SOCIAL & FAMILY LIMITATIONS

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Port Mac
Regular Member


Date Joined Sep 2010
Total Posts : 70
   Posted 10/29/2010 8:09 PM (GMT -6)   
I have Parkinsons but in one instance I am managing well.
The problem is that I cannot keep pace with my friends and family...I am too slow and get too tired.
To this end family holidays are a thing of the past because the type of holiday I can manage is different from the holiday my family likes. I find I just get too exhausted...the idea of sitting around a pool by myself at a holiday resort does not appeal.
I can do a fair bit but not at the pace of others so I am not included (and fairly so) and as a result i am becoming more distant from my friends and peers.
Years ago my mother in law had Parkinsons and functions and holidays with her were very difficult because we had two very different sets of people.
From day to day as my physical activities are very limited, partly because I have nobody compatible physically to do them with means I have less to talk about and in short becoming a less interesting person.
I still feel I can do quite a bit but I have nobody to do it with like I once did.
Now I think my friends are fair in their attitude because I know what it is like to deal with the subject from the other perspective. When all is said and done I am the person who has the problem...
Next thing is where to I go from here???????
There is plenty I want to do but nobody to do it with.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/29/2010 10:30 PM (GMT -6)   
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
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

Jim1969
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Date Joined Jul 2009
Total Posts : 2042
   Posted 10/29/2010 11:25 PM (GMT -6)   
Everyone goes through this at some point in their life for one reason or another. You get married and you become isolated from all your single friends. You have kids and you become isolated from all your old childless friends....or it goes the other way depending on the situation. It happens as you get older. Then you have what many of us have...some chronic health problem that isolates us from our "old" life.

When this happens you really have two choices. Stay isolated and alone or go out and find and make new friends with whom you have something in common.

Chart gave a really good suggestion about joining a Parkinson's support group and meeting people who are in the same boat you are. Other things is to find activities that you can do. If you like to play cards or board games find or start a group in your area of like minded people or go to the local "service" centers and home for the elderly, handicap, etc and spend some time playing games with them or doing some kind of crafts or just sitting and talking...whatever trips your trigger and what ever it is that you can do.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 10/30/2010 1:18 AM (GMT -6)   
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

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/30/2010 11:10 AM (GMT -6)   
Dear Mac,

    Well, three years ago I had an over abundance of energy and could do everything and anything with ease! When in need of anything my friends and family came to me. I was always there! You need a smile, I can bring one. Need a laugh, I come with joy in hand! Need some place to stay? Food in your belly? place for the holidays? Help with a bill? I will always be there. (still am come to think of it)

    ...... but now, I have a progressive spinal deformity and a couple of genetic problems that are making my life rather difficult.

     In the beginning no one wanted to slow down for me. There I was, trying desperately to keep up! The comments, the pesky tones as though I was a hindrance of some sort. Goodness, who wouldn't withdrawal?

     ...I did tell them all what was happening. I told them everything my doctors told me. In the beginning I had no "visual ques" that I was "sick". I was treated so badly. My husbands family, his friends, my friends... even one of my neighbors.

     I sought the assistance of a pain psychologist. But really, she just specialized in chronic / terminal illness. I learned to re build my life. My likes, my dislikes, who I was as a person and how I responded to myself. By that point I didn't really care about anyone out side of my little family unit. They obviously didn't give a gosh darned about me when I couldn't "fix, help, work, do et al" for them.

     ...Then some scary stuff happened. I began getting very short. Vomit at a drop of a dime. I couldn't see. Barley hear. Walking was hard. My "progressive spinal deformity" became VERY obvious. My right hip is hiked up, towards the back of my body and into my ribs. By the time my teeth crumbled out of my mouth in 2 months flat.. Lets just say that "shock" was an understatement. In all fairness, I did tell them I was sick the year before...

      Here it is. 3 years now I have been "sick". By the time those people that ridiculed me (you wouldn't believe the comments I got in the beginning) got a big fat dose of reality and realized just what they had done... I was a completely different person. I am a different person. They don't know me. None of them. Their guilt is evident. I am truly sorry it is there. On the other hand if anyone of them really WANT to spend time with me they are more than welcome, the door is wide open. But MY door means MY pace. MY world. In my world it is slower. I take my time and truly enjoy every minute. I have new friends. New life. New family. Of course those that ridiculed and belittled me are always welcome. I forgive them, I really do. But it is their choice if they want to spend time with me. It is no longer "My choice to physically hurt myself trying to keep up in THEIR world". I know them all very well. When I buy gifts I know exactly what they will like, or know exactly what to make them. Do they really know me? No. But they are trying hard to get to know me now. It is a whole nother world when the people around you have no choice but to truly open their eye and see YOU for who you REALLY are.

