Hi Henry!
Exercise certainly does help, especially physical therapy. Sadly, my husband was recently cut off the PT because the insurance company said he was on maintenance now.
We live in the east mountains outside of Albuquerrque, so feel free to write. There is a Parkinson's group in Alb., but they are not listed in the phone book. You might call the City of Albuquerrque or do the .gov thing. This group,PIEN has really helped us. My husband has had PD for eleven years. His condition fluxuates widely from day to day. Thee is a good PD specialist in Alb named Jill Marjama Lyons, who works with Health South and BCMC. Her practice is very small and she is hard to get in to see, but if your Neurologist refers you, she probably will see you. Which insurance group are you with? What specialists were recommended to you? My husband does not talk on the phone, but I would be happy to talk to you any time. We have horses also. Dick is afraid to ride now because of his balance, but we belong to the NM Carriage Association, so we go on drives. We are presently looking for a used micro mini RV like a Toyota Dolphin
so he can go on overnights or long day events and has a place to rest when he gets tired.
This disease certainly takes us for a ride, but one does learn to cope.
Wishing you well.
Elaine, care partner of Dick
--- On Tue, 7/1/08, Pamela Clifton <[log in to unmask]> wrote:
From: Pamela Clifton <[log in to unmask]>
Subject: Re: what does my future hold?
To: [log in to unmask]
Date: Tuesday, July 1, 2008, 8:56 AM
Dear Henry, Hello! Everyone says get as much exercise as you can. In
England you can get a patch for the drugs often prescribed. This patch
was taken off the market by the FDA. It makes a huge improvement, if
you can get it. The Northwest Parkinsons Foundation sends an email
newsletter that is very good. Azilect seems to work well for many, but
everyone is different. Reglan is a disaster, I agree. It has sedative
effects. All the doctors are just experimenting. No one has the
answer. Keep your chin up! Pam
On Jun 30, 2008, at 11:12 AM, Henry Bailey wrote:
> I know we all react differently and no one can diagnose over the
> internet but I don't have much in the way of information sources.
>
> i was diagnosed 2 weeks ago- the doctor took almost 5 minutes to
> tell me I had Parkinsons - give me a script for ropinerole and tell
> me to come back in 2 months.He mentioned I might want to check the
> internet. Being realistic- I was in shock and I may not have
> listened to much else.
>
> I called Park Foundation - they gave me names of 2 experts( movement
> disorder specilists) in New Mexico (I'm south of Albuquerque) One
> dr gave me an appt in 3 months - the other Dr is not taking new
> patients.
>
> So, I've read info from Parkinsons Foundation and subscribed to this
> list.
>
> 2 weeks prior to diagnosis, I started Reglan for gastro paresis.
> Reglan is great UNLESS you have Park. So, during the 2 weeks of
> Reglan, I went from 'functional' (going to work, etc) to barely
able
> to dress myself. Its been 2+ weeks since I have stopped the Reglan -
> but I have not completely recovered from that.
> QUESTION - anyone else have Reglan problems ?? and did stopping the
> Reglan get you back to normal?
>
> I was told the only thing I could now do for gastro paresis was to
> eat smaller meals - more often. I have daily pain. I have greatly
> 'healthied' up my diet - lost 20 lbs.
>
> I am slow and weak - arms are the worst. I'm off work now. The 2+
> weeks of ropinerole improved a bit but its not a huge improvement-
> can't yet think about returning to work.
>
> QUESTION - does heat ,exercise, cold , etc seem to make things
> better?? or worse?
>
> I have no idea how much if any I can expect to restore some of my
> functions. Yesterday, I did ride my horse for the first time in 6
> weeks- that was a huge gift to my spirit.
>
> Any comments or encouragements are appreciated..
>
> Henry
> in sunny Los Lunas
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