My husband was diagnosed two and half years ago,and currently is not taking medication.He was prescribed for last October,but wont start for fear of long term side effects.He was warned by the parkinsons doctor to leave it as long as possible.He has now lost most of his independance,has a carer to shower and dress him,and the rest is down to me.I really want him to have a better guality of life.Any tips as to how to get him to start? Is there anyone on the forum who does not take medication?
what was he prescribed?
Hi Classic FM,
Several questions spring to mind
When you say "Doctor" what did you mean? Diagnosis and treatment should be by a neurologist, preferably one specialising in movement disorders.
Have you a Parkinsons Nurse to call on to discuss his fears? If not please use the helpline top left of this page
Although it obviously a good idea to keep any meds.for any condition as low as possible, with a degenerative disease like PD, you must take enough to "preserve function" as my neuro put it. Your husband trusted the advice to delay meds. so logically he should now trust the advice to take them. "Use it or lose it" cannot be achieved if you are not taking enough meds.to get you going. Which drugs to take is separate issue.
Has he met other people the same age who have PD and who are on meds? I was 69 on diagnosis nearly four years ago and went straight on meds.(Sinemet Plus) mainly because I was finding the the right sided tremor and poor coordination/dexterity exhausting. Nearly four years later, even a specialist Neurological physio says that I do not look like I have Parkinsons. Of course, I am concerned about the possible (by no means certain) long-term effects but I have a life now and if I had a partner they would still have one too. As to the particular meds.prescribed, if you post details of what they are, others here will no doubt post information on their experience and/or opinions of the pro's and con's of the various medications available which depend on age of onset and general health amongst other criteria, and sometimes take a while to get right as patients vary in their response to particular drugs.
To delay meds.to the point where there is loss of independence does seem a little extreme but I do not know your particular circumstances.
Best Wishes
Several questions spring to mind
When you say "Doctor" what did you mean? Diagnosis and treatment should be by a neurologist, preferably one specialising in movement disorders.
Have you a Parkinsons Nurse to call on to discuss his fears? If not please use the helpline top left of this page
Although it obviously a good idea to keep any meds.for any condition as low as possible, with a degenerative disease like PD, you must take enough to "preserve function" as my neuro put it. Your husband trusted the advice to delay meds. so logically he should now trust the advice to take them. "Use it or lose it" cannot be achieved if you are not taking enough meds.to get you going. Which drugs to take is separate issue.
Has he met other people the same age who have PD and who are on meds? I was 69 on diagnosis nearly four years ago and went straight on meds.(Sinemet Plus) mainly because I was finding the the right sided tremor and poor coordination/dexterity exhausting. Nearly four years later, even a specialist Neurological physio says that I do not look like I have Parkinsons. Of course, I am concerned about the possible (by no means certain) long-term effects but I have a life now and if I had a partner they would still have one too. As to the particular meds.prescribed, if you post details of what they are, others here will no doubt post information on their experience and/or opinions of the pro's and con's of the various medications available which depend on age of onset and general health amongst other criteria, and sometimes take a while to get right as patients vary in their response to particular drugs.
To delay meds.to the point where there is loss of independence does seem a little extreme but I do not know your particular circumstances.
Best Wishes
Hello Eileen patricia,
Thank you for your reply.
At first my husband was seeing a doctor for the elderly,with a special interest in Parkinsons.She told him to delay medication as long as possible.He saw a neurologist last October who prescribed a minimum dose of sinemet.
We do not have a parkinsons nurse at the hospital(although they are advertising for one).So many friends and relatives are encouraging him to start,but to no avail.I am feeling very cross that he is being stubborn like this.I wish I knew what to do to persuade him.
Thank you for your reply.
At first my husband was seeing a doctor for the elderly,with a special interest in Parkinsons.She told him to delay medication as long as possible.He saw a neurologist last October who prescribed a minimum dose of sinemet.
We do not have a parkinsons nurse at the hospital(although they are advertising for one).So many friends and relatives are encouraging him to start,but to no avail.I am feeling very cross that he is being stubborn like this.I wish I knew what to do to persuade him.
Hi Classic FM.
Have you tried the helpline top left of this page. They deal with the whole gamut of physical, mental and welfare problems encountered with PD including I'm sure spouses who won't take the pills.
The other thing might be to get in contact with your local support group.
At the top of this page there is a "LOCAL TO YOU" tab and this will take you to lists of Parkinsons support groups by geographical area. Then you might be able to get in touch with people at various stages who are on meds. or at least meet other carers of partners with PD.
I was directly responsible for my mother who died just short of 100 but she did have live-in agency carers for about 9 months of the year. In some way her refusal to take pills was not a bad idea but not so good when it was antibiotics where she would not finish the course once on the mend, or warfarin when she swore blind to the District Nurse she was taking the pills when she'd actually hidden them somewhere, resulting in a stronger dose of warfarin because the bloodtest would naturally indicate she needed more. They just started "empowering the elderly" in a rather dogmatic way at that time which in effect meant I had no input at all. So, I can sympathise with the frustration when your husband would most probably be better off on some medication.
