SOCIAL & FAMILY LIMITATIONS

Have you been to any local Parkinson support groups, try starting in
that direction. I too have family I just don't communicate well with
and hate going to their functions cause I get left out, I don't
do small talk very well, so I usually just let everyone else talk
and I just sit back and listen.
I attend the local fibro meetings and at least I fit in good with them
So try to get involved with a local chapter of Parkinson group, they'd
make you feel welcomed.
Hope this info helps
((((((((((((((((((((((((((((((((((PortMac))))))))))))))))))))))))))))))))))
keep us posted on this and healing Hugz

Here's link for local support groups for people with Parkinson's: www.parkinson.org/Search-Pages/Search.aspx?pSearchOpt=Local

Also, I used to work in Special Recreation & there were a couple of gentlemen who came to participate in arts & crafts who had Parkinson's. One of them enjoyed it; the other didn't (his daughter signed him up), but maybe it's something worth looking into. Generally Special Recreation is offered at the county level. You could try googling the name of your county and "special recreation association" or else you could contact your local park district & they can refer you. Depending on your SRA's budget, the activities can be pretty cool and might even include optional field trips every couple months. Typically the adult groups will meet 1-3 times per week depending on interest level, staff & budget. We did crafts, made simple no-cook snacks, grew plants, etc. My group wasn't able to get enough chaperons to do it, but in the past apparently they had done a night of modified bowling & everyone still raved about it the next year.
SRA's include people with all different types of disabilities -- parkinsons, blind, deaf, paraplegic, downs, etc. But I couldn't have asked for a nicer group of people. I wanted to work only with the kids, but the adults were part of the package. As it turned out, often the adults were the highlight of my week b/c usually their SRA time was about the only time they got to have fun & talk & enjoy working on something without having to worry about the pace, or what people think, or trying to explain their disability or whatever. Maybe something to look into.

Hope that helps. I wish I had more to offer. I know I struggle with the same thing with my family a lot. My friends are sweeter, but I still feel badly that I'm holding someone back. The one thing I did find that helps with some people is explaining what you'd like to do & what you need from them in order to do it (for me it was: I'd like to go camping but I struggle to walk, so I'd like to find a campsite within 20 feet of the latrines, I need someone to walk slowly with me whenever we're not in our tents so I'm not alone & I'd like to go places where I can be around others for at least half the day: for example, we all go to the lake together & I can rest on the waters edge & still join in the conversation & splash water on you all! ;). It does take good friends to accommodate you, but beyond that they also need to clearly understand what you're asking for. Otherwise they either try to figure it out themselves, and usually fail, or else they just feel sad & frustrated, and fairly quickly give up even trying.
Sadly, explaining doesn't seem to work with family members. I've tried & I know lots of others who've tried. But it does seem to help with friends. Just 'cause I'm slow doesn't mean we can't have fun! :)

Here's hoping you can find some fun people to enjoy life & be more active with!!!

peace,
frances

     Hello Port Mac!

 I just now had the time to read read this post, and I think Dani spilled her guts out here with us. She has adjusted well, and many of us could learn a lesson by reading it. I'm just not to the point she is yet, but my health is forcing me there one step at a time.

   I hope you found the replies useful, and I encourage you to reread Dani's responce again. Rather humbling to say the least, after all she has gone through.

    I also encourage you to become involved here on the forum as well. You will find that we are kind of a family of sorts, and a family that understands fully well what your going through. Each of us has felt this way at times, and continue to do so from time to time.

        Thank you for posting, and welcome to the CP forum.

      SE

Pain psychologists or psychologists specialize in chronic and terminal illness give step by step guidance to rebuilding your life with your limitations and illness.

~~> Pain Psychologist

When it comes to hobbies, try "hobby sharing". Pick a hobby a friend or neighbor does and get some "beginners pointers". Or just go to your local hobby shop or community center to take "beginner classes" to learn about new hobbies. Keep trying new one every other week until you find one that fits your life style. It is also a great opportunity to meet new people.

When it comes to things where you are walking a lot, just do what I do. Sit, rest, drink water. I also bring an extra small snack (trail mix usually peanuts = protein = more energy) and extra bottle of water when I know I will be with someone else. No one minds sitting for a quick snack for 5 minutes and if they do then they are more than welcome to keep going... I will catch up in a moment. That way you know you tried to make your "rest period" comfortable for the other person you are with. It is their choice to keep on going and leave or stay and let you rest / quick snack together. If it is a loved or friend you may want to pull them aside at a private moment and let them know how you feel about being left behind because of your limitations. Don't argue or fight about. Just be frank and to the point. Be sure to communicate every time. Don't assume someone "should know". It is very important to communicate how you are feeling and what your needs are in a frank and honest manner.

Don't be afraid to change your environment to make your daily life easier to manage. Lets face it, 5 mins doesn't go as far as it used to. So, we have to make sure we get as much out of those 5 minutes as possible. Personally I stay organized with a series of organization systems. I cannot clean for 8 hours every other day. But I can clean for 2 hrs in the morning and 30-40min in the evening. I cannot bend down to do laundry, but I can keep it organized so all I do is pick up a "separated" bin. .. you get the idea. Just try to make your home environment as easy to manage as possible.

