Hello Mrs T. Thank you for your kind thoughts. That is a wonderful daughter you have. She sounds much like my amazing granddaughter. I hope that kind of thing doesn't happen to you often.
Kind regards
JC
I feel very down this morning. Yesterday three friends came to see us, o/h's best friend too. It was great fun. My best friend in all the world brought her remaining little dog (handbag dog)after three years in SA. She put the tiny creature in the middle of the lawn and insisted we let our comparatively huge dogs out to meet her.
Pixie, the little one was immediately overwhelmed but crikey did she stand up for herself. Our Newfie wanted to pick her up and carry her like she does our indignant cats. No chance! Pixie was all snarls and bared teeth. Our two were scared stiff; it was hilarious.
After much chat, we left S with o/h and us girls headed out for lunch (I had prepared stuff for the boys).
Somehow we took up a table meant for 8 and had a great time with a lot of laughter. Towards the end of the aft, I asked them all what they they had made of o/h's condition. It went very quiet. Best friend spoke up. "It has been a shock." Was all she said. The others nodded in agreement. My heart sank. Suddenly I felt as if I'd been smacked hard in the face.
The atmosphere changed completely and we said our goodbyes in near silent sadness.
Just as I was about to drive off, another friend came up and told me quietly that a mutual friends husband had passed away suddenly the night before.
Pixie, the little one was immediately overwhelmed but crikey did she stand up for herself. Our Newfie wanted to pick her up and carry her like she does our indignant cats. No chance! Pixie was all snarls and bared teeth. Our two were scared stiff; it was hilarious.
After much chat, we left S with o/h and us girls headed out for lunch (I had prepared stuff for the boys).
Somehow we took up a table meant for 8 and had a great time with a lot of laughter. Towards the end of the aft, I asked them all what they they had made of o/h's condition. It went very quiet. Best friend spoke up. "It has been a shock." Was all she said. The others nodded in agreement. My heart sank. Suddenly I felt as if I'd been smacked hard in the face.
The atmosphere changed completely and we said our goodbyes in near silent sadness.
Just as I was about to drive off, another friend came up and told me quietly that a mutual friends husband had passed away suddenly the night before.
I suspect that this is not the right place to be posting, but I am tired. JC, reaction of others to a dx of PD is sometimes unbelievable. A sister, a very forthright sister, explained rather horribly that SHE could not cope with it, SHE had had enough of our mother's illness & SHE was having a difficult time coping with her mother in law
I remember talk of that sister AB. That was horrible of her. I agree; such a callous response was unbelievable. Best friend is absolutely not in that league. She was being totally honest knowing that is what I'd expect of her and she is an experienced nurse. In any case,it echoed my own concerns. On the surface of things it looked as though o/h had made an amazing recovery. As he has gradually tried to get back to his norm, the effects of such exertion have been extreme and he has become very depressed. Something he is unaccustomed to and finds frightening. The PD nurse comes late aft today in response to an email I sent her. We will know more then I hope.
I confess to fearing the worst as o/h has not responded to medication throughout since dx and the dementia, albeit it mild, makes it all the more difficult for drug treatment.
I confess to fearing the worst as o/h has not responded to medication throughout since dx and the dementia, albeit it mild, makes it all the more difficult for drug treatment.
JC , I take my very last hat off to you for refraining from the "drug interaction debate" Your husbands situation is most difficult. He is genuinely blessed to have you for his wife
PD nurse been and gone. Lovely girl and must correct incorrect info that I gave somewhere. She is still a full time PD nurse.
My worst fears are confirmed. O/h's accident has she feels accelerated his condition. She used the word frail. Exactly how I, friends and relatives view o/h now. Also,she agrees with us, that the medication appears not to be having the slightest beneficial affect at all. In fact after listening to the list of symptoms I had compiled, announced that a lot of them are side effects of the Sinemet. They include: dry mouth, dry lips, swollen lips, fretfulness and excessive weariness throughout the day. She concluded that it would be best to wean off Sinemet altogether over a period of time until o/h sees the neuro cons in August who might consider something different. She did however seem to think that o/h is sensitive to drugs which exacerbates the dementia symptoms and may not be a suitable candidate for medication at all.
Oddly I think we both feel a sense of relief instead of impending doom
My worst fears are confirmed. O/h's accident has she feels accelerated his condition. She used the word frail. Exactly how I, friends and relatives view o/h now. Also,she agrees with us, that the medication appears not to be having the slightest beneficial affect at all. In fact after listening to the list of symptoms I had compiled, announced that a lot of them are side effects of the Sinemet. They include: dry mouth, dry lips, swollen lips, fretfulness and excessive weariness throughout the day. She concluded that it would be best to wean off Sinemet altogether over a period of time until o/h sees the neuro cons in August who might consider something different. She did however seem to think that o/h is sensitive to drugs which exacerbates the dementia symptoms and may not be a suitable candidate for medication at all.
