[Manuel Fernandez]

It is so sensible to focus on this topic Mary. True, we all have our ups and downs (also when PD isn’t there) but my experience with PD does have some positive aspects. All thanks to a young neurologist who had the sad duty of telling me with certainty that, indeed, it was Parkinson and not a minor ear ailment as I had hoped. But as soon as she uttered the news she gave me the best advice I have ever received: “Dear Manuel, there are medicines you’ll have to take but the main one is already with you. Movement, Manuel. Keep always on the move! Jump, dance, walk, work with your hands as much as you can. Our body is made to move! As for balancing movement with mental health there is nothing I can tell you as I notice you are actively writing up your research. Just put a limit to the time you are sitting in front of a monitor and go out to move.”

As a young adolescent, at twelve, I was sent to a boarding school for poor children and I was there trained as a carpenter. I did work occasionally on that trade but I managed to move into the world of academia. After listening and pondering on the advice received, back at home I immediately made the arrangements to create a carpentry workshop in my garage, bought all tools and hand machines I could afford and began working with wood, sixty years after I had last done that.

That’s how the initial moments of depression faded away as I began my humble production of various items of furniture that I now see every day around me. And I was so proud when my wife mounted an exhibition and friends and neighbours came to visit and see the work done. That’s the lesson I learned and every now and again when gloom fills my mine I immediately thing about what I can make (not what I can do) to lessen the depression. And that helps me at all times. My PD keeps its sad course but I always find something I can make. I seriously think that the compliance with that initial advice of the neurologist had much greater efficacy that Sinemet and I do not fail passing on the advice to friends about to reach retirement: “Be careful, retirement is not a time for resting. It is rather a time to increase and enhance physical action. It is also the best deterrent for the inset of Parkinson at a late age.” That’s something I always think as a moral duty to pass on to other friends and I feel happy to have now written it here.

[Manuel Fernandez]

I have now found out that indeed, peripheral neuropathy is one of the the most common adverse reactions reported with SINEMET and this is stated on the original report of the CENTER FOR DRUG EVALUATION AND RESEARCH, the basic report on which the FDA approval is based. The date of the document is December 2008. (https://www.accessdata.fda.gov/drugsatfda_docs/nda/2008/017555Orig1s069.pdf).  References also can be found to later research that has proved this. More and more I am getting convinced that maybe I should stop taking Sinemet. Does anybody knows of reliable and safer alternatives for Sinemet?

[Manuel Fernandez]

I am gaining the impression that any cream helps. I had a problem with keratosis on my scalp and my dermatologist gave me an ointment to apply on any part of my head that would tend to get hard or irritated. I seemed to had felt a hard bit on my head so last night I put some of that medicine in my finger but I couldn’t find any hard bit spot on my head. As I was barefooted and had the finger with that ointment, I applied it between and below my toes  and the pain or burning disappeared for most of the night. It was one of my son’s who claimed this morning that all creams tend to evaporate at a very small rate and, in doing so, it absorbs heat from its surrounding area thus refreshing the part affected by the neuropathy. Just in case, the ointment is called Fucidin 20 mg/g cream.

[Manuel Fernandez]

I also have neuropathy. Mine started last year, which was my second PD year. It was localised to the middle point between the last two toes (4^th and 5^th, the smallest ones). My family doctor saw no association with my PD and sent me to see a neurologist different to the one that sees me for PD. The neurologist carried out an EMG (Electromyography) and the diagnosis was “discreet signs of pain on the peripheral motoneuron. Not recent and of radicular type at the EDB (extensor digitorum brevis: this is a muscle of the upper surface or dorsum of the foot)) and on the right tibial muscle). In human parlance: sensible damage on muscles of the lower leg, just below the knees, affecting capillary nerves below the toes.

As the pains were easing out, I asked my family doctor not to give me any new medicine. I had fears that any new medicine would worsen the side effects of Sinemet. Indeed, the problem disappeared shortly afterwards.

Now, two weeks ago the problem started again and it affected a bigger area: all inter-toe gaps and up on the instep. I saw my family doctor yesterday and he prescribed Gabapentin 300mg. (Mylan Generics). He checked that there would not be a clash with Sinemet. I got the medicine and on reading the first warning I decided not to take it. It said that in case of feeling a pain on the upper part of the stomach it was necessary to seek immediate medical attention because that could be a shock of acute pancreatitis. As I already had an episode of acute pancreatitis, I am well aware of the high risk of sudden death (3 out of 100 patients). So, the only relief I get is by immersing my feet in cold water for 5 or 10 minutes and that gives me a couple of hours of sound sleep; always with my feet uncovered. Last night I applied something simpler: I laid a piece of plastic besides my bed and placed a folded wet towel on top. When the pains waked me out I put my feet on the wet towel and folded it to cover also my instep. Thus, I avoided the nuisance of going to the bathroom to submerge my feet. This all is very painful affair.

