still trying to fight but losing hope

[Tana]

Well, folks here goes..
Was diagnosed in 2003, tremor and micrographia most troublesome.Entered in a drug study which the co. then decided not to market (still participate in the follow up)Am now on Sinemet CR 200/50 seven times a day. Have tried Amantadine (ineffective),Mirapex (hypomania),Comtan (major depression),Requip (passing out/vomiting) and currently trying Selegiline.Also on Effexor XR and Cipralex for depression.Imovane for sleep.Still working full-time at a stressful job..and we know what stress does to dopamine ! And every day is different !I try to exercise but usually by the end of the day I'm too crocked up with dyskinesia , but still try to get to the gym, walk the dog.No family.Neurologist 5 hrs away.Work to get social contact and $ to live. My boss, friends and docs say "Why not go on disability?" but not mentally there yet.Thinking seriously about DBS, seeing as how the drug options have about run out.Try to keep relatively positive, but some days...well,like everyone some are better than others.I know I'm more fortunate than many, but damn, it gets lonely!Try to keep updated on the latest developments, eat right etc. By the way,another good web-site is Patients Like Me.Anyone have any insights/data on DBS? And thank you, Lianna!

[MargieA]

Well, folks here goes..
Was diagnosed in 2003, tremor and micrographia most troublesome.Entered in a drug study which the co. then decided not to market (still participate in the follow up)Am now on Sinemet CR 200/50 seven times a day. Have tried Amantadine (ineffective),Mirapex (hypomania),Comtan (major depression),Requip (passing out/vomiting) and currently trying Selegiline.Also on Effexor XR and Cipralex for depression.Imovane for sleep.Still working full-time at a stressful job..and we know what stress does to dopamine ! And every day is different !I try to exercise but usually by the end of the day I'm too crocked up with dyskinesia , but still try to get to the gym, walk the dog.No family.Neurologist 5 hrs away.Work to get social contact and $ to live. My boss, friends and docs say "Why not go on disability?" but not mentally there yet.Thinking seriously about DBS, seeing as how the drug options have about run out.Try to keep relatively positive, but some days...well,like everyone some are better than others.I know I'm more fortunate than many, but damn, it gets lonely!Try to keep updated on the latest developments, eat right etc. By the way,another good web-site is Patients Like Me.Anyone have any insights/data on DBS? And thank you, Lianna!

Hi Tana, My name is Margie. While I do not have PD I am caregive for my husband who was diagnosed three years ago. He has had some tough times but we try to stay positive most days. We are both senior citizens and PD really threw us a curve. But we don't give up hope. And please with all your difficulties dealing with the meds and all the stress you are living through try to get a support group or just one person you could see to give you help. I don't know if you have Social Security where you live. If you do, or something like it maybe you could find out if there is a special clause that would give benefits to PD patients as it is a lifetime disability.

Your neurologist is a good one for you I presume. But 5 hours away is no small fete, even if someone drives you. That's a long travel both ways. Would you like to find someone closer?

I know nothing about DBS. But I hope you find meds that work with you and help you very much.

Please don't think this as silly but talk to your dog. Our animal friends understand our emotions and feelings I believe. Sometimes they know our moods and needs before we do.

I hope for you something so positive that you can face what you have on your plate and even smile once in awhile.

Sincerely, Margie

[heather]

Hi Tana
I am also a carer, for my Husband Jim 65 years i will be 60 August
I have cared for Jim for 12 years ,we have had or up's and down's, but have come through the down's and enjoyed the up's/good , and will continue to do so
Take care think positive and never never give up hope , just come on hear and chat, chat chat

[redImp]

Well, folks here goes..
Was diagnosed in 2003, tremor and micrographia most troublesome.Entered in a drug study which the co. then decided not to market (still participate in the follow up)Am now on Sinemet CR 200/50 seven times a day. Have tried Amantadine (ineffective),Mirapex (hypomania),Comtan (major depression),Requip (passing out/vomiting) and currently trying Selegiline.Also on Effexor XR and Cipralex for depression.Imovane for sleep.Still working full-time at a stressful job..and we know what stress does to dopamine ! And every day is different !I try to exercise but usually by the end of the day I'm too crocked up with dyskinesia , but still try to get to the gym, walk the dog.No family.Neurologist 5 hrs away.Work to get social contact and $ to live. My boss, friends and docs say "Why not go on disability?" but not mentally there yet.Thinking seriously about DBS, seeing as how the drug options have about run out.Try to keep relatively positive, but some days...well,like everyone some are better than others.I know I'm more fortunate than many, but damn, it gets lonely!Try to keep updated on the latest developments, eat right etc. By the way,another good web-site is Patients Like Me.Anyone have any insights/data on DBS? And thank you, Lianna!


