Hello All, im going to use up all the space I can for this post, the subject Carers is a word which does not really cover the vast amount of help I receive, starting with my beloved Lorraine, I know she wont like me telling you all that she is my rock, I knew when we first met 32yrs ago she would care for me like no other, I did not think I would be stricken with Parky all those years ago indeed the Diagnosis in 99 neither of us knew what lay ahead,WE KNOW NOW ,my wife is my lifeline and when im 100% shut down has to do everything for me,True Love. My daughter and my Son in Law, well he is the son I never had and we have a great relationship having so many things in common and he would do anything for me, My daughter is a trained carer and it shows, when old Blackheart Parky is giving me a kicking she gently encourages and guides me until the Dopa brings me back to life this little lady would ,as her Husband care for me through thick and thin no problem is too much, True Love .I have eight dear friends who would drop whatever they were doing to help me, and last but by no means least my Care Manager, my consultants Physiotherapists Phsycologist so much support,I will be eternally greatful to them all. I know this sounds soppy they are all special ( fedexilike )
What a truly lovely post you have posted today, we like you have been blessed with only one child, a son who although 40 now is still single but living in his own house. He has been a wonderful support to both my husband and I even though we have always been very independent people. My husband and I have been married for almost 47 years and we managed at home for 28 of the 30 years he has had PD until a couple of years ago when I just couldn't manage any longer even with 24 hour care mainly because of his unpredictable behaviour, most of the time he is my lovely husband but suddenly he changes and becomes too difficult to manage. You have a wonderful family and you obviously appreciate them and the many friends and care you have received as I expect many others may also have received but we don't always remember to tell those most dear to us. My very best wishes vivian
Hello Vivian PD puts everything into neat perspective doesnt it , things which used to be a big worry or obstacle seem to fade , I know I am very lucky to have so much help my family my friends priceless beyond belief , sometimes when PD is giving me a hard time my Daughter arrives with her little dog Betty as if by magic my mood improves when she begins her daft half hr Betty not my Daughter , flying around the house like a mad thing. simple joys. Kindest Regards fedexlike
Yes a loving family makes all the difference in life although I can't say our extended family have been much help especially when I was confined to bed for a couple of years and all the years after my back operation but I don't really expect people to understand as it's not until you have these type's of long term problems that you fully understand yourself. I feel very sad for my husband as his sister never rings to see how he is or visits he has only seen her about four times in the last thirty years and she lives about 90 miles from us. It is no good looking back on those memories you have to put your best foot forward and smile if you can and that makes a huge difference to how people treat you doesn't it. We have always been blessed with really good friends and we are there for each other no matter what, gosh several of them are from 40-50 years ago this getting older is not so good! When we had our 25th and 40th wedding anniversary we renewed our vows and read out a prayer we had both written followed by a party on the Sunday afternoon with a band and disco, my husband danced with a friend to Grease music ( I can't dance worse luck because of my back problem) but they had a great time. I know that however my husband behaves sometimes he loves me as much as I love him and it is the pd talking, it is such a shame he still can't be at home but if he ever is able to come back I will have everything ready, life is hard at times isn't it. You are lucky that your daughter is married to a lovely young man and I can fully understand how you must feel as we had hoped for the same with our son but he hasn't met the right one yet,it is so different these days . All the best as I had better stop now. kind regards vivian
Hello Vivian I have just returned home from my Disabled Friends group , we are a small group of individuals who all have some form of disability ,but as you know there is safety in numbers and we all look out for each other ,I was really unwell this morning and had half decided not to go but I did and they always greet me like a long lost relative and of course this always cheers me up I am a different person now, my Care Manager, is due in 5 mins, and my daughter is coming to visit, in fact she is here now so must go, will contact you later with update.
Hi fedexlike and vivian Just enjoyed reading your conversation. I wanted to say that I too am blessed with the support of my wonderful wife. She has been amazing ever since my PD was diaganosed, but earlier this year she topped everything. She was diagnosed with the auto immune disease rheumatoid arthritis her first words were
I can't have that I've got to look after my husband.
