My Dad has PD I think


#1
Hello everybody.

My Dad

Before I started this diary my dad was an outgoing happy go lucky retired gentleman of 67 years. He was a CAD design draughtsman all his life and worked for the Ministry of Defense to quite a high level throughout his career. Mum died 10 years ago after my dad spent there whole wedded life caring for her through MS. He was a daily regular at the golf course and enjoyed an active social life.

January 2010 - Dad develops unexplained pain in his knee and leg but is able to continue his normal way of life including a round of golf most days of the week.

July 2010 - Dad is still suffering with unexplained knee and leg pain and visited the doctor for routine blood tests which showed nothing untoward.

Dec 2010 - Dad is struggling with his unexplained leg pain and it is now affecting his ability to play golf on a regular basis.

March 2011 - Dad's leg is still no better and he struggles with walking over distances and is going golf probably once a week now.

May 2011 - Dad has almost given up going golf now but its not just his leg anymore he seems to be uncomfortable all over. He has also started having slight memory problems.

October 2011 - Dads hand writing is getting unreadable his once print like writing has become a tiny scribble.

December 2011 - Dad has stopped golf altogether now. He is becoming more forgetful and seems to be depressed. Dad seems withdrawn and is slowly cutting off his social circle. At this point he also let himself become a victim of what was to become a huge fraud/scam. Computer hackers gained his confidence and started draining his bank account via his debit card details.

March 2012 - Dads eyes have started to appear very sore and red all the time. Crusting along the edges and obviously causing him discomfort. He is walking in a shuffle like movement.

May 2012 - Dad is becoming increasingly withdrawn from all his family and friends and is starting to struggle in communicating with people. His memory is declining. Eyes still a problem. Dad has started to tremble uncontrollably in his hand. This comes and goes on a daily/weekly basis.

June 2012 - Very worried now about how ill dad is looking I asked him to go doctors and get checked out he went but I strongly believe he never told the doctor the whole truth about his ailments. And his blood test came back ok so it was left at that.

July 2012 - Dad is scammed out of £12000 of his savings by a gang of telephone con artists. He was willingly handing over £1000 a day for nearly two weeks to complete strangers he had never met. The bank called me and the police in as they were extremely concerned about dad.

August 2012 - Dads memory is put to test by the police (interviews etc) and to say it was appalling is an understatement. He seemed completely unaware of how serious this all was and he was quiet confident everything was ok and his money was safe.

September 2012 - At the request of the police and the bank I asked Dad if I could help him now look after his finances and welfare. Power of Attorney papers were filed. Dad is becoming quite unstable on his feet. Still shuffling and his spacial awareness is becoming distorted.

October 2012 - Dad has started doing strange things for example ringing my grandma asking her for telephone numbers for family extended family members that we know he hasn't spoken to for years yet he reckons he speaks to them every week. Dad is looking more frail.

December 2012 - Dad has a bad run up to and is really concerning me. Christmas Day at 4am in the morning he turned up at my door looking scared and frightened. When he came in I noticed dad had blood pooring down his face he had fell badly at home and then somehow managed to drive his car 10 miles to my house.
Dad spends 2 weeks on my settee recovering. He slept for nearly the whole time and never moved off the settee. He was falling constantly. he stood up. I had to escort him to the bathroom as he was unable to climb the stairs without falling.

January 2013 - I take dad to Dr Roys and I tell them everything that I knew at that point. He kinda dismissed me and said he was just getting a bit old. But I insisted it wasn't and gave him a very brief run down of the past 12 months. I wish I could of told him everything I have written here but time was short and I'm still protecting my dad from the reality of whats happening with him. The tests came back negative for any medical ie water infection, blood tests, ecg etc. So we had a referral to The Memory Clinic at the Adult Mental Health Unit.

