Excess ive sleeping

Living with Parkinson's Carers, friends and family
21

Hello Billywhizz.

I hope that you enjoy your visit to my hometown  NYC in December it is not quite like  the UK ,however people are quite helpful and friendly here as I have lived here for over 70 years this city is always changing  to fast for my own sake :-),

We usually have a PD care-givers group at NYU Langone hospital on the first Thursday of each month at 3:30 which one can drop in on ,so if in NYC then perhaps think of saying hello.

NYU  Langone Hospital Clinical offices Building

PD caregivers group  December 1st 2016

16th floor  conference room 3:30 p.m. - 5 p.m.

240 east 3 8th street NYC

I do feel the Ropinerole will help your wife , there is also an option of perhaps adding "Comtan" (Entacapone).

In the States we are testing PD patients further when the Sinemet has  little to no effect to rule out  or find other neurological issues that in itself may not be typical Parkinson's at all.

Good wishes.

Mike

 

 

22

Thanks for your reply Mike, i am also a city boy from Liverpool obviously home of the Beatles and a great football team EVERTON. Unfortunately the dates don't work for the PD/ Carers meetings i am there from 10th and fly back 14th, we are staying at The Chelsea hostel and going to frequent a bar Mr Denhehys.        


                        My wife is tolerating the ropinerol ok but i know its early days yet with the new drug but she is better with it so far.

                        all the best to you and your wife.... Billy

 

 


 

23

 Hello Billy,

Glad your wife is tolerating the ropinerol ,4 days in New York City is a short time thinking if it were I visiting the UK for that amount of time , I live near the Chelsea hotel but know of the hostel you mention.

Sorry you were unable to visit our PD care-partners group.

I do not know that  particular bar but wish you good spirits there.

Best wishes from a somewhat  shell shocked post election NYC.

Mike

 

 

 

 

24

 Hello Billy,

Glad your wife is tolerating the ropinerol ,4 days in New York City is a short time thinking if it were I visiting the UK for that amount of time , I live near the Chelsea hotel but know of the hostel you mention.

Sorry you were unable to visit our PD care-partners group.

I do not know that  particular bar but wish you good spirits there.

I  think Liverpool has changed  a bit since I was passing through there in 1972 visiting in a round about fashion on my way to stay for several months in Northern Wales a town called Bethesda.

Best wishes from a somewhat  shell shocked post election NYC.

Mike

 

 

 

 

25

Hi Juliet

I live in Surrey.  My husband has had PD for over 30 years now.  At 69, he is 16 years older than me.  Three weeks ago he fell down the stairs and broke his collar bone.  Up until then he wasnt too bad but now he sleeps a lot of the day although luckily he does sleep at night too.  I had to quit my job and I am finding it really hard and depressing some days so if any one would like to chat it would be really nice.  We have the PD nurse coming on 14 Dec and I am hoping she will give me advice for the support I can get etc etc.  I feel very isolated and sad at the moment and am putting a brave face on for the rest of my family but it would be nice to speak to someone in the same boat.  Just a case of taking one day at a time. Please send me a Private Message if any one would like to get in touch.  Thank you.

(Edited by moderator to remove private details.)

26

Dear Juliet,

I have noticed that elsewhere on this PDUK website   there is a listed, a PD support group in Surrey that meets on a Tuesday each month , I would suggest that you contact them and start networking with other PD caregivers  as soon as possible ,do call them.

I can't imagine myself  with a very ill wife, not being able to manage her care, w/o support from people in the New York city Parkinson's community , also one has to ask for help from family & neighbor's ,for some the hardest thing to do.

Good luck,

Mike

27

Hi. Christine

I can fully appreciate how you feel, I feel very much the same at the moment, and unfortunately I cannot see any light at the end of the tunnel. My husband also has Parkinson's Dementia, which is defiantly getting worse.

The Parkinson's nurses are great, but unfortunately nothing seems to work for my husband now. He has been offered to be assessed for deep brain stimulation, but he does not want to go for it.

I do hear about different treatments such as patches, he has only been offered to change or up the medication, which makes no difference. I can only assume he will not benefit from them.

I do hope things are better for you, and your husband is recovering from his fall.

It looks like your private details have been edited, not sure why.

very best wishes

Juliet

 

28

Hi Mike

Thank you for your concern, unfortunately Surrey is to far away to go to every week. I do have problems leaving my husband also.

