Frustrated with PD

[pogo1960]

Hi,
As some of you may know, I am 47 years old and I was diagnosed with PD seven months ago. I am struggling over the acceptance of what I have. Not too long ago a friend who has serious health issues heard me say, "Why Me?" He responded by saying, "Why Not Me?"
At times I find myself feeling bitter and angry. Also when I am out in public, at times I find myself resentful toward those who appear to be healthy. I try to remind myself, "Why Not Me?' Has anyone out there ever felt or feels the same?

[susan wheatley]

hi pogo1960, i felt exactly the same as you but you learn to accept it and deal with it you may have pd but it does not have you, your still the same person inside you just haveto learn to adjust i have had it for 5yrs and was devistated at first but it does get better you learn to live with it, what symptoms do you have if you dont mind me asking.

[heather]

Hi pogo1960
hope you are having a good day
I think everyone has had that feeling, after all we are all human ,being a carer i had terrible envy of people our age [60 and Jim 65 just out walking together and :):),adverts on the TV of people going on holiday,but it does pass,
we have said why us ,like your friend said why not, one day we will may get the answer, not that it will make any diffrence
what i do no is that it made Jim and i much closer,we have learnt to appreciate each other , and value [don't no if that's the word I'm looking for] the time we have together, at least we no what's what, some people never get that chance .

[pogo1960]

Hi Susan......
My Symptoms So Far Are Tremor In My Left Hand, I "shuffle" When Walking And Very Rigid And Slow Moving. I Believe I Have Actually Had Pd For Several Yrs. Am Still Adjusting To Meds.

Pogo1960

[ltd-addition]

Hi Susan......
My Symptoms So Far Are Tremor In My Left Hand, I "shuffle" When Walking And Very Rigid And Slow Moving. I Believe I Have Actually Had Pd For Several Yrs. Am Still Adjusting To Meds.

Pogo1960

Hi Pogo1960
Im not going to cheek my elders since i'm born in 1963 but I'm about to give you some sound advice.

You cant change the clock back so its sink or swim

Why you ? well its because you are a stonger person than the one who was supposed to have been diagnosed with PD. Now if you realised you were the stronger person, I'd bet you said to God (or fate or destiny, whatever or who ever makes the decision & dishes it out ) I'll take it for them God, because to give them PD would be too much for them to cope with.
(So when you think about it you are a Hero a knight in shining Armour)

Build up your shoulder and back muscles because God only puts on your shoulders which he knows you can handle. Thats the reason why you are shuffling . Give it a bit of time & you get used to the weight.

Soon you will be so used to it you should feel like "A young spring Gazelle" just like me!

You'r plate is full and thats why your slow, you don't want anything to fall off it yet. (Greedy !)

Don't be angry just get even against PD

There are a few hundred people on this sight, if we give everyone a task to wish you well,I reckon you'd be flying around town.

When you first noticed something was wrong go back 5 yrs again and thats about the time you put your Brain cells on sale. Now by the time your diagnosed, you only have 20% left so no more sales please , because to replenish your stock is too costly at present.

Anyway pet i'm up late so got to go, keep safe, i'm here if you want any questions answered.
ltd-addition

[Pauline]

We have all had those feeling but I really like ITD -addition answer I am sure none of us would wish this on any one we are strong we can do this smile's your way :):):)Pauline

[parkie]

hi pd sufferer, I have had pd for 9 years started meds with sinemet like you, and as time went by and I got worse, I added to my sinemet tabs, Requip 3 tabs 0.5 ml per tab per day. Some improvement in walking, however 18 months ago I tried Azilect. Big improvement one pill per day plus my sinemet dose. Now no tremor unless really stressed, normal walking, much better feeling of well being, I can laugh and smile now,and that awful feeling of tiredness has much reduced. I know I still have pd but all my friends tell me the change is remarkable

[heather]

Hi Parkie
it was so nice reading your very positive post ,and how your determination has turned your life around
thank you for sharing

[parkie]

hi heather as this is my first time to enter a forum would you help me to understand threads, postings, and quotes, parkie

[pogo1960]

thanks everyone for your wonderful advice!!! I already feel much better. I know I will be ok:)

pogo1960

[heather]

hi heather as this is my first time to enter a forum would you help me to understand threads, postings, and quotes, parkie


Hi Parkie
of course i will,did a post earlier today,will find it and re post it in hear for you
take care heather

[susan wheatley]

hi pogo1960, glad we all could help to make you feel better see its not all doom and gloom when you have pd you will have good days and bad days but keep smiling through it all it usually works for me.

[heather]

Hi Parkie
of course i will,did a post earlier today,will find it and re post it in hear for you
take care heather

Hi Parkie
this is one i made earlier:D:D so i have copied it and posted for you hope it's ok


Go to
Top left corner
If you click on Parkinsons Disease Forum ,that will take you to the main page ,look down it click on any of the main headings ,this will open up showing more topics ,just click on what interests you

if you want to answer the last post , then click on post reply type what you want, you can see what you typed by clicking on preview post, this will show you what your post will look like[using the scroll bar outside your post], you can scroll back down to your post, and change anything or add if you want to,if happy click on submit reply

If you want to answer a earlier post eg 1st 2nd etc above the last post ,then find the post, click on quote ,[bottom right hand corner] like i have on yours
type pass the [/QUOTE ] Heather [/QUOTE]
and do the same as the above

i also find [ top of the page] clicking on
User CP FAQ Members List Calendar New Posts Search Quick Links Log Out is good it shows you all the new posts since I last visited,

If you have clicked on the submit reply to soon you can
go into the edit and correct anything
it will say why edited but you don't have to put a reason if you don't want to
hope this helps

May be someone else can add more to it ,as i'm not familiar, with this particular forum

[bruce]

Hi Pogo1960
Im not going to cheek my elders since i'm born in 1963 but I'm about to give you some sound advice.