    It was hard. growing in to the "new me". I changed everything. From the ground up. I am ever so glad I did. It was hard. Moving on in my life with fingers pointed at my back. When I "looked almost normal" and they could justify their petty thoughts and actions. But, I had to press on. I had to become comfortable with who I was and life I needed to build. I literally didn't have time to waste trying to keep up with people who had no idea who I was as a person and what I needed.

     I guess what I am trying to say is if you can.. find a good psychologist who specializes in chronic/terminal illness. So you can have step by step guidance to re-build the "new you". Work on just what you need, your likes, your new hobbies and recreational time. It does hurt to be away from loved ones and friends while focusing on you. During that time, if they know what is good for them, they will realize the severity of the situation and finally begin to take in your needs and your likes/dislikes in to consideration. Just work on you. What you need. The rest fall into place.

*warm hugg*
      dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/30/2010 1:59 PM (GMT -6)   

 

     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. wink

    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. wink

 

      SE wink


Port Mac
Regular Member


Date Joined Sep 2010
Total Posts : 70
   Posted 11/3/2010 12:13 AM (GMT -6)   
Firstly, thank you to all that have replied, I appreciate it.
I have had contact with Parkinson groups but my level of functioning is quite high and many in the group are quite disabled and I find it difficult to cope with.
In brief, I am able to do lots of things and I look OK.
The problem is that I am slower than my peers (often, but not always) and I do not have the staminer. To this end where anything that involves physical activity is concerned I am left out. From there I am left out of things that do not involve physical activity. Because of this I am having less in common with my friends and therefore, I am seeing them less and less.
Now things I can still do is bush walk, go camping and many other activities but due to my slow pace and uncertain condition I have no one to do those activities with.
As to going out generally, my wife walks very fast, as I once did and sometimes still can. The problem is she cannot walk slow so she just leaves me and we meet at prearranged destinations...once again that puts me by myself.
I want to be able to get out and do things whilst I still can.
Next issue is that I am a musician but have had to give up playing.
I have had problems with psychologists because they have no idea of the position. I find they try and have me maintain my existing life, or life as it was. Unfortunately that cannot be the case. They offer no assistance in an alternate life.
I am looking for an alternate life with activities.
I really enjoy my work because I feel I am of value. Apart from getting tired, Parkinsons does not affect my work performance materially. I find these days I prefer to be at work and now mostly work seven days a week. There is nothing for me to do.
I use to like surfing but now lack the confidence to go into the water....I have been having some swimming lessons (months back) but they were no good because I was pushed too hard and it made me quite unwell. If I could restrict my swimming to say 20 minutes then that would be fine.
I go to the gym and have a personal trainer who knows something about Parkinsons and I find her very switched on and it has been a great help. Yesterday she sent me a text to invite her to her birthday party down at the beach...being mid week I had to work but I appreciated the invite because we do not get many invitations these days.
Thanks for reading the above silly mess!

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 11/3/2010 9:14 PM (GMT -6)   
Dear Mac,

     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.

~~>    http://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.

*hugg*
  dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/3/2010 9:35 PM (GMT -6)   
Have you though about giving music lessons, don't just give up on your music completely,
there are slow playing pieces of music and some have cd's, my daughter plays the flute
and church music has cd's in with some and some of those are slow pieces, maybe play
for church a slow piece that has a cd and no one will know where you mess up and it's
always welcomed, just an idea...
hope this helps, keep us posted.
((((((((((((((((((((((((((((((((((PortMac))))))))))))))))))))))))))))))))))))))
Healing Hugz,
My daughter has a heart condition so she might not always be able to play her flute, but she'd
be able to give lessons, she has good ears and sight reads very well, and you can get $20
for a 1/2 hour...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

Port Mac
Regular Member


Date Joined Sep 2010
Total Posts : 70
   Posted 11/5/2010 6:28 PM (GMT -6)   
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

Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 11/5/2010 8:05 PM (GMT -6)   

 

   Hurm.. Could you just go to a local nail studio? Often time they do pedicures for men as well as women.

*hugg*
  dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 11/5/2010 9:06 PM (GMT -6)   
Port then just book an appt with a podiatrist late in the day and slip out a little early. That way you have had most of your work day put in. In the states many men will go to a nail salon and have a pedicure done. Since you stated you call the shots at work, why not slip out early an hour or so one afternoon, the place will not crumble if you do that. Not very healthy letting those nails get too long, could lead to other un-needed problems.
Moderator Chronic Pain Forum

Port Mac
Regular Member


Date Joined Sep 2010
Total Posts : 70
   Posted 11/6/2010 7:35 PM (GMT -6)   
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
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