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Wow!  This is an awesome place for knowledge and support!  I am new to the neighborhood and like so many of you have more questions than answers!  I think that talking to people that have PD is the best source to find out answers. 

 

My story:

I am a 43 year old, small business owner (ACE hardware), suffer from hypothyroidsm for 31 years, and otherwise in decent health. 

 

    Over a  year ago I began having trouble swallowing and brushing my teeth.  I couldn't spit the toothpaste out without it going all over me.  I, for whatever reason, chalked it up to stress.  The problem presisted but wasn't high on my priority list as it didn't happen everyday. I also begin to notice that I couldnt print anything legible.  I could write it, but it was super small and jumbled up.  I just figured that since I use the keyboard for all correspondence I had gotten out of practice.  Dumb, I know but I was struggling to understand.  About six months ago, I began slurring my words and having real difficulty speaking.  Not all the time, just very sporadic.  I also developed a twitch in my right pinky finger and my right leg has always "bounced" when I was resting ( my wife always said this was due to my hyperness).  I begin to have more concern as to the cause of the tremors and if the other "weird things" were related.   This is where the path begins. 

      I saw GP who ordered an MRI, which proved to be negative. I was referred to a neuro for initial examination.  She performed the typical examinations (i.e. spiral test, walking, balance, etc.). Upon conclusion of tests, she told me I didn't swing my right arm when I walked.  I, nor my wife had ever noticed that little detail!  I asked what that meant and what she thought might be wrong with me.  She suspects PD but refferred me to a movement specialist because of my age and ordered a datScan.  The frustration begins here.  Insurane will not approve the datScan until I see a movement specialist.    The earliest I can see a MDS is 4 months away.   UGH!  The frustration is terrible!

      I have read so many of your stories that have similar characteristics to mine.  I am fine with a dx of PD but I am worried that waiting so long to begin meds will speed up the disease.  I know that doesnt really make sense but it is a concern.  I know that waiting patiently is something everyone has to do, but when you are the one waiting, it is hard! 

 

My questions would be:

1) Is the delay to seeing a MDS going to speed the disease along?

2) Are my symptoms characteristic of other PD patients?

 

Like I said, if this is PD, I am fine with it, I am just ready to start finding my way down my new path of LIFE!

 

Thanks for listening and I pray nothing but peace for all of you!

 

 

 

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Curt, I am 36 and I feel your pain. I was given a diagnosis in December and waited till March to see a MDS. I just had a DatScan and have not recieved the results yet. I am still going strong with out meds.

 

If you do have PD, do not worry. It will move at its own pace with or without drugs. There isn't much that will slow it down or speed it up.  Best thing you can do in the mean time is eat healthy brain foods, and exersise.

 

Hang tough, waiting sucks (trust me I know)

 

Good luck and feel free to ask anyquestions you want.

 

Blessings

Adam

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If you do not wish to wait, asking for your GP or neurologist to try Sinemet might be an option.  Sinemet works quickly to improve PD symptoms, if you have PD you will feel better, if you do not see improvements, assuming you are taking enough of it, then you may not have PD.

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A word of caution about starting Sunet BEFORE seeing the MDS. Although I was seen at Mayo they waited to start Simemet until I saw the local MDS so he could evaluate me at baseline before the effects of meds. I know the wait is nerve wracking but a few months will pass quickly. Try a good daily brisk walk. Eat healthy food. Keep occupied with things you like to do. Meds bring some of their own issues which will be another part of your journey. Your MDS will be glad you let him start fresh with you.

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Curt, welcome to the family........ Yes, your symptoms could very well indicate PD, and the delay with seeing a MDS will not change the rate of progression. In fact, 4 months to see the MDS is not that long, as many take as long as 6 months or more.......... Treatment and med's for Parkinson's only mask the symptoms, they don't affect the speed of progression........... The best thing you can do in the meantime, is to get plenty of exercise.

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. Treatment and med's for Parkinson's only mask the symptoms, they don't affect the speed of progression.....

Is "mask" really the correct term here? I was told that levadopa is actually providing your brain with what it normally produces, so it's more like filling in than masking. Maybe I don't get this whole thing...

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Musicman you are correct, although that could also be considered masking.  Sometimes you gotta walk down the middle of the road.  Enough from me, so many typos.

 

Dave

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I was thinking the same thing.   I thought Levodopa is replacing lost dopamine and not masking the deficiency.   The problem is people with PD is losing dopamine faster than it can be replaced. That's always been my understanding. 

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misicman

Posted Today, 02:23 PM

FlyBaby, on 28 Mar 2015 - 1:02 PM, said:snapback.png

. Treatment and med's for Parkinson's only mask the symptoms, they don't affect the speed of progression.....

Is "mask" really the correct term here? I was told that levodopa is actually providing your brain with what it normally produces, so it's more like filling in than masking. Maybe I don't get this whole thing...

Used as a verb, masking would be correct. Without Sinemet and other treatments, Parkinson's symptoms re-appear. Sinemet and other treatments are neither neuro-protective, nor do they stop the disease. They do temporarily make the symptoms go away.  eg. masking them....... Even though Sinemet and other treatments make the symptoms go away for awhile, the disease still continues to progress.........

Edited by FlyBaby

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My questions would be:

 

1) Is the delay to seeing a MDS going to speed the disease along?

2) Are my symptoms characteristic of other PD patients?

 

Like I said, if this is PD, I am fine with it, I am just ready to start finding my way down my new path of LIFE!

As the others have said, the delay will have no effect on the progression of the disease. The only thing that has been shown to delay the progression of PD is exercise.

 

Yes, your symptoms are characteristic of other PD patients.

 

If it is PD, you won't have to find your way down a new path. Just continue on your current path!

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Welcome to the forum Curt!

 

Our stock advice, eat right, exercise, and get some sleep is pretty much what to do at this point.

 

How often do you have blood work done to check the Thyroid levels?  That can also play a role in movement.  So you started synthroid at age 11?  I started at the same age, and have had doc's always comment "that was unusual age to have thyroid issues". 

 

So even though the first appointment is four months away, exercise and keep moving is best recommendation.   For some of us this progression is pretty slow, so a very long journey. 

 

I do appreciate the humor of toothpaste as I always manage to get some on the corner of my mouth, and shirt.   Ya, not good.  Only thing you didn't add was if you told your wife if she need a hearing aid!

 

Tom

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Hi Curt,

 

As the others have said, PD moves at its own pace.  Drugs treat the symptoms, but cannot stop or delay overall progression.  (Side effects from the drugs can also cause their own problems.)  So the wait may be frustrating for you, but if it is PD, it's not like it will set you back.

 

I'm only 8 months post-diagnosis, but I do have one piece of advice.  EXERCISE.  (And look at your diet/nutrition.)

 

The free DVD from http://www.davisphinneyfoundation.org is a good place to start.

 

I've dropped over 40 pounds and added lean muscle in the process.  I work with a personal trainer to make sure I'm working on all muscle groups, and he's great with reminding me to keep up with the balancing exercises. 

 

You might also ask your neuro for Physical Therapy recommendations.  In some cases, there are things that you can improve problem actions/activities by retraining your brain and rethinking the process.  Fight back...and celebrate the small victories.

 

Good luck!

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Exercise is key, my husband tries to do as much sport as possible. Not only does it help him with his movement and balance it also clears his head. In addition to sports he also regularly sees a physical therapist. If you were not sportive before its never to late to start  :) 

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