You cant change the clock back so its sink or swim

Why you ? well its because you are a stonger person than the one who was supposed to have been diagnosed with PD. Now if you realised you were the stronger person, I'd bet you said to God (or fate or destiny, whatever or who ever makes the decision & dishes it out ) I'll take it for them God, because to give them PD would be too much for them to cope with.
(So when you think about it you are a Hero a knight in shining Armour)

Build up your shoulder and back muscles because God only puts on your shoulders which he knows you can handle. Thats the reason why you are shuffling . Give it a bit of time & you get used to the weight.

Soon you will be so used to it you should feel like "A young spring Gazelle" just like me!

You'r plate is full and thats why your slow, you don't want anything to fall off it yet. (Greedy !)

Don't be angry just get even against PD

There are a few hundred people on this sight, if we give everyone a task to wish you well,I reckon you'd be flying around town.

When you first noticed something was wrong go back 5 yrs again and thats about the time you put your Brain cells on sale. Now by the time your diagnosed, you only have 20% left so no more sales please , because to replenish your stock is too costly at present.

Anyway pet i'm up late so got to go, keep safe, i'm here if you want any questions answered.
ltd-additionthis response made my day!!! Hell,IT made my life better!!!!! Wonderful way to put into words how we all feel and how we can look at having pd!!!!bruce

[heather]

I agree bruce a very positive attitude for every one , i have always said to Jim we sink or swim, and by gum we are sure learning to swim, even though it's sometimes feels like a salmon swimming up river

[jane]

hi pd sufferer, I have had pd for 9 years started meds with sinemet like you, and as time went by and I got worse, I added to my sinemet tabs, Requip 3 tabs 0.5 ml per tab per day. Some improvement in walking, however 18 months ago I tried Azilect. Big improvement one pill per day plus my sinemet dose. Now no tremor unless really stressed, normal walking, much better feeling of well being, I can laugh and smile now,and that awful feeling of tiredness has much reduced. I know I still have pd but all my friends tell me the change is remarkable

Hi Parkie I am from UK Glad to meet you.I have had PD since 1996 . I am 72 and i was on Requip at first but it didnt suit me i am now on Madopar and roprinirole and they make quite a difference . I cant walk far but get out and aabout with my carer Vi
Hope tp hear from you Bye for now Jane

[heatherwilmot]

this response made my day!!! Hell,IT made my life better!!!!! Wonderful way to put into words how we all feel and how we can look at having pd!!!!bruce

Heather Wilmot. I couldn't agree more. No-one could have said it better. Everyone will have read my views on this 'uninvited lodger', I just try to ignore him and get on with things. If I feel low a weepy movie or sad tale is a good excuse for the tears we all want to shed now and again for the 'what might have been' It isn't, won't be, can't be. so we have to get on with it. there are some lovely people out there willing to help if you let them.
Do hope life improves for you, from what I have just read there are plenty rooting for you.
Good luck,don't let the b...... get you down.
Heather Wilmot

[JD2008]

Hi Susan......
My Symptoms So Far Are Tremor In My Left Hand, I "shuffle" When Walking And Very Rigid And Slow Moving. I Believe I Have Actually Had Pd For Several Yrs. Am Still Adjusting To Meds.

Pogo1960

Pogo1960 I shuffle when I'm doing short distances like inside the house, but I have hiking sticks (telescopic) and they are great for outdoor walking or hiking. Just swing those sticks out and your feet seem to get the idea. It also makes you stand up straighter! I can hike for several km over rough ground, in fact prefer that to flat pathways.
Jennifer

[JD2008]

I'm frustrated with the forum! Probably just me, but I can't find the little 'new topic' link anywhere..............can anyone help me? thanks :D Jennifer

[Gail]

Hi,
As some of you may know, I am 47 years old and I was diagnosed with PD seven months ago. I am struggling over the acceptance of what I have. Not too long ago a friend who has serious health issues heard me say, "Why Me?" He responded by saying, "Why Not Me?"
At times I find myself feeling bitter and angry. Also when I am out in public, at times I find myself resentful toward those who appear to be healthy. I try to remind myself, "Why Not Me?' Has anyone out there ever felt or feels the same?
I just stunbled across your post. I think it is normal to think "why me". I learned to say "why not me" from a little boy on a talk show that has since died. I can't remember the boys name, the talk show or the disease he had, but I remember him saying "why not me", would it be better if it were someone esle. That little boy changed my outlook. On occasion, I still say "why me", but I quickly remember that little boy and am humbled by his attitude. Out of the mouth of babes....... Gail

[Gail]

I'm frustrated with the forum! Probably just me, but I can't find the little 'new topic' link anywhere..............can anyone help me? thanks :D Jennifer

Jennifer I have never started a new topic before, but it looks like if you go to forum tools on the main page, you can start a new topic. Gail

[Gail]

