Is there a better way to live with PD

[smirknof]

Im a 52 year old diagnosed just 2 years ago with PD. Was wondering if there are anyone out there who were diagnosed around the same age I am and how they have been living with their PD.

[saraoutwest]

Hi there. I’m 52 as well, dx 2 years ago. I don’t have a magic solution unfortunately, but the best thing I’d say is mental attitude. Being positive and being hopeful that very soon better treatments will become available. Until then hang on and do your best! It’s certainly a very challenging disease. I’m definitely progressing with other side of body now being affected. I have tremor mostly but slowness and rigidity becoming more apparent. The worst thing for me though is the jittery extreme nervousness like I’ve had 100 cups of coffee! Just awful. Not on meds yet, but considering. Of course the usual is recommended....excercize, plant based diet, social contact but like I said positivity and hope is what helps the most!

[ruff1 in reply to saraoutwest]

My husband was diagnosed age 49 12 years ago , positive attitude , reduce stress, exercise exercise exercise, eat as healthily as possible, no fad diets , cook from scratch if possible, take Vitamin B1 , and take Parkinson’s medication, no point in delaying taking it , it will help you function, if you cannot function your mood will be low and you won’t be able to exercise/ work . My husband plays golf , runs goes to the gym 5 x’s a week but is on a number of PD drugs without them he wouldn’t be able to do all he does . Hope this makes sense 😀

[Buckholt in reply to ruff1]

Hi ruff1. When did your husband retire, or is he still working? Interested to hear how he might have balanced all that exercise with a full time job. Regards

[ruff1 in reply to Buckholt]

Hi he retired 4 years ago age 58 he was a headteacher of a secondary school in Leicestershire, he worked for 8 years after diagnosis but gave up when he felt he couldn’t do the job as he wanted to . He didn’t do all the exercise while working , he did play a bit of golf at the weekend. When he retired we decided to see retirement as ‘a job’ and his job was to work on getting as healthy as possible. He started with golf then I found a physio led gym only 10 mins from home that held a Parkinsons specific class, he went along but it was a bit too basic for him . The physio who led the group then worked with John to help him develop a program. He joined a Pilates group and HIT and core development. His target was to get back into running ( he was a marathon runner in this 30’s - 2 hours 56 mins his fastest), his upper body strength has improved amazingly which has really helped with running , last September he ran the Leicester half marathon in just under 2 hours he was so pleased. He has to really time eating and exercise around his medication, which he takes every three hours , his Apple Watch is a godsend for alarms ! Thiamine has helped immensely especially at night he did struggle to get out of bed but I very rarely have to help now , his sense of smell has also returned. He started on Safinamide about 4 months ago which has helped to prolong his Stelevo and has meant that he has been able to stop taking the Madapor dispersible which he took 3 times a day, he now just has the Madapor if he eats too much or too close to tablet time . Hope this helps😀

[jenniferdunstan in reply to saraoutwest]

I would urge you to consult with a neurologist specializing in PD. My own neuro says that there is a point at which waiting becomes counterproductive in terms of maximum response and effectiveness to prescribed PD medications such as Sinemet. Previous to finding my current neurologist, I believed I needed to save the best, ie most effective, until later in the disease progression. Not so, according to my PD neurologist.

[Kwinholt]

Hi there. I was diagnosed at 49 and am going on 6 years. Exercise and trying to stay positive is the best. I’m a runner and my disease showed itself with dystonia first. I couldn’t move . I’m on the meds and that brings in other issues as well. I continue to run and stay active because that helps with attitude and nutrition. This disease is awful and at times can be overwhelming but your not alone . Take care and keep moving. Karen

[laglag]

Hi. I was diagnosed at 46, I'm now 61. I agree with almost everything saraoutwest & Kwinholt stated. Positive attitude, exercise, research & I think acceptance is a big part also. Some don't accept it for awhile & lose time in delaying the progression. Twelve years ago I started with RSB rocksteadyboxing.org and it has helped me the most. It's non-contact & it's only for PwP's. Take a look at the website, check out the testimonials and videos. We have a lot of fun but work hard at the same time. My testimonial is under Debbie. There are over 750 affliates all over the world now & a lot of neurologists are recommending it so it must be helping. Good luck in whatever you do, just keep fighting!

[Johnboy46 in reply to laglag]

Hi Debbie, I checked on the rocksteadyboxing.org site ,unfortunately in the UK there are only 3, and I live in London and the nearest is 200 miles away in the Liverpool area where the are 2, the third is in Glasgow , Scotland.