~~> https://www.healingwell.com/community/default.aspx?f=16&m=1758750

Hey, we cant do the out-of-the-home activities we used to. Some of the stuff we used to do takes much longer now. So schedule in the extra hour and half. Do new things for outings. Comedy club so you can sit or only visit state parks that have the "handicap accessible" icon. It means the trails are paved, places to sit every 3mins down the "trails" & easy exit sort cut trails. Also, can still do things like the party you were invited to? Can still go (when you don't work) just take a small nap before hand and only stay a couple of hours. Or, you said 20mins of swimming is nice, so why not swim for 20mins and then have picnic / novel read in the park. Just a few modifications to stuff you used to do is all that is needed. You do need to change though. No doubt about it. It can be done on your own as well, you don't have to seek assistance from a pain psychologist. Either way it takes a few months to change "grow into the new you".

Trying to keep up or be "the way you used to be" is a bad situation to be in for you and everyone else in your life. It will be hard for the people around you to accept that you are a different person now. Just try to not be to upset at them. Let them know you do understand their unwillingness to accept who you are with your new limitations. That you wish you were the "old you" too.... but that at the same time you still cannot keep pretending that you are the person you once were. That you do have to do things differently for the sake of your body. "The mind is willing! But the body is not!". Even your wife will have to come to terms with it eventually. It would help if she went to doctor appointments with you so that she can speak with the doctors directly so that she can gain a better understanding of your limitations. If she is still unwilling to accept it then that is okay too... but again, you just keep on doing what you have to do for your body. She will come around eventually. For some reason spouses take the longest to "come to terms" with our illnesses and limitations.

I can see plain as day you are a fighter! I have a feeling that no matter what you do in life you will succeed. Just try to be patient with yourself. Changing your life style is a lot of hard work and will take time.

Thank you all that have responded.
As to pain management I have had limited success. I have been to three specialists. The reason for the lack of success is that pain management is focused on those who are disabled, or are in a very serious condition. I saw a noted specialist who told me that all his patients were not working or doing very little or teminal. He did not have anybody who worked full time and went to the gym etc. Such pain clinics are directed to getting thier patients functioning..whereas I am fully functioning from their perspective. I am fortunate from a work perspective because I am noted in my field...I can call the shots etc. If I was in a normal work environment or my work involved physical application then my situation would be more grave.
As far as pain meds are concerned they have to be very limited because they interfer with my ability to think and think quickly. They also cause server constipation and my local doctor thinks pain is the lesser of the two evils.
As to phsycologists I have had nil success. The reason is that they do not appreciate the problem. I have found the psychologists to be friendly. likeable, concientious, learned but totally theoretical...they have not been there. If I were to see another psychologist I think it would be me lecturing them and me teaching them.
The problem with the specialist is that he is very bright and qualified but often when one gets to that level they fall into some academic programing. Having all the knowledge is essential...but the next step of the best way to apply the knowledge is lacking.

One a different subject...it is a silly one but ultimately important. I cannot cut my toe nails due to lack of flexibility...so they are very long. Nobody at home will cut them or rather I would not allow them to cut my nails...it is not their problem. Next stop is a podiatrist which gives two problems....I have to make an appointment way in advance and I am very busy at work and it really mucks up my day. The second point is that it is expensive. I do not know how I will get a solution. The practical problem here is at the gym the change room is the place of social interaction....Australian men like sheds and change rooms because that is where they can solve the world`s problems etc....I have had to give the change room a miss due to nails too long and the embarrasement etc...therefore a reduction in social interaction. So you can see how a problem of a small nature affects things in bigger ways.
Thanks
Port Mac

Dear Pebbles
My wife is having problems because of a number of reasons....her mopther died of Parkinsons and mother in law played it for all it was worth and really wore out my wife. My mother died of a neurological disease but she was a very independent non complaining hard as hell person. Her father has been chronically ill for 24 years and quite demanding, however, he seems to be quietening down. My wife`s longest and best friend is very ill and may not live all that long. My wife`s worlk situation turned very bad and she had a couple of close friends at work and the friendship is no more. Fortunately upon my wife leaving her place of employment within hours or days there were more than several job offers all offering better money and conditions so all is not lost there.
My in-laws have always been against me , actually my in-laws are very critical of anybody from outside or who is different.
All this is that my wife....we will call her Mary has a lot on her plate and is just not ready to have somebody in my condition and neither am I!
My problem with toe nails is that there is such a waiting list for podiatry services. Often appointments I make have to be broken because of pressing work commitments. In my game something can happen which could involve millions of dollars and then it is all hands on deck...so appointments have to be cancelled. Then a new appointment has to be made. And so it goes on!
Things get so difficult that one gets to the stage of fighting for survival being to get through the day and quite frankly I am so tired that if my nails are too long..they are too long and so what.
One different subject which really upset me my youngest son plays in a a local junior sporting club and I have been totally bi-passed my most (but not all) because I cannot help out on the Barb -e que or run the lines during a game. I solved my last point I having another of my sons "run the line" and he was a great success because he is a noted young footballer with refereeing experience and probably did the job much beter than most other fathers. The next issue is that I hold certain legal registrations and the club had an issue which I was able to attend to at no cost...had I had been charging a normal client the overall cost would have been very roughly around $20,000. Thos members of the club who were well up in business really appreciated what I did but as for the others it all went over their collective heads. I am regarded as lazy because I do not do Barb- e- que duty! Now this last problem resolved itself last Tuesday because our youngest son was accepted into a top school in Australia as a football player so the local sporting club will be off limits due to his future school`s demands.
At the early stages I did explain my condition...it was greated with sympathy and followed with the question or expectation that I would be over Parkinsons within a week or two!
The point I am making is that people with disabilities may, just sometimes, have a lot to offer.
Thanks