Oddly I think we both feel a sense of relief instead of impending doom
My husband is going through a rough time. Not an accident, but after me being in hospital, then my Mum being in hospital for 2 months and now needs lots of help, he is struggling. His very elderly, cantankerous, and a lot of the time, not very pleasant, step father who he has known for 48 years, is very poorly.
He is in warden controlled accommodation and we are getting lots of help. But, my husband is forever on the road to see someone, or try to sort out another crisis.
The thing is, he is shaking much worse, it is more noticeable now and he is very stressed. I know that after trauma, Parkinsons can get worse. Do things stay worse or do they improve or even go back to where they were.
At the moment there are things that he must sort out, I help as much as I can but I look at him and can see that he is worn out. flo
He is in warden controlled accommodation and we are getting lots of help. But, my husband is forever on the road to see someone, or try to sort out another crisis.
The thing is, he is shaking much worse, it is more noticeable now and he is very stressed. I know that after trauma, Parkinsons can get worse. Do things stay worse or do they improve or even go back to where they were.
At the moment there are things that he must sort out, I help as much as I can but I look at him and can see that he is worn out. flo
Hello Flo. I'm sorry to hear of your troubles. I have to admit that my o/h is considerably worse since his trauma and am concerned that it is likely to stay that way. Let's hope somebody will step up to tell us a different tale
Hi JC. I have just been reading your opening posts and so much is ringing true. After a stressful day, you charge round again only to be confronted by The Prescription. You can hear a collective groan. Why couldn't it have been delivered like the other medicines. So you charge off to get to the chemist in time.
With my mother also, if I hear another person say that we haven't got this or that because of the cuts I will scream. While my husband was sorting out a very tense situation I got 2 buses to see my Mum. For various reasons I was in a lot of pain, especially walking and after doing this and that I heard "Can your daughter get The Prescription?" I am ashamed to say that I snapped. The pharmacy is not an easy place to get to, and it felt like it was at the top of Everest. I may have sounded hysterical.
To her credit, the nurse held up her hand and phoned for the items to be delivered.
I am not proud of the way I behaved, other people have difficult lives and get on with it, I am usually the practical one of the family but not at that time.
flo
With my mother also, if I hear another person say that we haven't got this or that because of the cuts I will scream. While my husband was sorting out a very tense situation I got 2 buses to see my Mum. For various reasons I was in a lot of pain, especially walking and after doing this and that I heard "Can your daughter get The Prescription?" I am ashamed to say that I snapped. The pharmacy is not an easy place to get to, and it felt like it was at the top of Everest. I may have sounded hysterical.
To her credit, the nurse held up her hand and phoned for the items to be delivered.
I am not proud of the way I behaved, other people have difficult lives and get on with it, I am usually the practical one of the family but not at that time.
flo
Heavens Flo don't worry! I know what you mean of course. Your life sounds quite manic. I had a call from very deaf mum today in a flat spin about the local council cuts to her housing benefit. She told me she'd had a letter telling her she was only entitled to £250 a month sending me into an indignant flurry of activity.
I actually ate my lunch after wading through the phone menus to get to the right dept and hanging on!
Mum had it all wrong of course. Good job I'm the patient type and didn't lead off at the polite young thing at the end of the line. Mum had lost £9 weekly!
It does sound as though your poor o/h is expected to do far too much for his condition. Is there no-one else to help you two share these burdens?
I actually ate my lunch after wading through the phone menus to get to the right dept and hanging on!
Mum had it all wrong of course. Good job I'm the patient type and didn't lead off at the polite young thing at the end of the line. Mum had lost £9 weekly!
It does sound as though your poor o/h is expected to do far too much for his condition. Is there no-one else to help you two share these burdens?
Flo I'm afraid I have to go but I will answer any post in the morning. Do take care
both of you
both of you
Hi JC. There are a couple of family on O/H s side who bring with them more problems and on mine, people who love my Mum to bits but work, health , moving house, marriage split ups etc affect any care they wish to give.
Anyway, enough of me moaning, when things have to be done, they have to be done, hopefully with a more gracious attitude, like my Mum. best wishes. flo
Anyway, enough of me moaning, when things have to be done, they have to be done, hopefully with a more gracious attitude, like my Mum. best wishes. flo