Hello Mathsman You have a very special Lady, her devotion to you takes priority I know you will be strong together and the challenges PD will place in your way will be overcome , another example of True Love. All the very Best Wishes to you both fedexlike
I hope you are both okay today or at least for some of it, I haven't been able to see my husband this week due to the floods but we are hopefully having sunday lunch in a local there for my birthday, another year older I wish it was going backwards still never mind it comes to us all. The last year my husband was at home he arranged with the carer's to help him make a lovely meal for us on our wedding anniversary (45 years, now coming up 47)He had the table dressed really well and had a photo of both of us when we were younger enlarged and framed, it was a lovely day for me to remember. Fedexlike I am glad you go to a club with your disabled friends, it is so important to keep up some social activities and both my husband and myself have made many friends through these clubs and had a lot of fun. I don't know if I told you but I have joined a singing group for fun as I was finding it really sad this year us being apart to action was needed, we are putting on a little concert on Friday week so lets hope we are in tune. I always feel very blessed that we are a close family and I have a wonderful husband who has coped amazingly well all be it sometimes making my life hellish. Best wishes to you both. vivian
Hello Mathsman and Vivian, reading your post , well it hard to explain, but its like a Band of Brothers feeling, I cant think of the right words,perhaps its cameraderie , I was just browsing through all the sections of this most exellent of forums and I realised how many people ,very special people are in the same boat as us ,either suffering from this most wicked of illnesses, or caring for those who are stricken by it, there must be many thousands of individuals who every day share with us the pain and anguish that PD deals out, and keep on fighting back refusing to give in using any means available, any resource to hold old Blackheart at bay, ( thats one of the more polite descriptions )I know this might sound a bit odd but I feel priveledged to know you all knowing what you are all going through and reading your contributions, I feel sad inspired anger admiration ,and somehow feel strengthened by the spirit shown by these very very special people , we wil probably never meet, but through PD I feel as if I know you well and its good to have so many friends, would you agree. fedexlike
You have such a lovely way with words, I totally agree with you we have made so many friends through PD over the thirty years and just yesterday I had a phone call from the first lady I got in touch with all those years ago,sadly her husband has died but she is a fighter and doing very well. I had some good news regarding my husband today, he had been restricted from going out of the care home for about four months but the restriction has been lifted so he has been to go to the cinema and shops with his carer's which will have cheered him up no end. Its my birthday on Monday so we are going for a pub lunch near the home providing Parky lets us of course. To get back to what you were saying there are many lovely people in the parky world and it really helps to have a positive and open attitude, we are all trying to keep our spirits up and sharing is one of the best ways of doing this. When things get difficult there is always someone to lift you up. You are right of course this really difficult condition is a real PIG but unfortunately we are all stuck with it, it robs of so much but you can't dwell to long or you would never get on with it would you, you have to look for the better days which is not easy is it. I must say it has helped me a great deal being on the forum since my husband has been in the nursing home as I too feel part of this great family. All my very best to you and your family. vivian
Hello Vivian In 1999 I was told I had PD by a rather grumpy and very unsympathetic consultant at a Newcastle Hospital, as I said that was in 99 ,I was feeling the early signs of the disease which until that awful day I had never given a thought to, and I immediately went into denial mode,, Nah they made a mistake, that noisy MRI scanner needs a service, Nah not possible,now go forward through time , its almost 2013 and I have lost so much and yet gained so much, I changed Hospitals years ago and was offered voluntary work ,dealing with Doctors Nurses Social workers giving them inside knowledge of living with PD,I did a number of talks and after every one many of these Professional highly skilled and motivated individuals came to me and said,, we had no idea it was so debilitating, so cruel so destructive, they were learning from me, ME just a ordinary bloke in his fifties and they wanted to hear my story, it was such a rewarding time for me and I too learned so much , it became a mutual exchange of knowledge. During this time I also met many PD patients and many were very seriously ill, many were elderly, but there were also some very young people ,the youngest being 39,I must have asked this question a thousand times why what is causing this horrible Disease and when will there be a cure and a end to the suffering of so many, in the meantime Vivian you and your family will continue your support of your dear Husband and my wife and family will support this sometimes grumpy stubborn 62 year old and we face the future together who knows what lies ahead Wishing you all the very best. fedexlike
