbo/levo-----23 pills per day.
50/200 carbo/levo........3 pills per day
Entacapone-200 mg 8 x per day.
Requip now reduced to a minimum .25 3 times per day(had been as high as 18mg per day.
I choose not to drive and life has become a prison. I am a type a personality
and just can not accept depression. This disease that began at 44 has destroyed my will to live.

My psychiatrist today said I should exercise and eat healthy.....

Well I have taken up some space and hope to become a part of this forum.
Any advise is appreciated.

Damon

Hi Damon
 

Your situation sounds very familiar, I started out with loss of arm swing. then it was my IV skills-I worked as a firefighter paramedic. I left a career that I loved, it was not a job to me. I wonder are you married? Have kids? what kind of support system do you have? How do you get out and take care of errands? I can attest to the exercise suggestion. It will help beat the depression as well as the PD. I ride an indoor cycle, a spin bike and I don't feel as I need as much meds when I keep riding regularly. So what kind of work did you do? Find something to keep busy with. Strongly consider an antidepressant and get some help, someone you can talk to. Might I suggest getting off the requip. I was compulsive when I took mirapex and I won't do agonists! Not worth it. Where are you from in NJ? I have family in Cranford as well as in PA and on Long Island.
Welcome to the forum, it has been very helpful to me, I joined in 1998 but the old server crashed and lost our info so all of us old timers had to restart.
Best wishes.
Jim

Damon,

Welcome to the forum.

For some people, dopamine agonists, in your case Requip, lead to impulse control problems. Given your experiences, I would discuss with your doctor why you need it at all.

Regarding your levodopa dose, do you really mean 23@100mg plus 3@200mg? That would be very high.

You write that some days you "appear normal". Is that the same as normal? Yet there are days when you need a wheelchair. I would check that your levodopa is being taken in optimum conditions. For instance, eating protein close to the time of the dose reduces the amount of levodopa reaching the brain.

Your psychiatrist is right to recommend exercise. But it is easier said than done. I would recommend an exercise that has a good social component.

You mention depression have you tried "talking therapies", such as cognitive behavioural therapy?

John

Damon,
Jim and John gave excellent advice.
Regarding agonists I too would never take it again due to behavioural issues when on it.
Have you or your neuro discussed DBS?
You're on a lot of levodopa.
i feel a consultation about surgery would be helpful.

introduction
 

Thank you all for your replies

Damon;)

Welcome to the forum...our gang will do all we can to support, encourage give suggestions that have helped them and will make life easier. Yes, exercise and eat healthy. Obtain a copy of Dr Laurie Mischley's Book Natural Therapies for Parkinsons Disease...it it full of information that will encourage and help you know what are good supplements and foods that will help and what to avoid. May God Bless and guide you on your journey with PD Aunt Bean