Hello Marlene, welcome to this friendly & supportive group.... my symptoms vary and some I get every now and then, and that catches me off my guard, like for instance swallowing problems and mumbled speech. With the passing of time some of my symptoms have worsened, my tremors effect my jaw, hands & arms and legs also, fortunately not always at the same time but that does occur now & then, some days it feels like I'm plugged into the electricity supply and that drains my strength....
I have just the 21st year milestone with this awful illness, I have real bad days, bad days and good says also.... I think of it as a journey, and even after a time of deep anxiety and feeling real down I always retain the fighting spirit that I've had from day one... I remain optimistic and yet a little afraid of what comes next, but in the meantime I fight on..

Regards ~ Dirky ;) x

Welcome! I am new to this illness also. I was diagnosed a year ago. I did not have insurance for 6 years, so I don't know when the illness may have started.

I am on Sinemet, Artane and Sinemet ER., and various muscle relaxants and pain meds. Every visit they increase the dosage of the Parkinson meds.. I am in PT every week trying to build up certain muscles to hopefully prevent some of the falls. I am in an electric wheelchair if I have to go very far and in the morning when I am waiting for the meds to kick in.

This has been a very helpful group. I find it inspiring to see members who have had this illness for years and are still able to function and keep fighting the fight as Dirky can.

Look forward to getting to know you.-RJ

I have only had PD for a few years. Fortunately I only take regular Sinemet 3 times a day. It has helped my hand control but not my walking and getting up from a sitting position. Lately I have had problems with incontinence. My doctor wants to increase my PD meds and I have been fighting it. Unfortunately my hand control has gone downhill again in recent months so I may have to give in soon. I find the online support works best for me and I love the privacy of it. I depend on it to help make informed decisions. I feel fellow patients are a great source of useful information. I hope you find the help you need and this is a great place to start looking.

I, too, am very thankful for this online connection. It is my primary way of meeting and gaining wisdom from others who are walking the walk of Parkinsons. Personally I think this is the triathalon of triathalons.... additional challenge is that we don't get to know what to practice for and we can't back out. I live on the Kenai Peninsula in Alaska and have been surprised that there are no support groups here. I have found one other person through a mutual friend and we talk some.

RJ, I, too am using a power chair when I want to cover some ground. I don't use one around home other than in my counseling practice so that clients don't have to concern themselves about my condition. I am so slow and stiff, particularly upon getting up. I too, am fighting the pain issues that many in the medical profession say don't exist due to PD. Oh yes I use one to practice agility with my dogs and to compete for fun.

Hi Dirky, you mentioned feeling like you are plugged into the electricity supply. I think I describe a similar feeling as things within me fighting one another and leaving me feeling very jangled. The sinemet can take that away pretty effectively still. Thanks for your candor and your "fight on" attitude! It's contagious.

Roseanne, Our bodies must be similar as my awareness of the sinemet working for me was in my hand coordination with typing. I also noticed immediately that I had more strength in my legs, for example less leaning on walls when standing. That was in 2010 when I first used sinemet. I also have incontinence issues.

Marlene.....glad you joined us. I have not posted much but have found other peoples stories great food for thought and most helpful in reducing my feelings of isolation. I hope this proves to be true for you as well.

Good Morning Everybody! Dirky, I noticed that you said that you have ben having swalling problems and jaw problems. I have begun to have them also. I went to my regular Doc yesterday, and he's sending me to a specialist , an ENT Doc. about the jaw pain.Has anyone out there had rapid weight loss? I have been loosing weight real fast for the past four months. In the beginning I weighed about 172, now I weigh about 145?????????????

Hello back to everyone:
thanks for the introductions. Dirky, you give me hope and I love your fight. I get darned depressed too wondering what the heck is coming my way - which symptoms will drag me down or how severe they might be. Just got 3 books in the mail as "light" reading on PD :) .
RJ - it sucks that we don't have universal health care, otherwise you might have gotten some assistance earlier! Roseanne and Parky, count me in on the incontinence issues. I have had them for a long time since my oldest daughter was delivered by high forceps, which increases the likelihood of this "wonderful" aspect of our lives :) . Millie, I have not had the rapid weight loss. I quit smoking one about 6 or 7 years ago and gained some weight. started smoking again then quit for good on the day my grandson was born. Then I gained more weight. So much for that size 12 I used to be :)

Anyway, I look forward to interacting with all of you and thanks again for your replies,

Marlene

DrMarlene. You have to give these meds a chance to work. Most pwp who start on sinemet get nausea for a while until they get used to it. The Mirapex worked well to control tremor but gave me compulsive behaviors. be careful of that. It is good to keep a log book of meds timing reaction time dose how long it lasts.,.. Take your meds on schedule so that your neurodocs can fine tune or change things up . The goal being control of symptoms. It will be helpful years from now when drs ask what meds did you take. Keep a pd med history.

Hi....I have been a "silent" member of this group but I believe the time has come that I need to share, support and receive. I was diagnosed a few years ago with slow progression of symotoms until the past year. I am in a vicious circle...difficulty sleeping which makes symptoms worse....meds not controlling symptoms vdry well...must adhere to regid med schedule...body aches...back and hip pain espevially and stiffness when a sit for short periods. Have developed a severe gambling addiction tyat I believe is linked to the meds.....could use support...

to donice57:

2 quick suggestions to explore:

1) Mirapex is often source of compulsive behaviors - talk this over with your neuro. Be careful if decide to stop using it - I stopped "cold turkey" and had terrible withdraw symptoms ( devasting depression) for 2 weeks

2) Sinemet works great for me (relieves all symptoms you mentioned) but be careful on getting timing and dosages right.

dosage strength too high : get side effects such as dyskinesia
dosage strength too low : does not help

timing - depends on far along in the deterioration you are -
If your PD was diagnosed before age 60,
it is common to start sinemet at once a day in 2nd year,
increasing to 3 times a day by 3rd year,
4-5 times a day by 5th year

I am in my sixth year since diagnosis and at the point where I take Sinemet every 2 hours during my waking hours (8 times a day) and every 4 hours during sleep period (twice).

On my good days, I get 16 hours of on-time where I have no visible symptoms of PD.

What causes me to have a "bad" day ?
1) Eating . The consumption of protein can interfere with the effective adsorption of Sinemet.

Since you must eat protein to survive. This means timing of protein consumption is crucial.

Marlene,

Welcome. We are a diverse group with diverse PD experiences, medications, prospects, support systems, and perspectives. Our common thread is our commitment to each other to share, discuss, offer alternatives and critique.... without criticism.

Having been a member of this and other on-line support groups for many years, I am constantly surprised and delighted at the quality of support that members offer to each other. The information is up-to-date. When all is said and shared however, you will still need to be your own best counsel.

Again, welcome!

Beekeeper

Hello Marlene, I bid you greetings from down under Australia.

I think these are very sensible questions to ask indeed.

Judging by the response you have had, you could well be feeling over loaded with information and advice, so I will offer only input and caution.
The person most qualified to ask, and to clarify things for your good self, is the person who diagnosed you and who prescribed your medication, namely your treating and SPECIALIST, all the information, and advice given on this page notwithstanding.
I feel it would be remiss of me not to mention this.

Sent In good faith,
MAINTAIN A WINNING POSITION.

ALVEO/STEWART
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