I am so glad that you managed to talk to so many professionals as they really are surprised to hear what pd is really like to live with. We have and still do as much as we are able to pass on our experiences of life with pd so as many carer's and professionals because it is still such a misunderstood condition as well as always changing one. I at least one person in every surgery and hospital could explain what living with pd is like it would help to spread the word. Years ago when we first started out all the professionals said you didn't get pain, constipation, diet didn't matter it didn't affect medication absorption and many more problems but now there are fact sheets on most of these subjects so it goes to show nothing you say is wasted. By the way if you have trouble swallowing your pills try having water from the fridge as it stimulates the swallow action also you can always take them with yoghurt's or custard these work really well. all the best to you and your family vivian
Thank you for the tips about swallowing my pills, I never thought about the custard system and I have great difficulty swallowing , also for some reason I always endure moderate to severe Dyskinesia when I eat which means no restraunts as it gets even worse if I am in public Kindest Regards fedexlike
Hello my Friends Hello !! Sorry about that ,I have been watching Neil Diamond on the Royal Variety and that song always, ,,Yes Yes Ill get on with it, My day started at 4.45AM , a combination of Horrific night terrors hallucinations,! its nearly always a dwarf version of the creature in Alien , it slowly creeps toward me its telescopic inner jaws flexing in anticipation of a easy kill, I cant move, frozen in terror and only escape as the sound of my screams penetrates my unconscious state or my wife enters my room and gently rescues me from certain death, also I saw my Dad again last night ,he passed on in February he just stands looking at me for a minute or so then fades, by then I had enough and went down stairs ,hot black coffee no sugar = no sleep , I decided to make use of a facility I use a lot when I need distracting, I am deeply interested in anything Aviation and use a FREE download called : Flightradar24, its fascinating ,you can track thousands of Aircraft world wide , try it its free just type in Flightradar24 in the search box , download is simple and both ladies and gentlemen I find quickly become fans I hope the Administrators allow this as it does exercise the mind. Parky was behaving and I was hoping to make a Hospital appointment, having missed twice due to severe110% shutdowns after a couple of scares I managed a rather shaky entrance to outpatients, my allotted time was 3.45, it was 5.10PM before I saw my consultant and I was shutting down fast, as I sat ,in his room everything ground to a halt I could not walk speak and only kept upright by two nurses, the ordeal over I had to make it to the main entrance, the same two nurses assisted me as no wheelchair could be found, this was a wideawake nightmare from which there was no awakening, the young ladies both very kind almost carried me to the car and then the journey home, in the dark , a wideawake NIGHTMARE. Exausted I collapsed onto the chair,It required a superhuman effort but I had made it home, my Good Wife Lorraine made the best cup of tea I have ever tasted and Its now 1.36AM I am finally 95% mobile but frightened to sleep , I will go up about 3 AM Wish me luck I will need it. Sleep well my friends. fedexlike.
I also have dyskinesai when eatingā¦Iif going out for a meal I take 10 mg diazepam an hour before and that stops the dyskinesia. My GP is happy to prescribe diazepam for occasional use and i have taken it occasionally for 10 years never more than 3 times a week
Hello All, im going to use up all the space I can for this post, the subject Carers is a word which does not really cover the vast amount of help I receive, starting with my beloved Lorraine, I know she wont like me telling you all that she is my rock, I knew when we first met 32yrs ago she would care for me like no other, I did not think I would be stricken with Parky all those years ago indeed the Diagnosis in 99 neither of us knew what lay ahead,WE KNOW NOW ,my wife is my lifeline and when im 100% shut down has to do everything for me,True Love.
