PD Frustration

[Jumex2017]

Sorry, I wasn’t sure how to use this website.. I have a husband who has refused to admit that he’s suffering from PD.Hes rather young 62 but its taking its toll. Hes been recommended by one doctor to take selegiline and another to take azilect. We are not sure which is better. Does anybody know? He used to play 10sports very well but hasn’t been playing any sports for some time. I got him to do some balancing exercise ad some facial masking exercises and go to the gym. But other than that what can he do to improve his health? I read in a google search that once you take these medicine , your health goes to a decline as your body loses the function of producing dopamine. Is that true? What exercises does one recommend?

[dentonpark]

I'm 60 male and diagnosed 3 years ago. No drugs as of yet🙂. I just had my 6 month Parkinson's appointment and I have had no progression since my last checkup. I exercise 35 minutes at 80 to 85%, 5 days a week and lift w.eights 2x a week. Main symptoms are mild tremor left side. Keep moving!!!!

[Bailey_Texas]

Good morning Jumex2017

First taking Parkinson's (PD) medicines does not stop or inhibit the body's ability to produce dopamine. As for the meds Carbadopa levadopa is the best for most people. Parkinson's is what stops your body from making dopamine. There is no reason to delay taking PD meds. They work the same no matter how long we take them. PD just progresses and the we require more and more to the point that the side effects get so bad that the bad out weights the good. Parkinson's medicines do not slow or stop PD but help control the symptoms on a day to day basis. m They allow us to get on with our life. As for exercise he needs to find something he enjoys. I do Crossfit because i enjoy the people.

Google Crossfit to see what it is all about.

I am 64 12 years

diagnosed (symptoms for 25 years) with PD. My symptoms are well controlled and i do most anything i want to do.

[Bgrime in reply to Bailey_Texas]

My neurologist told me efficacy of drugs reduces over time

[wilky529]

stay away from the Selegine.Bad stuff.I was put on it 4/2016.took it for 3/4 months then had side effects.the The side effects I experienced were extreme dizziness especially going from sitting position to standing up almost passed out. Also very hard breathing thought I was going to die.I was in hospital 3 days.I am 62 years old upon entering hospital I was given a battery of test.which they could not find anything wrong.All I heard was you do not look any where close to 62 yeras old.They thoght closer to 50-55.the test I had done in a span of 3 days.blood test every 4 hours/blood pressure/nuclear stress test/x-rays/MRI/CAT SCAN /EKG PFT/ECOK-CARDIGRAM/ENDOSCOPY AND COLONOSCOPY.They were puzzled because they could not find anything I was sent home 3rd day.Got home visting nurse came to interview me called doctor said I should not be home.I refused to go back.But I was rushed to hospital 3x times with wife 1x ambulance Finally because my Neurologist was out of the country I had a DR. Akbar see me.He saw my meds seen that my blood pressure 118/71 sitting and anywhere fom 68-/56-72/62.He asked me why I am taking Selegine. He then took me off of it and put me on a blood pressure pills Midodrine.I have low blood pressure now.But off the SELEGINE Doctor said it was causing the breathiing problems

[park_bear in reply to wilky529]

The blood pressure problem you described is called "orthostatic hypotension". It arises when your body's blood pressure control system that compensates for postural changes becomes disabled. Has that resolved now that you are off the selegiline?

[Blue-jeans in reply to wilky529]

it's amazing how we are all different, I've been on Selegeling for 9 years, and am sorry it went off he market here. A cursed disease..........

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"what can he do to improve his health?" Read my Profile and Posts. Discover how I improved.

[Enidah]

I know many people for whom azilect was quite helpful, especially in the beginning. It is not the meds that make Parkinson's progress, it is simply what this disease does and unfortunately we all have to find the medication combination that works best for us as individuals. It takes a certain amount of courage and determination but it's certainly worth it. As Bailey said, carbidopa-levodopa is still the gold standard for what works. And, keep moving! Get the heart rate up. We all have to keep out-running the little monster. Good luck to both of you!

[M_rosew]

It is not helpful to have two doctors giving different advice. For PD you need to see a Neurologist specialising In movement disorders - still seeing your General Practitioner for any non-PD ailments.

I have taken Azilect for the past 6+ years and been happy with it (slight rash at start). Now take Half Simenet as well.

With PD you aren't exercising to keep fit, but to maintain or re-learn movements that you could previously do without thinking. Check 'neuro plasticity'. It would be helpful to see a Neuro-physiotherapist for EARLY advice.

Personal favourite websites

<outthinkingparkinsons.com>

<pdwarrior.com>

Both also on YouTube

[arwenmark]

I agree completly with Bailey_Texas. avoid the dopamine agonists and try regular simemet. And the meds do not cause loss of dopanine, that is what Parkinson's does.

[Jumex2017]

Actually when I said doctors I meant neurologists. What supplements does one take?

My husband takes 1 tablet of q10, calcium and magnesium, ginkgo and fish oils.

[Motherfather]

well both azilect and selegiline are the same thing..i stoped using it dead.it did nothing for me when i took it and still the same with out it,stick to the dopamine for pd i found madopar better than sinemet..as you will see lots of people on here find sinemet not as good lots of problems with it..try both and see for your self.regards

[Grasss1973]

Not to be picky, but Azilect is the brand name for rasagiline which is different from selegiline. They are both MAO inhibitors but may have different side effects.

If you had trouble with selegiline, it might be worth while to ask your neurologist if rasagiline might be preferable. Neither drug has much of an effect on symptoms but may help in ways not clearly understood as of yet.

[Blue-jeans]

Hi I've had PD for 10 years, and have only taken Selegeline, and am (happy) with he slow rate I am declining, compared with other PwP's I know, BUT we are all different. Unfortunately Selegeline was taken off the market in South Africa, I did take Azilect for a while, but had to stop for financial reasons. I DO believe exercise is very important, not weights, walking rapidly works! Good Luck!

[ramondo4]

I have been on Sinemet plus for four years no other supplements at all, I know my PD is slowly worsening , balance problems being my latest problem, but my neuro still swears by Sinemet as the gold standard pill.

[Jumex2017]

Go to utube balance exercise Singapore hospitals. They have a simple balance exercise which can be done in 20 mins every day. I found it in the web and got my husband to do it every morning when he wakes up.Im not sure how helpful it is. there are various exercises developed for PD patients. But my husband finds marching best as he feels better but he says its very boring and tiring while he does it.So I put the Adele music and he marches with it. Its a 4 minute tune and he says he completes 200 marches. Now coming to supplements , I have gone into the web and they recommended Q10. This is rather expensive . I suggested taking fish oils and berry supplements as well as calcium.Any suggestions??? PD medicines are very expensive and you have to be a millionaire by the time you finish!

[ramondo4 in reply to Jumex2017]

Thank you for that info.

[Jumex2017]

By the way, my husband also did the Wilson test and had a MRI on his brain. They Wilson Test is the one on the amount of copper in your body.Ths is checked by your urine sample taken for 24 hours. I’m not sure what it is but I think the neurologist said its testing the amount of copper in your blood.He also did the eye test which could check on the amount of copper.

[M_rosew]

Your husband should see a Neurologist specialising in movement disorders to get a proper diagnosis and advice about medication. If he does have PD, he would benefit from early advice from a Neuro Physiotherapist.

Excercises needs to be enjoyable to stand any chance of doing them. Also look up 'Neuro plasticity' (to maintain mobility)

Azilect is a good starter.