Took dad to opticians to rule out that his glasses were not the cause of his poor spacial awareness. The optician diagnosis Dad with blepharitis the complaint he has had since March. Dad declared that he had only just woke up that DAY with it. The optician rang me at home the following day concern about my dads welfare. Because we hadn't mentioned anything about his possible dementia in updating his records he thought we were unaware of his condition.
Dad is shuffling quiet badly and sleeping throughout the day.

I am now caring for dad on a daily basis (I have 4 small children myself so I am ashamed to say that up until Christmas I have only really been seeing dad once a week). I have now completely restricted my life to enable me to get him well again.

Now comes the sad bits. As I am doing everything for dad now as he is becoming less able to do them himself here is the full list of all the symptoms I now know he is suffering were I didn't before because I never looked hard enough.

My dad has bumped his car on several occasions and not even realized. We are trying are hardest to convince him not to drive anymore but he is very reluctant to do this as its his only way to get about.

He is setting fire to his pots and pans because he is putting his food on and forgetting or falling asleep. We have had to install a smoke alarm directly above his kitchen door because we have discovered he can't smell the smoke and isn't aware the room has filled with smoke either.

His memory is getting worse.

He falls to one side most times when getting up from the settee. And he walks slightly to one side.

He spends hours pulling his beard hair out even when he's sleeping.

He has nearly worn his thumb nail out in strange rubbing movement with his finger.

He has days when he trembles uncontrollably up his arm and his leg now not just his hand.

He has stopped bathing.

He has stopped taking care of his appearance and will happily wear the same pair of trousers for up to 2 weeks until I intervene.

Simple everyday tasks seem to be too much for him to deal with.

He has bowel incontinence.

I know my dad is ill and I believe he may have Parkinson's. If anyone has any other suggestions of what he may have I'd be happy to hear your comments.

We are attending our first appointment at the Memory Clinic at the hospital on Monday and I'm scared that dad will not explain all of these problems as he's either unaware of them or embarrassed and scared about them.

Does anybody have any words of advice that will help me at the hospital. I'm scared and feeling quite lonely.
I'm so sorry this is such a long post I just didn't want to miss anything out that may be important.
Alex

#2
Hello Alexandra,


What an appalling story and complete lack of care by the Doctor, it is good that you are going to the memory clinic but I would have thought your Dad should have been referred to a Neurologist in the beginning, after all he is only 67 years old and he seems to have progressed very quickly. Hopefully the memory clinic will refer him on but if not do request that he is referred to one as soon as possible.
I am not surprised you are very concerned and with a young family to look after you really need to get the social workers to come and assess him and his needs as well as taking in to account your needs.
You could ring the Parkinson's helpline 0808 800 0303 who will be able to help you with people in your area who you can contact for support.
Please do let us know how you get on, you would hopefully find that once he has been diagnosed properly and given the right medication that he may be more like his old self.
best wishes
vivian

#3
Hi 2196 Alexandra

I'm sure the help and support line top left line can give you some signpost as to what to do next whatever your fathers illness turns out to be. Another thought is Age UK at http://www.ageuk.org.uk/ If you go on to the site it automatically picks up on where you are and leads you what's available in your area but first I would try the free helpline for information 0800 169 65 65.

I hardly dare put into words how your GP is letting you down. I am 73. 67 is not old by todays standards (the government is raising the retirement age to 67 etc.) even if we are in the NHS geriatric category and in my humble opinion you don't go downhill this fast with so many symptoms without a cause beyond old age. Is there not another doctor at the practice or is it just him? It is difficult when you are acting on someone else's behalf but would your Dad have enough insight to agree to changing doctors. It was only when my mum's leg swelled up to three time the size and cracked because they used penicillin power on a tiny break in her skin when she had repeatedly told them she was extremely allergic to penicillin that at last she agreed to change to a different GP Surgery. And my father had been given mouth wash when he couldn't swallow and turned out to have throat cancer. Some people are simply bad at their jobs including doctors. Be confident in the fact that you are the expert in how your dad was and don't be fobbed off.