I do hope your hospital gets its PD nurse soon. If you don't mind my asking, what area are you in? I only ask because I was just today discussing with a PD UK contact the provision or otherwise of PD nurses in comparison with other chronic conditions.
Have you tried the helpline top left of this page. They deal with the whole gamut of physical, mental and welfare problems encountered with PD including I'm sure spouses who won't take the pills.
The other thing might be to get in contact with your local support group.
At the top of this page there is a "LOCAL TO YOU" tab and this will take you to lists of Parkinsons support groups by geographical area. Then you might be able to get in touch with people at various stages who are on meds. or at least meet other carers of partners with PD.
I was directly responsible for my mother who died just short of 100 but she did have live-in agency carers for about 9 months of the year. In some way her refusal to take pills was not a bad idea but not so good when it was antibiotics where she would not finish the course once on the mend, or warfarin when she swore blind to the District Nurse she was taking the pills when she'd actually hidden them somewhere, resulting in a stronger dose of warfarin because the bloodtest would naturally indicate she needed more. They just started "empowering the elderly" in a rather dogmatic way at that time which in effect meant I had no input at all. So, I can sympathise with the frustration when your husband would most probably be better off on some medication.
I do hope your hospital gets its PD nurse soon. If you don't mind my asking, what area are you in? I only ask because I was just today discussing with a PD UK contact the provision or otherwise of PD nurses in comparison with other chronic conditions.
Hi
I was Dx 2 years ago,aged 52, and put on to a Dopamine agonist straight away. I tried a few before finding one to suit me but it as worth it. I am as independent now than I ever was, still working full time, running my home, looking after the grandchildren etc etc. I went out to a colleagues leaving do last night and danced the night away in a fantastic Greek restaurant.
I find it hard to understand, if his quality of life is suffering, why he is resistant to taking the drugs. Surely is is better to enjoy the quality of life now whilst you are young enough to want to enjoy life to the full.
Perhaps he feels that taking the drugs is an acknowledgement that he has PD and is not ready to accept it yet, trouble is by doing so he could be missing out on some of the beat years of his life, is it worth that?
Good luck
Caroline x
I was Dx 2 years ago,aged 52, and put on to a Dopamine agonist straight away. I tried a few before finding one to suit me but it as worth it. I am as independent now than I ever was, still working full time, running my home, looking after the grandchildren etc etc. I went out to a colleagues leaving do last night and danced the night away in a fantastic Greek restaurant.
I find it hard to understand, if his quality of life is suffering, why he is resistant to taking the drugs. Surely is is better to enjoy the quality of life now whilst you are young enough to want to enjoy life to the full.
Perhaps he feels that taking the drugs is an acknowledgement that he has PD and is not ready to accept it yet, trouble is by doing so he could be missing out on some of the beat years of his life, is it worth that?
Good luck
Caroline x
Hi Classic fm,
First of all I wanted to let you know that it was because of you letter to the forum that I actually joined as I wanted to reply to you as I am also the wife of a PD patient. I am 57.
My husband, who is 72, was finally diagnosed 14 month ago after being treated for Essential Tremor for several years.
His first fear was that our lives were going to become stuck in a date of limbo, that our lives would never be the same again. Nothing could be further from the truth.
He started on Requip XL, this is an agonist and not Dopamine. It has worked pretty well up until now, we saw the PD Nurse last week and she suggested it was time to add in some Dopamine to help. My husband is also hesitant to take dopamine after reading how bad the side effects can be, but has decided to go down the road of upping the Requip a couple of Mgs and if that doesn't show any improvement to try the dopamine.
We still walk every day, we have built a lean-to, put up fence panels and do our own house maintenance.
Last year we saved very hard and went to Greece for 4 weeks, this year we are going for 6 weeks and I intend to keep us travelling until I can no longer carry the bags!
Quality of life is THE most important part of our existences specially where PD is concerned.
Keep trying to persuade your husband to take the drugs, they make such a huge difference and can put a bit of hope back.
One day there will be a cure but until then there is Dopamine.
Good Luck to you Classic fm, you are not on your own x
First of all I wanted to let you know that it was because of you letter to the forum that I actually joined as I wanted to reply to you as I am also the wife of a PD patient. I am 57.
My husband, who is 72, was finally diagnosed 14 month ago after being treated for Essential Tremor for several years.
His first fear was that our lives were going to become stuck in a date of limbo, that our lives would never be the same again. Nothing could be further from the truth.
He started on Requip XL, this is an agonist and not Dopamine. It has worked pretty well up until now, we saw the PD Nurse last week and she suggested it was time to add in some Dopamine to help. My husband is also hesitant to take dopamine after reading how bad the side effects can be, but has decided to go down the road of upping the Requip a couple of Mgs and if that doesn't show any improvement to try the dopamine.
We still walk every day, we have built a lean-to, put up fence panels and do our own house maintenance.
Last year we saved very hard and went to Greece for 4 weeks, this year we are going for 6 weeks and I intend to keep us travelling until I can no longer carry the bags!
Quality of life is THE most important part of our existences specially where PD is concerned.
Keep trying to persuade your husband to take the drugs, they make such a huge difference and can put a bit of hope back.
One day there will be a cure but until then there is Dopamine.
Good Luck to you Classic fm, you are not on your own x