so I was told I have Parkinson's disease last fall
February 29, 2024 5:01 PM Subscribe
What should I expect? I know I have another neruological problems with my legs. And yes, I know there is no cure. And yes, I am old. /shrug
My mother was diagnosed with Parkinson's over twenty years ago. It was very overwhelming when she got the diagnosis, but she refused to let it get her down, and is still doing pretty well. I'm not an medical professional or anything, the following is just based on seeing how she has dealt with things over the years.
She has a lot of challenges due to the condition, and it has affected her life in many ways, but she has also done some amazing things and made some great friends because of it. She is in her 70s now and has slowed down a bit, but she is still active and happy and able to enjoy a pretty normal life most of the time, with the support of my father, and her friends and family.
There are a wide range of symptoms associated with Parkinson's and these also change over time. My mother finds that her worst symptoms manifest as immobility, but many people find that they get the classic tremors, and there is variation across a whole range of types, it affects everyone differently. Medication helps, but doesn't fix things completely, and the best case scenario generally seems to be about achieving a balance over time.
PD is a progressive condition, and how you approach it can make a big difference to how it develops. This may be difficult as you have another condition affecting your legs, but as a rule those who remain active tend to see a much slower progression and remain healthy for longer, so if you can maintain a level of exercise this will almost certainly make a big difference. My mother still takes walks at least once a day, often climbing fairly sizeable hills for someone her age, and up until a couple of years ago she was doing long multiple day treks with friends and all sorts. She sincerely believes that staying active has made a huge difference.
You can expect to take a range of different medications to help manage symptoms, and working out what you need and how to combine dosages and timings can be difficult, and will have to vary as things develop and your requirements change. The side effects of some of the medications can be a bit unpleasant, and they can also be affected by things like diet, so you may need to make adjustments to what you eat. Don't assume that the newest and fanciest branded drugs are always going to be the best for you at any given time, many tried and tested generic treatments work well for different people at different stages. You will need to work with your doctors, and will probably need to challenge them occasionally, advocate for yourself to get a medication routine that you can live with.
There are mutual support groups for people with Parkinson's, these can often be a very good source of information and advice, and I know my mum gets a lot out of helping others via her local group. Hers is primarily face-to-face I think, but I am sure there must be online groups also. We are in the UK, so I can't offer any advice on organisations local to you, hopefully other posters will be able to help on that.
There are often various drugs trials for new treatments, and they obviously need to attract Parkinson's patients to test things, my mother has been on some of these. They have not helped, and did in at least one case make her quite ill. She knows there are no miracle cures, and I think took part out of a desire to help, but quality of life is important too, so unless you feel the same I would probably advise avoiding clinical trials.
I am sorry that you have received this diagnosis, it is an incredibly hard thing to face. I hope you are able to find the support and strength that you need.
posted by tomsk at 3:09 AM on March 1 [6 favorites]
She has a lot of challenges due to the condition, and it has affected her life in many ways, but she has also done some amazing things and made some great friends because of it. She is in her 70s now and has slowed down a bit, but she is still active and happy and able to enjoy a pretty normal life most of the time, with the support of my father, and her friends and family.
There are a wide range of symptoms associated with Parkinson's and these also change over time. My mother finds that her worst symptoms manifest as immobility, but many people find that they get the classic tremors, and there is variation across a whole range of types, it affects everyone differently. Medication helps, but doesn't fix things completely, and the best case scenario generally seems to be about achieving a balance over time.
PD is a progressive condition, and how you approach it can make a big difference to how it develops. This may be difficult as you have another condition affecting your legs, but as a rule those who remain active tend to see a much slower progression and remain healthy for longer, so if you can maintain a level of exercise this will almost certainly make a big difference. My mother still takes walks at least once a day, often climbing fairly sizeable hills for someone her age, and up until a couple of years ago she was doing long multiple day treks with friends and all sorts. She sincerely believes that staying active has made a huge difference.
You can expect to take a range of different medications to help manage symptoms, and working out what you need and how to combine dosages and timings can be difficult, and will have to vary as things develop and your requirements change. The side effects of some of the medications can be a bit unpleasant, and they can also be affected by things like diet, so you may need to make adjustments to what you eat. Don't assume that the newest and fanciest branded drugs are always going to be the best for you at any given time, many tried and tested generic treatments work well for different people at different stages. You will need to work with your doctors, and will probably need to challenge them occasionally, advocate for yourself to get a medication routine that you can live with.
There are mutual support groups for people with Parkinson's, these can often be a very good source of information and advice, and I know my mum gets a lot out of helping others via her local group. Hers is primarily face-to-face I think, but I am sure there must be online groups also. We are in the UK, so I can't offer any advice on organisations local to you, hopefully other posters will be able to help on that.
There are often various drugs trials for new treatments, and they obviously need to attract Parkinson's patients to test things, my mother has been on some of these. They have not helped, and did in at least one case make her quite ill. She knows there are no miracle cures, and I think took part out of a desire to help, but quality of life is important too, so unless you feel the same I would probably advise avoiding clinical trials.
I am sorry that you have received this diagnosis, it is an incredibly hard thing to face. I hope you are able to find the support and strength that you need.
posted by tomsk at 3:09 AM on March 1 [6 favorites]
I’m 54 and was diagnosed with early onset PD last year. My mom had it too, starting in her 60s through her death at 85 last yr. I have found daily exercise walking, jogging or elliptical), PT, OT and medication (carbidopa levodopa) to all be very important parts of feeling pretty good currently. I’ve lost most handwriting ability and my arms get very achey with any work, but I’ve managed to figure out various compensations. I am working as a HS science teacher. I also feel lucky to have a therapist to complain to.
posted by chr1sb0y at 6:31 AM on March 1 [1 favorite]
posted by chr1sb0y at 6:31 AM on March 1 [1 favorite]
I don't have Parkinson's but I do have a related condition, also treated with levodopa-carbidopa. One thing I wish someone had told me is not to eat protein or iron rich foods an hour before taking the medication. Apparently the body can absorb iron and protein or the medication, but not all of them at the same time.
posted by peppermind at 3:13 PM on March 1
posted by peppermind at 3:13 PM on March 1
good info above.
It's a slow and then sometimes fast progression. The more you keep moving the better.
Look into rocksteady boxing classes. Bicycling is good, if tremors get to be too much, try a recumbent bike.
Tai chi as well.
Do a bunch of pro/con research before you think about implant surgery.
posted by couchdive at 4:49 PM on March 1
It's a slow and then sometimes fast progression. The more you keep moving the better.
Look into rocksteady boxing classes. Bicycling is good, if tremors get to be too much, try a recumbent bike.
Tai chi as well.
Do a bunch of pro/con research before you think about implant surgery.
posted by couchdive at 4:49 PM on March 1
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Separately, there is a gene study going on about Parkinson’s now. For more details see https://www.parkinson.org/advancing-research/our-research/pdgeneration . Evidently about 1/8th of study participants do show some genetic link to their Parkinson’s; for some of those patients, this can mean access to clinic trials.
There’s more to know, but we’d probably need a more specific question to help (eg, do you want to know more about the experiences people have with various assistive devices, or drug therapies, or other therapeutic options)— and of course many questions are best asked of your physician team.
posted by nat at 9:57 PM on February 29 [2 favorites]