Pogo1960 I shuffle when I'm doing short distances like inside the house, but I have hiking sticks (telescopic) and they are great for outdoor walking or hiking. Just swing those sticks out and your feet seem to get the idea. It also makes you stand up straighter! I can hike for several km over rough ground, in fact prefer that to flat pathways.
Jennifer

Jennifer, I use hiking sticks too. I feel more normal out hiking than doing anything else. It is also easier for me to climb a mountain than to walk on flat ground. Gail

[heatherwilmot]

Heather W here, soon to be Tryphena, have decided to change my name, well most other things are different so why not, it is my 2nd name really.
I really wanted to say how I read the title of the thread and decided to take a look, but I have been impressed with so many positive views, it is always good to hear of people wo do not let this 'problem' interfere more than they have to.
I just get fed up when I cann't bend down, how silly is that?
I had always been able to put my palms flat on the floor with legs straight, what a picture! Now I can just about touch it with my finger tips and have a terrible time straightening my back up, still not too bad compared to some, at least I have an excuse not to keep bending down and picking things up, the grandchildren are great, always ready to "help Nanny" they volunteer I don't have to ask which is rather nice.
Still I wish you all well, keep your spirits up.
Best Wishes Heather/Tryphena

[ltd-addition]

Hi Guy's
Well I must admit we have had some laughs tantrums and lots of Wind (hee hee I mean getting stress off our chest's)

I'm pleased I have been of some benefit to you pogo 1960

It tickled me to read some of the replies because Like Bruce's Reply It made me laugh.

I'm getting used to identifying who is in pain, happy & limber or sleepless and aching with stiffness. I am tuning into what each person writes and how it's written.

OR it could be the unused part of my brain switching on !!! I hope it has it's own sat nav cos if a cure is found I don't want to stray too far from the path

Anyway I put a request in to the big DJ in the sky and requested "Serenity, contentment and pain free for a moment or two" for everyone
love and hugs

[Mary]

Hi Guy's
Well I must admit we have had some laughs tantrums and lots of Wind (hee hee I mean getting stress off our chest's)

I'm pleased I have been of some benefit to you pogo 1960

It tickled me to read some of the replies because Like Bruce's Reply It made me laugh.

I'm getting used to identifying who is in pain, happy & limber or sleepless and aching with stiffness. I am tuning into what each person writes and how it's written.

OR it could be the unused part of my brain switching on !!! I hope it has it's own sat nav cos if a cure is found I don't want to stray too far from the path

Anyway I put a request in to the big DJ in the sky and requested "Serenity, contentment and pain free for a moment or two" for everyone
love and hugs

Hi Ltd Edition
Hope I am not far behind you when they find that cure and as to Why Me as I said to my Dr " better to be told I have PD than a terminal illness"
Mary

[maryg]

hi pd sufferer, I have had pd for 9 years started meds with sinemet like you, and as time went by and I got worse, I added to my sinemet tabs, Requip 3 tabs 0.5 ml per tab per day. Some improvement in walking, however 18 months ago I tried Azilect. Big improvement one pill per day plus my sinemet dose. Now no tremor unless really stressed, normal walking, much better feeling of well being, I can laugh and smile now,and that awful feeling of tiredness has much reduced. I know I still have pd but all my friends tell me the change is remarkable

I take Requip 3mg strength tablets 3 times a day also 4 half tablets of sinimet plus throughout the day.I feel dreadfully tired about half an hour after I have taken the Requip tablets.I have an appointment to see my neurologist next month and having read your experiences of Azilect I am wondering if he will prescribe them for me instead of the Requip. Have you noticed any side effects from the Azilect at all or is it just a much better treatment for you?

[jimcox]

Well here I am , just got the wonderful news that I too have PD. Have read much about it and have decided not to let it kill me. Unfortunately my wife has been the one who has been in the dumps, not me. A family can't have both crashing at the same time. I'm sure my dumps time will come. This is the first "thread" I've read and the replies do help. When someone says "I know how you feel" , they don't. I have much to learn and plan on keeping it down as long as I can. My meds are Azilect and Mirapex, just on first month's try. Will pass on the results. Mild symptoms right now.

[suzie Q]

Best to have a positive attitude .My name is Sue i live in Tasmania and i have had P.d. 5 years i am still working have good days and some bad days.Lately more good than bad .keep positive and talk again soon

Sue

[Pauline]

Hi Jim
Sorry about the diagnoses I was diagnosed in Jan, of this year so I am new at it also . I have found having a positive attitude helps but there are times that you feel down but this little verce help me .

Life is like anewborn baby struggling to come out of it's mother womb,
Life is a struggle true enough , but just keep the faith and focus oon your go
Don't let life beat you or you will be walking around like zombies.
Keep on pushing , keep on trying , life can be whatever you make it to be.
But life can also be a bowl of cherries with whip cream and apple pie. I say this again life is you make of it.
You can achive or conquer anything it throws at you, you can"t quit or give up you have got to keep on working ,
Look higher some way , some how you are going to make it .
Good luck Pauline:):):)

[Gail]

Hi Jim,

I was diagnosed 3 years ago. Sometimes I think it is harder on my family then it is on me. A positive attitude is everything, but it isn't always easy. Hang in there, we are all here if you need to talk.

