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Old 08-07-2008, 10:51 AM   #1
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Meshell027 HB User
Living with CP

Hi,

I was hoping that some one with spastic diplegia can chat with me about life as an adult. I know the disability is not progressive but does your body not deal as well with the strain on your muscles. If you can walk on your own do braces really help or are they simly to help you walk more "normally"?

I have CP and haven't been to a specialist of any kind since my teenage years. I never thought about what lies ahead for me as an adult and I'm starting to worry myself sick with "what ifs".

Thank you
Michelle

 
Old 08-07-2008, 06:53 PM   #2
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01_Tara HB User
Re: Living with CP

Hi Michelle,

Not progressive... The brain doesn't get worse but as you get older you are going to get worse. I have gotten a lot worse -joint pain-muscle pain-contractors/major fatique/pinched nerve cervical spine.. I have mild spastic diplegia.. I live in constant pain..(sometimes I think most of it isn't related to my CP and it's Arthritis) Use a manual wheelchair..

I haven't seen a Cp doc since I was 14 when mine retired.. I cannot find a doc who's willing to treat me simply because they don't know anything about CP in adults... I wheel in and the doc tunes out.

I would get into swimming or some kind of water therapy and strength training.. Stretch, stretch and stretch some more.. You WILL get tighter.

Other then the above there's no reason why you can't have a "normal" life a family some kids and a dog.. *smile*l Find a doc get some therapy and you'll be ok =)

 
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Old 08-07-2008, 10:31 PM   #3
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open_the_door HB User
Re: Living with CP

Quote:
Originally Posted by 01_Tara View Post
Hi Michelle,

Not progressive... The brain doesn't get worse but as you get older you are going to get worse. I have gotten a lot worse -joint pain-muscle pain-contractors/major fatique/pinched nerve cervical spine.. I have mild spastic diplegia.. I live in constant pain..(sometimes I think most of it isn't related to my CP and it's Arthritis) Use a manual wheelchair..

I haven't seen a Cp doc since I was 14 when mine retired.. I cannot find a doc who's willing to treat me simply because they don't know anything about CP in adults... I wheel in and the doc tunes out.

I would get into swimming or some kind of water therapy and strength training.. Stretch, stretch and stretch some more.. You WILL get tighter.

Other then the above there's no reason why you can't have a "normal" life a family some kids and a dog.. *smile*l Find a doc get some therapy and you'll be ok =)
WOW. When I first read your message, I got alittle bit depressed. My son has spastic diplegia. I work so hard with him. We do stretches every night. He wears knee immoblizers at night, so he gets a good stretch with his hamstrings. He just got some night boots, and he wore them for 30 minutes tonight, but he will eventually wear them every night too. We do side stepping up our stairs here at home. He gets P.T. 2 times a week(one is water therapy), he gets O.T. once a week, speech, and horseriding once a week. I'm doing everything I can, so he can build up endurance, and strength. I see him struggling so much at times, and it is killing me. He is a twin, and brother doesn't have CP. He brother is the best therapist he could have.

Have you had any surgeries, and did you have therapies as a kid. I know that they have come such a long way with treating people that have CP.

 
Old 08-08-2008, 04:45 AM   #4
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Re: Living with CP

Hi,

I myself went through the whole extensive program as a child I had surgeries for heal chord and hamstring lengthening, Wore braces all day, casts all night. Phyical thereapy 4-5 times a week an on and on.

I have been really well for the most part I walk and have complete mobility its just that as I am getting older I feel as though I am tightening up and Tara's response is what I have been afraid of.

Keep doing whatever you can for your son. My mother was my rock and I am thankful for her pushing me to be strong through all of it every day of my life.

 
Old 08-08-2008, 11:01 PM   #5
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JellyRJFan HB User
Re: Living with CP

Quote:
Originally Posted by 01_Tara View Post
Hi Michelle,

Not progressive... The brain doesn't get worse but as you get older you are going to get worse. I have gotten a lot worse -joint pain-muscle pain-contractors/major fatique/pinched nerve cervical spine.. I have mild spastic diplegia.. I live in constant pain..(sometimes I think most of it isn't related to my CP and it's Arthritis) Use a manual wheelchair..

I haven't seen a Cp doc since I was 14 when mine retired.. I cannot find a doc who's willing to treat me simply because they don't know anything about CP in adults... I wheel in and the doc tunes out.

