What a difference


#1
With two members of the family, extended family (so not hereditary) suffering from Parkinson's, I was not surprised to hear about the results of B's MRI scan; given the areas of concern, symptoms and pain we have in common.

Interestingly however, I am amazed by the different approaches to PD in comparing our overall treatment and care.

The losses in mobility control, uninvited limb tremors, cramp and pain, when I was first diagnosed, have been turned around by levadopa medication and physiotherapy. Most importantly the latter, has helped to address the muscular problems associated with the 'one sided aspect' we commonly share, and while easily tired out I now enjoy a daily walk and even the occasional cycle ride.

Most recently, I jarred my back while decorating, and while both Paracetamol and Methadone based painkillers failed, Physiotherapy again proved to win the day. With visual sight in MRI scan to hand, the Masseur Kinesitherapeute was able to focus a massage, instantly eradicating the painful discomfort within a half hour session; plus the gentle manipulation and massage to the thigh muscles, reduced the squeeze upon nerve tissue, as the cramping muscle tension relaxed in the calf.

Akin to this, there are exercises I do to help maintain balanced muscle tone; but above all, the added mobility provided by, a half hour session of physiotherapy per week (over a period of six weeks) means I am not constantly kept awake by back and leg pains at night, and I can continue to contribute in our daily family life.

Looking back over the years to earlier periods of physiotherapy, I recall how the involuntary arm movement was greatly reduced by physiotherapy prior to any medication being swallowed, such that I could drink tea without a spill; and with a little sadness, wonder whether my mother would have benefited from physiotherapy to correct her spinal curvature of the upper back and neck, that I suspect caused her difficulties in her inability to swallow and the eventual onset in MND.

Only to pray that by sharing knowledge, physiotherapy might be considered to a larger extent, as an important and intrinsic part in the prevention and combating of PD and similar neurological disorders, prolonging an individual's ability and dignity, while in the long-term, reducing the burden upon nursing and hospital resources.

#2
I take it this is a private physio who knows what they are doing.

After my self referral I generally have to wait 6-10 weeks for an appointment, that's just to find out whats wrong. One week later comes the appointment for treatment, which always takes the form of an elastic band.

I was told by my doc I had housemaids knee and that was just my tough. Anti-inflammatories and pain-killers. Didn't touch it.

I eventually had to tell my doc to refer me to a private knee specialist. A scan was done and I was told I had a build up of calcium on my tendon caused by internal bleeding, probably from some fall or knock. This could be sorted by a physio using ultra-sound.

I explained this to the physio after my obligatory 10 week wait. I burst out laughing when she waddled up the corridor towards me with an elastic band and a bit of paper explaining how to flex your knee.

I now by-pass physio. If I pick up an injury. I just start collecting elastic bands discarded outside my door by the postman, and flex whatever I have a problem with then settle back and listen to some Mantovani on surround sound, closest I can get to ultra sound.

#3
No! This is the usual referral from my GP to services from the Physiotherapist. Standard and usual procedure in France. Although I am blessed with a very knowledgeable GP and I chose to see a Physiotherapist who specialized in sport injury (rather than another with similar fixation on elastic band treatment that while stretching tendons, does not address the surface damage to nerve fibers and tendons to perhaps aggravate the situation more!

My physiotherapist seems to have a good understanding regarding various nerve roots and their function but most importantly he works to achieve muscular balance that will help maintain spinal deportment while relieving pressure caused by dehydrated or damaged discs.

Care of the spine and the Central Nerve proves to be vital and the key to my mobility and daily condition regarding PD. Knowing and relating how I am feeling during the physiotherapy results in a cohesive team effort.

I am deeply saddened by the apparent attitudes to PD treatment in the UK regarding physiotherapy - or should I say the lack of it! As the benefits are so directly apparent in my experience.

Laying on the floor to adjust the various vertebra with different exercises, means I can reduce unwanted arm shuddering (rooted mid way up the spine) or avoid calf cramp (rooted via sciatic nerve in the lower lumber area).

