It's a while since I've posted on the forum, but need help.
Over the last two months things have got steadily worse, particularly with akynesia (freezing) and facial Dystonia.
I now have to consider buying special equipment such as as a lift up chair and some sort of special bed. Plus rails and any other devices that ease the problems associated with movement from a static position. For example getting back into bed after going to toilet. The other night it took me about 15 minutes to get back into bed. Like most 77 year olds I have to go at least twice during the night. When I first go to bed my wife will help. Also getting in and out of a chair is problematic, sometimes I use massive amounts of energy in these normally simple and automatic tasks. I have very mild atrial fibrillation and this is definitely getting worse, particularly after staring to get up or getting into bed. I perhaps should exercise more. Ido have a static bike, languishing in the shed.
What is the best procedure to get help with this problem and get assessment? Is it very much a local thing as to the level of help in this quarter. Is our area of East Anglia good for this SA?
The freezing is much worse during switch-off periods, which are now getting more severe and frequent.
The facial Distonia drives me potty and it's now starting to distort my face, which is affecting my ravishing good looks. I'm beginning to know why you sometimes get so angry BB. I realise that all the aids in the world won't help this.
I'm seeing my Neurologist next week. After a long wait. I'm torn between what she may say and what the PD specialist recommends. Often their advice differs.
I'm not too sure about equipment, My Grandfather was directed to someone from by his local gp surgery who visited him at home to then see what his needs where, i think it was someone based at aldeburgh ?? It may be best to contact one of our support workers? she may well be clued up for your needs or will know.
Bernie ryan self support worker : 0844 225 3619 or email : [email protected]
Ips & east suffolk branch : 07932 063640 (some one there might be helpful too)
parkinson nurse helen williams 01473 704243
Hope your well anyway Jules and keep up the good looks!!.
I don't know what I've done,
Seem to have sent blank page, with no subject.
thanks for the info. Very useful. Got to do something as switch on, switch off is getting too regular. It's causing a big increase in freezing, inner tremor and Distonia, then bingo I'm ok for a while, can't link it to timing of intake of Madopar.
It's really weird.
Have you asked yoTt local sociAl servces for an occupapational therapist assessment. They come to your house to assess you and put all sorts of things in place for you. I am getting a gas mobitor in kitchen because I keep forgetting ti light the gas on the hob when i switch it on. We have talked about chair in shower. Some things are meantested so there might be a cost, but when your safety isan issue it is worth it. Sorry me and this machine arent on good terms today,! heeancerv
Hope you've got somewhere since you posted Jules?.
Yes thanks SA, I got put on to a help line, they put me on to the org that deals with organising one to see physio and occupational therapy. They apparently will reassess my needs such as rails bed aids, riser chairs, etc. let's hope the waiting process is'nt too long. I understand some things are provided and others can be VAT exempt.
I need to get things sorted though. I've now got to admit that without my darling wife who is now, I guess, a carer, it would be problematic if I could manage on my own during a switch offs. I'm not allowed to drive and living in a village we need transport.
it's weird though - currently I'm sitting here feeling good and walking reasonably ok. But I know that any time the switch will throw and I'll be struggling. The switch off is a fastish sequence - first thing is inner tremor and a sort of numbness, then the Distonia, particular the face, then the spaced out feeling and then the dreaded freezing. This all happens in the space of ten minutes. Sometimes I can work it off (with massive effort) sometimes I just have to give in to it.
Lets hope my neurologist in that east coast hospital we both know SA, between Berwick on Tweed and Southend, can sort it.
Thanks to you for your advice on the subject Porthos.
On the subject of realistic dreams and the one I mentioned in another section of the forum, I'll see about getting it copied onto creative corner.
Glad you've got progress Jules , I don't think grandfather waited too long he had a home visit and assessment not long after a trike (bit like a trolley) and rails arrived 2 -3 weeks over all, I sometimes get a spaced out feeling of tiredness and that's usually my que for a rest a hours power nap restores, all the best on your appointment, i have one in april (with nurse) 8 months since i last had one with the neuro.
Hope you get what you need sorted. It's so hard to find the right people to help. Will keep an eye out for your story.
My Mum's GP referred her to the OT people who did a home assessment and provided some equipment, and also supported me with giving advice on what to look for when buying a riser recliner chair and an electric bed. Make sure you ask for the VAT reduction if you buy something.
I had to buy my Mum a riser recliner chair as the ones available were too big! The OT helped with making sure the measurements were right, and so when I bought a made to measure chair - (from a very good family run business that Mum's Nursing home recommended) I was confident that it would be right. When her needs changed they sent someone round to advise and advised on how to support her sitting upright. Very helpful.
Having the chair meant that Mum saved her energy for doing more exciting things than just getting up or sitting down! She could also recline it and have an afternoon snooze in comfort and not have to expend energy moving rooms.
Good luck with sorting out some stuff to help make life a bit easier.
As Mum often said "all these things help me to be dependently independent!"
Hi all, inc' Keld, SA and Porthos,
Waiting to hear from somebody (anybody) regarding Occupational therapy and Physiotherapy regarding assessment for devices for bed and chair requirements. Sometimes it takes me more than ten minutes to get into bed.
following your advice I put things in motion and quickly. That was over two weeks ago but haven't heard a thing since I contacted them. So I'll chase them up. Is that sort of wait normal?
Thanks for your input about the chair Keld. It's useful to know that we can be VAT exempt for certain items.
Hi. They took a long time with me but I think I was probably not such high priority. When I initially referred I had not even considered the possibility. of PK, but thought the problems were maybe from a bleed on brain and op a while back. By the time they assessed me I had seen the movement disorder specialist and had the poss PK diagnosis. It could also be different areas have differernt waitingbtimes. It wouldn't,t hurt to chase them up, at least they could give you an idea how long they will take. I found in my case the wait had a positive outcome because I ended up with an occupational therapist that did part of his training at Queens Square Hosp up in London where I go, so he is very understanding.
Hi no it doesn't seem to be normal & im sorry to hear you are still waiting Jules.
My Grandfather had a fall on the 26 th of march overnight his 96 th birthday, i found him the next morning he had laid on his living room floor all night, I went too my the surgery explained and his Gp called the next morning, the gp called occupational therapy people 'community health team' they are based at aldeburgh for the coastal area at least,. a lady is commin on the 7th to assess him and i shall be there.
Do chase them up & let us know
here's a number for the 'community health team' i don't know if it includes your specific area but anyway? worth a try if all else at least 0300 123 2425.