Gail

[JD2008]

Hi Pogo, and the others who answered.
I am on Azilect only - 1 pill a day - took awhile to click in - a couple of months but I have more energy and sleep better, etc.
Regarding shuffling - I tend to shuffle a bit in tight areas - such as around the island in the kitchen, but outside I use sticks (telescopic hiking sticks) and would highly recommend them to anyone. It just seems that if your arms are working well your legs seem to follow. Probably not very cool looking but I really don't care! Jennifer

[heatherwilmot]

Hi Pogo, and the others who answered.
I am on Azilect only - 1 pill a day - took awhile to click in - a couple of months but I have more energy and sleep better, etc.
Regarding shuffling - I tend to shuffle a bit in tight areas - such as around the island in the kitchen, but outside I use sticks (telescopic hiking sticks) and would highly recommend them to anyone. It just seems that if your arms are working well your legs seem to follow. Probably not very cool looking but I really don't care! Jennifer


From: Tryphena (Heather) - just logged on after doing a few jobs on my PC. Saw frustrated with PC and thought I would read on....
Hi to Pauline, Suzie Q, Gail. Jennifer,Jim and Jimcox, oh dear so many sad people, it is a horrid, horrid illness I agree, a couple of months ago I was quoting just fine, now I can hardly move, aches and pains everywhere, I think I mentioned somewhere I have been put on Re-Quip XL - slow release, just take 10 mgs once a day. feel so much better in myself but i don't think my body likes it..... I hurt in so many places, sitting down is the only comfortable thing I can do. Also I am very unsteady on my feet, and this morning I 'tottered'
backwards, grabbing a chair which fell over and fell onto a chest of drawers and hit my head on the windowsill. Its true you really do see stars!! I have hurt my right shoulder, left hip and have a bad headache, otherwise I am fine. this took place at 6 am this morning and my poor husband came rushing out of the bedroom to find me lying on the floor in the Dressing Room. Feel better now having got that off my chest. I feel that people should be given enough space to deal with things when they are first diagnosed. People do tend to treat you as if you are now rather delicate but they mean well,, and they soon get fed-up.
Anyone newly diagnosed must cope how they feel best, they should not be dictated too, most people are sensible, they learn they need their family and/or friends.
Keep smiling and don't let Mr Parky rule your life. You are still in control you know. Speak again soon. Tryphena

[suzie Q]

Tryphena

Heather so sory to hear about your fall,you were luckyyou did not break any bones ..I have been like you feeling good these past few months still having off days but them be right the next day.Ihave a real problem and if anyone has advice it would be great ....In February this year i went off all my prescribed p.d.medication .and as i have mentioned before tried the alternative aproach and was estatic with the results ..After about 4 months i wrote to my Neuro and explained what i was doing.[I live in tasmania and have to fly to melbourne for a doctors visit ]I just told him that because this was working for me i would keep on with it until it stopped working ..It also gave me a time off the reg medication ...well it has not been working for about 10 days now i have to go back to see him and am worried about what he will say .When i was on the herbal i had no dyskenesia at all i looked heaps better and felt heaps better .i am not looking forward to seeing him .I think i will give it a bit longer ...well now thats out i feel beter talk soon

Sue

[Pauline]

Hi Heather P
Sorry about your fall Please take care of your self I have a walker by my bed now at night time because I am so unsteady I keep saying I need to have a bottle of wine may be then I wouldn't be so tipsy, you and I need to share a bottle of wine maybe then we would be able to stand on our own two feet ,Take care my friend :):):)Pauline

[Juanita Mullin]

Tryphena, I am so sorry about that fall this morning. I can't tell you to be careful because I'm sure you are. I am glad your husband was there to rescue you. I hope the shoulder and hip won't stay sore too long. May tomorrow be a beautiful, relaxing day for you.

[BrightonBell]

Hi I am new member whose partner has just been diagnosed. At the moment he is fine and not taking any medication. We saw the specialist and mentioned Azilect and he was sceptical as the results of latest research has not yet been published. JD2008 you are only taking Azilect, I was wondering when you started taking it? Also SuzieQ I am very interested in what alternative therapy/redmedies you have been taking? Luckily my partner is a very positive person so is just getting on with the business of living.

[JD2008]

Hi,
As some of you may know, I am 47 years old and I was diagnosed with PD seven months ago. I am struggling over the acceptance of what I have. Not too long ago a friend who has serious health issues heard me say, "Why Me?" He responded by saying, "Why Not Me?"
At times I find myself feeling bitter and angry. Also when I am out in public, at times I find myself resentful toward those who appear to be healthy. I try to remind myself, "Why Not Me?' Has anyone out there ever felt or feels the same?
Pogo...................give yourself time! 7 months is not long enough - most of us would still be ************ed off at 7 months!
Later on you will start to accept it more (but not all the time)
most of the time now (at 2 years) I 'just carry on' but my symptons aren't too bad - I have tremors and shuffle too - I'm on Azilec one a day and it seems to be an improvement.
I sent a reply before regarding using walking sticks )telescopic - one for each hand...................really improves my walking/hiking. I would highly recommend them. I'm off to New Zealand tao visit family for 3 months at the end of this month, and have booked a long hike - about 78 km with sleepovers in 4 huts. Wish me luck! I need these goals to keep me motivated ! Jennifer

[Pauline]

Way to go Jenifer good luck on you hike you inspire us all :):):)Pauline

[suzie Q]

Hi I am new member whose partner has just been diagnosed. At the moment he is fine and not taking any medication. We saw the specialist and mentioned Azilect and he was sceptical as the results of latest research has not yet been published. JD2008 you are only taking Azilect, I was wondering when you started taking it? Also SuzieQ I am very interested in what alternative therapy/redmedies you have been taking? Luckily my partner is a very positive person so is just getting on with the business of living.


Hi Brighton Bell I have been taking mucuna pruriens look it up on the net also look under all of my posts i have said a little about it .if you have not taken any med it would be good to give it a try .i had been on medicatoin for 3 years and had a lot of side effects especially dyskenesia ,with the mucuna pruriens i had very little or none ...if you decide to order let me know and i wioll give you the website ...i think that is also on my old posts let me know hao ypou go with it ...

sue

[Juanita Mullin]

Hi Sue, What is mucuna pruiens that you are taking? I have never heard of it. I am not taking any prescription medication. I'm on 1200 mg of CoQ10. So far, so good. It hasn't stopped my symptons but I PD hasn't seemed to been progressing much with me taking it. We try to keep all the bases covered vitamin and mineral wise. Please tell me about the mucuna pruiens. Thanks. Juanita:confused:

[suzie Q]

Hi Sue, What is mucuna pruiens that you are taking? I have never heard of it. I am not taking any prescription medication. I'm on 1200 mg of CoQ10. So far, so good. It hasn't stopped my symptons but I PD hasn't seemed to been progressing much with me taking it. We try to keep all the bases covered vitamin and mineral wise. Please tell me about the mucuna pruiens. Thanks. Juanita:confused:

Hi Juanita

i have had p.d. for 5 years i have been on medication for 3 years it took 2 years to find out what was wrong with me ..I was on tasmar and madapor .I heard about Mucuna i was looking on the internet and read all about it ...so when i was having a lot of side effects especially dyskenesia from the medication i decided to try the mucuna .It is a herb used to treat p.d.in India .It is a natural form of dopamine without the side effects that the regular medication causes ..i knew that i would be able to tell from the dose if it would work for me and it did.I went off all my medication in February of this year .i feel heaps better on the herbal without all the side effects .I took 1 gram 3 times a day ..If you type in mucuna pruriens in a search engine it will tell you heaps about it .i got a lot of my info from an americian forum by just reading all the posts that people had written who had tried it.a lot of those take the mucuna as well as sinemit or madapor .I got excellent results with just the mucuna..up until about a week ago .hopefully it is something else that is the problem,I have had a houseful of visitors,might be stress I hope so becvause i fel that while i was taking it my symptoms were not half as bad.Let me know if you want the address it is on one of my posts but i will give it to you again .If you wanted to talk to me about it .It doesnt cost much to phone we talk to my daughter in scotland a lot let me know sometimes it is better to talk than type.I am having trouble with the computer keeps dropping out ..waiting for a new one to come they did not have the one we want in stock shoul;d be any day


sue Juanita just noticed you spelt it wrong

MUCUNA PRURIENS just in case you can't get it on the internet

[Gail]

From: Tryphena (Heather) - just logged on after doing a few jobs on my PC. Saw frustrated with PC and thought I would read on....
Hi to Pauline, Suzie Q, Gail. Jennifer,Jim and Jimcox, oh dear so many sad people, it is a horrid, horrid illness I agree, a couple of months ago I was quoting just fine, now I can hardly move, aches and pains everywhere, I think I mentioned somewhere I have been put on Re-Quip XL - slow release, just take 10 mgs once a day. feel so much better in myself but i don't think my body likes it..... I hurt in so many places, sitting down is the only comfortable thing I can do. Also I am very unsteady on my feet, and this morning I 'tottered'
backwards, grabbing a chair which fell over and fell onto a chest of drawers and hit my head on the windowsill. Its true you really do see stars!! I have hurt my right shoulder, left hip and have a bad headache, otherwise I am fine. this took place at 6 am this morning and my poor husband came rushing out of the bedroom to find me lying on the floor in the Dressing Room. Feel better now having got that off my chest. I feel that people should be given enough space to deal with things when they are first diagnosed. People do tend to treat you as if you are now rather delicate but they mean well,, and they soon get fed-up.
Anyone newly diagnosed must cope how they feel best, they should not be dictated too, most people are sensible, they learn they need their family and/or friends.
Keep smiling and don't let Mr Parky rule your life. You are still in control you know. Speak again soon. Tryphena

Tryphena,

Sorry to hear you took a spill. I hope you are feeling better. You are always such an inspiration to me.

Gail

[BrightonBell]

Hi SuzieQ Thanks for the info. I think I did stumble across that herb on one of the websites but didn't read up on it so will go and search for that now. My partner David is prepared to give the alternative approach a go for now as he is not yet on any medication. I think we will get the CoQ10 and Vit. E a go as well - I trust you can take these all at the same time without any probs??

Anyone with any other bright ideas they will be gratefully received.

By the way is it just me or are the medical proffession sitting on the fence with regard to anything that isn't a drug?

[suzie Q]

Hi SuzieQ Thanks for the info. I think I did stumble across that herb on one of the websites but didn't read up on it so will go and search for that now. My partner David is prepared to give the alternative approach a go for now as he is not yet on any medication. I think we will get the CoQ10 and Vit. E a go as well - I trust you can take these all at the same time without any probs??

Anyone with any other bright ideas they will be gratefully received.

