I need some positive feedback. I'm struggling lately. It has been one year since my diagnosis. I'm 55 years old and single woman with two daughters in their 20's. My life should be fun and future bright. I should be dating. My future now looks bleak and terrifying. Who would want to date a person with PD? Will I ever dance again? Will I ever be the fun-loving person I once was? I don't think so. I still work but for how much longer can I? I haven't told many people about my DX. I don't want anyone to look at me differently and with pity. I'm scared!
Can anyone help?: I need some positive... - Cure Parkinson's
Can anyone help?
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taurusgirl64
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I am a 59 year old woman as at 44. Had to take medical disability at 53 due to pd. Had dbs 54 & can no longer drive an stuck at home all day everyday waiting for husband to get home, have 3 sons and they have all moved out and have their own lives. Accidentally overdosed on sleeping pills on July 31st. I was committed for 3 weeks. Out now but this is a horrible disease. It has taken everything from me
Well that is not very upbeat and positive.
Not quite the reply you were looking /hoping for although still very sad. I'm sure that you will get some positive responses very soon .
My husband was diagnosed just 2 days ago although I had suspected for some time and have been reading alot on this site. It looks like it's going to be very helpful.
I do hope it will prove so for you.
Some people are suffering too much to be ‘upbeat and positive’. I know, because I was my mum’s carer. She had PD for 10 years. Ccobroussard deserves our support too.
I am sorry if I scared you with my posts about my mum. She did have the ‘honeymoon’ period for a few years after diagnosis and after being prescribed Sinemet. She was also 73 when diagnosed, so not young onset like you? It is good you have had so much support from other sufferers here. Best wishes.
You need to talk to your neurologist and get an appointment with a psychologist! So helpful to get some support for dealing with this disease! Also, you’ll probably qualify for Medicaid which will pay for physical, speech and occupational therapy ! Often these facilities also have PD groups which hold meetings where they discuss problems and how they’re dealing with them. It’s always good to find a support group. If you have computer access, goggle “Parkinsons support groups” and you should be able to find one near you.
Hard to be positive. A lot of time I feel like this disease has robbed me of everything.
I'm sure that it must be absolutely terrible to be diagnosed at such a young age.
My husband is coming up to 72 and has been very healthy up until this last year. I remind him how lucky he is. I really don't know how he would have coped with an early diagnosis, yet there are people on this forum who appear to be coping admirably.
Hoping you can get some help to put you in a better place.
Best wishes
J
• in reply toJalia
I am 55, diagnosed at 48 and blessed with an amazing family that is absolutely supportive. We don’t cope but we just accept the reality of the lifelong nature of the condition that we can’t get rid off. I think that we are all lucky for having the gift of continued life.
I don’t have any great advice but just wanted to say a kind word and that I understand.
You feelings are valid. Some days we all feel like that!🤗
That is because you have let it take things from you. You may have PD. Don’t let PD have you. Please read my reply to taurusgirl64.
My mum was crippled with Dystonia and severe pain from injuries from falls. She suffered regular Oculogyric Crisis and many other serious complications. Everyone is different with Parkinson’s Disease. I don’t think it is fair or helpful to blame someone for their suffering. You don’t know what further suffering you may be causing with your words.
• in reply toccobroussard
I thought that you would be able to drive with dbs?
Did DBS help some ? I know it doesn’t help everyone
It is difficult - no doubt about it. I came down with PD at 41, am 46 now. Got divorced two years ago. I had brain surgery six months ago and got a good portion of my life back. Two days post surgery I went on a dating sight - figured why not. I was totally transparent - I have PD, I just had brain surgery and am completely bald. Got over 100 responses in 24 hours! And no I am not a natural beauty - about average. Been dating a normie nice guy for six months now who accepts my limitation. I dated another nice guy 6 years my junior who had PD the year before. Shocked me but yes a lot of people are fine dating someone with PD. I still have issues in my right side (only had surgery in my right brain) and things are not always easy but I am back to doing most things normal folks can. Do I have down days ? Hell yes - this disease took me at my prime , but there is a lot of good also !
I was in the rare spot of getting sudden onset - my disease came on over 30 minutes full blown so I never could hide it. Being transparent has helped me a lot. Most people know someone with PD or at least have seen MJFox so they kind of get it.
Omg! Sudden onset is scary! Im sorry that happened to you !!
