Hi, I'm Rikki...

[Rikki]

Hi I'm Rikki and I was diagnosed with Parkinson's 4 years ago. I live in South Australia and I run a very large Performing Arts faculty at one of the State's largest high schools.:cool:

Up until this year I managed to mask/hide and compensate for the disease (with an enormous amount of support from my very competent team of teachers and support staff - and of course my family). I basically broke down during class at the beginning of the year. I collapsed and couldn't concentrate or focus - none of my usual techniques or medication was able to get me back in the classroom. So I finally succumbed to the pressure from basically everyone, and took the last two terms off. Everyone began opening up to me about how worried they'd been about me for some time - apparently I was a permenent 'grey' colour. In hindsight I wished they'd spoken up before I broke down.:rolleyes:

I'm feeling a lot better now (apparently I have 'colour' again), and I'm not scheduled to return to work until October. I'm actually very nervous about going back! I miss the theatre and the challenges of mounting a major performance/show, and I miss working with the kids, but I'm now very afraid of ending up like I was before. My wife wants me too retire, but I'm only 53 years old, I'm not ready to stop work yet - we also are not financially established the way we planned to be and I don't feel as if I can afford to retire.:confused:

I hate having Parkinson's but I've resigned myself to it. My tremors are manageable but the fatigue really gets me down and the anxiety/panic attacks are scary, but I have a very supportive partner and a great neurologist and GP (family doctor). I've finally accepted my condition and am better for it. I want to thank Lianna Marie (and her mum) for the books, the advice and this forum - a wonderful legacy and a comfort to us in all corners of the globe.:)

Rikki

[suzie Q]

Hi Rikki

I was diagnosed with p.d 3 years ago have had it for 5 years ..your story sounded like mine for 2 years i did not know what was wrong looked like death warmed up etc friends and family all worried about me .Thankfully that is in the past i am heaps better now ,so there is life after diagnoses .If you are ablle to do the work you should keep up with it only you will know how u feel .I live in australia too actually Tasmania .this is a great site to come for information and especially friendship .it is great to talk with others who understand weatger they be people with p.d or their caregivers .you get heaps of support and information from everyone on the forum ..hope to talk soon

Sue

[Pauline]

Hi Rikki
Welcome to the forum I am Pauline and I live in Canada ,and I have PD, This is a great place to come there are a lot of people from all over the globe with of information , The fatigue is the hard to handle but the main thing is you get lots of rest If you are not ready to give up work I would continue you will know when the time comes ,keep doing thing well you can well nice to have you aboard :):):)Paulinehttp://i302.photobucket.com/albums/nn95/Paulineby2000/flob97fd28d5500_myspacebutterflyros.gif

[Gail]

Hi Rikki, Welcome to the forum. I am 53 and was diagnosed with PD three years ago. My family was ready to have an intervention with me because I looked so bad and wouldn't go to the doctor. When I finally went, it took me six months to tell my family what was wrong and I kept it from my work for a couple more years. It was very liberating when I came clean. You will love these people and learn alot from them. I hate having PD too, but it has become less scary since joing this group. I hope it helps you as much as it does me. Gail

[Drew Saunders]

Hi I'm Rikki and I was diagnosed with Parkinson's 4 years ago. I live in South Australia and I run a very large Performing Arts faculty at one of the State's largest high schools.:cool:

Up until this year I managed to mask/hide and compensate for the disease (with an enormous amount of support from my very competent team of teachers and support staff - and of course my family). I basically broke down during class at the beginning of the year. I collapsed and couldn't concentrate or focus - none of my usual techniques or medication was able to get me back in the classroom. So I finally succumbed to the pressure from basically everyone, and took the last two terms off. Everyone began opening up to me about how worried they'd been about me for some time - apparently I was a permenent 'grey' colour. In hindsight I wished they'd spoken up before I broke down.:rolleyes:

I'm feeling a lot better now (apparently I have 'colour' again), and I'm not scheduled to return to work until October. I'm actually very nervous about going back! I miss the theatre and the challenges of mounting a major performance/show, and I miss working with the kids, but I'm now very afraid of ending up like I was before. My wife wants me too retire, but I'm only 53 years old, I'm not ready to stop work yet - we also are not financially established the way we planned to be and I don't feel as if I can afford to retire.:confused:

I hate having Parkinson's but I've resigned myself to it. My tremors are manageable but the fatigue really gets me down and the anxiety/panic attacks are scary, but I have a very supportive partner and a great neurologist and GP (family doctor). I've finally accepted my condition and am better for it. I want to thank Lianna Marie (and her mum) for the books, the advice and this forum - a wonderful legacy and a comfort to us in all corners of the globe.:)

Rikki

Hi Rikki
I was diagnosed 8 years ago. I take sinemet and Azilect for tremor.
I was prescribed some time ago with diazepam (Valium) for panic attacks and it works very well for me. I am permitted to take up to 6 per day but have only ever had to take 3 on any given day. 2mg strength. I suggest you discuss this with your doctor. I hope you are having a good day, Drew

[Elaine May]

Hi Rikki
I was diagnosed 8 years ago. I take sinemet and Azilect for tremor.
I was prescribed some time ago with diazepam (Valium) for panic attacks and it works very well for me. I am permitted to take up to 6 per day but have only ever had to take 3 on any given day. 2mg strength. I suggest you discuss this with your doctor. I hope you are having a good day, Drew

Hi, I am Drew's wife and I can verify what Drew has said. sometimes we could not go anywhere or do anything because of th panic attacks, but now we do get out occasionally. What Drew didn't say is that the diazepam is also a muscle relaxant and so the stress of having you limbs feeling tired and over worked is lessoned therefore making the stress less. Good luck - it could be more stressful NOT doing the thing you love - just keep taking a rest when you can. A Power Nap could work wonders!

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspindian32acopy.jpg
I'm Heather, and care for my husband Jim for over12 years, he has a illness that mimics PD
Jim gave up work over 12 years ago, as he was continually falling, he was off sick for the first 6 months, then they offered him early retirement [age 54]. so he never got back to work.
Jim for many years wished he had gone back to work. just to prove to himself he couldn't work.. If you have got good honest friends in work, I would think of going back to try, or you will always wonder, also you need to close that chapter in your life,before you can open/start the next one.
Find a good true honest work friend/friends and talk it over with them, before you make a big decision, you may be able to wind down slowly,[go part time] as the less stress Physically and mentally better,
On the subject of Diazepam,
Jim was like a tin soldier, he could hardly move his arms, and legs for me to dress him,i would have to rock his elbows to lift them to put a top on, and quiet often he would have a panic look on his face, and get red in the face. I read on hear a post Drew did, and thought in for a penny in for a pound, and i couldn't believe it, after a few days of 2mgm twice a day [ his GP put him on 2 mgm 3xday as needed] it is much easier, and if he does get a panic attack i just give him a extra 2 mgm and with in about 10 min he relaxes, If you do try it, be prepared for the first couple of days to feel a little sleepy, I started Jim on it on weekend, and by the Monday he was fine, he is very small in statue, and this does make a difference,and you will have to up or down it to suite your body weight, so be patient
Good luck in all the decissions you make in your life,look forward to more posts off you

[Rikki]

Thank you to all of you for your replies and your advise, it is most comforting and truly appreciated.

Rikki

[suzie Q]

Glad you enjoying the forum Rikki ,it is great to talk to others who are going through similar things as you are .It is a great place to learn how others with p.d cope.When you read about things others are going through u might think that happens to me too .It is good to know that you are not alone there is always someone here who understands or been through similar .Talk to you soon your aussie friend

Sue

[heatherwilmot]

