Sorry about that i had to answer the phone im going to the Jubilee wing at N T G H to visit my buddies Prof Walker Annete Katherine Louise Anka and all the other friends in THE PARKINSONS CLINIC AND the call was from Kath enquiring as to my wellness,
So as I was saying I wasnt even born yet when my uncle Des passed away and this is why my Mam called me Des as she said he was the best of the family the kindest most affectionate loving intelligent clever witty funny very handsome young man he would help anyone and never turned any one away that was in need, so my Mother was surely very correct in naming me for apart from not sufferingg fools gladly I am a xeroxed full on ccopy with emphasis on the Handsome oh yes one more thing I am also very modest and humble to be able to post to all you fine folks on thhis forum.
Now as you ccan see I am miles off track after the first 2 years nothing much happened but you know when youu are outside taking the dog for a walk gardening washing the car or any thing at all (no not that) and you can sense in the air , something you cant quite put your fing then you hear a distant rumble ,,, no no no wait for it its not time for tea ,, its a big storm and iits heading your way, so you go indoors and the storm crashes into your life lightnining YeS I KNOW BUT ITS A STRORM welll parky is like thatt my frriends it is only just perceptable then it totures with manyy side effects the you get the etter of it and all is peacefull once again oh yyou will get the odd rumble, NO ITS NOT FISH AND CHIPS TIME but you will bbetter BLACKHEART as lonng as you keep fighting m Brotherss and Sisters in ARMS you will needs your arms must ggo now as beloved wants t shop so I am looking for my crash hat and first aid kit I will return to this post when I return,,, sorrrrry its the hospital not shops than k god for tthat she is struggling to get my wheel chair ito our little yaris ,when we return I have some pointing to do that will keep her busy FED B F N exlike
2nd week on XL and now upped to 12mg, very little nausea first day then none after. But, I am not noticing much change, little if no more mobility, tremor no change still slight at times. Maybe a bit less tiredness and better posture.
In another two weeks will be upping by 2mg again,
Question, if wife gets to her max of 16mg a day and there is no significant improvement would this mean its not the drug for her?, consultant has said he will add a small amount of levodopa in a few months if necessary, is this likely to make a big difference?
Hello Exile - I must admit I did notice a big difference in taking Ropinirole XL (now take 18mg) daily, this is my seventh year of having PD, just been prescribed Sinimet three times a day alongside Ropinirole. Not sure if levadopa will make any difference with your wife, we all react in different way to the meds and I think it's all trial and error at the moment, but looking on the bright side I hope it helps.
Exile try not to disheartened all med staff have their own views/ideas about meds and what to prescribe and you cannot compare as we all react differently. I was prescribed 8mg ropinerole, levopda small dose and azilect. moved area new doctor and now on azilect/rasagline and 4mg ropinerole and doctor told me more physio, excercise to feel better. Its a tough one we all want to take the least amount of drugs because of side effects but we have a life to live so whatever gets your wife through the day is all that matters. The amount of meds taken is not a true reflection of progression , i might take less meds at 8yr point but not be as active/mobile as someone else on more meds but may be at same progression point, if that makes sense.
Hi I had same symptoms of your o/h. I had them for about 5 years before diagnosed. I was put on Azilect first - not to really improve symptoms but Specialist strongly believed they protect against deterioration, although no evidence. Then onto Miripexin (DA) that did help initially but too high a price to pay - do not recommend anyone use them. Then onto Madopar - best for relieving my symptoms.
As others have said we all react differently and i am sure you will find a combination that suits.
I find exercise, yoga, palates the best way to keep joints from stiffening, helps with the emotional side too.
I have had PD for 12 years now and I am still its master - won't let it become my master. The inspirational stories I read on this site help me stay positive.
Saturday morning upped to 14mg XL, not a good day Saturday dodgy stomach and nausea, this improved Sunday. Mobility is improving, less stiffness, overall things are slowly getting better .
Two more weeks then up to the 16mg max recommended by the consultant.
I am with juju exercise important but hard to get motivated with depression but exercise releases the feel good chemicals. research indicates with exercise particularly in younger onset like your oh slows down progression on have a peek at PD warrior information. Could you log on for partner and let her chat, ? may help, if ok with keyboard or voice activated ? I am on Requip XL 6mg ok on this at moment. wishing you all the best x
Thanks Tee, I try and get her onto forum but she really isnt very happy sharing stuff, also the shakes make it difficult. Would be good if she talked to someone going through the same though.
Exercise!, yes this is something she has to start again
I understand , you can share or withhold as much as you wish, your OH is in control, she could have mystery as her name as no need to say who you are, then it does not matter what she discloses. Have a think, most people just need a little time to adjust after diagnosis and then back on their feet. take care x
Hi Exile, pleased to hear of improvement. It must be so hard looking on as your OH goes through this. I've just upped to 8mg Ropinerol and you feel ill for a while everything you increase. As others have said it takes time to get it right. As your OH gains back some confidence exercise can be introduced or dance, singing. Anything interactive is of great help. Hope the improvements continue.
Yes I hope she will get back into Tai Chi once she is driving again, we are a bit rural here so not driving has caused all sorts of extra hassle. Hopefully things are looking up.
Hi Exile,
Glad the nausea is decreasing. Funnily enough I'm still encountering a bit of nausea. But I do feel a bit of improvement. If no significant improvements, my consultant wants to try levadopa. Not so sure but we'll see. Hope your OH starts to see results. Good luck.
I would say she was 70% back to 'normal' at the moment. Consultant SAID HE will add a little levadopa if necessary. We shall see. And I have persuaded her to sign up to this website.
Yesterday was the latest visit to consultant, no extra medication required. Happy with results on 16mg slow release. Doesn't want to see her for 6 months, any change see doctor. Happy for her to start driving again.
Just got to pass the driving assessment next Monday!
Went on a 7 night cruise last week, found it reasonably simple as long as afternoon nap was fitted in. Wouldn't have even considered trying it this time last year.
Sorry about that i had to answer the phone im going to the Jubilee wing at N T G H to visit my buddies Prof Walker Annete Katherine Louise Anka and all the other friends in THE PARKINSONS CLINIC AND the call was from Kath enquiring as to my wellness,