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------------------------------------------------------------------------- PD AND HORMONES PART THREE OF FIVE ------------------------------------------------------------------------- --------------------------------------------- Appendix 2 Personal Experience of PD --------------------------------------------- I watch my body systems malfuntion. I can't smell my food, my memory plays tricks on me, my hands can't do surgery any more, I fall asleep when I don't want to, my blood pressure regulator is acting up, my thermostat is sticky. My voice is weak and slurred, and my balance is poor. My gait is unsteady, and sometimes people think I'm drunk. My medication causes hallucinations and flashbacks. Too little and lethargy drags me into sleepy oblivion, too much and my mind races from thought to thought so quickly I can finish nothing. I am dragged on a Cooks tour of psychiatric symptomatology by L-Dopa, a drug whose hallucinogenic properties have not yet been discovered by the young. My lungs don't work properly, my hormones are out of wack, I can't work like I used to. My wife has left for a life of peace and quiet, so I don't need to worry about the libido and impotence. My bladder capacity has improved since I visited New Zealand, where the buses don't have toilets. No one knows what really caused my disease, although viruses, insecticides, heavy metals, pesticides, stress, the industrial revolution may have helped. I have this severe dandruff they call seborrhea, and my lungs don't work the way they should. Sometimes I can't think clearly. I need a small army of specialists. A skin specialist, a counsellor to help me deal with my losses, a psychiatrist to adjust the antidepressants, a psychologist to measure my cognitive functions, an occupational therapist to help modify the workplace, a neurologist because neurologists have a wealth of experience with Parkinson's Disease, a urologist to help with the plumbing, an epidemiologist to find out what caused it all, a physician to sort out the blood pressure, an endocrinologist to sort out the hormones, and a chest physician to breathe some life into the bellows. -----7------------------------------------------------------------------------ Date: Sun, 24 Sep 1995 23:49:17 +1000 From: Lloyd Stewart <[log in to unmask]> Subject: diamox ------------------------------------------------------------------------------ Someone asked for an explanation of diamox in one page. The best thing to do would be for someone to do a trial ------------------------------------------------------------------------------ TI: Acetazolamide therapy of menstrual-related fluctuations in Parkinson's disease. AU: Factor-SA AD: Department of Neurology, Albany Medical College, New York. SO: Mov-Disord. 1993 Apr; 8(2): 240-1 ISSN: 0855-3185 PY: 1993 MESH: Adult-; Carbidopa-administration-and-dosage; Carbidopa-adverse-effects; Drug-Administration-Schedule; Drug-Therapy,-Combination; Levodopa-administration-and-dosage; Levodopa-adverse-effects; Neurologic-Examination-drug-effects MESH: *Acetazolamide-administration-and-dosage; *Menstruation-Disorders-drug-therapy; *Parkinson-Disease-drug-therapy This is the only Medline reference to ACZ and PD, but the effect, if not placebo, may not be limited to premenstrual worsening of PD. Factor suggests a trial may be worthwhile. ACZ retains carbon dioxide which makes the blood acidic, which increases brain bloodflow, and stimulates breathing, which increases oxygen delivery to the brain, which is a suggested mechanism for improvement in PD, THE EVIDENCE FOR IMPROVEMENT IS PURELY CASE HISTORIES. Another way to create a mild acidosis is to rebreathe some air, using a supermarket vegetable bag. Once breathing becomes slow and deep, breathe some fresh air as well. An ill fitting plastic oxygen mask can be attached to the bag. If the mask is a tight fit, make holes in it with a hot darning needle on a cork. Breathing slowly and deeply, has the same effect. Ramos suggests rebreathing for half an hour three times a day, in addition to low dose ACZ and potassium, which comes in fruit. Alkalosis is too little acid or too much alkali, caused by eg too much antacid, and some diuretics. People who hyperventilate from anxiety lose carbon dioxide and become alkalotic, which causes nerves to fire at random, whereas acidosis stabilizes nerves which may relieve tremor. Alkalosis slows bloodflow and breathing and may not be good for brain oxygen levels. Angel Ramos proposes that in some cases there is a swing or oscillation from acidosis to alkalosis, triggered by lactate buildup. Lactate buildup usually happens with prolonged anaerobic exercise, but also in mild exercise if breathing is not increased in proportion, or, one supposes, if mitchondria are damaged, both of which are possible in PD. Some PD persons can hardly blow out a match, and have very soft voices, so it is easy to see the breathing system is not working properly. Diamox might make people worse if they already have high carbon dioxide, or low blood pressure. Low dose, 65 to 250 milligram/day, is possibly the way to go. Other respiratory stimulants, like theobromine in chocolate, may help, but one needs to eat up to a quarter pound block at a time. Sometimes one can improve exercise performance by breathing at the rate a normal eg swimmer or bicycle rider breathes. Getting L-dopa levels right is the first step, since the diaphragm is probably doing what the other muscles are doing. TOO MUCH ACIDOSIS IS A VERY BAD THING, AS IN COMA. Eye doctors and neurologists use diamox. PD is also a respiratory disease, and needs respiratory expertise in its management. -----8------------------------------------------------------------------------ Date: Wed, 27 Sep 1995 12:05:44 -0400 From: Marc Deslongchamps <[log in to unmask]> Subject: Re: girl day symptoms ------------------------------------------------------------------------------ Hi, Pam here. I have to tell you it matters a great deal to let all the other ladies out there who are on their monthly periods, that its effects are really manifested at this time. For example, the drugs do not have near the potency or effect as it would normally. I find the wear off period is sooner. Awhile back I filled out a question sheet at The Toronto Western Hospital in Toronto under the direction of Anthony Lang, and it asked everything to do about the Menstrual Cycle in women. It has to play a big part in our lives and a lot more research should be done on this particular topic. It makes only sense that when your blood and hormones are fluctuating as much as ours are at this time that the Parkinson's is going to be affected. Thank you. Pam Deslongchamps 43,13 -----9------------------------------------------------------------------------- Date: Sat, 30 Sep 1995 00:43:19 -0400 From: Joyce Tames <[log in to unmask]> Subject: Re: girl day symptoms/video proj ------------------------------------------------------------------------------ ..... if all the gals who experience this coincidental pd/menstrual problem can make almost the same video and present it to their local doc or pd organization, maybe some team with look into this with added interest to ease our double pain (pardon the pun) MAKE A VIDEO AS OFTEN AS YOU CAN (EACH DAY PREFERRED) SHOWING THE SAME THINGS....IE. STANDING STILL (HA HA), HAND IN FRONT, HOLDING A CUP OF WATER, CLOSEUP OF FEET TRYING TO MOVE, FULL VIEW (FROM THE BACK IF YOUR SHY) (TRYING) TO STAND AND (TRYING) TO WALK. MAKE SURE THE VIDEO IS PROGRAMMED TO SHOWN TIME AND DATE AND INTRODUCE EACH DAY WITH A NARRATIVE SUCH AS P+1 OR P+10 Also, you probably realize now that during ovulation there is also a marked change in symptoms. If you have the time... graph it on paper. You can even plan your GOOD days in advance. !!!!! ..... -----10----------------------------------------------------------------------- Date: Sun, 1 Oct 1995 15:55:56 -0300 From: Janet Paterson <[log in to unmask]> Subject: Hello and Hormones ------------------------------------------------------------------------------ Hello Everyone; .....the other thing I've noticed lately, and the reason I'm changing my status from 'lurker' to 'poster', is that my medications seem to become totally ineffective at a couple of points through the menstrual cycle - for a day or two at ovulation, and for several days before and after the start of my period. I've thought that this could be a sign of the dreaded 'M' word - Menopause. If so, what do the hormone fluctuations mean? Which hormones are causing the meds fluctuation - the ones that are on their way out the door, or the ones fighting for possession? Or should the question be - are the hormones affecting the medications or the PD symptoms? Several years ago, I received some literature from the Young Parkinson's organization in the U.K. (Yappers?) I remember seeing a description of a question and answer period after a Parkinson's panel discussion; a woman in the audience asked essentially the same question - and one of the doctors on the panel responded that yes, the hormone swings would certainly modify the medication's effectiveness. But that was it - I didn't see any follow-up discussion or information. The recent discussion of menstrual hormones and PD 'sang' to me - if this is such a clearly observed phenomenon, it's got to be worth investigating. Digging through the archives, I found the post from J.R. Bruman on 1st July, listing recent science publications, including: "Giladi N: Neur 1995;45:1028 - Cyclic menstrual hormone changes profoundly affect PD symptoms and the amount of medication needed." Click!! Does anyone know if this article is available on-line, and, if so , how I could access it? ..... Janet Paterson 48, 7 [log in to unmask] !!Bermuda!! -----11----------------------------------------------------------------------- Date: Thu, 5 Oct 1995 21:02:14 EDT From: Norman Ichiyen <[log in to unmask]> Subject: Re: De-lurk ------------------------------------------------------------------------------ .... Anyway, she went to her GP who suggested she take some medication for the depression. She started on Prozac and she turned her