I would get into swimming or some kind of water therapy and strength training.. Stretch, stretch and stretch some more.. You WILL get tighter.

Other then the above there's no reason why you can't have a "normal" life a family some kids and a dog.. *smile*l Find a doc get some therapy and you'll be ok =)
I second this.

That's just the way life is though. In my opinion doctors need to be more upfront with patients about the fact that things get worse. I remember seeing my ortho about some pain and fatigue when I was 18 and he said "you're only going to go downhill from here". Gee, thanks buddy! But the fact is one can only have so many surgeries and treatments. I'm 22 and have had 7 surgeries. I definitely can't have any more ortho work done.

I'm just trying to take really good care of myself now. I go to the gym 6 to 7 days a week where I do a professionally designed weightlifting program called Home Grown Muscle and different types of cardio. I've also eliminated high fructose corn syrup, trans fats and most processed food from my diet. I've never felt better! I still have pain and fatigue, but getting in shape has helped so much. My goal is to get to around 15% body fat. Not because I want a six pack but because I don't want to be carrying extra useless weight that would be putting further stress on my already shot joints. you know?

Last edited by JellyRJFan; 08-08-2008 at 11:02 PM.

 
Old 08-11-2008, 04:06 PM   #6
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Re: Living with CP

I've had all the surgeries too and therapy as a child..(walked with a walker and worked my way up to canes but for me with every surgery I became weaker and didn't regain my strength again.(it's a problem when you have spastic diplegia) I've also changed my diet trying to "feel" better the fatigue is kicking my butt. I've always been tired but found that eating better is helping.. also cut out high fructose corn syrup, trans fats and most processed foods. I've always been petite under 85lbs so it's not weight I'm trying to manage it's all about feeling better. I've been reading Montel Williams book Living Well and he makes a lot of sense..

I'm going back to the general doc tomorrow and try to explain my pain yet again and try to get some help. I've always stretched try to be as loose as
I can be so I don't know what the problem is but it came on real slow.. Neck started to hurt then later on noticed my left shoulder (tingling in my last 2 fingers) shoulder doc said I had some arthritis but he was worried about my neck went to spinal doc got MRI said I had a slight pinched nerve (cervical spine) and apparently it's common in people with CP... Acted like it was no big deal and said if you have further problems please consult your shoulder doc because there's nothing I can do for you.... I was like.. what about my pain and numbness and weakness.. It was obvious he didn't care that I was in misery.. My fingers and wrist started hurting middle knuckle seemed swollen (tendons seemed swollen) and my wrist. I can't paint anymore and pushing my wheelchair is sheer agony... so out of sheer desperation I took the therapists advice and got an electric wheelchair.. I've had it for 2 years and I'm still in misery.. I hate it ...and have noticed a change in my breathing and since the pain hasn't gone away I NEED someone to hear me so I can get back to my active life before all this started. I was in pretty good shape arms strong could wheel anywhere..

My spastic diplegia only ever effected my legs... so I wonder why all my joints are hurting one by one.. Now it's my hips & Knees...

I'll let you all know exactly what the diagnoses is so I don't freak out everyone on the off chance it's something completely unrelated to CP..

Have a great day everyone!

 
Old 08-12-2008, 01:00 PM   #7
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Re: Living with CP

Hello,
Life as an adult with cp has been no different than my life as a child. I did have surgeries on my heal, cord lengthening as well as my left arm for lengthening. I have not seen an otho since the age of 15 as he said he could do no more for me from that point on. I went for years without any aids to walk. Now, that I am 41 years old I wear an AFO on my left leg. I do believe I have this device simply because my left side is shorter than right by almost 2 inches. As far as pain, I have never really had complications with pain. I have a shorter walking span, due to tiredness, but that's about it.

I live a normal life. I have thre children of my own and 2 stepchildren. I raised them all. I run my own in daycare business now for 20 years, and I am not slowing down. I could, however do some self improvements with stretching and exercising my bad side, so that I don't end up with pain, or complications. I take One day at a Time

 
Old 08-13-2008, 04:48 AM   #8
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Re: Living with CP

Thank you for response I was hoping to hear at least one more positive discussion. I have been able to walk with no aid and with no pain for most of my life. I was begining to think that I was living in a dream world that I would have my mobility for the rest of my life. Just knowing that getting worse is not a definate thing eases my mind. How do people deal with the whole balance issue with having children? I want children but my balance is not great and I would never be able to live with myself if I harmed my child in any way. I too have asperations of a day care but my fears are that people would rather their children be with someone "normal". I am so happy life has been so full for you that is the best news I've heard in weeks.

