Freaking out


#1
Hi,
My husband was diagnosed with early onset PD 6 months ago. He is only 38.
I also have a mobility disability, I lost both my legs in my early 20's. My husband helped me though my illness an helps me on a daily basis with out daughter.

He is very early in the progression, and so far the symptoms are mainly difficulty getting up in the mornings; fatigue; right hand weakness and tremor; and right shoulder pain. He does seem to get confused a lot and can't do too much in a day or two things at once.

I am terrified as to what will happen to us when we get older. As I am not sure I can care for him as well as myself. I have had anxiety for a few years now, and it has escalated to the point where I am no on medication for it. He seems to be coping better than I am. I have a nursing background as well as personal experience with the frustration of disability, so I think I am more aware of what is around the corner than he is, and its driving me nutty!!

#2
hi lizzieb
every person with parkinsons is different, but if he is average he has probably about 10-12 years of useful treatment ahead of him with basic oral drugs. currently the next stage is DBS or duadopa pump, which, just at a guess adds say 5 years treatment. So thats the next 15 to 18 years taken care of. in that time there are bound to be other treatments, even cures, developed.
its not a sudden terminal disease, so dont try and look too far ahead. once his medication is right you should be on a long patch of not bad. Enjoy it.
cheers

#3
Hello, lizzieb --
I often find myself echoing what turnip says. It is wise at first to try not to think too much of the future. Your husband needs to keep a positive attitude insofar as possible. That and exercise are the greatest contributions we can make to our own well-being. I have had PD for 15 years and still lead a normal, active life, though I do have some symptoms to deal with daily. Two meds for the symptoms and two to delay the disease are working wonders for me. I wish your husband equal good fortune.

Also, I think it is usual for the loving spouse to worry more than the patient. My late husband fretted about the future far more than I did. But his plan to be my caregiver didn't quite turn out as he expected. We simply cannot plan far ahead. Best wishes to both of you!

#4
Hi - what a lot you have to deal with. My husband was diagnosed aged 31 and 10 years on is still doing well and manages to work full time and drive still. Everyone is different. We have bad days where we get a glimpse of the future and it scares us but this has also helped to prepare us. Our lives have changed massively because of Parkinson's - in a good way. It is really overwhelming at first, let people help you, find people to talk to and be kind to yourself.

#5
:grin: thank you so much all for your reassurance. I can't tell you how helpful it is to hear the lived experience into the future. When we talk to friends and family we mostly receive shock, and suggestions for our already busy lives. We are now six months on from diagnosis and starting to deal with it all a lot better - from personal experience there are ups and downs in the road to acceptance, but I feel like at least we are starting to get over the diagnosis hump.