My family are near to us, but they do give me support if I ask. They have a busy family life, which fortunately I do get involved in. They do not know how they can help, all of our hands are tied.

It just seems sleep is my husbands way of life now.

Regards

Juliet

 

29

Hi Juliet

I only just read your response. Unfortunately, my husband had another fall and has been in hospital the past week and a half.  He was hallucinating badly and the Dr thought he might be dehydrated or have a urine infection but all his tests came back clear and he is classed as medically fit.  He was moved to a rehab hospital yesterday and I am not sure how long he will be in there.  He has been very confused and disorientated some days.  It breaks my heart.  He got quite aggressive with the nurses a few times and it scares me whether he will be like that with me when he comes home :-(.  I guess all I can do is take one day at a time but now he has been hospitalised, hopefully, he will no longer be the forgotten PD patient and we will get some support.  They have also been tweeking his medication.

My details were edited because you are not allowed to put email addresses etc (for your own personal safety).

Best wishes, Christine.

30

Hi Christine,

i was sorry to hear your husband has fallen and in hospital. My husband has also been confused and disorientated, it is heart breaking to see I know. I do have a tendency to look back on how life was, which doesn't help. Unless like us who have experienced the way things are with this horrible illness, people can never understand.

Both of our grandchildren are in Pantomime at South Hill Park at the moment. We attempted to take him to see them, it was a nightmare. We were trying to make our way through crowds of people, which was so unsafe, he almost lost his balance. During the performance his tremor was so bad, probably due to anxiety, as we hardly go anywhere now, he is not used to being away from his comfort zone. We had an awful time trying to get him in and out of the car, very stressful sadly.

i do hope your husband is helped while in hospital, sometimes I wish mine was in for help, but somehow it is the same story, take another tablet, or tweak them so it seems that is all that can be done for him. Best Wishes to you , let me know how things transpire

juliet

31
Hiya...my Husband newly duagnoised 5 months ago....shocked was an understatement. He has started to fall asleep from about 6pm most nights. He us still working and I understand hes tired. When he does wake up and I tell him to go up to bed he denies being asleep and says I am imaging it! Gets really nasty with me. Ladt nught the phone rang in the room I was upstairs and he didnt hear it? He is also very forgetful with things. He forgets where I tell him I am going and therefore forgets to pick me up after work.....then says I never told him. Is this part if PD? Hes inly 59 and I feel hes starting to lose his personality at times.....sad sad sad.
32

Hi Babesbrown

Sorry to hear about your husband, my husband also has Parkinson's Dementia. Don't panic it could be a phase your husband is going through.  As  a precaution, if it gets any worse ask to be referred to a memory clinic.

Regards Juliet

 

33

Hi Juliet ,

I know here in the states ,Neurologists use Rasagiline ,which may or may not be known as Parnate in the UK to help with the sleepiness .

If your husband is on Ropinorole that drug may also make him sleepy ,depression can also knock one out . 

Regarding caregivers groups one does not have to go often ,but just to get emails from other caregivers to share  caregiving hints with each other or just someone hopefully to talk with when things do get rough.

I hope a solution will be forthcoming for the tiredness you and your husband are dealing with now.

I have family that always show empathy for what me and my wife go through but often what I need is other forms of help  then the empathy of "your doing such  a great job with what life dealt you",yes, that's nice but sometimes I need a break or as we say some physical  help :-)

Good wishes ,

Mike

 

34

Hi Mike

At the moment I am at the end of my tether, I will probably be ok again tomorrow. My husband seems to be getting worse daily in mind and body. I am finding myself getting more stressed than ever. He does not understand on times how physically hard it is for me, I am only tiny .

I know it is awful for him, he has no quality of life, Our family are near thank goodness, but they have no concept of how bad it really gets. 

I will keep in mind your care giving group, but I will wait and maybe pursue  it  in the New Year. I do hope you also get some help with your wife, 

Best Wishes Juliet

35

Hi Juliet,

I'm really sorry that you are going through such a difficult time at the moment. Please don't forget that we are here for you and that you can call the helpline on 0808 800 0303 (lines open Monday-Friday: 9am-7pm and Saturday: 10am-2pm) for a listening ear and moral support, as well as for support and advice on any aspect of living with Parkinson's.

Best wishes,

Mara
(Moderation team)

36

Hi Juliet,

My wife as well is getting rapidly so much worse ,in just 6 months she went from walking and creating her art as she is an accomplished painter to lately, zero  art work... as she can't stand up w/o falling .