 
Old 08-13-2008, 07:40 AM   #9
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Albertarose HB User
Re: Living with CP

First questionto you is what is "Normal"? We are normal as far as I am concerned. We do what we need to do to get by in life. I do not know what it is ike to use two hands, or walk without a limp. To me this is normal. I have thought people how to do things with one hand and they are amazed how I can do these things such as tying my shoes, moving my fridge and stove to clean behind them. I do this all with one hand. I call it DETERMINATION. If you put your mind to it, you can do anything.

As for having children, this is a decision you need to make on your own. How much has your cp affected you? My cp has only affected one side. To look at me, you would never know I have cp. My balance was always generally good. When my children were babies, I did need someone to help bath them up until they were 4 months old. As they got bigger it became easier. My daycare children, in my home are children of age 2 and up. I chose this age to eliminate any stress on my body such as picking them up and carrying them around. I do a lot of walking with the kids, and a lot of educating them on my cp. They do not understand the term cp so I simply say I have a broken arm and leg forever. They are very understanding, as well as te parents, that they help me out too. With some tasks if needed. We all come together as a unit. It has worked for me for 20 years. Childcare is not easy, but it is very rewarding. I feel I am giving something back to these young people, that they give me. Set your mind to do whatever it is you want to do, and you will achieve it.

 
Old 08-16-2008, 06:46 PM   #10
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Re: Living with CP

Wow this thread has been a bit frightening, depressing, uplifting and eye opening. My daughter only turned 2 in May, she has Level 3 -4 Quad CP and I fear so much for her future. There are so many worries, not just the physical but the social and emotional. Every time I start looking to the future I have panic attacks, so I've learned to just take it one day at a time.

I did wonder about fatigue and pain, and you ladies have answered that for me, so it appears some have more than others. Can I ask do you suffer 'cramps' in the muscles at all? My little one wakes crying in the night quite often and I just wonder if she gets them. Another question, do any of you have trouble regulating body temps? My girl is a real hot bod, and when she had a lurgie a few weeks back she didn't cope well at all once her temp went over 38deg C (sorry can't translate that to F) it was like she was drifting in and out of consciousness, but once she had paracetamol and ibuprofen she was happy as larry again.

 
Old 08-17-2008, 04:13 PM   #11
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Wallis86 HB User
Re: Living with CP

Leacie,
Based on your other posts and this post, it does sound like your daughter might have a metabolic disorder. I have a mitochondrial disease (metabolic). What especially triggered my suspicions was the trouble regulating body temp. My limbs are often ice cold, but then in an air conditioned room, my body is burning. Just the other day, the doctor commented on how hot I felt. I also have presented with a CP like disease, I have severe spasticity of my legs. It was like I suddenly developed adult onset CP, but I had clear MRIs and such. I'm of normal intelligence and was a normal child. I don't know, I'm glad the doctors are looking in that direction though, because CP would have shown up on MRI, and metabolic disorders are hard to diagnose.

 
Old 08-18-2008, 02:47 PM   #12
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Re: Living with CP

I get cramps in my legs at night ... I have several friends who are Quad Cpers .. I've learned that everyone is different. My CP is different then others and so forth.. Just in my group of gimpy friends I'm the only one in constant pain. My quad friends may not be as mobile as me but they aren't in pain.. Makes me wonder if it's because of all the abnormal walking and _very_ _very_ weak
muscles.

I'm going to see a Pain specialist.. Just waiting for the doc to set up the appointment.

Get your girl on a horse.. water therapy - You can get dogs for kids especially trained to assist them as they get older. Anything that gets her moving. Think great education/therapy/college.. sports help with therapy..

Try and get her involved with lots of different friends.. it's sad but true the normal friends eventually go away a few will hang around so she needs to have a combo of both friends. That's why getting her involved with sports will give her the confidence she needs and plenty of friends! =)

Hope this helps!!
Tara =)

 
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