Has anyone else had to go off of PD MEDS ... - Cure Parkinson's
Has anyone else had to go off of PD MEDS due to them no longer working such as MIRAPEX and Sinamet. Hubby built up intolerance to them.
He should see his neurologist. It appears he needs stronger Meds now instead of going off o them.
We did and the NEURO said there wasn't anything else to do. I can see a difference for the better without the MEDS. He had HORRABLE side effects, after many years of being on MEDS for the pd. He doesn't have the confusion, etc. as before, maybe it is the supplements that is helping.Thanks for replying Joanne.
Is it true ipd or pd plus syndrome such as msa PSP CBd as these all tend to respond and then it wears off. Or is is an ipd resistant to treatment your pd nurse or neurologists can help here
i was thinking the same as isis i.e could it be PSPP MSA OR CBD ? YOU NEED TO HAVE ANOTHER DX DONE ... GOOD LUCK
I'd love to go off meds. But I get visceral off, so it would be rough transition. Did he have Datscan?
I keep asking the same question , have always though that the SINEMET is not help my husband and MAYBE even confused the whole issue . I am afraid to stop completely he has been taking them for 7 years along with the Rotigotine patch 6 mg .
Don't know whether it progression or nor . Each time we go to see his Parkinson's man he feels his arm and hands and tell he he is doing well . He is in a wheelchair at all times . . Strules to feed himself in fact cannot do an thing for himself . What a load of .... I don't normally getting this but after reading this post !
Imsent you a message cabbage cottage.
have u got my reply yet I have this week started to get help to get him to bed . He struggles turning and walking backwards so the carer helps get him onto the bed . Trouble is they are coming at 9 pm to put him up to bed and he normally goes at 10 30 and once he is in bed he cannot sit up comfortably so goes straight to sleep and then starts coughing and choking and needs my assistance . While he was still downstairs he would watch the tv and I even went out for a few hours twice a week , this was good for me . He was safe in his chair and could use press a button and get me . I wasn't far away . So although they are helping to get to bed safely and made it easier for me it was far too early . We will try it and see how we go .
I got hospital bed for hubby, in living room and after several years of my sleeping in recliner to be nearby I got myself twin bed and have it in living room,it is convenient for me enabling me to keep up inside and help him better when need to.the hospital bed is great as he has to sleep elevated.
Thanks everyone for posting. We have consulted with numerous Neuros thru many years. I feel due to the worsening side effects from what he was on I had to do something, I am lucky to be alive, no more violence, hallucinations, confusion. He feeds himself now and communicates, watches TV movies and am thankful for what we now have.
How does your husband manage with the hospital bed I find mine slips down the bed and it is not very comfortable at all . I would buy one privately but they don't seem to have any that lower enough . The ones you can buy are more flexible I believe
my husband has a hospital bed referred by the district nurse, we also ad a small wheelchair through them . It has been a big help because I can lower and raise it . Being a short man and not having the strength in his knees , difficulty judging distance and walking backwards it has been a boon . We also have a stairlift . I sleep in a single bed in the same room . The odd night he has slept in his rise and recline chair I have stayed with him . we now have two recliners .
I am so glad you have sorted the meds out for the better it has confirmed what I have been thinking was right that taking the meds were making things worse . But afraid to stop them altogether after taking them for so long .
What part of the country do you live in .
I have thought about bringing the beds downstairs but have managed so far . Now getting I help in just to get into bed . I am going to buy a baby monitor so that if I am downstairs I will hear if he needs me .
I hope your husband does better. The NEURO we had was understanding of my decision and flat out told me that he had built up an intolerance to the pd meds and that there was nothing else they could do to help him. We have an excellent family doctor that has been working with me on nutritional supplements, he tested very. Low on some vitamin defiecenses, I noticed improvement over time. It is best to talk with Doctors openly on what is going on, If they were too quick on the time allotted per visit I would let them know. My husband is on no medications now. I have a Vita Mix and do a lot of fresh veggies and fruit juices and smoothies, so he is getting more than adequate, he was very weak before. He was tested for TETOSTERONE level it came back very low, gets shots every three weeks and he seems to be not as tired. his Vitamin D3 llevel was very low too, we get the blood work done to monitor things. It is not easy, I don't get any help at all, managing ok, I have someone to come and do all outside work enabling me to care for my husband and half keep up with the inside chores. Have you talked with your husbands physician on your feelings, that is the first step. I sure pray one day there will be a cure for pd and other debilitating diseases.
Meant to say I got a different mattree for the hospital bed a temper pedic, it is nice. The one that came with the bed was not a good one. We are in Calif.
What the man is suffering from is the toxic effects of the long-term use of levodopa. This is what drives the discussions on this board concerning the natural treatment of PD, or of perhaps no treatment at all other than vigorous exercise.
I have discussed detoxing with our new physician, I put him on Super Thisilyn advanced Tetox formula I recently renewed our 24 hr. fitness and made sure there would not be a problem taking him. Have him doing leg raises and arm excercises when I put him to bed. I also found after his showers to massage the calves and feet massaging them with lotions, he tends to sleep more rested.Thanks idq1997 for your input. I am thankful to be where we are now and not like how things were, he still has many difficulties but we have overcome the worst of the worst, ughhhhh. We just had our 57 Th wedding anniversary in May, it is nice to have my husbands back again with the mental state of being a wonderful polite man.
It's 55 years for us , I did wondered about a Tempur mattress We live in S Wales UK .
Unfortunately The Parkinson's consultant we have been under for seven years has retired and they are looking for a replacement , our Gp who first diagnosed the Parkinson's and we had a very good relationship has moved with his family and is now in a different town . we do miss him I could go along on my own and get this off my chest he was so supportive .
Thank you all for your input and advice .
Hi payingforacure
I was lucky. My neurologist put me onto a monotherapy of eldepryl. Nothing else! I am not a doctor, and therefore you must treat what I say with caution. I am of the opinion, and my experience backs this up, that taking levodopa medication is the last line of attack. If nothing else helps, then try the levodopa route. Taking eldepryl, together with hard walking, three times a week, has got me to the position where I no longer needed any Pd medication, after ten years. There were other things I did to help me deal with my Pd. I cut out all harmful stress. Yes! Including my job! Staying alive, is more important than earning big bucks. I also took a positive approach to my Pd, and turned it into a challenge, rather than a problem. Lastly, I started doing everything I could to stimulate my brain, like Su Doku puzzles and playing bridge etc. Why not try all these things? If you think your hubby is incapable of doing exercise, then think again! a journey of a thousand miles starts with the first step. Start small and build up slowly from there! Read my book, 'Reverse Parkinson's Disease', or go to my website, reverseparkinsons.net.
John
