Exercise and Azilect

[lockington2]

I am following a book written by John Pepper (south African) "Reverse Parkinson's Disease" in which he advocates an inhibiter and exercise. So I'm on Azilect 1mg and fast walking 3 times a week, the objective being to walk for 1 hour with my heart rate over 130 bpm, which I achieve. I am 70 and an early diagnosis with only symptom being tiredness. Been on this regime for only 6 months so too early to say anything about effectiveness. But certainly feel better from the exercise.

[laglag]

I am glad the walking is helping you to feel better, but Just curious, why would your doctor diagnose you with PD if you only have tiredness as a symptom? Tiredness could be a lot of things.

[lockington2 in reply to laglag]

Brain scan showed reduced dopomine

[laglag in reply to lockington2]

How do you get a brain scan? Just heresay, I've heard they are very expensive and insurance usually doesn't pay for them. It seems like the insurance companies might save some money by getting a proper diagnosis in the beginning since most people have side effects from using certain drugs for PD; therefore causing more problems.

[lockington2 in reply to laglag]

I had been felling unwell for a few years and had a lot of tests but all OK. I think my doctor sent me for a scan just to get rid of me ! I'm in England and the much maligned (unfairly) National Health Service did it for free - in fact I also had a scan for a brain tumour which was negative.

[laglag in reply to lockington2]

Glad it was negative! Thanks!

[JohnPepper]

Thanks for the positive feedback. I wish everybody would be more positive and do what you are doing.

[Bridielena in reply to JohnPepper]

For 10 years following diagnosis I felt I could climb mountains.....walked and walked for years on our gorgeous boardwalk around the bay almost every day, did 4 overseas trips sailed back across the Pacific from Canada to Australia, toured Australia in a Winnebago for 9 months , never still, came out of retirement to manage a Resort...still doing it or rather my husband is......then.....the ROT set in......definitely no more walking as too dizzy, not enough ON time....falls started, fortunately only bruised ribs and cracked sternum being the worst injuries, litttle sleep, Dystonia, Dyskenesia.....still I cope.

Impossible to exercise and I’m not unique as my mates in my PD group are in the same boat....we all turn up with Walking Sticks just to get to a table to SIT DOWN.....and chat and enjoy what we can do and remember the ‘good old days’.

I do what I can, when I can and in any way I can manage.

[JohnPepper in reply to Bridielena]

Your's is a very common outcome form relying on medication to stave off the progression of Pd. Your journey took a lot longer than many others, probably because of your high level of activity.

I am not against taking medication, as long as we realize that it is only masking certain symptoms, it is not designed to make us get better.

While taking medication, if you must, you should have been doing some high intensity prolonged exercise that would have produced GDNF in your brain that would have repaired some of the damaged brain cells.

Whether you can start doing it now I do not know.

[Bridielena in reply to JohnPepper]

Thanks John.

I know PD is only controlled not cured.

I feel I’m exercising even in my sleep with Dyskenesia. Lost a lot of weight.

One day at a time eh!!

[JohnPepper in reply to Bridielena]

Not any old exercise is capable of persuading the glial cells to produce GDNF. As I have said in other places, we have to cause the glial cells to produce the GDNF and I think that because fast walking is not natural, the 'Fight or Flight' reaction comes into play and the cells start producing GDNF to protect themselves.

[Bridielena in reply to JohnPepper]

Exactly how do I Fast Walk when every step I take most days I feel I could fall. My legs feel weightless... I do have some ‘on’ time where I’m stronger but still dizzy which also can be very low BP.....62/44. Mind you this was typical before my Byetta Trial which I felt was bearing results and then I had general anaesthetic 3 weeks ago and I’m back to square 1.

Am continuing with Byetta as in the beginning it was helping so maybe it will kick in again. Look up The Lancet article.

[JohnPepper in reply to Bridielena]

I would be very foolish to even begin to tell you how to start fast walking without at least seeing you and asking a lot of questions.

Speaking generally, I would say that you should start doing some exercise to strengthen your muscles. Then, when you are feeling stronger, start walking as fast as YOU CAN for as long as YOU CAN! It might only be for one minute. Who cares? Then walk every day for that same length of time for at least a week. Then see if you can walk for longer and then walk for that length of time for another two weeks.

Then when you are able to walk as fats as YOU CAN for ten minutes, then only walk every second day, so that you give your muscles chance to recover from the exertion.

Then every second week continue to add as many minutes as you are able and walk for that time fr the next two week, every second day.

When you are able to walk for one hour you will be a different person. Don't walk any longer, but stick to the one hour every second day and try to go faster and faster.

Tell me when you can walk for three miles in that one hour.

God luck!

[Bridielena in reply to JohnPepper]

At the moment it sounds impossible.

[JohnPepper in reply to Bridielena]

Try it anyway!

[Bridielena in reply to JohnPepper]

Will attempt ‘take off’ today.

[JohnPepper in reply to Bridielena]

If you want to succeed just follow the rules:

1. Walk as fast as YOU CAN for as long as YOU CAN. every SECOND day. If you are only able to walk for 2 minutes, that's fine

2. Every second week, try to walk for a little bit longer and do that time every second day.

3. When you are able to walk for one hour your should be feeling very proud of your self and be feeling a lot fitter and a lot healthier.

4. Keep to one hour every second day and try to walk faster and faster. You will never look back!

5. Don't get clever and do more than I tell you here! You will land up giving up and telling your self it does not work! It DOES WORK if you do it properly!

[Bridielena in reply to JohnPepper]

Yes I’m determined. Rather apprehensive though.

We have a fully equipped Gym which I have been too nervous to get back to, because last time I couldn’t move off one and had to call for help. Would a bike, stationery of course, improve leg muscle ?

[JohnPepper in reply to Bridielena]

We are all different and that makes it difficult.

My experience was, at the time of diagnosis, I increased my daily gym exercise to 90 minutes and worked as hard as I could. After two years of doing that for 6 days a week, my condition had got much worse, faster than it had been going, before diagnosis.

I then gave up going to the gym and at the same time, switched medication from Levodopa to Selegiline (Similar to Azilect).

I then started to do th Fast Walking, slowly building up from 20 minutes every second day to one hour every second day. Within four months my condition started to improve. It continued to improve until I no longer had any visible symptoms of Pd. After 8 years I stopped taking the Selegiline because it caused me to have extremely high Blood pressure.

I hope this helps you.

[Bridielena in reply to JohnPepper]

Yes we are all different. I expected an awful day today and it’s been just the reverse.....almost normal......I’m hoping it’s the Exenatide weekly injection kicking in . (It’s only a Trial but I have a forward thinking Neurologist)

Looking forward to walking the Boardwalk again with earphones and moving to the beat of of my favourite music.

Thanks John and everyone for all the input.

[lockington2]

Have just finished my Tuesday walk - 7.44 kilometres in an hour, average heart bpm 133

I don't know if it will slow PD but I'm feeling a lot better than I felt before starting the walking 6 months ago.

[Bridielena]

Wow. Where / how did your positivity to achieving this come from.

Males over females ? I really don’t know.

[lockington2 in reply to Bridielena]

Read John Pepper's book - he's had PD for many years and developed the walking regime, combined with using focus to rewire physical actions. He's in his 80's, still walks 3 times a week - PD has been held off (not cured). I met him at a seminar he had in London last year and he's very fit. He had people in wheelchairs walking with very little assistance.

As to positivity, I don't really admit to myself that I have PD.

[Bridielena in reply to lockington2]

Honestly if you are on this Forum you have something. That’s the reality. I love walking. I don’t love falling.

Going out today with good mates to assist if need be so I shall attempt ‘take off’.