Another try to introduce a bit about me.:-)

[Skyrace51]

 I always had aches and pains. I also had a slight shake in my hands. But for me, that was 'normal'.  My mum used to say that I actually shook as a baby in my crib and as a child, I was always  being taken to the doctors for various aches and pains but mum was  told it was just 'growing pains'. 

Then fast forward to when I was in my late twenties. I was married, just had my first daughter and was working part time. I started to suffer with pains in my hands and arms, my legs and feet. I was finding it very difficult to cope. I was sent to see an orthopaedic surgeon, who then sent me to see a neurologist. I had various tests and an operation for Carpel Tunnel syndrome. Then I was diagnosed with CMT.(Charcot-Marie Tooth disease). 

I was given medication and told to "go live my life.!!",  which I tried to do as best I could.

Finally, after much deliberation and sadness, I had to retire from working as I simply could  not go on any more. 

Then about five years ago I had a bad bout of pneumonia and my heart had to be stopped twice to reset it. A few months after that I got a very bad tremor.  It like came overnight, down my right side. Thinking it had something to with my CMT, I just carried on coping, until my family forced me to visit the doctor.! The first time I went to see the neurologist about my tremor I saw him for about five minutes and I was told that it probably was  'essential tremor'.  I was put on more medication but had to re-book an appointment. because I wasn't responding to treatment.  I was then sent to another neurologist who carried out more tests.  I had an MRI, certain blood tests and was then sent to London to see a  top neurologist, who suggested I should have a Dat-scan. 

It was last year in August I was finally diagnosed with Parkinsons. I was told that three neurologists weren't convinced of the diagnosis until they had the results of the dat-scan.   

 

Wow! I really couldn't believe my luck. Not one but two diseases.!! Probably, thats why it was so difficult for them.  

I must admit , to start with I went very much into myself. I'm one of these people who has to get things sorted  and then move on, which I think,  personally, I have.

[windwsprer]

Greetings Sky! I live in the states, FL. It was good to hear something about you. I started visiting this site this year and don't have a clue as to many people's history. I guess there's a lot of variability. I find a lot of good ino here, however, and people who care and are supportive. In my case I wonder about CFS/ME. That's when the severe central pain and paresthesias began for me. Could be independent causes I'm sure. I've had fibromyalgia since I was a kid so might have underlying genetic susceptibility.I don't often have tremors though I miscalculate where I am all the time resulting in a lot of bumps and bruises. I stagger and fall sometimes. This and stiffness and the pain were helped a lot by levadopa which I began 8 years ago. I feel fortunate to be 70. I've had more good years - though my only child, a 40 year old, is just getting married. They're in Texas. I still have some living friends although 4 living here in FL died in a two year period - 3 in their 60s and one 72. What's up with that? Hope to see you around here.

[Skyrace51]

Hi wind,

So nice to meet you. It's hard having all these different symptoms to deal with. I find it a blessing to be able to share our stories. And to be able to talk to people in the same boat as we are. It does help.

All my best to you

[quirkyme in reply to Skyrace51]

so hard to figure this all out and in your case all your health challenges seem more complicated

welcome to the site. My husband is 70 (the PwPD) and so am I.

[jillannf6]

HI SKYRACE51

WELCOME TO THE SITE = -I HAV E PSP (LIKE PARKINSONS BUT RARER) SO PLZ EXCUSE MY DYSLDEXIC TYPING

LOL \JILL

XXX AND A

[Skyrace51]

Hi there, jillann,

I often press the wrong letters too. Lol.. Pleased to meet you too.

All my best to you.

[shasha]

HELLO SKYRACE51 WELCOME TO THIS MARVELLOUS SITE YOU SHOULD BE ABLE TO FIND ALL THE HELP YOU NEED HERE L]I

KIND REGARDS

SHARON

[Kadie57]

Hello , I also live in the states in Wisconsin, I have been on here for 2 yrs, Feel free to check out my info, I was a clumsy kid it was a said every time I fell or tripped( Broke many toes) to me being near sighted, I had a very hard case of measles this cause damage to my eyes i had glasses in third grade. This the best place for info and people really seem to care, I had tried some other sites and it was so depressing. Take care and glad to meet you.

[Skyrace51]

Lovely to meet you too Kadie,

I too had many a fall when I was growing up.

All my best to you. Hope you having a good day

[froggatt55]

My dearSkyrace51 - you have certainly been through the mill. I was lucky that the first Neurologist I saw I 2003 just brutally told me that I have Idiopathic Parkinson's. I was so shocked that I demanded a second opinion and (here is the lucky bit) saw a Neurologist whose specialism was MS so he wanted a Datscan wehich was arranged (I had Private Insurance at the time) and thus I was diagnosed fairly early after motor symptoms showed.

Of course we now know that non motor symptoms can often appear years before this and in my case t was Constipation and depression - both now controlled i'm glad to say.

I believe that exercises help us t control the beast and am starting an Initiative called R.I.P.E. which stands for Realistic Improvement in Parkinson's through Exercise.. it's mission is to get every PwP - throughout the world doing as much exercise as they can manage. I intend to plagiarise as many sites as I can, to identify he various levels of exercise - for example going from seated gentle exercises through to heavy gym sessions and even marathons.( I have recently started boxing training which is very intense but I'm thoroughly enjoying it and feeling the benefits), advise where classes are held and liaise with whoever to ensure the message of exercise reaches every PwP

Good luck!

[pedserv in reply to froggatt55]

The R.I.P.E. program is a winner. Exercise and Coconut Oil along with Azilect and Amantadine have stabilized my functions and improved my balance. I try to do exercise that I enjoy (not easy in the winter).

