Is there anything you wish you’d known as a new PD patient?

[Lee Ritsick]

To the contrary of most, I wish I  had not been diagnosed until it effected my lifestyle.  So far it hasn’t but the worry about long term changes haunt me.  Also the first neurologist I saw put me on meds right away.  I now find that wasn’t necessary but once on, I know I cannot go off.  I have tried but the tremors get worse.

I exercise regularly, and enjoy my life in the ‘now.’  I hope my symptoms stay at bay. It’s been almost two years since I was diagnosed.

[Hawk]

Lee, I understand what you’re saying about the meds. My doctor gave me a prescription the first time she diagnosed me. I didn’t take it for a year and a half. I didn’t because of concerns about side effects, but now I also realize people’s courses of the disease are so different that there is no reason to assume that everybody needs the same thing (medication) when they are first diagnosed.

[francisco manuel goncalves]

Fui diagnosticado com  doença de parkinsson há 8 anos.Nos primeiros tempos 1 ano ou 2 anos, não tomei a medicação conforme indicado pelo médico.Actualmente estou a tomar a medicacão conforme a prescrição. ou seja Levodopa + Benserazida 200mg + 50mg ás seguintes horas 07. 11. 14.17.20. A toma das 07 é em jejum, as seguintes 30 minutos antes das refeições. Tomo também Ropinirol 8 mg aõ pequeno almco, por norma ás 08.Além destes tomo 1 safinamida 50 mg aõ pequeno almoço.A restante medicação é relativa á cirurgia cardiotoracica a que fui submetido há 1 ano.Muito recentemente  2 meses. passei a ir a wc 2 ou mais vezes por noite, o que nunca anteriormente aconteciia.Não sei se é da doença parkinsson ou de problemas com a prostata. Neste momento é a minha principal preocupação-Gostava de saber, os procedimentos em casos como o meu.

 

 

 

 

 

[Thomas Rutschman]

Yo tomo los mismos medicamentos que usted. Levodopa y Repinerol. Pero lo que a mi me ha dado más resultado es Mannitol, un azucar. Uso una cucharada al día. Parece que tiene efecto sobre las placas enrolladas que tenemos en el cerebro a causa del Parkinsons.
Buena suerte!

[Ive]

Gracias
Bebí una caja de manitol pero no vi ningún efecto. Seguiré bebiendo.
Hola Ivan

[James Mortimer]

Anyone unfortunate enough to starting with PD now won’t have the excruciating difficulties we had when Jen was diagnosed last November, no GP or PD nurse availability or guidance under the  lockdowns. We effectively had to find what, or if, treatment might be effective to counter severe back pains, be it heated waistcoats, vibrating rollers, pads fixed to arms/legs to pass currents, normally used on horses, adjustable curvature adjusters, ENDS transmissions, again via pads, etc etc. all of which we bought. Of these, only the ENDS machine has been affective in reducing back pain significantly, possibly because osteporosis has just been diagnosed and it seems to help that.

I discovered long ago that the secret of success in many things is doing something again where you can put the knowledge learned before to good use, and the answer to your questioner is how nice it would have been to be able to learn from others the ways to benefit from their experiences.

[Corrie Trattner]

Unfortunately, none of us have a crystal ball to know what will or won’t happen when we are first diagnosed.  When my husband, who has now passed 5 and 1/2 years after getting his diagnosis, was first exhibiting symptoms that were drastically affecting his life, we went through several doctors who didn’t believe anything was wrong as they looked at his walking for 2 seconds and said he was fine.  ]

Since my husband also had Bipolar Disease and was on Bipolar meds for decades, I do believe that was a major contributing cause to his developing Parkinson’s.  Unfortunately, I have only found 1-2 articles that suggest that could be the case.  It would have been very helpful to get the right diagnosis right away, as we certainly didn’t.  Then it would have been helpful had the doctors put him on an exercise regieme, so that we would have had something more specific to follow as opposed to trial and error.  As much as it’s important to become aware of what may be coming down the pike as the disease progresses, it’s also important to know what to do now and at each stage as the furture stages occur.

If there are others out there interested in getting more help, especially emotional support for caregivers, I’m all ears.

Thanks

Corrie

[Ive]

I have a strong tremolo in my legs and I can’t walk. I have been taking MADOPAR 125 mg and MIRAPEXIN 1.05 mg for about 2 years. I started applying NEUPRO-ROTIGOTIN 2 mg / 24h patches. Does anyone have experience with these patches?