I’m the same age as you and have 2 almost adult kids. I get a lot of pleasure from playing tennis, and am looking into some sort of dancing. If you can it’s good to get out and about. - who knows what will develop. I think most people at our age probably have issues, so you may find PD is not such a turn off for the right guy. Personally I’m married but it’s just hard work and the thought of being single is pretty appealing!
Also I just take enough meds to get by, never mind the long term consequences. No one really seems to know for sure anyway.
Where do you live?
Thank you for your positive reply. I walk almost every day two miles and the days I don’t walk I ride my Peleton bike. I live in Albany NY.
I am so sorry to read of your distress. I was diagnosed 6 years ago at 65. I'm doing well - pretty much all those who know me well struggle to see any PD effects.
What have I learned?
1. Your neurologist (bless him/her) can only respond to your description of what's happening to you; there are no bio-markers/no lab tests
2. Your neurologist will probably not express interest or confidence in a 'lifestyle' approach to managing your PD
3. Your medication, while important to relieve your motor symptoms, will not do anything for your non-motor symptoms
4. Lifestyle factors had an quick impact - and have a continuing impact - on my non-motor, as well as my motor symptoms
5. Lifestyle factors have little, if any, downside risk, unless you have a other health conditions precluding exercise and weight loss
6. My vote for effective lifestyle must does are 1. regular vigorous exercise (sweating with an elevated heart rate, for 30 minutes, 4 to 5 times per week) 2. A low-meat, high roughage, low sugar, high veg, plenty of water diet. 3. Regular, good sleep (including cat napping if necessary). 4. Reduce/eliminate sources of stress/anxiety (vigorous exercise will help with this).
These lifestyle suggestions might seem tough but if they are going to work for you, my expectation is that you will see a noticeable difference in about 4 to 6 weeks. You seem to already have a good exercise baseline - light a rocket up it and Fxxx PD!
First, diarise your motor and non-motor symptoms for a week or so, then do your lifestyle research to give yourself a daily/weekly plan, then follow your plan faithfully - you are setting out to 'actively' manage your PD.
Do a web search for Dr Michael Mosely for a good, gut-friendly diet (the Mediterranean diet).
Also search for 'exercise and PD' - the recommendations for 'vigorous' exercise and the associated research (some of which suggests the possibility of exercise halting progression of PD)
Your diagnosis is not the end but it might be difficult for you to see through to better days at the moment. Believe me, there are better days.......
Thank you Yachtie this is terrific advice. I am a 58 year old woman diagnosed with PD 3.5 years ago. I do a bootcamp exercise twice a week for an hour with a group of people 10 years my junior. I can keep up most of the time which is my goal. I walk every day up hills and along the beach. Yoga twice a week to stretch out the stiffness. To date I have resisted medication. I still have a wine and get out with friends. My left arm shakes like mad and I have a few of the other symptoms but count myself lucky everyday & practice gratitude. Taurasgirl64 I am positive this is sent to try us so I just try harder. We can do it believe me xx
I was upfront about my Parkinson's in my dating profile and it did not stop me from getting dates. Focus on your virtues - even with Parkinson's there is plenty a person can bring to the table. Being a Bear in my case means having lots of nuts, berries and salmon in the larder and plenty of warm cuddles.
My symptoms started at 48. I'm 58 now and although I struggle at times I am grateful to still be mostly functional. Try not to isolate yourself. You are exercising which is the best thing you can do. I am lucky to be married to a very supportive spouse so can't give dating advice, but Lena and Park Bear seem to be doing well in that arena.
Is your PD tremor dominant? If so did you manage to stabilise the tremors in the past 10 years? With medication?
I am non-tremor dominant.
Do not stop living! Dance in your mind, start dating with just telling you have PD.
Use it as it is a part of you, not a sicknis, try to sport every day, like boksing cycling, sport will give positive signals!
Peter
Hi taurusgirl, The answer depends upon what you are prepared to put into improving your health. This is not a promise that you WILL GET BETTER it is a possibility that you will get better if you are prepared to start doing serious exercise.
I was diagnosed in 1992 at which point I was seriously affected by Pd and had to give up my position as head of a large company employing 1600 people. My late wife and I had built that company up from scratch over the previous 29 years,
In 2002 I was able to stop taking any Pd medication and have lived since then, medication-free and at the age of 85 I am still doing fast walking, but not as fast as I was,
View my website - reverseparkinsons.net and contact me. If I can help you I will and it will not cost you a cent.
Hi
Don’t be frightened and look at it as a challenge life brings with it
Try the B1 treatment won’t harm you but it could benefit you in many ways
Regular exercise is essential
I find it helps that I can talk to people about our challenge so don’t hide it you will stress too much
This forum has helped me share your thoughts we are all together in this mission you are not alone
Be strong
Norman
I was dx’d 9 years ago at 57. On meds, exercise with weights and machines twice a week with a trainer. I did exercise classes for awhile for three additional days but would just get too tired. The main thing I find helpful is to have the attitude, “as much as I can as long as I can (or as fast as I can!)”. I had a retirement payout that allowed me to travel, so a year after dx I started traveling all over - Europe, Africa, Australia, Nepal, China,Canada...many trips, with friends or family. it was challenging physically but I learned a lot about pacing myself and how to accept my limits while pushing to the edge of what I can do. Plus it was cool to see the world.
The first year, no lie, was tough. I did not plan to have an incurable, Progressive, debilitating disease. I certainly mourned my lost future. But through a lot of patience and spiritual courage most of my days are now ok.
I’ve started to slow down and happily stay home more, but I expect still to have more good days than bad. The things I miss the most are having enough energy to do yard work all afternoon, and being able to walk a lot (they don’t tell you that PD can give you aches and pains that really limit some of us.)
I also have struggled with depression, insomnia, and occasional anxiety, all of which were nonexistent before PD. But I take meds for depression and have a whole sleep regimen I stick to. I’ve come to really cherish a good night’s sleep!
I joke that I get so sick of self-care I feel the need to rebel - so I don’t floss that night...
I’m starting to have trouble with my speech at times, which makes me shy about speaking in public - I used to do a lot of public speaking in my work - so that’s frustrating.
I did have a full “couch day” this week - occasionally I just feel like crap and generally unwell- often if I overdo the day before. But meds help, I’ve found a good Neuro at a teaching hospital a couple hours away, and I have supportive friends and family.
Having PD put some things in perspective. I’m still really fortunate because of what I have in my life.
I used to be really private about having PD but have gotten less hesitant to share that info, i suppose because I’m more accepting of it myself.
Give yourself time.
Hi there,
I’m a 48 year old male, was diagnosed with PD when I was 39. I tried to hide it and keep it secret for the first 6 years or so, because I was also scared that people would react with pity - I also hate that. However, I’ve found that since I’ve opened up about it, it’s like a huge burden has been lifted off my shoulders. Most people are sympathetic and helpful and it has surprised me how many truly caring people there are in the world. Talking about it definitely helps!
Hi Taurusgirl,
Firstly, you may well be someone who's disease progresses slowly and responds well to the medication. Some folks adopt an 'it won't define who I am attitude' and that's their way of coping. My opinion is that this can be incorrect as it can lead to denial, which in turn can lead to frustration and a spiral of negative stress. Better is acceptance. I've pd, so what? I can't do what I used to do, so what? We find other stuff to do. I now write poetry (or more accurately shit rhymes haha) and have self-published a number of books. I only visit 2 pd sites, this one because of the high emotional intelligence (empathy) of its members, Pd-folk tend to be unusually kind, caring and lovely folk in general. And 'Laugh with me - Parkinson's' which is a facebook site for pd'ers only, and is just for jokes, gags and fun.
I was dx'd at 44y married 2 kids F.21 M.17, wife had cancer when I'd had it for 5y, she survived but a combination of pd & C has left us financially errr f+++ed!
Now here's the thing Taurusgirl, I'm living! a different life sure, but I'm more true to myself in many ways. I now find pleasure in simple things like the carpet of bluebells every Spring, cooking simple wholesome food, meeting new folk honestly it's endless! Now I'm not trying to feed you 'bull', of course, I'd rather not have pd, but I stick by the +ives I've told you about.
Relationships, if I was well, no pd, and dating, a woman with pd WOULD NOT put me off! In fact, I genuinely get more interest from females, even though I'm married and have pd, than I ever did! I'm a stud-muffin! and do absolutely nothing to encourage it!
You have a future for certain, just a different one to what you imagined. Parkinson's disease can only get in the way of your happiness if you let it! So treat this pathetic little shit with the contempt it deserves! Live in spite of it, and laugh at it at every opportunity!
Be a 'Tiger' Taurusgirl Grrrrr!!