By the way is it just me or are the medical proffession sitting on the fence with regard to anything that isn't a drug?
Brighton bell

yes thats how i feel,you would think that if someone found some help rather than the traditional medication that even they say you can only take for a certain amount of time before they dont help ,that they would say go ahead and try ...my doctor didn't even acknowledge that i even wrote and told him what i was doing .oh well it is look after yourself for me i will have to gather up courage and go and visit him or look for another ..In Tasmania when i was diagnosed there was not any neuroligists in hobart you had to travel by plane to
melbourne .Good luck in trying i hope it helps you it certainly did me


keep me posted


sue

[heatherwilmot]

Tryphena

Heather so sory to hear about your fall,you were luckyyou did not break any bones ..I have been like you feeling good these past few months still having off days but them be right the next day.Ihave a real problem and if anyone has advice it would be great ....In February this year i went off all my prescribed p.d.medication .and as i have mentioned before tried the alternative aproach and was estatic with the results ..After about 4 months i wrote to my Neuro and explained what i was doing.[I live in tasmania and have to fly to melbourne for a doctors visit ]I just told him that because this was working for me i would keep on with it until it stopped working ..It also gave me a time off the reg medication ...well it has not been working for about 10 days now i have to go back to see him and am worried about what he will say .When i was on the herbal i had no dyskenesia at all i looked heaps better and felt heaps better .i am not looking forward to seeing him .I think i will give it a bit longer ...well now thats out i feel beter talk soon

Sue


Tryphena here.
My quote to-day must be 'COME UP AND SEE ME SOMETIME. I have suddenly developed a very chesty cough, but have also acquired a very sexy voice, hence the Mae West quote.
Thank you susieQ; Pauline and Juanita for your good wishes, glad to report just a few minor bruises and a stiff shoulder, otherwise okay. I didnt tell you , at the time of my fall, my husband who sleeps 'in the buff', he is 6 ft and like me plump was still in bed(it was 6 am)..... Well with the chair, chest of drawers and my head on the window sill there was a lot of noise and he was out of bed and in the room almost before I hit the floor! I was in a state of shock anyway but this apparition helped me see the funny side of it.
Susie, don't worry what your Neuro will say, from what I have found they are usually very understanding when we decide to 'come off' medication, it seems an awful lot of people do
this, I did and after initially feeling good, felt quite rough, shakes, jerks etc. He just looked at me quizzically when I next visited and asked 'what are you going to do now? suggest maybe you take the meds and we will work together to get the dosage right" which we have been doing until now. Sad to say he and the PDS nurse have galloped of into the distance, (not together) leaving us all in the lurch.
Hope you all manage to sort out your difficulties. Guess what I have decided to do...... I am always busy, rarely a day spent at home. Well I have found a week,, first in November, where I have cancelled the l appointment I had and will be doing NOTHING. Will get up or not as I wish, dressed or not (I will still shower I promise!), no cooking, cleaning etc, just sit and watch TV if I wish, play on my PC. in other words it will be strictly MY TIME. hope I can do it. I never did eat my whole chocolate cake - hey, I could do that as well!!!!!
it is rather late 0001 hours. so I will away.Good Luck to you all, see you later.
Tryphena

[heatherwilmot]

Tryphena,

Sorry to hear you took a spill. I hope you are feeling better. You are always such an inspiration to me.

Gail

From Tryphena, thanks Gail, what a nice thing to say, I also find the comments and courage showed by fellow Parky people well worth my visits to The Forum, it was a wonderful idea.
i have just written rather a long scroll so will finish here, good luck. Tryphena

[Pauline]

Hi Heather p
glad to hear you are doing ok like you said it must have been quite a sight LOL,you are allways such a busy person coming and going It might be quite the shock to your system and to you hubby spending a whol month just for you butyou go girl hope we can have a natter any way best wishes Pauline:):):)

[heatherwilmot]

Hi Heather p
glad to hear you are doing ok like you said it must have been quite a sight LOL,you are allways such a busy person coming and going It might be quite the shock to your system and to you hubby spending a whol month just for you butyou go girl hope we can have a natter any way best wishes Pauline:):):)


Morning Pauline, Tryphena contacting you bright and early, hardly seemed worthwhile going to bed (0115 hrs), getting up at 0455 hrs. a quick note to say of course we will be in touch, I have looked at your picture and you look like my kind of girl, you certainly sound it, another get up and go type. Well, life is short. Mike, my husband, and Ashley my son, bet I won't be able to idle around for more than 2 days, I hate to say this but they might be right!! however I feel so exhausted at the moment the idea is lovely.
have a good day. all the best. Tryphena

[Pauline]

Hi Heather P
I havn't gone to bed yet either but going soon It is 2 am here but I won't be getting up at 4 well you have your self a good and safe day and take care :):):)Pauline good night

[Gail]

Pauline,
It doesn't sound like your sleep habits are any better than mine. It is 2:30 and I have to get up at 4:00 so should be in bed. It amazes me how little sleep I can get by with these day.


Tryphena,A whole week? From your e-mails, I agree with your husband, two days and you will be looking for something to do. Probably out working in the garden. You and your sexy voice derserve the rest.

I think that is a great idea though. I may try it. A little rest sounds nice. We have had two new babies in the past two weeks and it has been exhausting for us all. I now have a great niece that is exactly two weeks younger than mt granddaughter. The family is growing and I love it.

