Dealing with Disappointment(s)

[Ozie]

It seems disappointment is common for pwp. A positive attitude is important of course but how do people deal with disappointment when they find a new symptom or an existing symptom goes worse, or just feeling unwell? Sometimes you can do everything - exercise, be positive, laugh, eat well and there it goes, you go worse! It is only natural to feel down.

[enjoysalud]

I'm a 76 year old caretaker/mom of a 54 year old with PD. DX with a Datscan August, 2015, and prior by a Neurologist on Jan, 2015. My son is just recovering from a serious bout of pneumonia. When newly DX he started off at about a 162 pounds. As time goes by he loses weight, never puts it back on. He currently weighs 135 pounds, 5'10 inches. He lost 5 pounds with this latest challenge of pneumonia.

I agree with your observation on DISAPPOINTMENT. Things happen that one has NO CONTROL. Some are fortunate to get a PD that mostly cooperates, but others not. Yet, with time one adjusts and accepts, and once again invites "hope".

I think I often feel more "sadness" than disappointment.

As my son improves I adjust to evidence of his decline and yet look forward to him getting back to acupuncture, exercise, and walking without assistance. Those are my hopes. Let's see what 2017 brings.

It is what it is. After acknowledging one's wounds, licking them, there is only one choice, pick yourself up and get back into doing the best one can.

[kommandokate]

Please keep the Faith! I just take it One Day at a Time. I'm grateful when I have a good night's sleep!!! And congratulate myself when I exercise. Yes I treat myself with 4oz of red wine after I complete my daily 5 miles on my recumbent bike. Plus I keep track to motivate myself. Yes Parky is a challenge. Of course I have pity parties too as I'm 68 and have no spouse. But God is good and He provides.😀

[laglag in reply to kommandokate]

I agree! And lots of self talk.

[Bailey_Texas]

After almost 11 years of meds some of which where worst than the PD i am better now than 10 years ago. I have went through sex and gambling addition side effects that have put me in the er 3 times. It took a new doctor and new meds to turn me around. But it was mostly myself that made it happen. I read about exercise helping PWP but it was mostly about boxing. I tried it but found it lacking for all around fitness. My son was doing Crossfit and I decided to give it a try. This was also about the time i changed doctors. At this point I was still working but barely getting by. I was home bound other than work did not have the strength to mow my yard (with a riding lawn mower). One year ago i could no longer do my job so was forced to retire. That was a good thing because it took a lot of stress away. I have a good retirement plan so no stress about money. A great partner and great kids with level heads so no stress there. Having Parkinson's is hard but a lot of people have it a lot worst. It is all i have to deal with. My wife is in good health and exercising now and can almost keep up with me . I still have bad times and get down and have the why me talks with my wife but all and all i am in better shape than any one in my family. I can do more in a day than my son (he is 41) on 4 hours of sleep. At this point i am beating PD and hope to keep beating it for a long time.

The point of my story is we can improve. It is hard work and we will fall and fail over and over. But if we do not try we will fail and decline faster.

PS

I had given up 2 years ago and was ready to end my life when i made the decision to try one more time.

[Carolinagirl123 in reply to Bailey_Texas]

Bailey, you are so lucky!

[Isthistheone in reply to Bailey_Texas]

Congrats Bailey on your workout regimen and attitude. You are right on about always trying. There are many things you can do. Luckily I get a break from mowing called shoveling! On second thought!

[Serenity_finaly-1 in reply to Bailey_Texas]

Thank You Bailey for being so open. There is a lot about PD that is hard to share with others.

[Isthistheone]

Bailey, a lot of us it seems have had very similar paths. It takes time, trial and error really, to find the right medication(s). That's the first step. We battle a disease that doesn't respond to an antibiotic. I was on my third neurologist, a movement disorders specialist, before I saw real improvement. That took two years!

Everyone is different. We are all on the same boat. There are times when I get down, then I see my children and grandchildren. I'm very convinced a cure is really really close. That gives me hope. I'm 66 and 5 days. I've been diagnosed and in my 7th year. I will never quit.

Our son, the youngest of three, just announced his engagement to a wonderful gal from NYC. He asked me to be his best man. What an honor!

Also what started out as a lark almost 20 years ago has almost come full circle. My son and I have been to 25 MLB baseball stadiums, only five remain.

Stay informed, stay encouraged and keep moving!

[Pauldmd]

I have always thought that unhappiness can be measured by the distance between your expectations and your reality. Both can be managed to some extent. I have been able to accept my situation and try to keep my expectations positive and reasonable. PD is different for all of us and for some the reality is terrible and a positive attitude is all but impossible. On the other hand, I have met many PD patients so focused on what they can no longer do that they lose sight of any positive possibilities. Sadly, life is like a condom. You usually get less out of it than you put into it.

[Carolinagirl123 in reply to Pauldmd]

Paul, you are so right--especially about the condom part

[JohnPepper]

Hi Ozie. Yes! You are correct, it is only natural. I don't know how far down the line you are, but I was quite far in 1994, having had to give up my job and not being able to talk properly or write properly and I had already started to shuffle.

I joined Run/Walk for LIFE in 1994 and have never looked back. Since 2002 I have no longer needed to take Pd medication and I am movement symptom free since then.

You may not be able to do what I have done but why not give it a try. It costs NOTHING. If you walk as fast as you can, for as long as you can until you feel that you cannot go any further then stop. Record how long you were able to walk fast and how far you walked. Then do that every second day and keep a record of what you did. You can continue doing that until you are able to walk for one hour, without having to slow down. After you achieve one hour walking fast, just stick to that one hour and watch how much faster and further you are able to walk over the next year or two.

In this way you will be getting fitter and stronger and probably feeling a lot better. During that time, you may find that you don't need as much medication so try to slowly reduce it. I will tell you how. Don't take more medication, if you are feeling better and stronger.

If you are unable to walk fast, for whatever reason, then let me know on my website - reverseparkinsons.net and I will help you.

[lambee11]

That is true but it is only human to feel down at times....when I get down I just embrace it an let it flow through I acknowledge it and cry if I feel like it but it will pass eventually as long a as you know why you are feeling like you do....sometimes if I am really down I talk to my daughter or a friend....telling them I know that they do not have an answer or a cure but I just need to vent and feel sorry for myself .... someone said years ago "that I cannot say ' why me' when things go wrong or I get a disease ( he had brain cancer) because I never said\ 'why me' when things were going well"....this has helped me a lot keeping life in perspective... .. no one can be permanently up....... also there are no right or wrong feelings so do not beat yourself up about being down sometimes ....but if it last along time and you cannot shake it please talk to your doctor ....one of the of the side effects from our Parkinson's medicines is depressions ....

I hope this helps...

Elaine

[andrewij]

Yes, it is only natural to get down, but you need to be careful this doesn't lead to depression. To keep going I think of people more unfortunate than myself. My cousin died recently aged 52yrs, she had two benign brain tumours removed, on separate occasions, and then contracted lung cancer. She died within ten weeks of diagnosis. My uncle, and aunt, her parents, are still alive, they are dreading Xmas without her, I miss her too. I am 60yrs old, I was diagnosed 11yrs ago. I take no comfort in my uncle and aunt's misery, but it does help me to put a perspective on my own situation.