I do hope things improve for all with PD. OK. I may always need some medication, but more importantly I am learning to work with and battle the situation, rather than except a reliance or giving in to inflammatory and painkillers that add additional burden to kidney and adrenal gland functions (the latter being most important to naturally produced dopamine).

With kind regards, I hope you can find a useful way forward.

#4
I can so relate to the rubber bands which some years ago converted a slight strain into full blown frozen shoulder (not the subsequently dx PD side). I was handed a sheet which I dutifully followed but when I said one of the exercises was difficult she denied that it was on the sheet until I spotted a copy of it desk and at one point I thought I was going to be ushered out by the elbow as a stroppy patient!!

Post DX, as I had to wait several months to see the PD nurse, in accordance with NICE guidelines which say that on dx PWP's should see a physio, and as in any case I had extremly stiff sore hips causing difficulty with stairs, I asked the PD nurse for a referral, having been told by the self-referral lot that as PWP I had to be referred to another unit. The PD nurse forgot to do the referral so that's how important he thinks it is. The neuro reminded him and when I finally got to see the physio severalmonths later they seemed somewhat bemused as to why I was there in spite of the fact that the head physio's father had had PD. Meanwhile the steroid tabs and then the injection which I had asked the GP for, together with the PD meds sorted the problem out. When I mentioned to the PD Nurse that the physio did not seem to know why I was there, he said sharply "They are not sports physios" as if I had been asking for the moon. When discharged from the physio I asked what I would do if I had further problems, they said just self-refer (i.e. to the normal clinic who said I could not self-refer)so I imagine that the whold merry-go=round would start up again except that of course I would go private as I am lucky enough to have the means. Prevention is better than cure does not seem to feature much in PD management unless you happen to live near a large city with a multi-discplinary clinic for neuro conditions. How many of them are there I wonder?
start up again as the PD nurse often seems to forget things.

#5
I was given Ibuprofen, which I had a bad reaction to.

The good thing I've found with PD is the amount of education that comes with it. Everydays a school day.

Today I've learned that French physio patients are better qualified than UK physio's. So if you want to skip the queue hop on a ferry to Calais find the nearest physio and ask a waiting patient what you should do about whatever ails you.

After a few months (a year tops) you will have heard all your PD nurse has to offer. Equates to 2 visits. After that you end up teaching them. As for GP's mine told me (with a big grin) he didn't know anything about PD. Like I was meant to be happy about it.

DONT READ ON IF YOU DONT WANT TO KNOW ABOUT MY POTTY HABITS OR YOU ARE AT YOUR BREAKFAST

The last (AND I MEAN LAST) visit to the GP related to urinary urgency.

Fearing Prostate trouble I went to the DOC. He dismissed me with "Your too young at 44 to have problems with that and from what I was taught about PD, that doesn't affect your bladder. Now watch the door doesn't hit you on your backside on the way out."

I added that last sentence, but the rest is verbatim. So much for 10mins per visit or even attempting to find the problem.

A year before I was dx'd at the age of 35 I was told I was too young to have PD.

#6
AT 44 I ALSO WAS TOLD I WAS TO YOUNG AND TO HEAR UR OWN GP SAY THEY DO NOT KNOW ANYTHING ABOUT PD IN SOMEONE SO YOUNG ISA SO DISHEARTNING...I AGREE WITH WHAT U SAID ABOUT PHYSIO AS WELL,I FOUND IT SO DEPRESSING,NECESSARY I KNOW...LOOKS LIKE I NEED TO MOVE TO FRANCE!

#7
My experience with NHS has been good so far, but I was recmmended by a friend to try the Feldekreis method. This is not a cheap option but a very good form of memory excercise. Look up on Google for your local practioner for more info.
good luck

#8
Thank you Iris, athough I feel the physiotherapy here, is more about the learning and the exercise of exercises, designed to physically help to restore a good muscle and nerve fibre tone to local and specific areas in the body. So that the physical aspects in synaspes can function and flow to the full and correct orientations, without the physical obstructions of damage,bruise and hardened cell walls; rather than a point of ones memory.

Regards
Andy