Staying positive

[taurusgirl64]

How does anyone stay positive living with PD? It seems that most of the stuff I read is so depressing. It terrifies me. I'm a single mother to two daughters in their early 20's and I do not want them to be burdened with my illness. They still do not know of my diagnosis.

[GBAMIGOD]

@taurusgirl64. It is really tough living with PD.But you have to understand that there are people with diseases much worse than PD.Terminal diseases like cancer,or more debilitating one like ALS withing months.The stories are scary and if you are newly diagnosed,it will take some time for you to adjust to a new life with PD.The life,nobody expect to live.Your daughters are grown,and I am sure they will understand,by the time you disclose your situation to them.I pray they wouldn't see it as a burden,but show some love and care which you deserve as a mother.Hope for a cure,they say is on the horizon.Just keep exercising regularly,becuase it has be proven exercise slows down the progression of the diease.

[taurusgirl64 in reply to GBAMIGOD]

Thank you. I keep telling myself it could be worse but I'm having a hard time convincing myself. I'm trying to stay positive.

[Johnboy46 in reply to GBAMIGOD]

Excellently put. I was diagnosed 2 years ago (how time flies when you're having fun.....), and have friends who have passed away in that time from cancer,also another who has Dementia that has progressed very quickly in that two years. So do i wish I didn't have PD, you bet you a**e I do, but would I swop it for one of the other diseases, NO WAY. One thing I will add to taurusgirl64, tell your family and friends. I tell everyone I have PD, the shakes in my arm are a bit of a giveaway, but at least they don't think I'm drunk. And Good luck to everyone with PD.

[JAS9]

This is a great question, and one I'm sure that we all often ask ourselves. First, I just want to say that there are PWP who have a very rapid and severe progression. For them, I can only pray and hope that a cure comes quickly enough.

But for many others, Parkinson's can be slowed through exercise and possibly diet and supplements. I've found that if I try things that make sense, keep the things that help, & stop doing the things that don't, I can stay one step ahead of PD.

It all builds on what I've done before. A year ago, I was in a bad place; depressed, with very low energy, many physical symptoms including falling. Today, I'm walking 3 miles a day, but I didn't get there overnight. First I cleaned up my diet (went with WFPB). That gave me some energy, and I pushed myself to get out and walk as much as I could, even if it was just a few yards at the time. Then I tried HDT and that seemed to help a little too. So I walked more. Now I have hope that I can stay active for a few more years, which means that I might still be around when they do find a cure.

People in our lives will accept our limitations, but you may need to educate them a bit. My son thought that PD was just a little shaking and no big deal. Then he got online and read about it. Now he understands and is very supportive. He helps with difficult jobs around the house and comes to visit more often. My wife didn't quite "get it" for a few years, but has seen me at my worst and now understands my limitations. In a way, it's brought us all closer as a family.

[taurusgirl64 in reply to JAS9]

Thank you for a more positive approach. What is WFPB diet and HDT?

[jimcaster in reply to taurusgirl64]

HDT is high dose thiamine. If you haven't already done so, use the search function and search for posts regarding thiamine, B1, Dr. Costantini, etc. Easilly has several extremely informative posts regarding it...

[JAS9 in reply to taurusgirl64]

WFPB = Whole Foods, Plant-Based

Whole Foods = no processed foods; only "real" food that still has all of its fiber and nutritional value. Minor processing such as baking is ok, but juicing removes fiber (for example). No refined sugar or added concentrated oils.

Plant-Based = no animal-derived foods, including meat, chicken, fish, dairy, and eggs.

To learn more about the many benefits of this diet, click on my picture to see my profile.

[park_bear]

I was diagnosed a bit over four years ago. I have had a pretty good life. That said, the last two years have been the best ever.

Parkinson's is a call to get healthy with your diet, exercise, and spiritual life (if that is of interest).

By all means try HDT - high dose thiamine. It is helping me and many others.

Do not keep your diagnosis a secret from your family. I just tell everybody - it makes life a lot easier - you do not have to feel embarrassed if your tremors or motor impairments show.

Qigong has been very helpful for me, although I recognize it is not for everybody. My story here: healthunlocked.com/parkinso...

[ElliotGreen]

I think it can be important to honor the unpleasant feelings sometimes. The fear, the grief, the anger, the concern. But practice mindfulness, meditation, and kindness to yourself. If you turn towards the feelings in your body, you can find a greater power in being present and (if you like) being spiritually and emotionally alive.

One of my big lessons from Parkinson's disease is this:

Early on, in my first year of diagnosis, I remember looking at my impaired hand and arm with grief and frustration and fear. My heart was sinking. I was upset and afraid.

But I looked at my arm, and I embraced the moment. I felt the feelings, and they weren't so bad once I allowed them to exist. I learned that by allowing my grief, I wasn't controlled by it, and I could get on with my day. I could be alive again.

In some ways, this is a daily practice for me.

[enjoysalud in reply to ElliotGreen]

I lost my son, 55 years old, May 2017, not to PD but to PSP. I was his caretaker.

I have found like you, confronting, rather than running/turning away or denying, has helped me a great deal in my healing.