[Healthnut03toNow in reply to laglag]

RSB is enjoyable but expensive at $50 for both the caretaker and patient to take weekly. Wish the caretaker/driver companion could pay less, or 00 dollars as in the dance class for PwP.

[laglag in reply to Healthnut03toNow]

It's $60 a month for both where I go?

[theAfrican]

All of you mention Diet . What kind of diet are you following? I Keto for example? Should we avoid any type of food? Thanks in advance

[ruff1 in reply to theAfrican]

The best diet from my experience is plain old fashioned cooking from scratch! No cutting out food groups , only eat the amount of protein you need for body weight , ( protein interferes with levadopa) drink lots especially with your medication to help it work . I’d say no to Keto diet too much protein . The only one my husband tried was gluten free, didn’t have much effect except on bank balance!

[smirknof in reply to theAfrican]

I’ve gone vegan just to be “safe”. Dropped a huge amount of weight. Does it help? Only time will tell.

[Astra7]

I’m 55 diagnosed at 52. I took azilect straight away as well as NAC. A year later added madapor as there is really no reason not to and I wanted to enjoy life while I could. I also take mannitol, magnesium, a bit of b1 and more recently PEA which an anti inflammatory.

I play tennis 3 to 4 times a week and sometimes take a pill early so I don’t get suddenly tired on court!

I have told very few people, including my kids, but now I wish I’d just told them at the start as the sneaking around is getting to me.

I’ve told one person at tennis and 2 at work. No one has noticed yet.

The main thing is to avoid stress which is crippling to me, and also try not to look too far ahead. Who knows, there may be a cure by then, or the world may have overheated by then anyway! No tennis this weekend as it’s 40C😎!!

So in summary take the meds, keep moving and stay positive!!

Good luck!

[PDGal4 in reply to Astra7]

Astra7

I am like you--have told very few people and am fortunate, almost 7 years after diagnosis, to have symptoms controlled by meds so that no one really notices. I am also slow/stiff, which people don't notice as much as tremor. Lately I've had some dyskinesia that causes me to drop things, like wine glasses (filled) and plates of food, so that now I am hyper focused on holding on to things in social settings. I sort of look at it as a gift sometimes, that my symptoms are hideable until I am ready to be more open about PD. But I do agree, there's a lot of stress in hiding and putting off revealing feels like a small white lie that grows bigger and bigger.

Just wanted you to know you're not alone in this -- and although I did tell my kids, we don't talk about it. They know how I am.

[Healthnut03toNow in reply to Astra7]

You are so blessed to have PD and be able to play tennis, my favorite sport and form of exercise! Quick turns, pivoting, sudden stopping and starting are impossible for me. Have you had that kind of experience? If so, what is the solution.

[M1tz1]

You people are wonderful. Bless you all.

[jeffmayer]

I am 57 diagnosed at51 the main thing is positive mental attitude don't let it grind you down when you say I cant because I have pd that's in my opinion is when its winning

[Raissakagan]

I was diagnosed 10 years ego at 50.

Agree with all above: Exercise daily and trying to stay positive are the most contributing factors.

Retirement at 55 has helped to reduce the stress significantly,

So did meditation and being busy with learning to play piano, ballroom dancing and playing with grandchildren.

So does reading the inspirational books written by people with PD, like "Dumb Bells & Dopamine: A Parkinson's Success Story "

I don't eat sugar and flour and processed food.

Some times for a short while I even forget I have PD which is a miracle in itself.

I aim to enjoy every day knowing it wont get better only worse and every day counts.

We can't control the PD but can influence its progression to some degree and its empowers me to make effort every day apart from just taking medication.

[GymBag]

I am 71 , diagnosed at 53 I think. Lets look at financials . My biggest problem was my hand writing was so small that I could not read my notes when I came back to office from meetings with clients. I told the company what was happening up front and was able to change my responsibilities but I had been with the company over 30 years at that point. Reduced the amount of travel. Brought in voice recognition software and other changes to accommodate disability . By the time I was 60 it was very evident that I was not able to continue working, easily tired, shaking very noticeable, unable to handle stress of any kind, so retired (very glad I did) . I had used that time to make changes at our home and put money away. House paid for , car new, children out on their own , money in the bank ,severance income, company pension and at 65 Canada Old Age Security , looked like it would be enough. Well some was used for 4.5 years to purchase medications since my company drug plan was gone and Govt plan did not kick in until 65. Approximately $14,000 x 4 .5 years for my wife and I adds up to $ 88, 000. The first part of retirement I was able do things such as laying my paving stone drive way and painting the house, building special furniture etc and that has material cost as well but slowly that ability goes away and instead of you blowing the snow off the neighbors drive way , you are paying to have it done . A series of other health problems blind sided me unexpectedly and eyeglasses, hearing aids , stair lifts, scooters, all cost money . The basement is finished and we never use it and students at the university need housing . I am thinking a new wall a couple doors some shiny appliances , an emergency exit and some insulation in the ceiling and I could bring in $400 x 2 per month x 10 months = $8 K per year. MMMMMMMM wish I had thought of that sooner.

