Glad your visit went well on this strange island..I am here for 75 years so I have seen many changes here one that remains constant it is busy city that changes every few months or so it seems.
I hope your wife does well on Amantadine ,my hope is that we may be able to fast track some of the newer drugs in research .
In my country it can take 10 or more years to develop a drug for market because of varied government regulations and excessive testing with snail like movement methology created way before we invented computers.
Because we have computers and better ways of evaluating the potential effects of new medicine on our fragile human bodies ,we hopefully will make drugs available quicker then a dozen or so years of testing .
I am feeling pretty down. My H of 79 diagnosed nearly 5 yr ago. I suppose you would describe him as moderate PD. Quite good mobility, sleeps well at night, bit of a shake in right hand. In the summer it was suggested he had Lewy body dementia. I find this devastating. He sleeps all the time if there is nothing on. He seems quite incapable of making any effort to do anything, particularly even the most gentle of exercising, he knows well enough how important this is. He seems to enjoy the sleeping. Saw the PD consultant yesterday. He seemed pleased enough with his walking and from "his point of view" things were OK. He didn't ask me anything, I thought this was not good. He said he was aware there were other issues but that was all. Hope we get better response when we see the psychiatrist next month. Best wishes to all struggling on and feeling wretched. C.
When my husband was diagnosed all the consultant said was "well you have parkinsons".....gave us a booklet and said he would see him in 6 months. We have just lost the PD nurse (whom we only saw once before she left) so are now left with no one and nothing to help us! I could not put on here what I feel about the whole thing. consultant made us feel that "its only PD " but as we all learn every day its not only PD....its a s**t thing with so many hidden things that rear up every day. No wonder we feel s**t with it.....unless you suffer with PD or live with a loved one with PD ....people and even consultants or GPs have absolutely NO idea of what PD us really about.......
Sorry you've been feeling down. You may find it helpful to look into some local support in your area for families and carers. You can search using your postcode here: https://www.parkinsons.org.uk/local-support
If you need someone to talk to do consider calling our Helpline on 0808 800 0303. We will re-open on Tuesday 3 January from 9am-7pm.
Well I so agree with you both, no one really understands Parkinson's, unless they live with it. I personally do not feel we are getting on very well with the medication my husband is on. He has tried different ones but nothing seems to work.It seems to me that other than offering deep brain which my husband does not want, there is nothing that can be done.
I cannot understand on times why all the meds which just makes him sleep, I know they said stiffness will set in if he did not take it, but my husband is stiff anyway, with all the sleeping he does we have no quality of life I am at a complete loss now as my husband has dementia too. After sleeping he does not even know where he is, and often who I am. I do know. unless you pay for it no help can be given regarding care. . I will carry on as long as I can. I did ring the help line once who just said to speak to my Parkinson 's nurse, so what is the use. My Parkinson's nurse as good as she is, and of which I have no complaints about her, can only keep changing his meds, but never to any avail. Such a horrible illness, it shows no mercy By the way, I also belong to 2 support groups
Chris has been in hospital for 8 weeks now and we are waiting on a response for Continual Health Care. I really wanted him to come home but he has deteriorated so much that as family we have no alternative but to look at putting him into a care home. He needs two (sometimes three) people to lift him and is now incontinent. I dont have the facilities at home to be able to keep him clean with no access to upstairs rooms. He has fallen three times at the hospital and has to be watched like a hawk. I would have to spend my entire life in one room. How would I cook, do other things around the home and take care of myself. I feel like my heart is being ripped out of my chest :-(.
At least if he is being taken proper care of I can be a 'good wife' and go and visit him as often as possible. I never dreamt two months ago it would get as bad as this.
I am so sorry to hear about your husband. I can fully understand how you feel about him going in to care. It is something we all want to avoid, but the choice is often taken away from us.
I do hope he receives the proper care I am sure he deserves, and that you can stop feeling guilty about him being there. It sounds like you know in your heart of hearts it is for the best.
I must admit my husband fully relies on me, I do wonder sometimes how long I can keep it up. He does try hard to help himself more, but this horrible disease has gone to far.
My very best wishes to you, Please Let me know how things go for you both. No- one knows in life just what is around the corner, just as well
How are things with you, I know you were feeling low and let down on your last post. At the moment I feel much the same, things seem to go from bad to worse. Waiting for a appointment for the memory clinic, neuro said he may be put on a tablet to help him, I guess that will take ages to come through, oh dear just sit and wait.
just to let you know that happened to my husband, went to hospital 11 years ago,I was not with him (the only time I did not go) did some tests and the consultant said you have PD, go home and tell your wife, will see you in 6 months.
My husband had a few falls, as a carer I done everything to support him, but it is hard and upsetting.
we never had a PD nurse, now we moved to a new area things are harder. not meet are new consultant yet.
I have been on this site many time to try and find help, we going to a local group next week, so looking forward to meeting other carers.
its so scary so I understand how you feel, take care.
my husband having his 4th sleep of the day and its only 7.30pm
Google "surrey looking after carers" and up will come a number of organisations. The council are legally obliged to support carers directly or via contracts to local organisation or charity
You are entitled to a Carers assessment from social services enabling you to discuss an action plan with someone knowledgeable about the local set-up even if concrete help is thin on the ground due to local cuts
It is difficult I know to move to a strange area, we have done the same. We retired to lovely Devon, and are now in Berkshire. Lovely having family close although they cannot do very much, but are always there when needed. Have you joined any Parkinson's support groups, we have joined two. It is a relief to meet people with the same problems, although some meetings are better than others. My husband is very poor with his mobility and he sleeps so much, It is a relief to get him out, although it is such a struggle. I think the winter months do not help, it all seems so much better when the sun shines. Hope it works out for you what ever decision you make. Take care
Hello Chistine - please accept my heartfelt condolences for your loss, but it is a blessing as you say your hubby is now at peace, and that thought will hopefully stay with you and help with your grieving. My thoughts are with you