Hi Tana,
I'm luckier than you as Sinemet Plus & Requip work pretty good for me (9 years since diagnosis). But, pardon my ignorance, just what does stress do to dopamine; gobble it up?
Kind regards,
redImp

[parkie]

hi I have had pd for 9 years I used to have 3 125 cabilev (sinamet) and 3 equip 0.5 . now I take one Azilect and two carbilev and I am much better than I was 2 years ago. side effects some dry patches of skin on my scalp and my eyes itch from time to time, however the benefits are superb you would not know I had pd apart from my soft voice and slow response time when speaking. I am experiencing a very slow but definite improvement in regard to pd symtoms, I still suffer from loss of smell, slowness of movement in the mornings until the pills kick in, then some very short periods of left toe and leg cramp. In the beginning it was the loss of ability playing golf and difficulty walking that flagged up my problem now I have recently taken 3 off my golf handicap not bad at 70 years old

[susan wheatley]

hi tana, hope your ok today, i was diagnosed in 2003 but looking back probably had it longer iam also taking selegaline along with neupro patches and co beneldopa which seems to have improved things just remember when your feeling low theirs always someone worse than you.

[Drew Saunders]

Hi Tana,
I'm luckier than you as Sinemet Plus & Requip work pretty good for me (9 years since diagnosis). But, pardon my ignorance, just what does stress do to dopamine; gobble it up?
Kind regards,
redImp

Hi redImp, I believe that adrenaline does nulify to a degree dopamine for the period that it is happening and stress creates adrenaline. For instance, if you are watching sport such as football or rugby on the TV or live do your tremors increase with your excitement then abate afterwards? Mine do. There are a number of factors which create adrenaline and stress being one of the more obvious areas. Anger and fear also.
I even get it when my keyboard misspells words! Must be a software fault!
Be well
Regards
Drew

[heather]

hi I have had pd for 9 years I used to have 3 125 cabilev (sinamet) and 3 equip 0.5 . now I take one Azilect and two carbilev and I am much better than I was 2 years ago. side effects some dry patches of skin on my scalp and my eyes itch from time to time, however the benefits are superb you would not know I had pd apart from my soft voice and slow response time when speaking. I am experiencing a very slow but definite improvement in regard to pd symtoms, I still suffer from loss of smell, slowness of movement in the mornings until the pills kick in, then some very short periods of left toe and leg cramp. In the beginning it was the loss of ability playing golf and difficulty walking that flagged up my problem now I have recently taken 3 off my golf handicap not bad at 70 years old

Hi Parkie
Sounds like you are well in control
congratulations on your golf , sounds good for 70 to me :D:D:D

[bruce]

Well, folks here goes..
Was diagnosed in 2003, tremor and micrographia most troublesome.Entered in a drug study which the co. then decided not to market (still participate in the follow up)Am now on Sinemet CR 200/50 seven times a day. Have tried Amantadine (ineffective),Mirapex (hypomania),Comtan (major depression),Requip (passing out/vomiting) and currently trying Selegiline.Also on Effexor XR and Cipralex for depression.Imovane for sleep.Still working full-time at a stressful job..and we know what stress does to dopamine ! And every day is different !I try to exercise but usually by the end of the day I'm too crocked up with dyskinesia , but still try to get to the gym, walk the dog.No family.Neurologist 5 hrs away.Work to get social contact and $ to live. My boss, friends and docs say "Why not go on disability?" but not mentally there yet.Thinking seriously about DBS, seeing as how the drug options have about run out.Try to keep relatively positive, but some days...well,like everyone some are better than others.I know I'm more fortunate than many, but damn, it gets lonely!Try to keep updated on the latest developments, eat right etc. By the way,another good web-site is Patients Like Me.Anyone have any insights/data on DBS? And thank you, Lianna!Tana, I had to retire early because of stress. Took some big adjustments on my part. Another thing stolen by pd. But I did adjust and have found other ways to stay afloat. I have been working on a novel. My ability to concentrate has improved some because of this actvity. I do loose interest and put it aside for awhile. I take meds. for severe depressin but I have suffered from it. Didn't know what it was for years. I have to hve strong meds. to sleep. I seem to require more sleep all the time. I get down and I think about a woman who lives in my buildin g whose head is completely bent down in the front. She can't look up at all. I think about how difficult every little task must be for her. Then I feel foolish for feeling sorry for myself. Well we do what we have to do to cope!!!!!bruce

[Pauline]

It is hard what you are going through but keep up the fight and keep coming to the foram if nothing may be we can cheer you up and if you look around there are always some one worse off a friend of mine she is just in her early 40s and she was diagnosed with ALS and I just look at her and think god how lucky I am just to have PD and coming here to this forum helps there is always some one here that undestands what you are going through :):):)Pauline

[heather]

Hi Parkie
Sounds like you are well in control
congratulations on your golf , sounds good for 70 to me :D:D

hi Parkie
Jim has terrible dry skin, and wet patches, Doctor gave him a steroid cream that made it worse:mad:, then a friend told me about the. Body shop do "Body butter" it is expensive, but you can buy a small pot to try first, as it turns out cheaper for the large tub, when i first put it on he went like a beetroot :eek: but after a few minutes it all calmed out, so i suggest try a little area ,and you only need a very small amount so it last for ever .I use it on my feet when Jim's not looking lol lol

[heather]

So True Pauline and drew
we are he to help each other,be it PD or carer,we are all in the same boat, but having fun together and supporting each other through thick and thin, i have never felt so good since i joined on hear, it's turned my life around, just have to make sure i do all my chorus before i turn my computer on :):)

