Hope or blind faith

A number of years ago I was diagnosed with COPD , I was worried , as I was then only 42 , I scoured the internet for possible future breakthroughs or cures or simply just disease modifiers ... many clinical studies claimed to be on the cusp of a breakthrough... none , not one have succeeded

I now find myself diagnosed at age 49 with PD , and wonder if this is the same scenario , decades of 'almost ran' therapies that will never find a way to at least halt this devastating illness ... One needs hope in this situation , and I must be honest , I am confused by the multitude of approaches being employed by various pharma to address this disease .. in laymens terms it would appear they havnt really got a clue as to even how/why this disease starts ... on the other hand perhaps we should be encouraged by the different approaches ...

Unlike COPD though , this disease affects the brain , speech , movement ...so I feel ( and I know I wont be the 1st) that I am in a race against time .... I dont want to drivel on about personal stuff , but lets just say I will allow myself to go to a certain point , and no further .. right now I have slight tremor in one hand and occasionally my speech slurs ...its just all very depressing , and I am not like 'that' .... none of us are

I suppose my question is after reading these forums I can see there are some very VERY knowledgeable people on PD ... do you guys think there will ever be a 'halt' type drug ... imo stem cell therapy is a red herring as it just has too much cancer risk , ..synuclein clean up , is a 'partial' hit if they ever suss out how to do it , and would be welcome ....but until they establish the underlying cause of tis disease , how are they going to understand its pathology ... ? I dunno ... maybe I think too much , but everything from anti cancer drugs to diabetes drugs are being muted as possible 'cures' ... seems chaotic to me ... rant over :)

6 Replies

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  • Yeah, barking up the wrong tree.

  • Dear Pezo, whilst agree entirely with you ,you can't change your diagnosis and worrying about a cure isn't going to change it.

    Step one is coming to terms and accepting PD.

    No 2 is taking control.PD is living with you ,you are not living with PD.You call the shots not PD.

    Pills help but they are not the be all.

    Exercise is as good as the medication.

    Mindfulness helps. Live in the moment ,you can't change what's already happened ,we have no crystal ball what will happen in the future, but we can enjoy and make the most of the here and now.

    Live each day as it might be the last, no if only, no I'll do it tomorrow.

    If we sit around waiting for a "cure"we will miss out on life.

    Ps try CBD since using it my smell has come back,my facial masking has gone,my speech has improved, worth a try!

  • Thanks Bazillion , I agree , one positive I have gleaned from my diagnoses is to not worry about 'small stuff' ... I have lets say an affinity with cannabis in general , I normally eat a little cake once a month or so , but now I am putting this to 1-2 per week .... not sure if it helps , but it seems to me the science behind it makes some kind of sense ...

  • There has been lots of evidence coming out lately about the effect of exercise on Pd. You don't have to spend one cent on doing many forms of exercise, Even if it does nothing to slow down the progression of Pd, it will make you fitter and healthier.

    Look at my profile and you will see that I was diagnosed 25 years ago, when I had been going to the gym every day for 1 hour for the previous 24 years. I increased that to 90 minutes a day. Then my condition got even worse, so I stopped the gym after 2 years and in 1994 I started do fast walking. Eight years later I was able to come off my Pd medication and have lived a 'normal' life ever since. I am now 82 years old and continue to do the walking.

    If you are prepared to put in the effort, it is possible to get better.

  • Thanks John , as you rightly point out , overall health and well being seems to be a framework to build on for PD , I am relatively young (49) and fit ... I intend to capitalise on this fact , your story is indeed inspiring

  • If you are interested, I wrote a book about it, which has not been too well received by the medical profession. I understand why this is. There is no cure for Pd and because I no longer look as if I have Pd, although I do still have most of the symptoms, they say that I obviously don't have Pd.

    I do not claim to be cured, I wish I were! But I do now live a 'normal' life. This is because I have learned to use my conscious brain to control many of my movements, which means that I don't shuffle anymore and i can bring food to my mouth without spilling it and I can write in block letters. I still battle to sleep, have constipation, on and off I still have tremors, especially when I am stressed. But my life is no worse than anybody else's at my age.

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