New to the Group!

[Sheri-Howarth]

I'm Sheri, and I am joining this group with hopes of learning from others, as well as hopefully having an interactive support group.

Hindsight is 20/20, and I now know that I have been experiencing PD symptoms for a good three years, but I was only diagnosed twelve months ago.

I am still in the process of trying to get the meds right, and I sometimes wonder what is worse: the PD symptoms or the side effects to the meds!

My family and friends have been wonderful, but it is difficult to continue to 'burden' them with my everyday pains and frustrations, because I understand it is difficult for them to fully understand or comprehend the changes going on with my body (and indeed, mind!), and sometimes I feel like I probably come across as a constant winger, which is not like 'me' at all.

I also know that, particularly my immediate family, are struggling with the fact that I am not as strong (in every sense of the word) as I have always been, and it frightens them a bit.

So I have joined this group for help, advice, support and.....perhaps, a kick up the backside???

[Hidden]

I find this group most helpful, instructive, entertaining and also supportive. I invite you to view my Posts and Replies under my Profile.

[jillannf6 in reply to Hidden]

yes royprop you certainly tell ti like it is@

not meant to be a critical comment at all but a good one really `€

there is no messing with you is there

lol jill

[Hidden]

Well maybe the occasional nudge! X welcome !

[Sheri-Howarth in reply to Hidden]

Thank you x

[JohnPepper]

Hi Sheri. I know how you feel, but don't be too downcast. There is hope and that will depend on the way you go about dealing with your Pd.

I am not a doctor, but you can check this out anywhere you like. THERE IS NO MEDICATION THAT CAN SLOW DOWN OR EVEN REVERSE THE PROGRESSION OF PD!

THERE IS ONE TYPE OF MEDICATION THAT CAN HELP YOU TO GET MORE BENEFIT FROM THE DOPAMINE YOU ALREADY HAVE IN YOUR BRAIN! This medication is called an MAO-b inhibitor. It inhibits the natural breakdown of dopamine in the brain. There are three different variations of this. Azilect, Eldepryl & its generic Parkilyne.

There IS one way to stop or even reverse Pd and that is FAST WALKING! Okay, you may not like walking or you may be unable to walk properly, but the fact remains that this is the only known way to deal positively with Pd.

The choice is yours. If you want to read more about it then look at my website - wwwreverseparkinsons.net or get hold of a copy of my book, either on Amazon or from my website.

My symptoms started in 1963, when I was 29 years of age. I was only diagnosed in 1992 and only started doing fast walking in 1994, when my doctor took me off L-dopa medication and put me onto Eldepryl. In 2002 I was able to come off the medication and have lived medication-free since then. I am now 80 years old and am now living a 'normal' life.

If you don't believe what I have said here then get hold of a copy of Dr Norman Doidge's book, "The Brain's way of Healing" and in it you will see what he has to say about the way I have tackled Pd.

Good luck!

John

[Raissakagan in reply to JohnPepper]

Dear John,

I guess I was lucky to have a gym at work for 12 years, 7 years before the PD diagnosis and 5 years after. I had tread mill or yoga there daily and I firmly believe it made my Parkinson slower and milder.

Since my redundancy 2 years ego I have increased the level of exercises to 2-2.5 hours a day: body pump, yoga, pilates, aerobics (as much as I can manage), body balance and at least 40 minutes of walking on treadmill daily. I made it my job to do it no matter what.

After reading your book 1.5 years ego which I enjoyed immensely, I started taking Azilect . Didn't feel any difference then, but when I tried to stop it recently, I experienced the crippling tension on my right side and got back to it in 7 weeks, defeated. I concluded that Azilect does have some neuro-protective qualities and seems to help to slow down the progression of the PD.

Today, almost 7 years after diagnosis, I still manage to stay away from the medication and I attribute it to the intensive exercises and Azilect, as you advised in your book. I enjoyed your writing style and your optimism and I often re-read the book, just to get your strength and common sense and commitment .

Knowing firsthand how much stress impacts the PD, I admire your courage to go against the establishment every day no matter how much it costs you.

It is easy to get depressed with Parkinson but when I see that other people overcome this malady or done as much as they could to stay away from the drugs, it is really inspiring.

And feeling that at least to some degree I am in control of my life is reassuring.

Few days ego I came to the yearly assessment at the Movement Disorder clinic and the lady there was surprised that I had Parkinson for such a long time (7 years) and hasn't succumbed to the Levodopa yet. And I felt proud of myself and my commitment to put effort into my health.

Thanks again for your book and the positive outlook in spite of the adversities of life.

Rai

[JohnPepper in reply to Raissakagan]

Hi Rai. Thanks for this very kind post.

There appears to be something you have missed in my book. I spoke about the first 2 years after diagnosis, when I increased my daily stint at the gym from 60 minutes to 90 minutes, 6 days a week. Over those two years my condition continued to get worse! It was only when I stopped the gym and started to do the FAST WALKING that my condition started to get better. The second point that I stressed often in the book was that our muscles need two days to recover from strenuous exercise. If you work them hard every day they will often become injured. I am led to understand that muscles tend to eat themselves up in order to get the energy they need to do the work they are being forced to do.

