I have pd and I go to a website daily strength.com which has not only a pd discussion site but a general discussion site for Caregivers which I found very helpful because I am a caregiver to my mother who has vascular dementia. Also the NPF has the most awesome caregiver discussion and help. Good luck. Also local hospice organizations have caregiver discussion groups which are very helpful - even though you hubby is not at that stage you get a lot of good tips on taking care of yourself. I know I forget my own meds and forget to make my own drs. appointments when my mother comes first all of the time. It is like the stewardess talk at the beginning of the flight - I have to put my oxygen mask on first and then put it on the person that is depending on me.View Thread
I was able to buy it through my job. My job offers long term insurance (fully paid for by employee) and each year in January they have open enrollment no questions asked. I was able to get it that way. All the information I found prior to that was that because of my PD I would (1) be denied and (2) if I could get LTC it would be so expensive and a total ripoff.
Good luck. Another option is to have enough assets to pay for my first two years at the nursing home I choose and once my assets are depleted the nursing home will put me on medicaid. I have to make sure and discuss this with the nursing home prior to my placing myself there. LOL or my kids. I mean I don't want to go to a nursing home that kicks me out once my income is depleted.
People are always saying to me - don't worry about that - you don't how you will be when you get that old, I'll probably die with PD not of PD. I just tell my kids - I'm trying to worry about it now so you don't have to worry about it later.View Thread
Yes, it is very normal. I take meds and that helps and now it only happens when my meds are wearing off. Good luck to you and welcome to the parkie world. I try to be grateful that we have a disease that gives us time and the ability to make decisions of what will help and what will not help. Most people with diseases do not have those most important elements.View Thread
I do not know if it is swelling and fluid retention or that I just have been eating too much but I have expanded since starting on my pd meds about 3-1/2 years ago. I take azilect, sinement and neuro patch.View Thread
I have pd and I have pain from rigidity. It is in my neck, top of arm and feet and my hip (on and off) all on my left side which is the pd side. The meds usually relieves the pain and if I forget to take a pill that is one of the first symptom that comes back until I take my meds.View Thread
I don't know if you are on meds or not. Until I went on the meds I had inside shakes and sometimes when I have an off period from the meds I still get inside shakes. Its not your nerves it is the PD. Ask the Mayo dr.View Thread
I posted that 4 years ago. Wow, I started with Azilect once a day which relieved most of my symptoms right away for about 6 months then they started coming back and I had problem with balance. After that dr. added generic sinemet working up to 3 pills a day and I am now at 6 pills a day and I am also on a 2mg Nupro patch. So that is 1 mg of Azilect, 2 mg. Neupro and 6 tabs of 25/100 levadopa.a day (taking it every 3 hours from 6:00 am to 9:00 pm). I work in a very stressful job that involves typing constantly and a 3 hour round trip commute a day and this seems to be working for me. I am lucky I do not have to take anything else because the meds not only relieve the physical symptoms of PD but also the cognitive. Exercise also is very important. I would not have been able to continue to live my life if I did not take the meds. I would not have been able to continue to work. But the most important thing was that I had started having a lot of pain from the rigidity and the meds removed the pain.
Since you used my post of 4 years ago, I will tell you from my experience that the meds have worked in my life. The best thing I did was read a lot, share in different support groups, and Dr. Stacy helped me a lot. Good luck to you.View Thread
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