[Limpmaster]

Try to stay focused on what you can do not what you can't. Believe that through medication, diet, and exercise you can get better. It may take a while and there may be a few bumps, but you can better. By "better" I'm not suggesting that you can "cure" yourself but rather you can vastly improve your symptoms. Accept that you will have some limitations, however don't give in either....you are probably more capable than you think.

[Juliegrace]

I agree with every comment above.

[Astra7]

Once you get the right combination of meds and supplements you can feel pretty good. As everyone says just be grateful it’s not a worse diagnosis.

I try not to read much about what the future holds - we are all different and it may never happen.

I also havnt told my teenage kids but I wish now I had told them at the start. There is never a good time!

[Johnboy46 in reply to Astra7]

Hi Astra, I told my family the day I was diagnosed two years ago. My wife first, big shock for her as I have never been ill in 45 years of marriage. Then phoned my kids (age 43 and 35) .(We have a warped sense of humour), so ,my son's reply was, "I think you're taking the Billy Connolly impression too far", ( I have long grey hair and beard) and my daughter's was, "Well you won't have to buy an electric toothbrush". That was it , all the family and friends now know and I haven't got the stress of trying to hide it. My advice is tell everyone, relieve the stress.

[Eliza-Jane]

I completely fell apart when I was diagnosed about 3 years ago. Give yourself some time to grieve and belt up a cushion and sob into it, yell at it, then you have to get on with your life. Tell your girls, I held off telling mine for a while but you are probably holding back because you know it will cause them pain. No time is a good time, just do it. I am on the B1 (Thiamine) track, it does help. I am on minimum medication and intend to keep it that way. I walk 6kms in an hour 4 times a week with friends, exercise class once a week. I bought an old secondhand dolls house a year ago and I still haven't found the time to start renovating it. The thought of that makes me happy. The more active I am the less symptoms I have. I have been looking on Google about walking and acting with intent. It works. Be deliberate in your actions.

You have 2 daughters and have probably had a pretty good life until this hiccup. If you feel down think of the kids with illnesses that won't get to have what you have had. Stay on this wonderful forum, vent when you need to. We will always here for you.

[Motherfather]

hi taurusgirl well im 72 have had pd for about 6 years give or take a bit i work out 7 days a week about ninty mins every day i have went from 80 kg to 73 kg now by changing my diet i do my walks first then do other things like push ups etc etc my body is looking good from all the exercising im doing some time i dont want to do it but i know if i go that way ill be in trouble some days are good some days are bad with the pain but i never give up i keep saying to myself i can do it dont give up, my 3 daughters have been great with me so tell your family they will understand, we had a walk here in perth called a walk for parkinsons all my daughters went with me also my grand kids my ex wife and her husband as well. we collected a lot of money for parkinsons that day so i believe it wont be long before theres a cure,so put a smile on your face and tell every one you have parkinsons i know i do.regards john.

[jeffmayer]

you are very young which is terrible but what is the option you have to fight this horrible condition my son is now 13 I have been diagnosed 6 years and he has been brilliant sometimes even my interpreter I feel they have to know but it does depend on their age whether they fully understand the condition definitely better they know their are worse conditions cancer mnd etc just keep fighting regular exercise is a massive help

[nanster]

I decided to live with Parkinson's not let the condition dictate to me what life will be like. SO far, with a positive spin on life it has been successful I look at what I can do and enjoy that rather than look at what may happen in the future

[JohnPepper]

Hi taurusgirl. If you look at my website - reverseparkinsons.net you cannot possibly find anything more positive. No! It does not offer a cure, but what it offers is the possibility of being able to live a 'normal' life again, as I have for the past 17 years. I am now 84 and it has cost me NOTHING to do what I do.

If you have two daughters, they are usually more understanding of Pd, especially if there is a possibility of getting better.

Why do I say 'possibility? Why don't I say, "You WILL get better?" The answer is in your hands. If you are prepared to put in the effort you CAN get better, as I have. I am no different to anybody else. Yes, there are different types of Pd but maybe you have the type that can get better. What have you got to lose?

Contact me and I will help you, free of charge, no strings attached. Your daughters deserve it!

[taurusgirl64 in reply to JohnPepper]

Thank you! I will def. check out your website. How do I get in touch with you?

[JohnPepper in reply to taurusgirl64]

Hi taurusgirl Google reverseparkinsons.net and click on 'Contact us'

[hercules957]

Allow yourself to go through the grieving process. The last stage is acceptance. But I went one step further than that and went to unconditional acceptance. Then you can be grateful for the nice things in your life. Focusing on the positive helps. Proper medication, a positive mindset and exercise are the foundation of my coping strategy. Also we know that stress exacerbates the symptoms, so I have taken positive steps to avoid stressful conditions.

[Enidah]

What a bunch of wonderful advice and support! I also have two daughters, middle aged now-yikes, when did that happen?! When you tell them they may be relieved, as our children tend to be aware when there is something going on with us and they may be worried about you without knowing why. Good luck! A burden shared…

[MarionP]

I would suggest you treat your daughters like the adults they are, and give them the respect they deserve. Then they can be supportive in the way that they, as grownups, would wish to do. Unless you have little respect for them, which then might also imply you feel guilty about not raising them right. Every little bit helps. Let them know. Worthwhile daughters would expect nothing less. Really.