We see the PD Doc's this Friday for an important evaluation ,she has the slow non shaky type of Parkinson's where there is little treatment as DBS implants do not work, to unhook her freezing of movement .

It is so sad ,she cried for a few minutes scared about her future and later on I left the room and also cried.

I reassured her that she will never be alone through all of this that me and her family were there with her.

At this time I can only hope to help her 24/7 ,home-care in our country is quite difficult when one is not totally poor and the bill goes to taxpayers  or totally wealthy when 125 thousand or more dollars a year cost is perhaps just a trifle..

We shall  go on ,as  the playright Samuel Beckett's  charactor's might ...we must go on...

Will update what our neurologists come up with ...

I certainly benefit from talking to PD experts over these  last 16 years of caregiving  ,do try to contact someone soon at PDUK or locally.

Good wishes  and yes the holidays are coming soon so let's find good cheer !!

Mike

 

 

37

Hi Juliet

I hope you are doing OK.

My husband is still in hospital (four weeks today).  I had an assessment of my house last week and he has been assessed at the hospital for the possibility of continuing health care.  We are awaiting a response.  When he gets home it will mean downstairs living.

I can't even get my head around Xmas.  I am just going with the flow for the rest of the family.  I am at my eldest daughter's Christmas Day with my youngest and we will go and visit Chris in the afternoon.  I havent really mentioned anything to him about Xmas as I dont want him to get upset.  We could have him home for the day but I think it would unsettle him too much and then we have to take him back which he would hate.  He missed my birthday too (the first in nearly 20 years).

I feel so sad right now and am just taking each day as it comes. I want him home but am so nervous of how things will be when he does get here.

Thinking of you.

Christine.

38

Dear Mike and Christine

I am sorry to hear about your sad times also. I know in my heart of hearts that our nearest and dearest have reached the stage where nothing can be done and life will never be the same, I thought things were bad last year, but this year like you both, has been awful for us. 

My husbands Parkinson's Dementia is also getting far worse, he was convinced he was in a schoolroom the other day, no amount of trying to tell him he was at home worked. This morning he thought I was talking to him on an aeroplane  , when I was just in the next room. He also sees me as different people. I must stress at the moment most of the days are ok but this is happening more regular.

After the New Year I am going to try and take advice on how to deal with this, I don't know whether to go along with him or to correct him.

My family keep asking if there is anything that they can do to help me, but as I am sure you all know 24/7 care is needed, like you Mike I do not really want to pay for help while I can manage, neither do I want to burden my family. They are  very worried about me I know, but I still feel I have to keep going with his care myself,.

Unfortunately  it is only human nature to be sad and also to feel sorry for ourselves, let's face it, we all know how hard things can be, a good cry is probably the best thing to do.

When ever I have rang the help line, I have only been advised to talk to our Parkinson's nurse. I did have a lovely nurse ring me back, but she could only say the same. While I know their intentions are brilliant they can only give what they can, if the health care my husband is with now cannot do anything for him, then I cannot see the point anyway.This is a view shared by many members of a Parkinson's group we attend.

Having said all of that, I do hope you manage the festivities, and that Christine your husband will be home soon. Please keep me posted

Take care, 

Juliet

 

39

Happy holiday!

It seems  to me from the USA that in the UK, PD nurses are in charge of a PD  patient and to me seem to have great control over  that patient 's care.

For  we patient's and caregivers in New York we usually see the primary Neurologist or a "Physician fellow" who is a medical doctor which chose to further study Movement Disorders diseases.

At times I feel frustrated that we caregivers are not more in the arena as witnesses 24/7 to our PD mates difficulties.

I have been so sad at my wife's inability to walk these past 6 months and thought it all due to advancing PD as it turned out now her issues are related to a herniated disc and not PD, her neurologist recently said to me that "they noticed  the injured spinal disc on her MRI last June when she was in hospital" Of course no one told me about that back injury then...incredible! , months have now gone by when she could have been treated by a neuro surgeon.

More to come on this and with it from yours truly is the hope that all the Physicians that my wife is sent to visit "the specialists" start talking to each other about their patients.

Good wishes in the new year 2017!

 

Mike

 

 

 

 

40


Hi Mike

             Lets all hope for a better 2017 and better PD meds, my wife is just giving Amantadine a go to see if this can help her.

             By the way Mike i had a fantastic time in NYC what a great city it is big grin

             All the best to all PWP and carers ..Billy