I'm hoping that someone will share their experiences w/ PD from both an emotional and physical aspect and perhaps provide me with some information on different drugs and therapies that have been tried.
My MIL has suffered from a benign tremor in her head and right side for years. about two years ago, her health began to downward spiral. Her tremors consistently became more severe, spreading throughout her arms, legs, hands and feet and her emotional health was compromised by several deaths in the family as well as general emotional stress. She suffered a "near" nervous breakdown and would go days without getting out of the bed.
She went to two neurologists and saw her internist on quite a few occasions and finally, this past November was given about as formal of a PD diagnosis as she could get. Naturally, the diagnosis has been very difficult for our family.
My mother in law, I know for sure has been prescribed by one neurologist Sinemet and I believe she's also been prescribed Levadopa or a drug very similar. She has refused to take either, stating that her neurologist claims that both drugs can cause negative and irriversable health problems as well as make her terribly ill with nausea, fatigue and headache while she takes them. This has been incredibly disheartening and confusing news to me. For one, I was under the impression that these drugs can improve the quality of life of a PD patient. I'm wondering if ANYONE can share their personal experiences with either of these drugs and perhaps provide me with statistical information or a directive as to where I can find some sort of statistical information on the percentage of people who do experience such side effects.
She finally accepted and started on the drug Requip, per her neurologist's orders. She took the drug for four weeks and weaned herself off of it. She said that it makes her incredibly shakey and ill and refuses to continue. That of course, is her choice but she's terribly discouraged. The discouragement and resulting depression only fuels her PD and I feel helpless watching her deteriorate so quickly. She's not even sixty years old and her condition has quickly progressed within such a short time span.
I'm just having a very difficult time accepting that this is it...there's no hope. There has to be hope. And I'm searching for this hope anywhere I can find it because if I can give her anything...I want to give her hope that she CAN live a life of quality and that as a family, we can get through this. I'm just desperately trying to find out as much as I can and learn as much from others and their personal experiences as I can so that I can be a healthy support unit for her. I love her very much and want her to enjoy her life and her grandchildren for years and years to come.
Welcome to healing well.Let me start by saying that PD doesn't have to be the end of life just the beginning of a new life.I bet your mother doesn't know that there is a growing amount of research pointing out that both Requip ,mirapex and sinemet delay the progression of PD.They definitely improve the quality of life for most PD patients,myself included.Having said that using these drugs does generally cause side effects which varies from individual to individual. your mil hasn't been on requip long enough to give it a fair try,and if it doesn'''t work a similar drug mirapex may.I was dx with pd in 98 and i'm on stalevo(sinemet comtan combo) as well as mirapex.These drugs allow me at 61 to be able to work as well as enjoy my grands.A lot is attitude and your mother is no different then anyone else getting such a lousy DX.Hopefully time will change this.Best to you and your mil Ed
PS This is a great support group and your mother in law is always welcome
Ed
Post Edited (yekkimo) : 9/29/2005 5:47:49 AM (GMT-6)
Dear Dawny, I was on requip for months and then my neurologist changed my prescription to sinement. I feel so much better than before taking anything. I think that your mother has to get over the mental part of having Pd before she can move on. I understand that you have to take the drugs for several weeks before feeling any effect. Maybe she just hasn't given it a chance.?????? I hope and pray that she listens to her dr. and to her family and gets help. I just turned 63 and I have to say that although I have a wonderful support group in my family, the next best thing is listening to your doctor. He can and will help. Take care and God bless . Margaret
Thanks so much for posting. I really appreciate the responses.
I have to agree that a lot of my mother in law's issues stem from issues internal. She's naturally one with a very low threshold for pain and she's very emotional. She tends to think with her heart moreso the mind. I love her dearly for this but I can't help but to think at times that she deprives herself of quality at times.
Her neurologist is frustrated w/ her. And I can understand why as she sends mixed messages. She literally runs to him when something hurts but refuses any treatment. He made a comment that he "doesn't know why he bothers offering new drugs as he knows she'll refuse".
I'll admit, that for a while, I was very angry with her and hurt that she threw in the towel so easy. I have a dear loved one who is dying. She has leuhkemia but has fought really long and hard. I guess I hoped my mother in law would take on the same game face and find within herself the power to fight for her strength. But...I understand that if I were to walk a day in her shoes, perhaps I'd choke on my strong words.
I realized after speaking to her this past weekend though, that she's not really refusing these drugs from an apathetic standpoint, she's truly fearful that if these drugs don't work, there will be no alternatives for her in the future. For example, she explained to me over the weekend that she's afraid to take more than one extra strength tylenol at a time for pain now because she wants the option to take two when the pain becomes really bad.
I think her long term plan is to tolerate the pain and tremors until she can tolerate them no longer and then accept the Sinemet or the Levadopa. I'm just so afraid that she's making unneccessary sacrifices.
Her sister stated on the phone yesterday that I need to let her see our children as much as possible now becuase she won't be able to visit with them for much longer as her health would quickly deteriorate. I couldn't help but think...My goodness people...it's as if you're all throwing in the towel...this type of mentality about PD is enough to keep anyone down in the bed.
Thanks for allowing me the opportunity to vent and I truly appreciate the responses.
Welcome! We are here to offer whatever support and information that we can. PD is not an end. Your mother-in-law can hopefully have a full life for many years.
I have taken Requip for over 4+ years. I feel your mother-in-law did not give it a fair chance. I lost 10 lbs in 6 weeks when I started Requip (didn't have much more than 10 lbs to lose). It was more like 2-3 months before I reached the desired level and stabilized. If Requip doesn't work for her, I would suggest trying Mirapex. I would save Sinemet until later, unless the dopamine agonists (Requip, Mirapex, Permax) don't work for her. Give them a chance, though.
You suggest that your mother-in-law is considering not taking any medication. I'm not one to quickly take meds either. However, with PD it is a matter of quality of life. There is a happy medium for each individual. I wouldn't totally eliminate meds from that picture. She will miss out on too much of life's enjoyment.
Your mother-in-law is fortunate to have someone like you in her life - someone so concerned for her well-being. Please continue to share your experiences. We're glad you're here!
lizzy4451Life is a dance. Don't sit it out. --- H. Jackson Brown
I was diagnosed a year ago and put on Requip, which seemed to work at first. For various reasons, my doc has been weaning off Requip and onto Sinemet with Levadopa. I'm currently on low dosages of all three. Finally, for my depression I take Lexipro. Very few side-effects from all this, and I do feel better I can't say I like taking drugs, but I prefer them to the rigidity, slowness and anxiety I felt before. I also now do yoga, which has helped tremendously. My point is that you've got to DO SOMETHING productive, and you need to either cooperate with your neurologist or find a new neurolgoist. Good luck.
Hello Dawney, i have only just found your post , i hope i can help a little .I will be 79yrs in september and doing well ,diagnosed pd 6yrs ago . I am on madopar cr/sinamet plus and mirapex,since having the mirapex i am a differant person.Nobody sees my tremors,it is just me who feels them,ok, i do get my bad days but i just sit them out and wait for the good times which certainly outweigh the bad ones.When i switch off i go for the chair and as soon as switch on again i'm up and doing things . No two people seem to be the same but we can relate to one and other and cheer each other up.I used to be a dance teacher and sometimes get the grumps but memories are a wonderful thing and make you feel good.Please give your mum my best wishes and tell her i shall be thinking of her. Grace
What a great attitude you have.Thanks for the inspiration.i am also on mirapex and stalevo.The mirapex doesn't help tremors with me but seems to improve my balance,and walking.Best to you.EdEd-Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.
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