Hi Beannie. My wife Sue does have AD and PD. There are some other similarities. She is 66 but had her first memory clinic referral in 2000 and within about three years it was clear that she had some form of dementia. The first symptoms of PD were first pointed out to me by the GP about a year ago but she had had them for a while. Initially, they talked of her having some PD symptoms but said this didn't mean that has had PD, but now it is clear that she does have PD. Her Alzheimer's is quite severe but I am used to that whereas the PD has been a whole new ball game.
The Parkinson's site is pretty moribund with many threads never responded to. I'm sure you will agree that this is not the case with TP. It would be good to keep this going as I know there are other people with the double diagnosis.
The complication of the interplay between the two diseases was one of the reasons why Sue was recently given Continuing Health Care. She is currently immobile after an 'event' 3 months ago but I am still hoping she may be able to walk a few steps with help.
What are the particular problems that are most difficult in your husband's case?
Hi Stanleypj
Thanks for responding to me again. I am sorry to hear about your wife and hope she will soon be able to walk a few steps albeit with help.
Yes I agree with your comment about the Parkinsons Forum. I think it is very hard to navigate and no-one, as you say, seems to respond. Talking Point on the other hand has been a lifeline for me and I am so grateful for all the wonderful responses I have received and hope to be of some help to someone else.
In my husband's case it is his movement, in fact this has always been the main problem, since the Parkinsons diagnosis in 2010. He has no strength in his upper arms and therefore cannot wash, shower or dress himself, without considerable help. He has had his Parkinsons medication upped over the last 12 months but quite frankly it doesn't seem to make a difference and he is now starting to hallucinate, seeing men going into the basement at the care home (there isn't a basement) and when he went to look where he thought they had gone he said ' oh there isn't a basement is there. he also told me there was a lorry shedding its load outside the care home, which there wasn't, he did see the funny side eventually. He sees the Parkinsons Nurse now and again but I have to say I find it all patronising. Maybe it is my perception, but they seem to put you into boxes, and they talk the talk, but each person is different but because of NHS cuts, don't get me started, there is no time to talk at length.
One improvement I have noticed in the Care Home is that he doesn't fall asleep at the drop of a hat when we visit him, which is nice. At home he just spent most of the time asleep, I think because of the physical/mental effort everything took out of him.
D's diagnosis was pretty clear cut. He went to the Dr's in August 2010 because of his leg freezing and after the usual blood tests was sent for a deep brain scan after seeing the Parkinsons Consulatant, which confirmed the diagnosis and then 3 months later (without any prior warning) we were sent a letter to attend our local Mental Health Unit where he was told Sorry Mr W there is no easy way to say this but you have early onset Alzheimers Dementia as well. There is no cure but you can take 5mg of Aricept (Donepezil) for 3 months and then under the guidance of your GP increase this to 10mg. You may suffer some effects from the increased dose (oh boy did we!!) but persevere and this should settle down.
The problem I have also had is that D flatly refused to discuss either diagnosis and thought he could take the tablets and it would all go away, ignorance is bliss I suppose. I researched as much as I could. In fact my Auntie had Parkinsons Disease and died of this some 3 years ago. She was in her late 70's at diagnosis (she was 85 when she died) and towards the end of her life would not take her tablets which, unfortunately hastened her demise.
Added to all this D's two siblings also have early onset AD, his older sister was diagnosed 4 years ago at the age of 64 and his younger sister, aged 55 was diagnosed this year. I am also concerned this could be Familial Alzheimers, and therefore my 29 year old daughter is at risk. She has been offered a genetic test but has said 'No' a decision I fully support at the moment.
Wow I have rambled on and on but yes I agree it would be nice to keep this going as, as you say there must be other people in our boat.
If I can answer any Parkinsons questions for you please do not hesitate to ask.