Hello!


#1
I've just joined up Hoping to break through thelonliness i feel arond becomn a pd carer .....
Im new to the site and also to the concept of caring for someone with pd. my dad was diagnosed with pd 2 years ago and on hearing his news by phone my throat ceased, I couldn't breath and thought my world had come to an end.
Infact it wasn't nearly as bad as I had thought at that time , he has managed really well for the last two years and still plays 18 holes of golf three times a week, lives alone and keeps his mind fairly active.
I have noticed a number of symptoms recently which he talks about and clearly the process has accelerated to some degree..
I live about 50 miles from him and have just decided that I will take a day or two each week to stay with him and get to see how he copes alone. I'm starting to think to the future in terms of whether he will need to come to live with me or me with him, he often talks about not wanting to go in a home and I have a feeling he is starting to get a little bit frightened by what may become of him with his illness. He is a brave soldier - as dads are meant to be - and not likely to show me his vulnerability but I want him to know that I will take care of him when the time comes. Does none have n experience they could please share of how I might be best paced to approach his care pln- I forgot to mention that shortly flyer they'd dx g was all dx with emphysema!... Thesis theonei think my have the ardent effects on us health!,.
Any advise would be very welcome.
Thank you

#2
All I can say is he is very very very lucky to have a daughter like you,
trust yourself above any other advice.

#3
Sorry...

Thisnparagragh went a little wonky!

Does anyone have any experience they could please share of how I might be best paced to approach his care plan- I forgot to mention that shortly after he was diagnosed with pd he was also diagnosed with emphysema ... This is the one i think my have the hardest effects on his health...

#4
the emphysema is almost definitely the most urgent - if he smokes he needs to stop now. emphysema and pd are not a good combination.
"Quitting smoking is the single most important treatment to improve emphysema life expectancy."

#5
Hi Kodi. You sound very much like me in your approach to wanting to care for your Dad. I would be very interested in any answers you recieve and wondered whether we could support each other throughout this? :grin:

#6
Hello, I am also new to this fabulous site, i only found it yesterday. I am waiting for the outcome of my husbands illness, and just hoping after tests that PD is the problem rather than anything more life threatening, but the response I have had has made me feel more positive about things. The main reason I wanted to reply to you is that I am a long term carer for my brother-in-law 20+ years, he has lived with my husband and I for the past 14yrs. He is 56 but has the mind of a 5yr old, he has Downs Syndrome, and other learning disabilities he can be a real handful and the stress has taking its toll over the years. We never had any help from anywhere for years, no holidays, no breaks, just constant caring, until 12months ago I could not cope on my own anymore and was advised to contact my local social services, which would be within your local county council, they arranged so much help for us we just could not beleive it, and we had done without this help we were entitled to for years. They assessed his needs they now pay for 8 weeks respite a year for him, 2 days day care at a local centre, he gets picked up and dropped off, and it just gives us that little bit of time foe ourselves. I think if you contact local social services they will help you out. There has now been so many cut backs his respite for this year has been halved to 5 weeks per year, we are still very pleased, so don't do without like us get in there and get help, they will assess you as a carer as well if you wish. The other way would be to get private help hope this helps a little hols x

#7
Hi holly

Thank you so much for the information, that sounds really very helpful. I am sure it was a huge relief for you after so long and now you have time for yourselves... So important. I will efinately take that on board. Appreciate the advise and I'll heck it all out.
Best wishes

#8
Hi Kodi

I sympathise with anyone whose parent becomes ill. 2 years ago my father had a stroke which he was lucky enough to survive. He also has breathing difficulties.
I have had PD for 15 years, my sister has a 19 year old who needs full time care leaving my 75 year old mum to look after my dad.

If your father can still play 54 holes of golf a week with pd and emphasemia then I think you can take comfort because he must be very strong in mind and body.

That will help greatly in his fight against pd.

Was he a coal miner by any chance.

#9
Hi

Thanks for the reply. No he want a coal miner but he was a heavy smoker!... He gave up smoking 35 years ago but it seems from what the drs have said that he is suffering now for the damage caused all those years ago!. Consequences huh?,