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Welcome Penny. This is a good place for advice and sometimes interesting conversations. It will also prove to be a source that will point you to other sources. Advice that comes only from personal experience and observation particularly with young onset. You were diagnosed about the same time as my wife: 1) Stay physically active. Nothing is truer than "use it or lose it" in this disease. If you are retired or on disability then consider this your new stress free job... stay active and exercise. 2) Study and know every drug they are giving you and what they could possible give you. Know the possible side effects and the interactions. You are the best feedback source to your neuro as to the effectiveness of treatment. You neuro will only see you once in a while. 3) Make sure your husband is up to the same level of understanding about these drugs and this disease as you are. He will prove a valuable resource in providing accurate observational information for the doctors. 4) Beware of snake oil... an unique clinics and treatments that are only offered in other countries because the US is just not advanced or claims the government is in a conspiracy against them. 5) Have fun most of the time, worry about this dammed thing as little as possible. Be concerned and informed but don't let it consume your whole life. Adjust as you go on. 6) Don't be afraid to go on SSD as soon as you can, but work as long as you can. Good luck Frank cg. Teri 52/47/40 15024 ----- Original Message ----- From: "Penny Brown" <[log in to unmask]> To: <[log in to unmask]> Sent: Thursday, April 08, 2004 7:17 PM Subject: Introducting myself > Hi there, > > I'm just joining your list, newly diagnosed with PD in March 2004. I'm > 45 y/o, married for 24 years, 2 cats and a small house in the Pacific > Northwest. I spin my own yarn, knit, weave, putter in my flower garden > & teach fiber arts at the local yarn store. > > I stopped working in November 2001, having problems with my back & right > hip. Terrible "muscle spasms", numbness, jumping leg. Sitting became a > torture. I went from doctor to doctor trying to discover the source of > my problem. I do have HLA-B27 arthritis, so that was always blamed. > But, you don't normally have numbness & a jumping leg from that. I > finally went to my GP & begged him to deal with me until we solved this > puzzle. That was in September 2003. I had a CAT scan, 3 MRI's (hip, > back & the head in January). We tried different meds.... Finally, my > leg was so misbehaven that he was concerned I was having seizures. EEG > was normal.... "OK, does anyone in your family have parkinsons?" > Yep.... Well, we tried sinement & guess what?! I felt better after 3 > doses!!! Hurray. > > I have my first appointment with the neurologist next week & I assume my > meds will be changed then. I'm actually relieved to know what the > problem is. Since I've had 3 family members with this disease, I have a > general idea of what to expect. But they were all diagnosed in their > 60's or 70's.... No one was diagnosed at 45. > > And that's why I am interested in this list. I want more info. I want > to understand (as much as I can) what exactly is happening to me & what > the cause is. I'm looking forward to finding out more. > > Penny Brown > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn