I've had PD for 15+ years and can barely ... - Cure Parkinson's
I've had PD for 15+ years and can barely walk. Does anyone else have that problem?
@ maryalice
Right now, my current progress on this journey, I walk with some slight impairment.
If you can barely walk, I wish I could find some encouraging words.
Thanks.
I got to the point where walking was a challenge, forward posture, festination......looking at a walker. Lucky enough to get into LSVT BIG Physical Therapy....made a world of difference, learned to "free walk" may look unusual with arm swings, but it works.
I took LSV and it worked for a while. Maybe I should try it again.
maryalice
I myself get checked every six to eight weeks on my LSVT Exercises for correction and modification. Need to work on the three BIG principles (1) High Intensity Effort, (2) Amplitude, and (3) Calibration. ongoing. Encourage you to try again. It keeps me mobile. It worked before.....you can use it again.
Maryalice, I've had pd for ovoer 25 yrs and I can barely walk sometimes if my meds are not working. This happens several hours of everyday. I usually take another dose (or part of a dose) of a sinemet and it helps. Instead of getting stressed, I use this time on the computer or reading or watching tv. Try not to eat protein....it makes the situation worse. So do nitrates, for me at least.
yes I having PD for 25t years similar problem use your walker and take big steps if you can,
My problem is I keep falling over, However one has there good days and bad days good luck
I know this sounds weird but when I read posts like yours maryalice where people feel able to discuss their mobility problems I find it quite heartening. Much as I should like to be able to exercise, exercise exercise!!!! as many PwP on the site advocate my PD won't let me. When I go to a meeting or function where there are many PwP the majority have obvious mobility issues.....I haven't been to one yet where people are celebrating climbing Everest or cycling round the world. I am not suggesting for one moment that exercise isn't beneficial merely that for many of us adapted Yoga, Tai Chi & chair-based exercise are what we can manage & that I sometimes feel that I am letting myself down by not being able to do more. That said my condition has improved over 8 yrs ....since the first 2 yrs after dx when I tried alternative meds & therapies (with support from my PD team). I got so bad I could barely walk, my left side was fixing in a claw, the pain was excruciating & I could only manage stairs on my bottom. The right combination of meds & treatments for each of us is unique & can only be found by trial & error.
Thank you for you honesty. I know exercise is important, but if you can't walk then it's hard to do.
I can't seem to find the right combination.
Yes I do now maryalice. I was diagnosed in 2004 and my walking has always been affected. I'm affected on my left side and I drag my left leg. When the drugs wear off I can feel that I'm 'locked' in position and can't move my body as well as my legs. I take Madopar which I have been finding easy to tolerate, no particular side effects of note, though my 'on' periods are declining. Best wishes to you.
I'm in my 12th year of PD my legs are problematic but the walker helps, so did the PT program LSVTBig n Loud. Now i know the walker is the pits but have the say now, if I fall and break something I'll be in a nursung home. So I made the choice not fall and use a walker only when needed.
In what way can you barely walk.? I can barely walk because my thigh tendon is almost always rigid. When my meds are off which is often now after 11 years I drag my left leg around behind me. This winter has been a b***H!
I haven't written on this page. I have had PD for four or five years. It has a;ways amazed me how active some of you are. You go on bicycles , on trips etc. I do nothing!! Very hard to dress and walking is very difficult. I have urinary problems - can hardly get there on time. Memory is very bad. Seems like I've already seems written this. I'm 82 almost 83. Not going to say anymore if I have already writtin this.
Bob
Did this letter go? Says in a few seconds.
@ Owenbob,
Yes, the letter go. Oh! I must close now and write no more as I must "go"
I'll be 80 next Sept. and have PD since 07 w/ same problems. Suggest PT at home 3 da/week w/ a buddy to time and observe technique. Always use music w/ a beat - Pandora. Different sizes of exercises balls gives many options, e.g. w/ hands/chest on ball jumping w/ both feet duplicates leg press in PT clinic. NU Step and Thera Cycle, at home are effective. The 24/7 leg stretches, on carpeted stairs are essential in routine. I walk up and down the driveway w/ 2 hiking sticks. Catch, using ex balls, with my budddy gets me breathing. In case of a fall, I wear a good bike helmet walking and for gardening. Sometimes I need a wheelchair and times I can be very mobile w/o sticks.
I had DBS in Sept had great success at first. After a few months, I still have times when I have great trouble walking . I work full time but have to try to relax as much as possible because of muscle stiffness in my right leg and foot. I am still adjusting on my DBS stimulator, but have not got it just right yet. I am a believer in DBS and am a WHOLE lot better than I was, but it is not perfect for me yet.
Thanks, I'm considering DBS.
Ultrasound surgery for PwP
insightec.com/Parkinson_Dis...
healthsystem.virginia.edu/f...
Thanks. That is the surgery I am considering.
may i inquire as to where you live? because i highly recommend my surgeon in lexington ky.
my husband and I go to his PT appointments and we are trying to keep him on the plateau he's been on. It's a struggle in winter to do the walking but the PT has worked to stretch his shoulders to ease the upper back pain he had. He works on balance with a wide variety of activities. What we find is that he can reclaim abilities he thought he'd lost. He has yet to to LSVT Loud but we're told that this is more focused on his individual challenges.
