So I am 42, this means I’ve had it since I was 37. I have 4 daughters and I am petrified about the thought of their future. My youngest is two and showing all symptoms of autism, been through all the stages just waiting on a paediatrician but it’s so cruel. I feel like she’s going to be robbed of her mother. I need to be there for her, my other daughters are 11 17 and 20. Anybody else with young onset Parkinson’s have these worries? My mother and long term partner live with us but I already feel my cognitive state is declining and without meds I am in a terrible way any advice please guys x
Parkinsons is a neurological desease and I would be seeing a Neurologist. PCP are not specialist.
My GF was a juvenile diabetic and I feel she did not teach her girls how to help her. She had a bad heart attack in her 50s and lost a leg in her early 60s. Both her daughters, IMO, were self-centered. (I think ones problem was she was high end Autistic) I am not saying that they should not have lives, extra curricular activites, etc. but I think they could have made my GFs life a little easier. Teach them how to cook something simple when she was too sick to do it. Teach them how to do laundry. Clean up. Dust. Run the sweeper. It makes for a better adult. My GF and her DH are gone. I know the oldest has her problems at 44. The younger is the Autistic one and hoping her MIL has stepped up to the plate and helped the couple because both have challenges. She has challenges because Mom and Dad did not get her ready for when they weren't here. My GF passed at the age of 63 and her DH passed 2 yrs later. Leaving their girls with no life skills.
In that time, he worked FT, took care of a huge home and yard and a difficult spouse (my mom).
We'll never know if taken PD meds earlier would have made much difference to the outcome. He probably had it when he was early 40's--and didn't 'acknowledge it' until late 50's. He was as active as he could be and took very good care of himself.
I think that by 'forcing' himself to keep walking, keep moving, eating well and keeping involved in his professional life is what kept him going.
We formed a very tight and loving circle around him, which is what I would suggest you also do. People who can be there for you.
It is what it is--and you know that. I know daddy's attitude, 90% of the time, was good. Everybody has off days, he was no different, but until he became bedridden (6 months prior to his death) he was always congenial and a joy to be around. So, YOUR attitude will set the tone.
When I worked Elder Care, my primary client had PD and you could NOT slow this woman down. A better attitude and personal 'push' I've never seen since. She lived to 84(?) and was in an ILF at the end, but I tell you, she planned more in a day than most people do in a week.
Again--good food, a rest once or twice during the day and personal spunk made her a poster child for living well with Parkinson's. She never ONCE complained about it. Just barreled through life.
I know this is scary and certainly not what you WANT..but you can live a pretty great life with the disease or you can give in to it.
Plan now for all the possibilities, don't borrow trouble and enjoy the love you obviously have for your family.
((Hugs))
As has beed suggested, do find local support groups. But, do not assume that "the community" will provide any kind of consistent, reliable in-home hands-on care -- so better to not include it in any planning. If it happens, great! But do not assume or rely on it (you can read on this forum that Good Sams get tapped out pretty easily). This also goes for your immediate family. Not that they wouldn't want to provide 100% of in-home, hands-on care but for a variety of reasons things may not permit this. Best to plan for all realistic options and "worst-case" scenarios.
May you great wisdom and receive complete peace in your heart as you go on this journey with your family.