I am not trained in this field, but I get this message from good good sources. I have picked up many injuries from walking hard EVERY DAY, subsequent to getting better. My advice to you and everybody else is that you will derive the most benefit from hard walking for 1 hour, 3 times a week. That has been proven over and over again.

Why not give it a try? It really does work.

Good luck!

John

[Beckey]

Welcome to the club no one wants to be a member of, Sheri. You couldn't hope to find better companions! Reading your post, I felt like I was reading my own words. It can be very isolating to have PD and be surrounded by people who don't, even while they may be interested, concerned and sympathetic. It's such a relief to be understood!

You say you've had symptoms for about three years. What kinds of symptoms are you experiencing?

I started doing tai chi and yoga when I got sick, and now I also try to get in a period of vigorous exercise most days. The doc tells me that is the one thing that can slow the progression of PD down. I've tried about every drug and combination of drugs there is and so far they've all backfired. I'd do just about anything to stop the tremor in my right arm and hand, which just gets worse. But amazingly, I can still thread a needle!

[racerCP in reply to Beckey]

Hi Becky, I was dx'd one and a half years ago, almost two and have right-hand and leg tremors, resting tremors but can still thread a needle and sew. I do exercise several hours most days, do tai chi, basic 24 and 48 and 32 twice a week for one hour and aerobic exercises most days. I take no meds because I don't feel really bothered by the tremors even if others may notice and be bothered. I have a loving husband and family and some friends and I am trying to deal with the PD diagnosis by prevention, exercise and paying attention to what I eat and limiting stress, which is really difficult for a Type A personality. The thing that bothers me most is insomnia and I will address that with my neuro at the next visit. There again I will avoid meds and see if I can get some kind of sleep training program or practice. I know it's early but I take it day-by-day and I'm grateful for everything good that comes my way.

[Jocee]

Welcome Sheri. I've had PD for 26 yrs or so. A positive attitude helps.

This is a great blog. Everyone is helpful.

[Pete-1]

Greetings SheriHowarth,

I think you will find most things you require are to be found within HU.

In case nobody has already said so PD is not fatal, just a right pain in the rear.

Bye TTFN

[12stargate in reply to Pete-1]

...and dear Pete, I choose to believe there is a cure. The cure is out there in the Universe, looking for minds that are open to receive it. While I keep the faith, I do what I know to do to handle the symptoms.

Enjoy your day Pete.

Hugs, EVa

[kaykoch]

I know exactly what you mean. They are used to you doing things and now you need help carrying "stuff", cleaning up--especially on a day you hurt. I gave up driving and my friends have been more than super but my husband is not used to having to go to the grocery and run errands and it frustrates him.

[judam9]

hi sheri , a big welcome to out group from around the world. to help you to understand what you are going thru. by the way , you have come to the right place.

no one is exactly alike. , so we aren't made from cookie cutters. you will be able to relate to some things , but not all. there are some much wiser then others. but that's OK.

i hope your journey with us will be inspirational and helpful. so don't be confused.

just like real people, LOL we have our differences.

at any rate, i hope you will find us friendly, we experts on the subject. so hang in there and don't get discouraged. hope to hear from you again soon. judam 9.

[Jash]

Hi Sheri

There is strength in numbers...welcome...exercise is most effective medicine...keep up your social connections too....don't retreat....keep moving forward...best....

[charsie]

Dear Sheri, I have developed a "Symptoms List" which is the most complete of any I have seen. Send me an e-mail to: [e-mail] I will send you an Excel list of not only the "Symptoms", but a "How to Use the List" The list will make it easier to understand your symptoms and be able to explain to friends and family.

This offer is open to anyone desiring the "Symptoms List". Simply put "Symptoms" in the subject line.

I am sure this will help you understand.

It's a shame you don't liver in Southern California where I teach a class for the newly

diagnosed with Parkinson's.

Hope to hear from you,

Charsie

[muragod in reply to charsie]

Please post here your list,which will be useful for all

[Pappy214]

SHERI its the drugs, the side effects are worse than the disease itself. i've had PD for seven years about a year ago i decided to stop the madness my thought was how can something good for you make me feel so bad ( carbidopa/levadopa ) so quit it and have never looked back. Exercise ,nutrition , vitamins and marijuana have done more for me than all the RX's the doctors prescribe. i still have tremors ,walk alittle funny but it beats the side effects of the drugs they push which don't cure but try to mask the symptoms.

[hanifab23 in reply to Pappy214]

please advice what kind of exercise and nutrition

my tremors are getting worse with muscle stiffness and pain

[sharlacher in reply to Pappy214]

I'm curious about the food you eat and vitamins you take and exercise you do... So maybe I can duplicate. Thanks !!