[bruce]

Well, folks here goes..
Was diagnosed in 2003, tremor and micrographia most troublesome.Entered in a drug study which the co. then decided not to market (still participate in the follow up)Am now on Sinemet CR 200/50 seven times a day. Have tried Amantadine (ineffective),Mirapex (hypomania),Comtan (major depression),Requip (passing out/vomiting) and currently trying Selegiline.Also on Effexor XR and Cipralex for depression.Imovane for sleep.Still working full-time at a stressful job..and we know what stress does to dopamine ! And every day is different !I try to exercise but usually by the end of the day I'm too crocked up with dyskinesia , but still try to get to the gym, walk the dog.No family.Neurologist 5 hrs away.Work to get social contact and $ to live. My boss, friends and docs say "Why not go on disability?" but not mentally there yet.Thinking seriously about DBS, seeing as how the drug options have about run out.Try to keep relatively positive, but some days...well,like everyone some are better than others.I know I'm more fortunate than many, but damn, it gets lonely!Try to keep updated on the latest developments, eat right etc. By the way,another good web-site is Patients Like Me.Anyone have any insights/data on DBS? And thank you, Lianna!
Tana, I have thought about all day. I hope you will accept the people in this forum as your family and support system. Any time you feel low;let me know! I'll help any way I can.Please do not give up! there is always hope . I think each day may be the day they say I've found something to really help with the control or stoppage of pd!!!!bruce

[ltd-addition]

Tana, I have thought about all day. I hope you will accept the people in this forum as your family and support system. Any time you feel low;let me know! I'll help any way I can.Please do not give up! there is always hope . I think each day may be the day they say I've found something to really help with the control or stoppage of pd!!!!bruce

Well said Bruce !
ltd-addition

[Drew Saunders]

Tana, I second what Bruce said. We are all in the same boat and it ain't sinking.
I have found this forum great and hope you utilise it often, be well, Drew

[heather]

Tania
I fully agree with all the above post's , i can only speak as a carer,i have learnt so much, and can't remember when i :) so much,we are all in the same boat, be it PD or carers, but together we/i will get through it , if i was alone again now I would sink,i have had my spirits lifted,i don't have to pretend
any more that everything is fine,i no if i/we have a bad day , people on hear will listen,and be honest, not just yes and no in the right place, hope that makes seance Tania
take care

[suzie Q]

Tania

Dont give up you cant let this get the better of you .We are all here together. .Maybe you could cut your hours down a little that might make it easier .You have to look after yourself .there is always hope .....I hope you are feeling better by the time you read all the posts and know that you gave friends who understand


ALL THE BEST
SUE

[grldnklly]

Hi, I just want to agree with what everyone else is saying. This forum is great. I am a carer and I have to say the biggest problem I have had is not knowing what to expect and not knowing what is or what is not parkinsons. I am now addicted to this forum. Every day I learn something new. I didn't know that a lot of what my father was suffering was linked to his parkinsons (disturbed sleep, restless legs, itchy legs, itchy eyes etc). I have learnt so much through this forum and have been able to share the information withhim. I also now know that my father and I are not the only people effected by this disease and that there are other people out there who not only understand what is happening, but are willing to share their experiences. So thanks everyone. So don't lose hope, instead use your experiences to help others in the same boat as yourself. God bless

[MargieA]

Tana, I have thought about all day. I hope you will accept the people in this forum as your family and support system. Any time you feel low;let me know! I'll help any way I can.Please do not give up! there is always hope . I think each day may be the day they say I've found something to really help with the control or stoppage of pd!!!!bruce



Hi Tana,

I'm so glad you are here with all of us on the Forum.

I can only speak to you as a caregive. My husband Tony was diagnosed three and a half years ago.

Please, keep on trying to cope with the PD but DON'T lose hope. All of us get to a low point once in awhile...the trick is not to stay there. Patients as well as caregivers are all in the same boat, experiencing PD in different ways. The thing is it's a large boat filled with many caring, loving, hopeful people, which you have just joined. We'll not only help you keep this boat afloat, we'll be here for you whenever you need a friend.

So please join the rest of us in stamping out PD for good by staying positive as much as you can. I firmly believe there is hope for PD patients. Supposedly there is a new medication due next year. They are always coming up with a new help. We don't know when - but it could be soon. But until then, all of us will stick together through thick and thin and we will get through it.

Stay with us, we need you.

Margie :)

[heather]

Tania

Dont give up you cant let this get the better of you .We are all here together. .Maybe you could cut your hours down a little that might make it easier .You have to look after yourself .there is always hope .....I hope you are feeling better by the time you read all the posts and know that you gave friends who understand


ALL THE BEST
SUE

Tania
2years i cut my hours i did it slowy
i went part time first 9am-1am, took a little time to a just to the money,but when i took a look at petrol a month i saved , food in work ,it out wade the peace of mind and energy
then last year i cut it down to 3 days a week i don't work FRI SAT Sunday and it has made such a difference not only just to me but Jim as well,i now find i can care for him,and have time to do the job's that where getting neglected