[Manuel Fernandez]

Jacque’s comment helps me as a prompt to provide an update to my low blood pressure difficulties and its interactions with Sinemet. The frequent serious difficulties generated by that combination rendered me a complete invalid with the frequent episodes of syncope and the complete inability to keep standing and walking. One day when I was taken to hospital for an urgency connected with an urinary infection, as it was a very busy day at the emergency unit I had to wait for about two or three hours thus missing my midday Sinemet pill. On arrival home, as we had guests that evening, I immediately began my cooking and dinner was ready right when the guests arrived. So, we had dinner as they came and I missed my evening Sinemet pill. When the dinner was finished, as I stood up besides my chair, I began to help clearing the dinner table and, to my surprise and wonder, I was able to walk as had not done for the past two years. The next day I rush to see my family doctor and showed her how dropping Sinemet had left me in excellent conditions. Then she agreed to let me stop Sinemet and see how the situation would evolve. Nearly four months have passed now  and my PD condition began to worsen.

I have therefore surrendered to Sinemet but under my terms. After several alternatives were explored I have finally settled with a reduced dose; half the originally prescribed. I therefore take just half a pill three times a day. There is still some discomfort but I can stand it and, after a month with this change, my condition has improved. I informed my family doctor and she said it was fine to go ahead like that and see what the neurologist would say in the next control.

[Manuel Fernandez]

Allow me a marginal follow up comment dear Jean.

It’s about reading on a device. I also dislike using a cellphone, a tablet or a laptop but I have discovered the beauty of reading on my personal computer using a large HD monitor, much better suitable for a shaky hand and, on reading books, I can display two pages at once and concentrate fully just on reading without the need to use my hands for keeping the book open and for turning pages. I can also size the characters and the page display at will. The major virtue for me is to be able to navigate the web and enjoy admiring the display of huge HD works of art from museums around the world. I have never bought a cellphone because I  usually inherit those classed as obsolete by my sons and I hardly use them. Sometimes I scan a book in order to read it on my large screen. A superb HD monitor costs a fraction of what a good cellphone does and those of the latest generation have a built-in protection for our eyes and there are glasses also that would protect our sight.

I hope you find a good djembe drum. A have a son who loves percussion and he tells me that those drums have to be selected with care to check the quality. More important than the drum and its quality is the opportunity to interact with friends sharing the same interest. I wish you all the best in this endeavour.

[Manuel Fernandez]

Dear Jean, I have not tried Zolof or anything similar. When for the first time my lady neurologist told me that there was nothing wrong with my hearing and that such was not the cause for my difficulty in keeping my balance but rather the possibility that I had been struct by Parkinson, this came as a tremendous shock. Further visits confirmed the diagnostic and the wonderful neurologist of my second visit told me something that will remain in my mind and in my consciousness forever: “Don’t think about what you cannot longer do; think about the numberless things you can do.” Then I did realise that, at that stage, there was nothing I could not do if I could just try. As I wrote somewhere else, she asked me to use all my physical capabilities and stop being just in front of a screen writing up what I was writing. So I tried to attempt new things in my garden, working with wood and other minor things like cooking, etc. At one point it downed on me that I was no longer depressed because, notwithstanding the increasing difficulties, I did not have the time to think about that. I recovered my lost enjoyment of going to bed terribly tired and enjoying sound sleeping instead of my frequent insomnia. In my search for answers I did find many comforting replies. One for coming across several readings like a fundamental one I accidentally found online that had just been published. I checked it now and it is still there with its title “The Neurowriters’ guide to the peripatetic pursuit of Parkinson disease” which you can google. If we are allowed to insert links in this forum, this is the URL: http://www.parkinsonscreativecollective.org/pdf/Peripatetic_Pursuit_of_Parkinsons_Disease.pdf . I do hope you like it.

Finding these forums also gave me the comfort of reinforcing the conviction that we are never alone and it was your initial greeting that made my day on that day. I have to thank you for that and for all the work you perform to keep all of us connected. Forget about Zolof. Life is always beautiful!

[Manuel Fernandez]

I get appointments to see my neurologist ordinarily every six months. We all have in Italy a family doctor available five days a week and she/he can request a special neurological appointment at any time  she finds it necessary.

[Manuel Fernandez]

Yes Jean, I did say that but in connection with my particular condition of low blood pressure. Sinemet might have had a positive effect on my PD but its lowering further my BP left me practically invalid. No wonder that dropping Sinemet in my condition greatly improved my overall conditions and I feel better than when taking that medicine.

[Manuel Fernandez]

Dear Jean, I think selegeline did work for me, As Andrew, I also was prescribed selegeline at the onset of my PD with a low dose of one 10 mg pill a day, taken at 8:00 o’clock every morning. No side effects and slightly less trembling of my hands. With time, after a year, the symptoms returned and selegeline beneficial effects might have slightly worn off or the speed of the normal progress of PD was faster and higher that the positive effects of selegeline. I am still taking it with the same dose and I have the impression that dropping Sinemet has resulted in an improvement in my condition as I now have returned to the level of physical activity I had when my symptoms started. As I wrote earlier, my impression is that my daily fasting routine is helping.

[Manuel Fernandez]

I do use Selegeline (brand name Jumex) from the earliest stage of my PD, two years ago, and still use it It has given me no trouble and I think it arrested the speed of development of the disease.