Gail

[Pauline]

Gail congratulation on the growing Family :):):)Pauline




Typhena
Well how was your fist day of relaxing did you make it through the day,well take care my friend Pauline

[heatherwilmot]

Tryphena(HeatherP) Quick note on way to bed, 11 mins past 12.Have had a lovely peaceful day, although a friend did call to see me, said I had not told her, oh well, we had a coffee and a chat, not too strenuous.
I am just writing a letter to a very very good friend, we met through the army, husbands served in the same Corp and we met in Germany in 1966, then both turned up in Singapore in 1970 for 2 years, having discovered they lived just 5 miles from us in Shropshire1 which was lovely. so we have known each other over 40 years. Well beginning of 2007 she began having trouble walking, in August of that year she could not move one leg at all and the other was going the same way so they operated, she was in Hospital for 5 month, is now in a wheel-chair, and is paralysed from the waist down, but it has continued to get worse so tomorrow she is off to Liverpool for anothr spinal op. She is lovely and it is so sad. She had just been getting her confidence back and would go out in her chair, she was staying at home much too much, and we have been coaxing her and bullying her, so this is a real set-back. They say they cannot make it better but can stop it from getting worse. hope they mean it this time. I tell myself I must not complain as at least I can still get about under my own steam.
Have a good day/night. thanks for all your comments, I let my husband have a read and he thinks it is great. He won't use the PC says it is too much to be bothered with. All best wishes to everyone. Tryphena.

[Juanita Mullin]

So very sad about your friend.

[Juanita Mullin]

Hi Sue,
Sorry to take so long to get back to you after you spent so much time giving me information on Mucuna Pruriens (spelled it right this time, I hope). Our computer wouldn't cooperate yesterday for me to get on line. I will check on the internet for what info I can get on that herbal. As much as can be I would like to stay natural. Thank you so much for your help. :):):)

[Pauline]

Typhena
So sorry about your friend when you here about how hard others have it make you count your blessing, and I have Many :):):)Pauline

[suzie Q]

typhena sorry to heaf about your friend

sue

[suzie Q]

Hi Sue,
Sorry to take so long to get back to you after you spent so much time giving me information on Mucuna Pruriens (spelled it right this time, I hope). Our computer wouldn't cooperate yesterday for me to get on line. I will check on the internet for what info I can get on that herbal. As much as can be I would like to stay natural. Thank you so much for your help. :):):)


juanita you definetly should try the mucuna

[wspencer]

hi pogo, i am not happy my mum has parkinsons shes my best friend but like i tell her i would rather her have pd there are much worse things that she could get. look at little kids that are dying and many more frightening deseases out there so i think as awful as it is it is something that does not kill you and there is hope, well thats what helps mum.

[heatherwilmot]

hi pogo, i am not happy my mum has parkinsons shes my best friend but like i tell her i would rather her have pd there are much worse things that she could get. look at little kids that are dying and many more frightening deseases out there so i think as awful as it is it is something that does not kill you and there is hope, well thats what helps mum.


Hi everyone, Tryphena here. Just flipped though a few of your threads, what a good mixture we are, there is no definite 'thread' running through expect our Parkinson's, so it has done some good, made us look at ourselves and our relationships a little closer yes? Still I could have done without it!!!
One of you mentioned 'wind', don't kow how the subject came about but have to tell you that I had never before suffered from - as my grandsons say 'mouth or bottom burps', in fact been a bit sniffy - if you will pardon the pun with sufferers, but one of my new pills gave me a great deal of trouble at the beginning of my treatment, most embarrassing was going into a Funeral Parlour to give details for my Mother's funeral and making several very loud popping noises just as I opened the door. I gave the hinges a very accusing look (as if they needed oiling) and sailed through to reception, luckily my blushing days are over!!
My friend has come through her op okay, we are now waiting for when she can come out of hospital again.
Mike my husband had to have a 'growth' removed from behind his ear, he was very apprehensive as cancer had been diagnosed, hopefully it will be okay but I am playing Nurse, bathing and cleaning the wound etc. a couple of times a day, good job I am not squeamish as it bled rather a lot. Don't mind anyone elses blood it is just MINE!

SUSIE - Tasmania: HOW DID YOU GET ON WITH YOUR dOCTOR AND YOUR MEDICATION? OR ARE YOU STILL PLUCKING UP COURAGE. Do keep us informed. Have to see my Doc tomorrow and don't know quite where to start, still I guess maybe it is just normal growing older pains....

Good night, and good luck all. Will be in touch.
You are all in my thoughts. Tryphena

[Juanita Mullin]

Tryphena, thank you for your post. We all, undoubtedly will have some embarrassing experiences. We could chuckle about yours--in fact I had to share it with my husband. Good luck on your doctor's visit tomorrow--I say tomorrow, but for you it is already tomorrow.
To all who read this a good night and day!:):)

[heatherwilmot]

Tryphena, thank you for your post. We all, undoubtedly will have some embarrassing experiences. We could chuckle about yours--in fact I had to share it with my husband. Good luck on your doctor's visit tomorrow--I say tomorrow, but for you it is already tomorrow.
To all who read this a good night and day!:):)



Tryphena calling, What a lovely day, looking out at the sun rising over the Breiddens, hills just a couple of miles away, its wonderful, especially after the last 2 days, which were horrendous, much too early for the sleet, ice aand snow we had. Good Morning to you Juanita, thanks for your thoughts, I am not looking forward to my visit, not too keen on Doctors, I don't mean the people themselves, mine is lovely but what they have to tell us!
Still must up and away, Paying a trip to Brazil (not literally) this weekend for the Grand Prix, I know funny woman.