My very best
Nigel
I second yachtie’s advice to improve your diet - especially if you’re on a high carb Standard American Diet. I recommend dietdoctor.com as a wonderful resource. A lot of PWP suffer with depression and many people get good mental health benefits from eating HFLC aka Keto Diet. Exercise and good sleep are also critical requirements to keep the disease at bay. Good Luck! Best regards, Phil2bats
Sounds like you can use some help with depression, which is very real part of PD. Also , yes you will dance again ! There is even studies that show dancing and music are great therapies for PD. It takes a while for you to adjust to this change in life style bit you will. Exercise, eat right and socialize. I even started Rock Steady Boxing. The way I look at this is every one has something they are dealing with! God Bless!
I have felt the same way; I was diagnosed in July but have had symptoms for 2 years- I'm 64 years old and have always been in great shape. I have kept up my exercise routine (I belong to a gym) and am starting Rock Steady Boxing today. I just returned from a 2-week overseas vacation. So you can still enjoy life. I know it's not easy. I, too, sometimes think too much about the future -that it is not the future I envisioned for myself and it scares me - but I am truly trying to live in the present and not worry about what might or might not happen to me. I am lucky that my mild symptoms have not impacted my life and I'm not on any meds. Try to keep doing the things that give meaning to your life.
1. Reading these posts from people who listen (and seeing ones from folks I'm not familiar with) is so therapeutic.
2. If you put into action even half of their recommendations, you'll feel better.
3. Lately I've wanted to go country western dancing, specifically 2-step. My spouse is not likely to join in, so I may need to enlist my kids and their friends- now in their 30's and 40's - , who, since I disclosed my diagnosis 3 years ago, are some of my best cheerleaders. It may be a disaster, but who cares?
4. If you aren't being treated for what may be depression, please consider it. SSRI's have saved my life by allowing me to see things with a different perspective. A counselor whom I see weekly is helping me handle this illness as well as other stressors (retirement, spouse with LBD). Please reach out.
4. My tremor sometimes feels like an old friend, a pest at times, but always there for me! However, as I feel the need to do more in terms of not just complaining about politicians who have exacerbated my stress over the last 3 years, but doing something, it's become a hindrance. Not because people notice it, but it's hard to shuffle papers (voter registration cards, campaign materials) gracefully. Working on that!
Can't be repeated enough, how beneficial exercise is. Any kind of exercise, but particularly boxing classes designed for Parkinsons ( even if you don't fancy the sound of it, give it a go if you can find a local class), and also weights and general gym activities *(again, specifically designed for Parkinsons people is best). Hope you find the future easier than you anticipate.
Dancing is specified to help. My husband with PD refuses to dance. It's the big gross motor movements that are so useful. Go and sign yourself up at a ballroom dance place and go for it or jazzercise or rumba or bhangra ( I quite fancy that one)! Look up John Pepper ( contributes here) he tamed his symptoms by fast walking. Look him up. There is a cure we just dont know what it is yet. Dont give up. There is real beauty in life inspite of these challenges. I send a 13 second therapeutic hug in your direction.
Just the other day there was a clip on the news about the benefits of Irish dancing for PD people. Maybe it’s extra good as you don’t need the arms!!
I could drive till Jan of 19. Just too bad
Hi
Im a 63 year old single lady with two grown sons - same thing - I was Diagnosed a year ago - everyday I struggle to look normal at work but I sure don’t feel normal I feel the disease progressing. Everyday I’m scared to think about tomorrow- I too had hoped to date and meet someone eventually
- I don’t have dreams anymore since they were all shattered with this diagnosis- I had even planned to move to Australia for a few years - my son lives there and two grandchildren but I can’t travel - I wouldn’t get health insurance. I wish I could say something that would help you feel better. I guess the only thing I can say is live each day to the fullest -
The one good thing I did that makes me smile everyday is I bought a puppy. It’s hard work to raise a puppy but it keeps me from focusing on the bad stuff . She’s got a beautiful loving spirit and she’s very good for me in all ways.
Elaine
I’m happy to see you’ve received some positive responses.
I’m 45 and was diagnosed at 43. At that time, I had a 7-yr old daughter (she’s 9 now), a promising career, parents who I planned to care for someday, dreams of many hiking trips, and a great marriage.
The first year was hard. I cried because i no longer knew who I was or who I would become. Who was I if not the promising tech leader at work? If I was not the loving daughter who can take care of her parents? If I wasn’t the hot wife who could enjoy time alone with my husband?
I was noticing all that was wrong me. My public speaking was off. I shuffled along miserably on a family trip in California. I slept. I drank too much.
Then, I don’t know when or how, I felt like the sun came out. It surely happened during spring-time. My head became clearer. I watched videos that made me laugh. I went to lunch with friends, and I laughed. A little positive spark created a virtuous cycle. Diet, vitamins, exercise, mind utilization— it all became easier.
I actually got promoted at work. I don’t know how long I can sustain it, but it’s a gift for now. I told a few trusted people about my situation. Their reaction surprised me. They were both supportive but, at the same time, didn’t really care. No pity. But it relieved a burden for me.
As someone said above, it really is a gift to be given the perspective to make a change and to notice that life is a joy. For me, it’s important to find those little laughs that can lighten your spirit.
But I’m a Gemini girl. We like our laughs and fun. Given your moniker, Taurusgirl, maybe you would enjoy strengthening your existing friendships or building new ones (in addition to dating). Dance away!
PD is not only a neurological disease but a psychological one. Three years ago I went through the same issues like you. This was for about an year when I decided just to accept the situation and stop being scared. I regained my sense of humor and educated myself to just ignore stressful people and not to worry about anything.
I must recognize B1-HDT made a huge difference for me. I also take 2-3 100/25 c/l a day even my doctor prescribed 6. Some days just forget about c/l or take only one. The single symptom after three years is a mild tremor in my RH. At my work place no one knows.
So B1 and minimum or no stress helped me a lot. I used to do exercising but during last year a got a little lazy. Accept the situation and try to be like before.
The dating for the ladies should be easier than for the guys.
I was diagnosed at the same age, I will be 58 in a couple of months. I was engaged to be married when I found out and my husband still wanted to get married despite the diagnosis I struggle like you but on a positive note everyone’s PD journey is different and unique and just like anything else in life, the more positive you are the more likely you are to attract someone into your life. Choose to believe that you are one of those people who will have mild symptoms for many years as my neurologist told me on my very first appointment. 😁
I was diagnosed at 57 over 6 years ago at that time had gone through a breakup and was dating again. I met my girlfriend and after a few weeks I told her I had PD and asked her to look into it and decide if she'd keep dating me. She decided to and we've been together ever since. I'm still doing well and she can see my condition slowly progressing and she accepts it and supports me. I believe there's someone out there for everyone so try and stay positive and live every day the best way possible. Hope this helps !
• in reply toPhusson
No progression when you follow Dr.Costantini's free advice. Symptom relief is a major benefit that will last a lifetime.
Google costantini neurologist Parkinson's
Hi Taur
Attitude , frame of mind ,determination all are very important in handling PD. I was 54 when diagnosed and I am now 71. Yes it progressed and got worse but there are many things that you can do to make life easier . Maybe read some of my posts on preparing and exercise and the fact that happiness is a state of mind. There is much that you need to do. Come to grips with it, analyze it, plan and do what you can, start exercise routines that are formidable. Feeling sorry for your self, is just wasting valuable time that you could be out doing things and getting ready.
Happiness , like I said is a state of mind, find what you like. I know some truly happy people , some have problems that make PD look like child's play. Some have no money. Others ,the same age as me but healthy, have not retired and are driving them selves 100 miles to works and 100 miles home every day and guess which are happy.
Make the best of what you got , take art lessons , music lessons, bake something. go help at the church the list is endless . Its time to start a new life, different goals , different plans and different ways of being happy.
You can do it , now move it , it is later than you think.
Oh 1 more thing . People like being around people who are enjoying life and are happy. Tell your friends what is happening but do not dwell on it , find other topics of conversation. Good luck
Be happy.
hi hopefully you will find a date. are you a grandma?
No ... why?
i am a grandpa and it is neat!
Hi taurusgirl, have you tried ourtime.com? It is a dating/matchmaking site for the above 50s age group. I am not sure if there are any sites exclusively for Parkinson’s people.
The linked articles below are very good reads: I just did a google search.
davisphinneyfoundation.org/...
briangrant.org/5-tips-for-s...
michaeljfox.org/news/my-adv...
perkyparkie.com/2017/09/dat...
m.huffpost.com/us/entry/977...
taurusgirl64• in reply to
Thank you so much for the linked articles. I enjoyed reading them.
• in reply totaurusgirl64
You are most welcome. In fact, your question gave me an idea. Why not create an exclusive dating app for Parkinson’s people? I saw some apps that cater to “disabled” people, but that seems crass in a way. Yes, we are disabled, but does it have to do presented that way? I am thinking...
I’m 54 years old and was diagnosed at 45. My quality of life was diminishing. In July I underwent DBS at UCSF and got my life back! I have at least 85% of my movement back and I’m hiking, dancing and doing yoga. Please see if DBS is right for you. I’m thrilled, to say the least!
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