[froggatt55 in reply to pedserv]

Thanks pedserv - I gave up on the Coconut Oil because of the calories I was taking on board - weight loss is not something I suffer from!!

I agree 100% with you on Azilect, Amantadine and of course Exercise. I believe that Azilect is neuro-protective and Amantadine holds dyskinesia at bay

I tend to us the Wii in winter

Regards

[Joanne_Joyce in reply to froggatt55]

R.I.P.E. sounds really great - and very important! I hope you get lot of feedback from PwP who are benefitting from exercise so that will encourage others.

[quirkyme in reply to froggatt55]

I agree with you. My husband does physical therapy and stretching. He's on a plateau and we hope to stay there. He's even had some improvement with new meds. So it's not all downhill.

[Skyrace51]

Hi froggatt55,

I would love to exercise . Unfortunately daily life is my exercise, and that for me is quite demanding . I do too much and I certainly suffer for days after. but I still push myself every day. I hope you get on ok with your exercise . Good luck, my best to you.

[froggatt55 in reply to Skyrace51]

Thanks Skyrace51. Your pushing yourself is the best response to "the beast" and no matter that you suffer a bit on following days (I do) - your battle will be worthwhile I promise you

Regards

[cowmom27]

May I also welccome you to this wonderful & supportive site. I recommended that my nreurologist & NP checkout this site---why you may ask. When I go for a checkup *& report some of the problems I experienced they sometimes tell me its not from PD & really don't know what to do. I found that the foot cramps I get in my left foot is experienced by many PD people, also foot numbness and it was on this site. People from around the globe ' meet ' here to ask questions, share a post,, and we support each other because we are not in this alone & we certainly understand each other. I was diagnosed in 2006 & continyued to work until I retired in 2011 from a nursing career that spanned 46 years the majority of which was working caring for the elderly so I have known. Since age 19 what this disease does to our bodies but fortunatelly we live in a time when hopefully a cure is just. Around the corner---so the battle goes on.to face each day with a smile, a sense of humor and determination to remember we have PD but it doesn'tt have us!!! So once again welcome and I also live in the US in western NY.

[pedserv in reply to cowmom27]

I'm still working part-time and at first thought I didn't have time to participate at this site. Now I MAKE time! My neurologist is a bright young man, but has been skeptical about non-drug approaches to coping with PD. So, unless he can identify a down side risk, I'm going forward with much of what is discussed here.

[jillannf6 in reply to cowmom27]

good on yo cowmom27!

lol jill

[Skyrace51]

What a great idea cowmom27,

I shall certainly tell my GP and neurologist about this site.

It is true how they even in their field do not know of certain things that we go through everyday. I too have had cramping in my feet and calves for many years now. Very painful too.

I wish you all the best and hope you having a good day.

[cowmom27 in reply to Skyrace51]

thanks Skyrace51 at least the days are finally getting better--had a major infection in Dec which has resolved but the effects it had on my PD is taking much longer than I ever imagined. but as I use to tell my patients---patience is a virtue and we need to take 1 day at a time-----------don't you hate it when we need to take own advice.........LOL

[Skyrace51]

I hear what you saying. Lol. I'm good at giving , but taking it is another thing ! Lol

[Peaches]

It is so nice to read all of these posts. I have been on this site for the last three years and I am surprised at how much it seems to be changing. Most of the names that were on here all the time are rarely seen anymore. I don't write very often since the "old" community seemed to all know each other and I did not want to intrude on their communications. I will try a little harder from now on. It has been so helpful for me to see that others have the same symptoms that I do. Like others have said...the neuro often swears that my problems are not caused by the PD but if we all have them they must be! Thanks for listening.

[quirkyme in reply to Peaches]

Peaches, welcome back. I'm sure people come and go. I'm fairly new. But don't be afraid to jump in and post your thoughts and how you are doing.

[Jupeter in reply to Peaches]

It might be that people are following the good old maxim, if you have nothing to say, don't say anything! Personally, I respond to things which are of particular interest and I feel I can add to the discussion.

There are some names I recognise from way back, others may have declined in health and are no longer active. I am staggered by the courage shown by many PWP in dealing with horrendous symptoms. It makes me feel grateful that I haven't travelled that far as yet.

Good Luck

[Skyrace51]

Hi peaches,

I haven't been on here very long so I'm pleased to meet you.

I'm on a couple of other forums. But this one I think is the best so far. Everyone seems so friendly. And always pleased to help. Hope to speak again soon.

All my best to you

[Peaches in reply to Skyrace51]

Thank you. I will look forward to that. Wishing you well.

[cowmom27]

XPeaches, I welcome you back as well. This site is a godsend--just knowing that you can post or ask a question the love and support one can get here is invaluable. It is also the place to have our experiences validated. Looking forward to seeing your name frequent,ly.

[JAYNIE]

Hi, I have not been on for a long time. I will try to be around more often. I am in a catch 22 situation......I need to exercise, but my lower back is so painful with stenosis and also my neck that I even have trouble standing and walking with out leaning over. I am 75 years young, and this back thingy has me looking like 105. so I found this "vibrating" place not far from where I live, and I tried it. you do different speeds for 10 minutes, just 10 minutes and already after 3 sessions I am starting to feel better. this machine looks like a weight scale, and you program in your speed etc. if any of you out there can find a place that has these machines I highly recommend it. I have numb toes and it is helping that too. it does not hurt and I don't run out of breath...you just stand and hold on.

Jaynie

[Skyrace51]

Hello Jaynie,

Sorry to hear about your painful back. This machine sounds interesting. Although I know with my self, I used to have a foot bath with a massage built in for feet. Unfortunately I found out that once I used it, it actually knocked my legs out. And couldn't stand or walk after using. I hope you get some relief.

All my best to you.

Skyrace51