OH BY THE WAY **, you are lucky I am speaking to you, I am now famous! Had a letter printed in the Parkinson's Magazine, which is published quarterly in the UK, don't know how far afield it goes, it was about my falling, and being unable to get up from, a bush in the garden. "Keep your Mobile in your pocket to summon help" being the Motto, this happened on a summer morning about 5 am, I lay there quite a while before I managed to get up! If you have the Magazine the name is Heather Wilmot (email) ha ha

Bye Bye. Tryphena.

[suzie Q]

Hi everyone, Tryphena here. Just flipped though a few of your threads, what a good mixture we are, there is no definite 'thread' running through expect our Parkinson's, so it has done some good, made us look at ourselves and our relationships a little closer yes? Still I could have done without it!!!
One of you mentioned 'wind', don't kow how the subject came about but have to tell you that I had never before suffered from - as my grandsons say 'mouth or bottom burps', in fact been a bit sniffy - if you will pardon the pun with sufferers, but one of my new pills gave me a great deal of trouble at the beginning of my treatment, most embarrassing was going into a Funeral Parlour to give details for my Mother's funeral and making several very loud popping noises just as I opened the door. I gave the hinges a very accusing look (as if they needed oiling) and sailed through to reception, luckily my blushing days are over!!
My friend has come through her op okay, we are now waiting for when she can come out of hospital again.
Mike my husband had to have a 'growth' removed from behind his ear, he was very apprehensive as cancer had been diagnosed, hopefully it will be okay but I am playing Nurse, bathing and cleaning the wound etc. a couple of times a day, good job I am not squeamish as it bled rather a lot. Don't mind anyone elses blood it is just MINE!

SUSIE - Tasmania: HOW DID YOU GET ON WITH YOUR dOCTOR AND YOUR MEDICATION? OR ARE YOU STILL PLUCKING UP COURAGE. Do keep us informed. Have to see my Doc tomorrow and don't know quite where to start, still I guess maybe it is just normal growing older pains....

Good night, and good luck all. Will be in touch.
You are all in my thoughts. Tryphena

HiTryphena


Glad your friend is doing ok.Yes i have written to my neuroligist io wrote because it is a trip by plane to go and see him.I told him i was offf the medication he gave me and was trying the mucuna pruriens and was doing really well.i also explained that while the herbal medication was working i wanted to keep on with that.it was a really nice letter i also said that when the mucuna stopped working for me i would go back on my reg medicationand hoped that i could still be able to have him as my doctor .i ended with hope to hear from you soon...and that was that not heard a word from him ..so i suppose i have to find another i thought he would have written or something,I suppose he really didn't have to but i thought maybe he might .well i am much better on the mucuna for the time being so am going to keep with that ..i have no side effects on this ..hope you have some good news from your doctor talk to you soon

sue

[Pauline]

Hi Tryphena
Glad your friend is doing ok and will keep my fingers crossed for your husband ,that the test come back negative,
And I bet he loves all the attention from a good nurse like you hope you have a good day , and know more falls :):):)Pauline

[Juanita Mullin]

TRYPHENA, CONGRATULATIONS ON YOUR BEING PUBLISHED!!! Just to think we are friends with a celebrity!!!!
;) :) :) Juanita

[heatherwilmot]

TRYPHENA, CONGRATULATIONS ON YOUR BEING PUBLISHED!!! Just to think we are friends with a celebrity!!!!
;) :) :) Juanita


Tryphena here, Hello, Pauline, Susie, Juanita and anyone else who is around.
Sorry about your Neurologist, I wrote to mine, complaining about lack of care, saying I felt I had been abandoned etc, well,I was feeling sorry for myself. and he rang me at 7 in the evening for a chat, maybe yours is on holiday, cann.t you send an email to his Department, requesting an acknowledgement that he received it. It is amazing what a little cheek will do!!
Re my visit, it appears that I have arthritis, some other joint or muscle disorder, cann't remember the name, reminded me of neuralgor, can't spell it. my knee requires an op but 'it is not serious enough' if I was a pro footballer I would have to have it done..... He has given me all sort of tablets, told me to discuss things with another specialist I am seeing next week. I will then require tablets to alleviate problems caused by the one tablet then something to negate that tablet, crazy world!!!
Anyway time to 'see to my husband's wounds', he seems very cheerful, the sun shone all day and that made us all feel better.
Good luck, will be back soon. regards. Tryphena.

[Gail]

Tryphena,

I knew yoi were destined for greatness. I think it was the name change that did it. I hope this finds you doing better,

Gail

[jimcox]

Tryphena,

Sorry to hear you took a spill. I hope you are feeling better. You are always such an inspiration to me.

Gail

From Jim,
Don't know all the in's and out's of this forum yet but your unfortunate spill is what bothers me, maybe most. I really hope you are doing OK.
How long have you had this darn thing, like I said I'm new. I read all of the symptoms and see most in me but know that I am overseeing these things, at least for now.
Stay as positive as you can. I have many people keeping me in their prayers, you are in mine.
take care,
Jim