Have been monitoring this forum for 2 years - you have been very helpful. Signed in because of the recipe thing; thought it might help.

Diagnosed 2 and half years ago; radiation only. Still in remission. I have good days and bad. The bad is that everything seems to revolve around food - holidays, travel just being with friends.

Over a year ago my husband was diagnosed with OPCA, or spinocerebullar (sp) degenerative ataxia. Progressive, with no cure. And very rare. And, unfortunatly progessing.

I think I could have handled my situation much better if I also did not have to deal with his. Not a whole lot I can do to change what is going on.

We have realized the future and are renovating a downstairs area to accommodate someone who will not be able to handle stairs, and will probably be in a wheelchair; we live in a 2 story house, where all the bedrooms and full baths are upstairs.

Is there anyone else out there who is in a similar circumstance? How do you deal with your own limitations, your partner who will only get worse according to the prognosis? His disease is progressive, and will only get worse; he may be in a wheelchair soon.

Thanks.

Hello there,
Do you have any family that can help you? My sister was diagnosed with ovarian cancer and her husband has had a stroke, so I helped out and kind of rallied her family. Then my father was diagnosed with Lung cancer while my mom has alzheimers. So again, I pitched in and rallied the family. In times like these, family support is most critical along with prayer if you believe in that. From a more practical point of view, assited living is an option and would recommend you sell your house and/or set up a limited family trust so you don't lose any of your assets. Assisted living is good because they already anticipate the handicapped situations and provide for that along with trained personnel. It can be expensive which is why you need to protect your assets from being taken by the government assisted programs. You can transfer one piece of property into a trusted family members name as well, rent it out and use the funds to pay for your increased care. You should consider all of these options quickly as your health will continue to deteriorate until you can't do much to help yourself. As for me, I have been setting these things up for my family and now as a single mom, must do it for myself as it appears I have oral cancer. But such is life. The twists the turns are nothing but an additional challenge as are all things.

Best of luck to you.

You have a great attitude and my thoughts and prayers are with you.

We have no family here; they are spread out all over the place. They support us in many different ways. Looked into assisted living, but it does seem very expensive. My husband's brother who is a nurse recommended we try to keep him home as long as possible. He is still mobile, so we opted for renovating a downstairs area to accomodate his future needs. Even if I have to hire some help; we think this is the best option at this time.

We are in pretty good financial shape, and I am aware of protecting assets if need be. It's hard to know if you are making the right decisions but without a crystal ball, we just do the best we can. ;-)

I hope you get the support you so willingly supplied to others.

Take good care of yourself.