Some advice please


#1
My husband has been diagnosed with pd in the last 3 mths though has had problems over the last 4 yrs. I have watched him become progressively worse since his diagnosis and the new meds he is taking ( Madopar). I wondered if there is something i can do to help him more when he freezes ie cant stand up from a sitting postion. My heart goes out to him when i see the struggle he is having not only physical but in his mind. I am screaming inside with fear for him but dont show him, he is a very brave and strong man. Im rambling on so i will ask the question " how can i help him when he is in this frozen situation and get him on the move again without showing im concerned for him.Any advice would be appreciated, many thanks. Phew...first post over.

#2

Hello and Welcome big grin

 

Speaking from my own experience I prefer to stand up under my own steam, it may take several attempts but I feel one must make the effort. You'll know of course that you can get armchairs to assist but these dont allow you to sit too close to the table if eating. Again my own choice but I dont like people fussing around me, If i need help then I ask, failing that I'm left to my efforts.

As for freezing and how to assist, again my own choice is to be left alone to get on with it as no matter how well intentioned my carer is it still can be stressful to be frozen and someone trying to help then getting themselves frustrated because they cant. For me its simply a case of methodicaly going through the mental process to get the limbs moving calmly. Rushing in this situation can make the freezing worse.

Hope that helps, but remember we all act differently.


#3
Thank you for your reply much appreciated. Just needed a little assurance We are waiting for the ot to visit but this could take up to 4 mths, i have noticed how quickly my husband mobility has deteriorated of late.

#4

Hi Jude, waiting 3 months for an OT visit is terrible.  If you feel that your husband is deteriorating then please ring them again and again until they put him on as urgent.  I did a self assessment referral myself to my council, explained the problems, she was referred to the Ots, adult social services and SALT team.  It is now 3 weeks later and I have seen 2 Ots (double referral from gp as well I think), the social worker today and will see the SALT team on Friday.  

We now have a wheelie camode, turntable for transfers, adjustable wheelie table, life line pendant and box with safe key (which they have already used) and after her not meeting the criteria for a hospital bed and another call to the OT explaining she is deteriorating further since assessment she is ordering a hospital bed.  I spoke to the Salt team over the phone and got her put down as an urgent referral after explaining she is coughing after eating (I was worried about aspiration pneumonia and wanted advice) and they think she will have to have a puréed diet.  I am going to apply for continuing care and ready to fight.

please don't feel you have to wait if your husband is deteriorating, Parkinsons is progressive and my mums condition is progressing day by day and it can be fast.  Once you explain your situation I am sure you will be seen sooner.  The social services ask you to ring back if you feel your relative's condition is deteriorating so don't feel bad about it just do it, nicely of course.

good luck and let us know how you get on x 

Sharon x 


#5

P.s.  My mum is also on Modapor, dispersible, due to swallowing difficulties.  We have found this quite helpful as a lot of her pins and needles, back pain, etc have gone however we find that she is a lot more sleepy during the day and also still freezes.  She is like your husband, strong willed, and wants to move and get up when she freezes as she finds it distressing.  I find it is best to leave her, as she likes to do it on her own too, and help her when she, or if she, asks.  It is very hard to see a loved one to go through this and our instinct is to help.  I don't think you can not be upset for them.  I know I look worried and concerned when she is struggling because you just can't help it because you care, but the simple fact that you are there for them if they need you is comfort for them I'm sure.

Sharon x 


#6

sad facenn

                Hello Jude, I know this might not  be what you want to hear but try not to panic, I  have been dealing with this horrible evil disease for 17yrs, as time passes you find a sort of routine, there is no  other way of dealing with it , each day is different, my wife is my own personal  Angel and between us we fight off the bulk of the attacks pd delivers, I am very lucky in that I was fitted , that sounds as if I am bionic, I was granted  the funding for Duodopa which has helped me so much, I was at the last chance saloon, nothing worked, or worked  very erratically  I had prolonged freezing dystonia  pains virtually every where , then a year and a half ago Dd fixed me up transforming  a 80.-97% cripple into a 95% normal person, unfortunately it isnt a cure and I some days revert to pre Dd   as I become tolerant of the drug, which is a  Dopa/ Carbidopa gel, and I know I wont be able to maintain the level of mobility I achieved when first aquainted with Dd,thats why maintaining a routine is vital, as it enables me to go on auto pilot, also if I  have problems standing up I use this Laptop as a counterbalance in a rocking motion, this acts almost like a ejector seat and  powers me upright, and I get through the freezing by thinking of a song with a infectious beat, Desmond Deckers  YOU  CAN GET IT IF YOU REALLY WANT works for me, sounds daft but it works for me, I know the future looks bleak for us all but they will discover a cure, maybe to late for some, but a miracle for younger folks, and it is coming all the leaders of all the countries and all the people living in those countries have to do is spend half the total spent  on weapons  , on medical research  instead,and they will have a cure by this time next year,   and Ive just  seen a pig flying past my window  .

                             Be strong Be brave  jude, there is no other way.

          Kindest  Regards                                                 FED