Is Paralysis inevitable? Anything else?

[Nippermcc]

I suffer from many symptoms of Parkinsons which I am presently controlling with Siniment: these range from tremors to "foot stuck to floor"; need help getting dressed including while shopping at store; need help getting in & out of car; falling down flat on my face...is it inevitable that these medications will ultimately not work and I will be paralyzed, unable to walk, dress myself again and forever? The depression I feel from this perceived inevitability is crushing me! I am trying to do Mr. Pepper's Fast Walking but don't know if I have too many symptoms for the Fast Walking to work! Any ideas?

[stanny7]

Interested to know this too as my walking is so bad practically none existent when off.

[ddmagee1]

I’m so very sorry to hear about this Nippermcc. I, too, suffer from many symptoms of diagnosed PD, along with Ataxia, and I am also taking Sinemet. Tremors and dragging my rt. foot is a problem, and stiffness of muscles etc. I have fallen flat on my face, and gotten blunt force trauma, hematoma, concussion, two black eyes, and had great difficulty getting in and out of a car and walking, during “off “ times, between medicine doses. Mr. Pepper’s fast walking does not work for me, for several reasons. I also have severe arthritis and need two knee replacements, and I am being evaluated for post polio syndrome, because I had non-paralytic polio as a child ( or you might say my legs were affected with stiffness etc. ). So, yes, it does get depressing, so I don’t think about what I can’t do, rather, I concentrate on what I still can do. I do range of motion exercises, some resistance and stretching exercises, and some Dalcroze Eurythmics exercises. Exercise of those types are best for me, with my particular problems. Wishing you the best in your journey forward! Remember, you may have PD, but it doesn’t define who you are.

[DianeF in reply to ddmagee1]

I have had two knee replacements as well and multiple back procedures. Luckily with the right medication I am able to walk, albeit not as fast as I would like. All my doctors have suggested swimming or walking in the shallow pool at my health club. Just a thought. . .

[ddmagee1 in reply to DianeF]

Hello DianeF, Yes, I regularly exercise at a pool. We have a pool at the retirement centre, where I live. It, actually is the best environment for doing range of motion exercises for me. Thanks for the input.

[M_rosew]

No, paralysis is not normally a feature of PD.

Medication does not necessarily stop working, but will probably need adjusting from time to time.

The diagnosis is hard to hear, but think of it as giving you the chance to prepare your home for future difficulties (unlike having a sudden illness or accident). Whatever you do, keep moving. Don't stop trying to things you find difficult.

You need to see a Neurologist 'specialising in movement disorders' and give a full picture of your symptoms so that s/he can prescribe. It would be useful to see a Neuro-physiotherapist as well to help you re-learn movements and balance.

I have found some on-line programmes useful:

<beatsmedical.com> (for walking)

<pdwarrior.com> (for excercise)

<parkinsons.org.uk> (for info on PD)

[JohnPepper]

It is not easy to understand what taking conscious control of our movements really means. When you started doing the fast walking, did you start walking for as little as 5 or 10 minutes and slowly build that time up to one hour? Did you walk as fast as YOU could. or did you only walk at a modest pace? Do you understand what the difference is between 'Conscious Control' and walking normally?

Why not look at my profile and get in touch with me. I will help you to get on top of the walking and hopefully get you on track to improved health.

[OTEB]

Hi Nippermcc. Sorry to hear this. I would definitely recommend that you see an OT or physio specialising in PD. Exercise is SO important and there are many techniques/ strategies that you can use to help you function better. If you're in the U.K. look for a private therapist if NHS services are hard to get into in your area.

Google LSVT Big and PD Warrior too. Both are intensive therapy programmes that can be adapted to suit your needs. There is lots of research behind them and the functional outcomes / general improvements are great.

Good luck!

[jeeves19]

Get a stationary exercise bike?

[trikelover]

Buy a recumbent bicycle. I get great benefit off cycling on my recumbent trike. hpvelotechnik.com/produkte/...

[Hikoi]

NipperMcc

This is hard isnt it, especially keeping positive despite everything. NO it is not inevitable the meds wont work, There are people here who have been on them 15 plus years. What we all have to do is work out the best timing and combination. for us individually which is quite a challenge.

You sound to me like you are describing feeling weak. I feel this at different times of the day and I certainly couldn't do fast walking in that state. I wonder if your meds need adjusting, then you may feel better

[glenandgerry]

You have some fantastic suggestions here Nippermcc My husband with Parkinson's also struggles to walk. Like ddmagee1 and DianeF He's had two knee joint replacements and tried John Pepper's walking regime for 15 months, unfortunately he only ever managed to walk a maximum of 15 minutes at any one time. Then he developed back problems for which he has received 4 spinal injections over 3 years with varying degrees of success. Dr & specialist just don't seem to have worked out the cause or solution. Unfortunately he is no longer able to swim and was turned down (by email) for PD Warrior without even having an assessment. He does, however, go to 'Steady & Strong' exercises twice a week.

ddmagee1 How did you find out you had Ataxia? I'm curious to know as my hubby has very ataxic symptoms......his gait is very like a person with Ataxia but his previous neurologist who specialised in epilepsy never mentioned Ataxia. We are presently awaiting an appointment with the new neuro at our local hospital who, I understand, specialises in Parkinson's so hopefully he will know if hubby has Ataxia as well as PD. His PD diagnoses was 12 years ago but don't know if or when he developed Ataxia. Hopefully the new neuro will run some tests to find out?!

Btw what is Dalcroze Eurythmics? Do you do these exercises in a group? If so, are you in the UK?

Thanks

[ddmagee1 in reply to glenandgerry]

glenandgerry, I was diagnosed with Cerebellar Ataxia a few years ago, before PD diagnosis, because I have an artery that has attached itself to my cerebellum and has pressed in on nerve roots in the cerebellum, causing the Cerebellar Ataxia. An operation is out of the question because it is to risky, so I just have to live with Ataxia. It doesn’t help that I had a compression fracture of a lower disc in my back, about 30 years ago, either. Dalcroze Eurythmics are movement exercises, used mainly for stage movements and dancers. I took Dalcroze Eurythmics in College for four years, as part of a theatre program that I was majoring in. The exercising stresses smooth movements, and helps with balance, so I incorporate and modify some of those exercises in my daily routine. If you Google Dalcroze Eurythmics, you may be able to find some exercises that could help. Of course, I would recommend that you check with a physician or licensed physical therapist before you use those exercises. I don’t live in the UK. I live in the USA. There may be group exercises in Eurythmics in the UK. I just don’t know where. It is popular amongst actors, but, like I say. I modify some of the exercises because of my balance problems and gait problems.

[ddmagee1 in reply to glenandgerry]

Hello again glen and gerry, I wanted, also to mention that Dalcroze Eurythmics was founded in Europe, and it combines music expressed with smooth movement exercises. I find the music relaxing and the exercising something that I can do, with some modifications, allowing for PD and Ataxia symptoms.

[glenandgerry in reply to ddmagee1]

Thank you ddmagee1

[Annie81963]

No one knows what the future holds. I try not to worry to much,worrying creates more problems. My motto, one day at a time. Do what you can every day and try to be positive . What works for one may not work for others,educate yourself and do what is comfortable for YOU. Good luck

[Hikoi]

ncbi.nlm.nih.gov/pmc/articl...

No right way or only way. This research involved Slow walking and fast walking and slow walking showed the most improvement so do what you can manage Nippermcc. The most important thing is to keep moving and never give up!