Medication

[Gwendolyn]

My Husband is on Stalevo,D.H.C.Continus and Celecoxib with Paracetamol as a back-up but he still gets bad pain and so his D.H.C. Continus is being increased and Morphine for when the pain is worse, he is not a man to complain and I often think he is in pain but when I ask him - he just says I am alright . He gets fed-up with taking tablets and often says he wants to throw them all away and "take his chances!!" What a cruel illness this PSP is .

He gets good days and bad days and sometimes he just wants it "all to be over " going from being a fit active man to having to have everything done for him is sooo hard.

Gwendolyn

[Hidden]

Hi Gwendolyn

I understand your predicament. My husband felt the same way. He was taking so many pills a day, hard to remember all the time what he had to take. Like your husband he also was a very active sporty type and to have everything done for him was unbearable for him. I was his sole Carer and my heart went out to him every time I had to help him in every little thing.

I still miss him terribly but at least I know now that he is at peace.

My thoughts are with you both.

Lina xx

[Kathy]

Hi Gwendolyn,

Sorry to hear you poor husband is having so much pain Some people find acupuncture helps with both pain and also has an effect on muscle spasms. Some physiotherapists are qualified to use acupuncture, you can find details for registered physios from the HPC website.

hpcheck.org/

good luck

love Kathy x

[Gwendolyn in reply to Kathy]

Thank you Kathy - Ken tried physio some time ago and said it hurt him and would not have any more of it he is 83 and I guess that is affecting how he takes to physio as well , we are seeing the consultant today and I am hoping he can sort out his medication to cancel out the pain.

[LesleyB]

Hi Gwendolyn

It is so hard to see them like this. My dad never took any tablets apart from the occasional anadin until he was 84. At that point although we didn't know dad had PSP he went to the falls clinic after a number of falls and after doing a thorough work over on him he was suddenly on a number of tablets, which was totally different for him. He was also very stubborn he too didn't like help and would try so hard to continue to do things which in itself I used to worry about, wondering what he was doing when I wasn't there. When someone has been so active this condition is so terribly cruel for them

My thoughts are with you both. Take care of yourself Gwendolyn

Lesley x

[PSPA_JillL]

Hi Gwendolyn,

I am sorry to hear you and your husband are having such a rough time. I am not sure where your Husband lives, if it is the UK I would recommend he has a medication review by his specialist and also a referal to the palliative care team. He is making comments that make me think he would really benefit from the specialist skills of the palliative care team, they can be accessed through your GP. Also if you are not members of PSPA it would be a good idea to join and talk to your nurse.

Take Care

[PSPA_JillL]

Hi Again,

I should also have said your Parkinsons nurse or neuro specialist nurse or community matron would be able to sort out the medication review for your husband depending on where you live if you have one.

I have realised I can see where you live so I guess your husband is in the UK, always learning.

[Gwendolyn]

Thank you Jill - The increased pain has come on quite quickly and my attempts to control it for him have been with help and advice from the Hospice and pharmacist , we have an appointment with his consultant today and the pain control is top of the list of "things" to ask.

The local Parkinson Nurse came a while ago and said she will come again after the meeting in London last Wednesday when she is hoping to have more advice for me .

I also had a visit from his Domacilitary Nurse last week which was very helpfull , I am very lucky to be under the Hospice "umbrella" I had to call them at 2am yesterday and I got immediate help and advice in a very reassuring way , I cannot speak highly enough of the Doctors and Hospice team who are helping us.

Thank you again for your advice - I am gratefull for any suggestions .