Severe neck pain and sleepiness


#1

#2

Hi, this is my first post.My husband was diagnosed with Parkinson in 2012.For the last 2 yrs he has had LBD.  He has just come out of hospital after a fall and has gone down hill so much.

He is so confused and is complaining of severe neck pain, the pain is so bad he cannot open his eyes and just wants to be in bed. He looks as if he has given up and I feel so sad for him. I am given him paracetomal and putting a neck warmer on him, I am wary of giving him a stronger painkiller as this just makes the constipation worse.

I am so scared we are reaching the end stages of this dreadful disease.

Any advice would be really appreciated

Jeanie


#3

Hi Jeanie,

I'm so sorry to hear that your husband is confused and is struggling with so much pain at the moment. This must be a very worrying time. This forum is a great place to find support and advice, and please do remember you can give us a call on 0808 800 0303 and speak to one of our Nurses - they will be able to give you more advice about what might help your husband.

Take care and best wishes to you both.

Joanne - Digital team. 


#4

 

           Yes Jeanie  I  recognise and am at  war  with  all  the awful side effects of  PD,,some days Im hardly able to  bear  my  own  weight, the  only  difference is its   vvvsevere  lower  back  pain, I have  had  two  injections into  my  spine  but  the  did  not  make  any  difference, so  its  a  case of  plodding on through all  the  horrible  things  your  poor  husband is  having to  bear  but  also  the  strain  on  you  must  be   terrible and  if  he  is  showing  signs of throwing in  the  towel, well  thats a  pity  as  this  pig  of  a  disease   can  be  put  back  in  its cage but  the  further  down  he  goes the  harder  to  get  up  as it were,  pull in  all the  help  you  can  Jeanie  its  all  there , I wish  you  both all the  very  best  in your war, with  one of  the  most  cruel of natures   ailments

                                         Regards       FED


#5

thank you so much for replying.

I have been in touch with my husbands doctor and his advice "consider a care home"!! no way, I shall fight this on his behalf to the bitter end.

Fed, I have read a lot of your posts, you are so inspirational. I have taken your advice. After speaking to his doctor i have been in touch with our local hospice and they tell me they would have him there for a few visits and have the pallliative team assess him but first he has to be referred by his doctor!!

Peter can't do anything for himself now, he had a fall which resulted in a hospital stay for nearly 4 weeks. Whilst in there he had chest infection UTI and the flu!!  Alzheimer society are coming to see us on Friday, hope they can offer some help.

It's a lonely road for the carer,I am tiptoeing around all day as I don't want to disturb him. I did love walking but can't chance leaving him as when he's awake he constantly needs reassuring I am there.

jeanie

 

 


#6

Thank you Joanne.

I have picked up the phone many times to ring Parkinson UK but for some reason just held back.We  do have a Parkinson nurse but she is very hard to get hold of. I know she is really busy and has a large area to cover. I desperately needed advice on the rivastigmine patches, Peter had been put on a much higher dosage and I didn't know whether this was adding to his confusion.He seems to have settled down now. I have been in touch with the memory clinic and they are arranging a home visit as I can't get him into the car'

jeanie


#7

 

                       Oh  Jeanie I admire  you  dear Lady for  your  strength and  resillence , and  the unbroken  loyalty to  your poor husband, my  wife  behaves with  the  same  outlook I never  ever  thought she  would  have  to dress and  undress me or  if  not  fully  assist  me, dress, and  feed me as  often i DONT  HAVE   the strength to  lift a  spoon but  thats  what  parky  has  infliicted on me and I think its  only  my  stubborness  that  keeps me going  when  I try  to  talk about  it she  just says (in sickness and in health) so  two  Ladies same absolute dedication  same  moral  compass  you will support him until he  leaves and  moves to a  much finer world than  this and  will  be  there  when  its  your  time,  I lost my  Dad Mum,and 3 good  mates in less  than  a  year the blows  were  heavy  Jeanie and my head went  down,  but  bowed is  not  beaten  dear  Lady and  you  can  hold  your  head high knowing you have done  everything  you  could Iknow these are  just  words and  cannot assuage your  pain  and grief  but when I think of my  parents  it  comforts  me to  think  of  them exploring their  new pristine world, and my  Mother  playing her  piano  with  dad  singing both  fit  and  living to  the  full   the  next  dimenson,  when  I think  this  way it  seems  to  ease   the  sadess  for  a  while and I hope it  does  the   same  for  you  dear  Jeanie but  keep  on  fighting where there  is   life  there  is  hope and  keep on pestering any one  who  will  listen   you  are  entitled  to  help in  times  such  as  you  are  suffering.  

                                         FEDexlike  

                                                      Kindest Regards


#8

Dear Jeanie,
I do so admire your steadfastness and courage and may I say loyalty, in the dealing with the level of illness and PD that Peter has.
Please take comfort in the way you are dealing with emotionally and physically draining circumstances in such a dedicated way.
Your postings and the beautifully crafted reply from Fedexlike demonstrates so well the level of this horrible disease as it afflicts one in what is called the later stages.
In some of my postings I may appear rather flippant but I'm fighting this disease with every piece of energy I can muster and my use of the battle metaphor is a way of dealing wth PD.
I feel somewhat humble when I read about the level of suffering and debilitation that advanced PD can inflict on us and how courageous sufferers and carers are. Particularly as, although I personally need some help and I know things are not going to get better, I'm still able to do many things that many PD sufferers find impossible.
Advice is so difficult to offer as Parkinson hits with so many weapons and the psychology and physiology is unique for each person and each person responds differently and medication is so problematic. I can only end by repeating what  Fedexlike, says "keep fighting."
My thoughts are with you.
Jules77


#9

Thank you both so much Fed and Jules.

I am sitting here feeling very emotional, some kind words and the tears flow!

I think i mentioned, Peter has Lewy body, hallucinations and delusions are horrendous. The nurse from the memory clinic visited and has now put him back on a lower dose of rivastigmine.I am learning how to react to the delusions, I would at one time try to correct him,  now I just go along with whatever he is thinking and seeing.It is so hard to see this wonderful man like this, he was so much in control of all our household management, brilliant at D.I.Y. I have had to learn so much in the last few years.

He will be attending our local hospice on Thursday, dare  I say I am so looking forward to this ( for me as well as him) I know they take excellent care of him giving him physio and the attendance of a neurologist.

Once again thank you for taking the time to post.

Jeanie