Dad just been diagnosed


#1
Hello. I'm new, and not sure if I should be posting this here. Posted already, but think it wasn't the right place! :rolling_eyes:

My dad has just been diagnosed with Parkinson's. He is elderly, and until 7 weeks ago, was living by himself, and coping quite well with the family's help, and a carer at mealtimes. From a fit and active man, he has had a very rapid decline in his mobility, strength, and dexterity over the past 18 months.

Seven weeks ago, he had yet another fall at home, and though uninjured, was admitted to hospital, and Parkinson's was diagnosed.

Seven weeks later, he's still in hospital, and on meds for Parkinson's. But he shows little sign of improvement. He is now unable to feed himself, has no appetite, chokes on his food, is on a drip, and has lost a stone and a half in weight. His mind has not been affected, except for several days last weekend, when he spoke extremely fast, and was very confused. He finds all this very distressing, as do we, his family.

I was really pleased to find this forum, and any guidance would be most appreciated, especially about symptoms, and medication side effects. Dad seems to be worse on the meds than he was without them.:neutral_face:

#2
hi
this is the right place. sorry to hear about your father. what pd medication is he on? some take longer to work than others.
i am not in the same situation as you are but there are plenty who are who can help out.
best wishes

#3
hi jane so sorry to here bout your dad,im ali and ive been dx for 11 half years im 43 years of age,can you tell us alittle bit more about your dads admistion to hospital,i no you said he had a fall,but then was dx with parkinsons,how was he dx?by clinical dx,or by a datscan/ and which meds was he put on.there two things are actually important.his meds may not of shown any difference to him cus he is not on the correct ones,please dont take this the rong way,i can happin to alot of us,its a juggling game some times with meds we are all different ,even with pd.you are allowed a 2nd opion as well,so may be this is a option also.when i was told pd when i was 31 i did not belive it,i had had tests for m.s cus me nan had it and it was heriterity,i had 2nd opion then atq.e hospital and it was confirmed.but all these things do mater,and for the person with pd it is very frustrating and for family members to,seein there loved ones goin down hill so fast which does not make no sence to you.have you sat down with a neuroligist who dx your dad and asked wot is happinin to him,have you been givern any answers at all jane?you have come to a very good parkinsons forum who gives a lot of surport,there is a very good helpline also number top of this post who can guide you,i wish you luck jane and your dad ,but please keep in contact and asnswer the things ive asked it mite trigger off some beter ideas for one of us members as well ,there is a lot of people who look at this forum jane there will be some one who has or is goin through the same,keep posting x:smile:

#4
Thanks turnip and ali j. I so appreciate your support.:smile: Dad is 90, so i shouldn't be surprised that's he's unwell, but until 18 months ago he was extremely fit and well, looking after himself. Then he declined extremely quickly, and within 3 months, could only shuffle about the house using a rollater. Within a year, he needed a carer to help with personal care, and dressing, and he couldn't write or turn the pages in his newspaper. He could only manage soft food, and developed a very quiet and hesitant voice. It took him five minutes to shuffle from the living room to the kitchen, and he would often get 'stuck' between steps. GP said it was just his age??!! He had numerous falls, but luckily was not injured.
But seven weeks ago, just after lunch, he 'froze' in the middle of the living room, and pressed his emergency button for the local on-call carers. But they were out on another call, so he was left standing there himself, until he couldn't stand any longer, then he fell over.
The GP checked him out and he wasn't injured, but his heartbeat was irregular, so the GP wanted him admitted to hospital. I met the ambulance at A&E about 6.30pm, and he was seen quickly, but there were no beds, so he spent most of the night on a trolley in A &E.
I don't really know how the diagnosis was made of the PD. They started dad off with heart medication, but his heart settled down on its own. Then the ward doctor began talking about pakinsonism, and that they would try him on medication to see if they could improve his mobility, swallowing etc. So dad was put on Sinemet (think that's right)by the consultant. He was in a care of the elderly ward.
As soon as he started the Sinemet, Dad began to be sick, lose his appetite, and choke even on a drink of water, and all this steadily worsened. His voice became almost impossible to make out, and he became weak, unable to walk at all or even feed himself, and this went on for four weeks, during which he lost a stone and a half, with pretty much no explanation.
We got different stories from different nurses, and had to wait a week for an appointment to see the consultant (!), who told us dad had PD. Dad was then transferred to a rehab ward at another hospital, and they have had more time to make sure he eats, and the physio tries to get him walking again. He was also put on a second drug for PD (don't know what) and an anti-sickness drug.
But he's still getting worse, and recently even has bouts of complete confusion. The docs are now saying the PD meds are not helping him! But they can't take him off them, as the consultant is on leave!
I can't believe that he went into hospital relatively mobile, eating, talking and feeding himself, just seven weeks ago, without a diagnosis of PD, and now he's frail and thin, on a drip, barely audible, not eating enough to keep him alive, but WITH a diagnosis of PD. HELP! Sorry for writing so much, but it was hard to answer your questions in a few words, ali j. I'd welcome any guidance, but i fear there's little I can do now.:rolling_eyes:

#5
Hello Jane,

I am sorry to hear of your Dads situation, it's so very distressing for all the family to see such a complete change in one's relatives condition. I would suggest that you ask for an appointment with his consultant to discuss all of your concerns and don't take no for an answer. It is very sad to say that these days you have to keeep on insisting until you get answer's and at his age you need to know now. I hope that we will some better news soon.
best wishes
vivian

#6
Hi Jane . O dear you are having a dreadful time .

Listen to what Vivial say's and asked to see the consultant don't take no for an answer .

Trouble is when you go into hospital they only see the person as he is then , not have a great deal of background .

Take time to write down everything you want to tell or ask them , you won't come away wishing you hadnt forgotten something they won't mind in fact I think it helps you all . GOOD LUCK >

#7
hi jane vivian and johnnie are rite jane,get that appointment with neuro,and dont take no for a answer.your dad is goin down hill so fast,7 weeks is a very short time,and im sure your aware,due to his age and wot is happinin,it needs doin now.the dotors involved in your dads case should be totally aware of this jane,and to me it looks like the system is lettin him down.ive been in hospital many times over the last three years jane,and ive been treated very well,im one of the lucky ones i guess,but me mom,well thats a different story,i just dont get it wot happins ,things go rong some were in the system and people get let down.you have been told by the ward doctor,parkinism,so this is now important to,is it parkinsons jane,or parkinism cus the reason is parkinism is a wide range of movement disorders,and parkinsons is the main one of this.parkinism is a clinical varity of symtoms of swollowing problems,movement problems,etc,and pd is just one of the theses sytmtoms.there are a number of disorders that can produce the symtoms reffered to as parkisonism.the differnce between being diagnosed with parkinsons and having parkinsonisms the typical parkinsons patient have lewy bodys in the brains neurons.when the patient is givern dopamine replacements thearphy which in your dads case was sinemet those symtoms go away.but parkinsonisms do not respond to dopamine repacement theraphy,sinemt.types of parkinisms psp,cbd and msa,there parkinsonsisms cus they overlap clinical symtoms of the typical parkinsons disease,cus dopamine producing cells in the brain are effected in only these disorders.sadley the only way to diagnose parkinisonisms is to assess responses to dopamine theaphy.i no this may sound drastic wot ive rote down jane,and i dont mean it to,but i wonted to explain to you the difference.ward dr says parkinisms,and then u told parkinsons,then that the sinement is not responding,and u now left for pushing to get appointment with a neuroligist,please keep pushing it jane,and please keep in touch,i would rather your dad not have nothing rong with him jane,but wot ever it is that is causing these things to happin to your dad,i give all my love to him and you and your family,he is a very lucky man having such a loving family around him.good luck xx:smile:

#8
p.s jane,i forgot to say when you do see the neuroligist ask for a DATSCAN jane,this can see the lewybodys ,and may sort out some of the problems x:smile:

#9
Thank you so much vivian, johnnie and ali j. I can't tell you how much I appreciate you taking the time to help me in this way. I spoke with my family earlier, and we'd decided to phone first thing in the morning for an appointment with the consultant. He sees patient's families on a Friday afternoon. And he should see dad on Thursday morning. I didn't realize that the difference between parkinsonism and Parkinson's was so important, ali j.
Will let you know how things go. Thanks again.:wink:

#10
yes,i dint no either at first,but my neuro expalined to me ,by drawin a circle,rote the word parkinsons in the middle and drew lines branchin off the circle,which this was then parkinonism,same kinda symtoms but different ones as well,if that makes sence to you.good luck any way x:smile:

#11
Hi Jane,
I do hope things are getting sorted out for you and your father. It is unforgivable he shoudd have been left to stand all that time bcasue peopele wwere busy. Check the contract and make a complaint if you feel someone should have come earlier. People don't like complaining but its often the only way to improve a service. Your Dad shouldn't feel worse after medication and, again, its unforgivable to be in a position of being unable to change anything becasue the consultant was on leave. Supposing he had been knocked down by a bus? Someone would have made a decision. If not the hospital is in breach of their duty of care.
You will get lots of help on this forum, but we aren't medical practitioners! ps don tforget to use your pharmacist. they often give better advice when it comes to meds.
Good Luck,
Chrissie