depression around almost immediately. I could see a huge change in her. She was more animated, smiling, upbeat, etc. Unfortunately the Prozac also made sleeping more difficult. So her GP switched her to Luvox, a member of the same drug family. The Luvox also helped tremendously with the depression (not as well as the Prozac) but she was able to sleep better. She has been on the Luvox for about 9 months now and it continues to work for her. It also has another effect for the women Parkinsonians in that it helps to smooth out the impact of the menstrual period problems (tiredness, sleeplessness, achyness, etc)...... Norm Ichiyen (P) Ruth Ichiyen, 46,5 Mississauga, Ontario -----12----------------------------------------------------------------------- Date: Fri, 13 Oct 1995 19:13:45 +1000 From: Lloyd Stewart <[log in to unmask]> Subject: Womens business ------------------------------------------------------------------------------ comment For those who speak Spanish there are several articles in Prensa Med Argentina by RAMOS, Angel, about acetazolamide and PD, with case studies, in men and women, including reversal of weight loss. Lower doses , less than 250 mg/day, are suggested, and one should watch standing blood pressure carefully. Tremor improved dramatically despite severe fall in blood pressure in the first case of a pilot controlled study, which got no further due to my lack of funds and possibly because the patent has run out, but mostly because the possibility of lower dose was not realised, and the mode of action, if any, seemed obscure. The video was quite dramatic, as impressive as any the surgeons showed. Using acetazolamide once a month is inherently safer than continuous use. Side effects include acidosis and potassium depletion. It stimulates breathing, so other breathing stimulants, including progesterone, may help. I speculated that PD might worsen as the level of progesterone falls, depriving the body of some respiratory drive. Women could study these possibilities, and technology to measure hormone levels is readily available. Those who start hormone replacement therapy might find a change in PD. One does not need to be an epidemiologist to see that PD is common post menopause, and I read that HRT takers may have less PD, one study for and one against, but it was in a news release and has not appeared in medline as far as I know. My own testosterone is down a little, and I speculated that anabolic steroids might help, but got no further. Women with PD should be outraged that their special needs have not been addressed. At least something is known of sexuality in men with PD, but nothing seems to be known about sexual response of women with PD. Men who take thioridazine, a dopamine antagonist, may suffer from difficulty maintaining erections, and premature ejaculation, as do some men with PD. One patient told me thioridazine made it difficult for her to climax, so perhaps PD has the same effect. -----13----------------------------------------------------------------------- Date: Wed, 15 Nov 1995 16:14:31 EST From: NAOMI NELSON <[log in to unmask]> Subject: monthly period ------------------------------------------------------------------------------ My husband and I recently meet with a 40 year old woman who had a pallidotomy last June. We told her about this internet service. She doesn't have access to an online computer, but asked us if we could find any information on how young Parkinson females were affected by their periods. She was also concerned about Parkinsons and Sinusitis. My husband remembered seeing a recent post about the period problem, but we couldn't find it. We are hoping that we can get some information about these problems so we can help out our new friend. Thanks Naomi and Ted -----14----------------------------------------------------------------------- Date: Wed, 15 Nov 1995 14:41:36 -0700 From: Dar Newman <[log in to unmask]> Subject: Re: monthly period ------------------------------------------------------------------------------ Hi I saw your posting and have information for you if you would like to reach me at my address it is [log in to unmask] and I will gladly share what I have with you -----15----------------------------------------------------------------------- Date: Thu, 16 Nov 1995 18:07:36 -0800 From: "J.R. Bruman" <[log in to unmask]> Subject: Re: monthly period ------------------------------------------------------------------------------ Naomi, tell your friend to ask her neuro about Diamox for menstrual problems- dramatic improvement reported in literature. -----16----------------------------------------------------------------------- Date: Sun, 26 Nov 1995 12:12:50 EST From: MRS MARY B MOODY <[log in to unmask]> Subject: Re: Let's see a show of hands! ------------------------------------------------------------------------------ 44 / 1 / FT-HS / yes (Melatonin, Benadryl) Additional info: much additional stress and some days no relief from Sinemet during menstrual time of month. ------------------------------------------------------------------------------ [log in to unmask]