Are these behaviors typical and can they ... - Cure Parkinson's

Cure Parkinson's

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Are these behaviors typical and can they be repaired? freezing, walking backwards, can't dress oneself; difficulty getting in/out of bed...

Nippermcc profile image
13 Replies

I am 60 years old and just 2 years since diagnosis, which began with slight occasional typing tremors. Next came the foot & leg freezing; walking backwards into doors and walls; inability to pull shorts etc all the way up; unable to get in and out of bed without assistance; sudden speed when walking my dog and unable to stop; toe curling; ...Is it typical for a relatively new Parkinsoner to develop so many issues in just 2 years? It is sooo depressing and scary. I started on Siminet and thought I'd found a miracle...then I started reading all the negative feedback on siminet and hoped I could switch to a natural product--but I don't know how to do that! I'm afraid my life is over...and my companion deserves to be more than a caregiver...it's hard work!

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Nippermcc profile image
Nippermcc
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13 Replies

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol.

Nippermcc profile image
Nippermcc in reply to

If this is a honeymoon I am in BIG trouble...I have only mentioned a few of the disturbing behaviors. there are more...is that typical? most other people seem to have tremors, not gaining unstoppable speed during a dogwalk.

alexask profile image
alexask in reply toNippermcc

You have come to the right place. There is a lot you can do to slow your progression and improve your symptoms. Search through all the posts here to see what will help you. Most of all at least 30 minutes of Cardiovascular exercise 5 days a week.

KLDA profile image
KLDA in reply toalexask

I agree cardiovascular has been very helpful!

Hikoi profile image
Hikoi

Nipper

People such as you are exactly the reason I challenge grand claims of cure or reversal of pd. none of the people here have found THE answer, they have found things that may help but inevitably just about all will go on meds,

Though we share similarities still we each have our own variety of PD. You appear to have stiffness and balance issues while my balance problems are mild but my tremor is very strong. You say you started on sinemet and thought you had found a miracle, can you say more about this? Did it help and are you still taking it?

Your life is far from over, you need the right information, and to find your fighting spirit.

Astra7 profile image
Astra7

I have similar symptoms- tho not the speed walking one - and have found mannitol to be a huge help. I also take azilect and a little madapor, as well as NAC and magnesium.

It gets better. Then I guess it gets worse but let's put that off as long as possible!

JohnPepper profile image
JohnPepper

You have to be positive about dealing with Pd. It can get you down very quickly, if you let it.

Yes there are other ways of dealing with Pd, but most of them either involve spending a lot of money on supplements or a lot of effort on meaningful exercise. I recommend fast walking, which costs nothing and is the least harmful to the joints.

Look at my profile and/or look at my website - reverseparkinsons.net - and contact me for more information.

Kevin51 profile image
Kevin51

Your neurologist ought to be your best adviser on your range of symptoms - assuming they are a Parkinson's specialist. The general advice is to optimise your medication (lowest dose for sensible quality of life) to allow you to focus on challenging yourself on nutrition and exercise. Noone can do that for you but you will need resources (online/medical/physio) so make the best use of what is available including this site. Because there is no way to actually objectively measure the impact of meds (and that will vary daily with what you eat and your stress levels) your feedback will be crucial to getting them right. The more you understand the better you can do this!

Bailey_Texas profile image
Bailey_Texas

I will be very blunt.

Keep taking the Sinemet and start a aggressive exercise program. There is no such thing as natural product every thing is processed. Sinemet is a good choice.

Increase the dose of Sinemet until you find a dose that works for you the max dose is

2000 mg a day. The exercise program should vary every day. at least one hour 5 days a week. Reduce your stress.

Good luck

Jebbie12 profile image
Jebbie12

First of all are you seeing a movement disorder specialist? If not find one immediately. Next exercise at least five days a week without fail. Those of the two most important things you can do for yourself. I am nine years since diagnosis and still leading a normal life. I attribute that to a great doctor and strict exercise regimen including yoga and aerobics . The right combination of medicines is critical as well

ge1shh profile image
ge1shh

I agree with all the advice about exercise. Is there a local Parkinsons Organisation near you, or support group where you can get info on suitable classes (preferably designed particularly for Parkinsons people)? A physiotherapist can also give good advice. I started a Boxercise/general fitness class, and find it really helpful.

walkwithpath profile image
walkwithpath

Hello, I am the daughter of someone with Parkinson's. My father has had freezing for a very long time. We found that what worked best was to have the help of someone nearby - essentially the closest person to him would help by 'placing a foot in front of his' and this worked miraculously by allowing him to step right over it and continue walking. This inspired me to create a product exactly for this symptom. I have worked on it for over 3 years now, and we just made it available last year. It's called Path Finder - you can see info about it here: walkwithpath.com/path-finder. If you are interested in hearing more or trying it write me at lise@walkwithpath.com. All the best :)

Juliegrace profile image
Juliegrace

Did you go off the Sinemet? Your symptoms sound exactly like mine when I titrated off Sinemet after four months on a very low dose. I stayed off for a year, getting worse until I went back on.

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