Hi Rikki, I wrote a very long reply to your letter about 10 mins ago and when I clicked for it to be sent I was advised I was not logged in, and it disappeared. would not have minded if it had been two lines.
May not get all of it this time so you can be grateful!!
I had been discussing Parkiinsons with friends just before I saw your letter, I was diagnosed in 2002 and I am now 73. It took me a while (2/3 months) to actually accept I had PDS, I was diagnosed and offered treatment very quickly, take Re-quip(ropinirole) and Sinimet, plus Fluoxetine (happy pill) which I have started and stopped a few times over the years but must now admit it really does help. I also take Atenolol for Angina, and have diazaphan for when I visit the Dentist or have to go somewhere where there are crowds or I am feeling uptight.
It has taken me a while but I have now convinced my wonderful friends and Mike my lovely husband that I really do know at my age what my limitations are. They now leave me to get on with my life, being there whenever I need them, which is often. My husband sighs and tuts a few times when he catches me doing something he thinks I should leave to him, but generally we have a truce. those who care for and also take care of us are of course concerned for our welfare but I am determined to run my life my way, not being dictated to by my body, which of course does a great deal of dictating or by those I love and who love me.
It is important matters are discussed fully as everyone is involved but we are still the same person as we always were, we have just got a rather unexpected and unwanted guest to stay named Mr Parky, and I tell my friends on the rare occasion when I am unable to do something that Mr Parky is making himself unpleasant and as he is a house-guest I have to cater to his whims so I must take a rain-check. I lead a very full life and will continue to do so for as long as I possibly can, which hopeully will be for a while yet.
Going on line and finding Lianna Marie, both her book and forum, have been a blessing, don't know how I managed without them, I love reading all the letters, and with Heather(senior) living up the road, just over the Border in Shropshire, England, and me passing practically in shouting distance when I visit my grandchildren in Chester (I do shout as I pass but don't think she can hear me!) I feel I have found lots of distant friends and one almost within touching distance.
I do hope you sort out your problems soon, any worry is not good, discuss, argue if necessary, but in a friendly manner, everyone involved has to have input into the decision but the final word has to be yours. If you can reach a decision without hurting anyone so much the better, but I doubt you will get everyone to agree. sorry, but I have to have my 3 pennuth, (hope you know the expresson)I think you need to carry on as normally as is possible under the circumstances, my husband says it is my 'bl....y minded streak', he may be right but better than giving in, Mr P is in too many homes so try not to let him ruin yours. I send you many positive thoughts and hope things get sorted. Friends (and you now have oodles more than you had before you sent out your first thread on the Forum) are important in our lifes so make use of them.
Best wishes to you both. Heather(Prill)

[heatherwilmot]

Hi Rikki, I wrote a very long reply to your letter about 10 mins ago and when I clicked for it to be sent I was advised I was not logged in, and it disappeared. would not have minded if it had been two lines.
May not get all of it this time so you can be grateful!!
I had been discussing Parkiinsons with friends just before I saw your letter, I was diagnosed in 2002 and I am now 73. It took me a while (2/3 months) to actually accept I had PDS, I was diagnosed and offered treatment very quickly, take Re-quip(ropinirole) and Sinimet, plus Fluoxetine (happy pill) which I have started and stopped a few times over the years but must now admit it really does help. I also take Atenolol for Angina, and have diazaphan for when I visit the Dentist or have to go somewhere where there are crowds or I am feeling uptight.
It has taken me a while but I have now convinced my wonderful friends and Mike my lovely husband that I really do know at my age what my limitations are. They now leave me to get on with my life, being there whenever I need them, which is often. My husband sighs and tuts a few times when he catches me doing something he thinks I should leave to him, but generally we have a truce. those who care for and also take care of us are of course concerned for our welfare but I am determined to run my life my way, not being dictated to by my body, which of course does a great deal of dictating or by those I love and who love me.
It is important matters are discussed fully as everyone is involved but we are still the same person as we always were, we have just got a rather unexpected and unwanted guest to stay named Mr Parky, and I tell my friends on the rare occasion when I am unable to do something that Mr Parky is making himself unpleasant and as he is a house-guest I have to cater to his whims so I must take a rain-check. I lead a very full life and will continue to do so for as long as I possibly can, which hopeully will be for a while yet.
Going on line and finding Lianna Marie, both her book and forum, have been a blessing, don't know how I managed without them, I love reading all the letters, and with Heather(senior) living up the road, just over the Border in Shropshire, England, and me passing practically in shouting distance when I visit my grandchildren in Chester (I do shout as I pass but don't think she can hear me!) I feel I have found lots of distant friends and one almost within touching distance.
I do hope you sort out your problems soon, any worry is not good, discuss, argue if necessary, but in a friendly manner, everyone involved has to have input into the decision but the final word has to be yours. If you can reach a decision without hurting anyone so much the better, but I doubt you will get everyone to agree. sorry, but I have to have my 3 pennuth, (hope you know the expresson)I think you need to carry on as normally as is possible under the circumstances, my husband says it is my 'bl....y minded streak', he may be right but better than giving in, Mr P is in too many homes so try not to let him ruin yours. I send you many positive thoughts and hope things get sorted. Friends (and you now have oodles more than you had before you sent out your first thread on the Forum) are important in our lifes so make use of them.
Best wishes to you both. Heather(Prill)

[susan wheatley]

hi rikki,
i have only just read your post welcome to the forum i am 48 and was diagnosed 5yrs ago and thankfullyat the moment things are not progressing to fast sorry you,ve not been well i was off work for 3mths last year things just got the better of me and i wasnt on meds then but am now they work most of the time, once again welcome.