Start now, work hard, plan, enjoy yourself, its later than you think.

[JohnPepper]

Hi smirknof. I was 29 when my first Pd symptom appeared. I was 58 when doctors finally diagnosed the Pd. I am now 84 and have been medication-free since 2002. If you want to learn more then look at my website - reverseparkinsons.net and contact me. I will tell you all about it at no cost.

[boundless in reply to JohnPepper]

I read your coments whenever I see them. I would love to do speedwalking but right no w I am lucky if I can walk. I am 88 and have had pd f or almost 3 years. I think it is getting worse. Very rigid and stiff the last week. I try to execise my legs all the time, I don't think it is working. Keep up your speedwalking I thinkit is great. I wish I could do a little. I was always athletic till pd got the worse of me......I am stll trying

Lois.

[Erniediaz1018 in reply to boundless]

God bless, 88 is a great age to own. And you speak like you have a great attitude. Keep it up, it's very encouraging. Thank you.

[boundless in reply to Erniediaz1018]

I did a lot of exercising and I think it helped me ge to that age. I have been healthy most of the years except for back surgery and asthma. I do take the b-1 and I think it gives me more energy.

Thanks for the reply

[JohnPepper in reply to boundless]

Hi Lois. Keep your pecker up. You are very fortunate enough to have got to 88. Well Done! Tell me more about your walking problem. Is it Pd that is causing it or your age? I don't like to discuss personal matters on a forum like this but prefer to do it, one on one, by email. Look at my website - reverseparkinsons.net and contact me on my email and maybe I can help you. It costs nothing and it helps to talk.

[boundless in reply to JohnPepper]

Thanks John, I will reply on your e-mail as soon as I am able,I hope soon.

Lois

[Erniediaz1018]

Try B1, hopefully it will bring some relief for you, it has worked for me as well as many others. Contact Dr C. I'm 50 and noticed slight tremor at 46, had a datscan at 49 which confirmed diagnosis.

[Ozziedog2]

Buena vista. II, howland

[alaynedellow]

I was dx at 53 and decided right I better get retired and live now. I sold my london home left my sons in UK and moved to France. Why not? I have holiday home for my income the wonderful French medical system which treats All my pd treatment for free. I have a dog and live a wonderful simple life, i grow food , where poss eat healthily, exercise, lost 2 stone in weight and am running again. I take Mannitol (essential for apathy) B1 (not dose sorted quite yet) and Azilect. I live for now mostly because who knows what else in store.

My advice- research PD, Accept it, be kind to yourself esp on bad days, relax and go with the flow. I am slow but I'm not beaten and I get there! Life is for living and this is our life- so grab it.

[Oceanflow in reply to alaynedellow]

In some ways I am similar to you alaynedellow. Was teaching when things started unraveling and decided to retire early as soon as I qualified for disability insurance. I also moved away from the city to a more rural-suburban area overlooking the ocean in a beautiful area, which is two hours away. My younger son went off to university in another city, and my older boy left home 5 years ago. Thus, Low stress and lots of time to read, learn a new instrument (good for making those new neural connections)and a new Challenge of trying to meet new people while suffering this on and off weirdness of this awful disease! I also make a point of trying to exercise or stretch and meditate every day. It’s a challenge sometimes with fatigue but I aim to cook healthy food and try to grow my own organic vegetables in the summer.

[Oceanflow]

Oh yes, and forgot to say in my reply to alaynedellow that I consider Google as a good friend- spend at least an hour a day researching our disease. Thank goodness I found this site it is a lifesaver and brings me a lot of hope! My main advice is to stay hopeful that things won’t progress too fast, or even, that a cure may be found. Until then we have to nurture ourselves - excersise, eat healthy and make sure you don’t cut yourself off from others (as is quite usual) and if you start feeling sad or lonely, find your community if you haven’t got one.

[Hidden]

Positive mental attitude is the only way to deal with this curse or a blessing- whichever way you want to look at it!

[smirknof]

Thanks! Appreciate any help as always.