[Manuel Fernandez]

You are right Jean. I do not think anybody should try unusual things. It is my anomalous case of constant low blood pressure that prompted me to act in the way I did.

A related question: has the Sinemet supply eased now? I never knew the outcome.

My best regards to all

[Manuel Fernandez]

My historical values for BP are so easy for me to always remember. The average was 100/50, Now that I dropped Sinemet I feel my state as a little better than in the period prior to starting with Sinemet. It may be, I thought, that besides all the trauma I suffered with Sinemet, on dropping it I feel better probably because Sinemet not only caused my troubles but also produced a beneficial improvement on my Parkinson condition. It may happen now that without Sinemet those positive effects might wear off but so far and for the last month, I just feel so happy with my current conditions and I am in full harmony with our faithful friend Mr Parkinson. I should add a detail that might be relevant: I am now back to my writing up a book I had left unfinished and that helps me to keep a long period of fasting during the day because I have my last dinner at 7 pm, work on my writing till 2 o 3 o’clock at nights and get up late the next day, at about 11 am. I then skip breakfast, except for my big glass of pure orange juice, and have my lunch at 1 pm. So, in practice I fast everyday from 7 pm in the evening to lunchtime the next day. It might be an illusion but I have the impression that it does improve on my condition a little bit. Time will tell.

Thanks for asking dear Jean.

[Manuel Fernandez]

Yes, I did and this has been very traumatic in my experience, Many years ago, when our faithful friend Parkinson was totally out of my thoughts, my family doctor measured my blood pressure and was very surprised. With a smiling face she told me “With this low pressure you have you should not be alive.” She asked me whether I felt moments of drowsiness or sudden states of weakness and I replied saying that I have never felt any strange symptoms. With some fear I asked her whether there was something we had to do about it. She answered: “If you feel fine then you can keep it. No fears. In several ways this is beneficial to you.”

This might have been beneficial in the past but no longer so under the company of our friend Mr Parkinson. On being prescribed Sinemet I simply collapsed with frequent episodes of syncope and states of lethargy, besides the constant nausea and vomiting, with all that keeping me invalid in bed all the time.  Naturally I informed my family doctor and she told me not to wait for the next programmed neurological control and slowly start dropping Sinemet. I did so and now feel much, much better, happy with my old symptoms and back to doing and making things I had had to abandon because of Sinemet. I shall see what the neurologist will say in the next control, but under no condition shall I come back to Sinemet for my treatment. I am aware, nevertheless, that Sinemet is fundamentally important and beneficial for most PD patients, mine being maybe a unique case due to my permanent state of low pressure.

[Manuel Fernandez]

Not voluntarily. Nine months ago, I was struck by a sudden acute pancreatitis shock and was interned urgently in a hospital. The first provision taken by the surgeons was to put me under a treatment that included a six-day fasting to protect the pancreas that was irritated. I was later operated to unblock my common bile duct and two or three days afterwards, despite my post-fasting and post-operative condition, I found it slightly easier to walk along corridors in the hospital. The positive effects lasted me for about a month with a feeling to have achieved a slight permanent improvement. On informing this to my neurologist, a young and bright doctor working also as a researcher, she told me that the improvement might have been a result from both the fasting and the easier digestion of food thanks to the free movement of bile and enzymes through my bile duct. I learned two things, therefore, that fasting and food metabolism do have a bearing on my PD.

[Manuel Fernandez]

I was hesitant to write what I wrote Jean. I have two close friends who also suffer from PD and the state is so advanced that it would be utterly impossible to do any of the things I mentioned. Maybe I should have added that everything I do has required special arrangements. I do my gardening mostly sitting on a stool, I am writing this with a pillow on my lap so as to support my arms and keep my hand steady and I always keep at hand a walking frame, although I have no difficulties in walking on my own, albeit hesitantly.

[Manuel Fernandez]

Besides the shattering impact of being diagnosed with PD and undergoing the ensuing effects, there are nevertheless aspects of the resulting new life that, strangely enough, rather improve on our quality of life. Four years ago, when my doctor detected a suspicion of PD she asked me what I was currently doing with my life. I told her I had retired 10 years ago and had spent those years mostly sitting in front of a monitor writing up my research work for publication. She wisely told me: “Well, now you must stop doing that and start using your body. Walk, jump, dance, work with your hands, be active; that’s what your body is made for.” Overburdened with fears then I did stop my editing work and, at 78 years of age returned to my earliest trade: I was originally a carpenter 60 years ago, so I began by building a stock of power and hand tools and began to make small items of furniture I felt were missing in our house. Working with extreme care, my trembling hands did not produce any self-injury when handling power tools and I could even use sharp chisels keeping all my ten fingers intact. Even when PD did not exist for me, I never thought to be able to do/make manual crafts. My garden also benefited from my PD as well as my self-esteem and I must thank PD for that. I have come back to my writing up now but never for more than four hours in the day. Attaching a felt pad below my mouse avoids the effects of my shaking and I no longer get multiple identical characters when trying to key-in just one on my keyboard.

[Manuel Fernandez]

I am at Staranzano, a small village in North Eastern Italy, not too far from Trieste