Keep hope alive and move what you can.
THANKS FOR THE ENCOURAGEMENT.
also we can find ways to 'work around' problems. My husband's first PT got him back to walking fast using a handheld metronome which gives a beep to mark the pace. It works to 'cue' him to step and reminds his brain to get into a rhythm. This was at BU in Boston, Massachusetts where they are studying PT and PD. Exercise is supposedly the only treatment that is neuro-protective, that is, may act to slow the progress of the disease.
Good luck, we're pulling for you.
Thanks. I try PT again.
How are you finding medication maryalice after 15 years? Is anything effective for you.
I tried so many things, but can't seem to find the right combination. I've decided to just turn it over to Jesus. Thanks.
On no medication now then?
I'm on Mirapex and Amanadine
I see on another thread that you tried sinemet when you were first diagnosed and it didnt help then. I wonder if it is worth another try now.
I had a friend in a wheelchair who once she started sinemet could walk again.
A good response to sinemet is often used as part of the assessment for dbs.
All the best
Thank you for the suggestion. If it will enable me to walk again it's worth a try.
Maryalice
Yes I think sinemet is the only thing that will have any chance of making you walk again. We need dopamine (which sinemet supplies) to
move and how can you exercise if your muscles don't work? after 15 years your dopamine supply is going to be very low and the drugs you take are not supplying you with much. I do hope you try it again.
it makes you feel good in your body, if nothing else.
yes I can barely walk either, it has been 12 yrs for me. so frustrating, I dislike it so much on so many levels. But I also know if I stop walking, I won't be walking so make yourself move the best you can. Hang in there, we can do it!
Hi Maryalice, do you have a family member that can do massaging, I massage hubbies legs and feet, the flexing for ankles and circular motion of his feet.I can't get him to do it on his own. Also arm exercises. He has had pd for twenty years but due to a head injury, severe brain damage soon to be five years ago, it really made things worse. I can get him to walk a bit holding onto my arms in our home each day. He can't walk on his own, I noticed he wasn't raising his knees up when taking a step so after working on that it helped him from walking on toes. My husband has been off of pd MEDS for sixteen months now, they built up an intolerance to him, due to his violent behavior to me, his neuro and family physician didnt have any solution, but the nuero said the meds werent helping him anymore, I prayed for God to guide me in what to do, decided to stop giving him the Pd MEDS since what the NEURO said, thankfully all the bad stuff stopped, along with all the side effects he was having. My post is in sharing what we have done. Prayers you are doing better. I am so thankful to have found this sight.
do you try to walk every day. even if you cannot get out house.wear out the carpet.i find it easier to run short distances .do you take meds talk to neurologist about stalevo?otherwise be careful run outside can trip
Dear MaryAlice
I turned 60 last month, I have been in the condition since 1996 ( 18 years ) and I can definitely assure you that NOT ONLY IS THERE HOPE to get back your life but there is also without doubt a lot that you can do to achieve this.
Although I have been a PWP for 18 years I can perfectly walk , move, drive and work.
The key to this lies into three major rules :
1. make sure that your dietary habits comply with the requirements and needs of our condition.
There is a wonderful book giving detailed instructions on how to optimise your function
by nutritional manipulation
The title PARKINSON S DISEASE The way forward ISBN 0952605686
The authors Dr GEOFFREY LEADER and LUCILLE LEADER
Along with this you MUST complement your daily diet with a lot of nutrients (from food supplements ).
ACCORDING to the authors of the book, many PWP demonstrate nutritional deficiencies, which, if not adressed, may compromise energy and other cellular function.
So nutritional mangement for these people is absolutely vital, so as to optimise thei
r function and well being
I sugest that you should find an orthomolecular nutritional therapist who can help you
optimise your diet with astaunding benefits to your ability to function.
2. It s time you started taking L-dopa but since you have abstained from this until this stage don t make the mistake to start on synthetic L-dopa. There are other solutions ,
You can consult the webpage neurosciencemyths.com/dykinesias.htm
WITH L-dopa and nurition you will see youself function again in all respects .
3. EXERCISE IS CRUCIAL it enhances metabolism , keeps you fit and flexible
it improves your mood . there is a very simple instrument for working out at home especially designed for women . it is called EASY SHAPER . You don t have to be able to walk to use this . It is easy smart and effective .
Take my advice. and keep trying . dont give up . prayer is good but we also need action
D ar Hikoi,
The kind of supplementation with nutrients depends on the individual needs of each one of us .
In Europe, where I live , there are several clinics that offer customized programs of nutritional manageement for PWP based on their biochemical tests evaluation .
If you consider a thorough aproach to this, you could make a research on the net or , if you like
I could give you one or two names of such clinics.
However as a general aproach I could tell you what I use .
1. chlorella and spirulina are good sources of virtually all the nutrients that our body needs
but in order for them to to have a therapeutic effect , you should use large amounts.
you should consult a nutritionist . Try to find an othomolecular nutritionist .
best wishes
hi maryalice, I just saw your post from 8 months ago and was wondering if you have had any improvement in your walking. I too have that problem but I find that sometimes I can do things to over come it and other times I just have to wait for the Sinemet to take effect. I could share a few things that help me if you still have problems.
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