A lot of your father's symptoms are associated with PD. It affects people in a myriad of different ways and 30% do not present with a tremor but whatever it is its not usual at 67. Most doctors will agree that they do not know much about PD.
I was told by the very nice hospital Geriatric Consultant my mother probably had about three months to live and she lived nearly ten years longer to the age of 99.

You are also entitled by law to a Carers Assessment by Social Services whether the person you care for agrees they are ill or not. However, like a lot of things it goes by and by in some areas. If you are assessed it could help your situation. A lot of people resist being identified as a Carer because "he/she's my husband, wife etc" but you are an informal carer and entitled to consideration and respect.

I have gone on a bit, perhaps because I am secretary of a carers charity and "hidden carers" are a big area of concern.

All the best and look after yourself

#4
Hello,
One thing I did when trying to get my husbands diagnosis was: I typed a list of all the conditions that my husband had developed over a 12 month period. I did so many columns with headings. The best way is to write down everything about your Dad then split it into groups with headings. Go through your posting and pick out all the different things that you mention, and go from there. I did this and a few copies, and gave one to everyone that was going to be involved in getting my husband well his GP, his Neuro, councilor and so on. I find that this gives them a lot of they may need to know, and you won't come away thinking I never told them this and that, and mainly because my husband would deny things, so I never told him my intention, I just handed over the list on each appointment, this way nothing is missed out, and your Dad will just go along with it. Have all your questions ready and remember those who shout loudest get heard. Your Dad has been through enough, and I hope he gets some help very soon. The lovely people on this forum will always be there for you, and help you in anyway they can, they have helped and advised me so much, as I am new to PUK, love hols x

#5
Good evening everyone thank you for your kind replies. Since posting this morning I have had a good chat with my auntie and she informed me that my nan actually had Parkinson's with dementia. And thinking back I now know I can remember even though at the time I was to young to understand.

Dad is 70 in May and this has been going on I believe for the past 3 years this is how far back I can positively retrace everything. I'm deeply concerned that his appointment on Monday is not going to help I too wanted him to see a neuro specialist. I'm worried its going to take months of him being passed around until he's diagnosed. He needs help with sleeping at night urgently. As he is unable to sleep at night very well which is making him sleep throughout the day. He is constantly drifting off to sleep even when he has company.
And he also needs help with his depression as I don't think thats helping him either.

Dad is a very proud, private man who doesn't ask for help or accept it very well. I tend to just get on with what I feel he needs me to do without asking and he silently accepts this, we have an understanding. But he won't accept any form of help from my sister in fact he gets quite angry when she tries to do anything. I also have two useless brothers who are no help at all. So its only me that can try my best to help dad get the right treatment and care.

I was returning to work after easter when my youngest started nursery but I've decided my Dad needs me now so I will become his full time carer so he can stay in his own home.

Can I ask do you have 'Normal' days with Parkinson's? When you would look at someone like my Dad and think Nah he's fine its all in my head?

#6
Hello Alexandra
Thankgoodness your father has you looking out for him, It can be a difficult transition from daughter to carer i found. I knew what my father needed and we were very close but I was still his daughter and the parent child relationship meant i just couldn't take initiative without his agreement.

You have described many PD symptoms very well in your diary. What I would be asking for is the GP to refer him to a neurologist, i know you will need to convince your father then the GP. The NICE guidelines say "People with suspected Parkinson's should be referred quickly (within 6 weeks) and untreated to a specialist with expertise in the differential diagnosis of the condition." A movement disorder neurologist would be best as they specialise in Parkinsons.

If you need extra support or advice as well as suggestions from others above there is the Parkinsons helpline on the web page.

It may be a bit OTT but if all else fails I might consider using any opportunity that comes along to get your father to attend A&E in the hope the doctor would take more action than your GP has. Maybe you could convince him to attend to get checked out for a fall etc. Whatever path you take you will need perseverance and persistence. I wish you well.